GF/Food Allergy/Autism Bloggers, How They Help

There is no doubt that, blogging has become huge and it is because all you need is a computer. Anyone can be a blogger..writing about things you are passionate about. Your blog can be all about your family, or child, or job, or hobby, the possibilities are endless.  The best part is that you don’t even need to have followers!

My passions are celiac disease, food allergies and autism. However; I reluctantly moved into the blogging world. For those of you who first started getting my newsletter back in 2010, you know that I put many articles in the newsletter each week. Sometimes it would take me 5 hours to get it all together. My problem was two-fold: I needed to cut back on the content and the newsletter was not archived. This meant that readers would be calling me asking me to email them an old newsletter or article. I had to make it more manageable by having all articles in a central place so my readers could get to new and old information any time.  So, when I had the web-site re-designed, we added a Blog Tab. (I still have not transferred over all articles yet!)

I started reflecting on what GF, Food Allergy  and Autism Bloggers “bring to the table”.  First, they serve as a voice for their communities. These communities offer acceptance, understanding and support 24-7!  You don’t need to wait for the monthly meeting for some support or a sympathetic ear;  you just turn on your computer and you are set. Instant gratification!

This is so important to those with Celiac Disease, Food Allergies and Autism.  Why?  Because if you or a loved one are affected by any of the above, you are subject to scrutiny.  Unfortunately, much of the general public feels that the Gluten Free Diet is just a fad diet, that food allergies are just made up and Autism is just a symptom of a discipline problem that you have with your child.

I can’t tell you how many stories I have of my own about being made fun of, about invalidation and doubt from friends and family.  There are customers who tell me stories of a family member dangling shrimp in front of their child who has a shellfish allergy. The family members and friends who doubt your Celiac Diagnosis and talk behind your back.  The friend or family member who thinks that Autism is made up because “the parent does not want to parent” and hearing “we all did our homework by ourselves growing up…we didn’t need an adult next to us the entire time, he just needs to be disciplined and you need to stop spoiling him and giving into his whims”.  Or we hear, “I know how you feel.”  When they have no idea what you are dealing with.

Well, that is exactly the crap we have to live with folks.  Having bloggers who give a place for sharing and caring in the areas of Celiac Disease, Food Allergies & Autism is so needed and so appreciated.  These bloggers create a community that is so far reaching and inclusive by educating, sharing and giving a voice to those who often have no outlet or support system. Sometimes we just need someone to help us find our sense of humor again.

Why has blogging exploded? Well, sometimes, even our doctors are not a support system…they don’t have the time and in some cases they just don’t have the knowledge; leaving some suffering; un-diagnosed for far too long.  Support groups meet monthly or quarterly and sometimes you just can’t wait that long.  Often, you are in overwhelm and need some support before you explode. You need someone to actually listen to you; not invalidate you. Someone who will actually hear what your are saying; people who are going through the same thing and support you….. via your favorite blogger!

Turn on computer; find favorite blogger and you can be “HEARD” almost immediately! 

Thank you to all of you great bloggers out there. You help keep us sane while dealing with   Gluten-Free Diets, Food Allergies and Autism. Thank you all for being there to catch us when we fall and most importantly educating us and helping us keep our sense of humor .

There are so many great blogs! Here a just a few of my favorites:

GF Blogs: Gluten Dude, Gluten Free Girl, One Dish Cuisine

Food Allergy Blogs: Food Allergy Mama, Allergy Eats (Paul Antico)

Autism Blogs: Autism Daddy, Confessions of an Asperger’s Mom

Click Here to vote for GF Bloggers

support 3

 

Vitamin D: “You Are What You Absorb!”

“You are what you absorb!” If you are eating foods rich in Vitamin D and are not absorbing it, you are only as good as what you are able to absorb! (Think Celiac, think Leaky Gut or Gluten Intolerance/Sensitivity). Vitamin D plays a big role in our immune system, our hearts, bone strength and even cancer.  Do you know your levels? If not, you should ask your doctor to order the blood work the next time you are in for a check up.

I will go over why we have Vitamin D Deficiencies, Symptoms of Deficiencies, How Much Vit D is enough and How Much is Too Much; or toxic. (Recently, my doctor had to reduce my Rx of Vit D) You will see that it really depends on who is looking at your levels! I use myself as an example and also went to several different sources for this blog post and I think you will find the information very interesting.

First, I will be giving you information that I get from Amy Myers, MD.  This is the most thorough information I have seen on Vitamin D and it is easy to read and understand, even if you don’t have the letters “MD” after your name.  Everyone should get their levels checked because 36% of healthy adolescents and 57% of adults in the US have a deficiency. According to Dr Myers, they believe those numbers may be even higher because the previous recommended levels of vitamin D were too low!

Dr Myers says; “The widespread deficiency of Vitamin D is concerning because it plays an important role in many areas of our health. It contributes to bone strength, heart health, and cancer prevention. And, it plays a hugely important role in your immune system and can be a determining factor in whether or not you develop an autoimmune disease.”

There are 3 reasons this occurs:

  1. We don’t get enough sun exposure, we do we put sunscreen on & reduce it by 90%

2. Our diets lack vitamin D (salmon, fish liver oil, organ meats, beef liver, egg yolk)

3. Fat Malabsorption

The two foods most fortified with Vitamin D are breakfast cereals and milk.  Mmmmm, I am screwed because cereals contain gluten and milk is; well, it is milk and I can’t have that!

Fat Malabsorption: One thing that surprised me is that she talked about fat malabsorption. Vitamin D is fat soluable. So, that means that your gut will have to absorb fat in order to absorb Vitamin D. (Could this be why my cholesterol is low; usually between 118-127?)

Vitamin D also needs Vitamin K because it works in tandem with Vitamin D and makes sure the Vitamin D ends up in our bones and not in our arteries.  She also says to make sure we have Vitamin E and Vitamin A because they work with Vitamin D as well.

I know I have fat malabsorption. This, has always been a problem for me and it also contributed to a lot of clogged toilets prior to my celiac diagnosis. If I eat anything fatty, I see it in the toilet, it looks like a bunch of oily and undigested fat. (I ate some wings on the Sunday of Memorial Weekend and it is a good thing we were at home on Memorial Day!)

Vitamin D is a fat-soluble vitamin, meaning your gut has to be able to absorb dietary fat in order to absorb Vitamin D. The saying goes “you are what you eat,” but in reality, Dr Myers says that “you are what you absorb”.  She goes on to say; “if you have a leaky gut because of inflammatory foods such as gluten, infections, or toxins, your ability to absorb nutrients and vitamins may be severely compromised”.

I had to beg a doctor to check my levels and when they were finally checked, my results were  2 and a 7;  I was given an Rx . I was definitely feeling better, my neuropathy went away and on my last check up, I was at 50 thanks to 50,000 IU Rx supplementation. But I was having some complications that my Endocrinologist was not taking into consideration. (more on this later)

However, Dr Myers suggest we aim for between 60-90 ng/ml. (I address the different recommended levels in a chart below) For more information from Dr Amy Myers on Vitamin D and it’s Impact on your Immune System (Protective Immunity and it’s role in Autoimmune Disease and How to Increase your Vitamin D with Vitamin K) Click Here for info from Dr Amy Myers

Symptoms of Vitamin D Deficiency?

Vit D Deficiency is common in people with untreated Celiac Disease but you don’t have to be a Celiac to have a Vitamin D deficiency; which effects digestive, glandular, immune, integumentary, muscular, nervous and skeletal systems via:

Impaired bone mineralization, muscle weakness, alterations in maintenance of calcium and phosphorous hemeostasis, metabolic functions, male reproduction and is implicated in psoriasis.  Also, Bone Pain, Easy Fractures, osteopenia/osteoporosis, (bone thinning), osteomalacia (bone softening), in adults, affecting the spine with vertical shortening of the vertabrae, the pelvis with flattening and narrowing of the pelvic outlet and the lower extremities with bowing in the long bones, muscle weakness, defective coordination for walking, osteomalacic myopathy and spasm, psoriasis, decreased male fertility.

In young children, development of rickets with bone bending of the weak shaft and delayed walking in 1-4 year olds. In older children walking is painful with development of bow-legs and knock-knees.

*These symptoms are often seen as a result of  malabsorption in Celiac Disease. Celiac related deficiency responds to the gluten free diet and supplementation produces rapid resolution of symptoms.  Source: Recognizing Celiac Disease by Cleo J. Libonati, RN, BSN

HOW MUCH IS ENOUGH VITAMIN D?

There are different recommended levels depending on who is looking at your results as seen in the chart below. My endocrinologist was fine with me at 50 ng/ml; see the chart below. However, my Internist (my new General Practitioner) thinks that is too high. (this will all make sense at the end of this) I did some checking and all sources say something different.  Below is what I found:

Vit D recommended levels

NIH (National Institute of Health) also has some different info: 

 
nmol/L** ng/mL* Health status
<30 <12 Associated with vitamin D deficiency, leading to rickets
in infants and children and osteomalacia in adults
30 to <50 12 to <20 Generally considered inadequate for bone and overall health
in healthy individuals
≥50 ≥20 Generally considered adequate for bone and overall health
in healthy individuals
>125 >50 Emerging evidence links potential adverse effects to such
high levels, particularly >150 nmol/L (>60 ng/mL)

* Serum concentrations of 25(OH)D are reported in both nanomoles
per liter (nmol/L) and nanograms per milliliter (ng/mL).
** 1 nmol/L = 0.4 ng/mL

Reference Intakes

Intake reference values for vitamin D and other nutrients are provided in the Dietary Reference Intakes (DRIs) developed by the Food and Nutrition Board (FNB) at the Institute of Medicine of The National Academies (formerly National Academy of Sciences) [1]. DRI is the general term for a set of reference values used to plan and assess nutrient intakes of healthy people. These values, which vary by age and gender, include:

  • Recommended Dietary Allowance (RDA): average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy people.
  • Adequate Intake (AI): established when evidence is insufficient to develop an RDA and is set at a level assumed to ensure nutritional adequacy.
  • Tolerable Upper Intake Level (UL): maximum daily intake unlikely to cause adverse health effects [1].

The FNB established an RDA for vitamin D representing a daily intake that is sufficient to maintain bone health and normal calcium metabolism in healthy people. RDAs for vitamin D are listed in both International Units (IUs) and micrograms (mcg); the biological activity of 40 IU is equal to 1 mcg (Table 2). Even though sunlight may be a major source of vitamin D for some, the vitamin D RDAs are set on the basis of minimal sun exposure [1].

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D [1]
Age Male Female Pregnancy Lactation
0–12 months* 400 IU
(10 mcg)
400 IU
(10 mcg)
1–13 years 600 IU
(15 mcg)
600 IU
(15 mcg)
14–18 years 600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
19–50 years 600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
51–70 years 600 IU
(15 mcg)
600 IU
(15 mcg)
>70 years 800 IU
(20 mcg)
800 IU
(20 mcg)

* Adequate Intake (AI) Click Here to go to NIH

Symptoms of Too Much Vitamin D (toxicity):

According to the Mayo Clinic, the main consequence of vitamin D toxicity is “a buildup of calcium in your blood (hypercalcemia), which can cause poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Although vitamin D toxicity is uncommon even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics. As always, talk to your doctor before taking vitamin and mineral supplements.”  Mayo Clinic Too Much D

So, who do you listen to? Well you always listen to your doctor, but again, I think you need to listen to your body (and so does your doctor). On the mega Rx dose of Vitamin D, I was definitely having increased urination, more frequent kidney stones and I also take two thiazide-type diuretics.  So, my GP (internist) looked at my numbers and the other factors adversely  affecting my health and reduced my dosage. We will do blood work in 6 weeks to see what the result is, but I have not had any major stones. (FYI: I recently changed my GP to an Internist who looks at the whole picture and how everything affects my overall health. Not only does she understand Celiac Disease, she and her daughter have Celiac Disease and I believe this is the best decision that I have made for my health!)

I hope you found this information helpful.

 

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Guess Who Came to Dinner?

0073_OneDish_6_3_14

Yes, that is Dr. Alessio Fasano, of the Center for Celiac Research and Treatment at Mass General. We had the pleasure of having Dr Fasano and his son back in the cafe for dinner this week. I was able to ask him a few questions in between.

I chose the questions that I get asked about the most by customers and those that affect me as well. My questions were about Gluten/Celiac Disease and it’s role in Autism, our Kidneys, our Skin and our Brains. I also asked about Glyphosate (Round Up) and it role, if any, in Celiac Disease.

Autism:

As many of you know, I have two nephews with Autism, so I have always been very interested in the connection between Celiac Disease, Gluten and Autism. Dr Fasano and Autism Speaks have been looking for a connection between Autism and Celiac Disease anf gluten . As of now, Dr. Fasano says that “about 5% of Children with Autism have Celiac Disease and most are Gluten Intolerant.”  Dr Fasano says “we know Gluten is a factor in Autism but we don’t know why.”

Glyphosate (Round Up) Sprayed on Crops:

Over the past year or so there has been a lot of information circulating on the web about Glyphosate, which is the ingredient used in Round Up weed killer.  It is also used on our crops to increase the yield before harvesting. Corn is one of those crops. So, I asked him about the connection, if any, between glyphosate (Round Up) being sprayed on our crops and if it is contributing to gut permeability (leaky gut) leaving us open to Celiac Disease.  He said that “we don’t know enough about it yet”. That tells me there are more studies that need to be done.

Celiac Reactions & Complications; Kidneys, Skin and Brain:

Kidneys: I also shared with Dr Fasano what my Nephrologist has told me about Celiac Disease and IgA Nephropathy (Berger’s Disease); the filters on my kidneys don’t work right and the little doors to the filters are getting the wrong message. So, I asked him what his thoughts were. He said;  “absolutely, it is very closely related to Celiac and sometimes the soldiers (immune cells), leave the intestine and attack other tissues, like those in the kidneys” (gallbladder, thyroid, brain, etc.).

I was telling him about my severe reaction after accidentally getting “glutened” in Jan 2015 and a new symptom I had after this episode. Normally for me, within a few hours I have severe acid reflux, the next morning I have a migraine followed by diarrhea and vomiting at the same time, then I get major bloating and knife like pains in my stomach. Then, within 24 hours I get flu like symptoms, severe fatigue and can not get off the couch.

Skin: On about day 3 or 4 I get a Dermatitis Herpetiformis (DH) rash and that itches and oozes and hurts and then the joint pain kicks in. I told him that I had a bad case of DH on my scalp, buttocks and arms and before I could say it he said: “it took 8 months to clear up”.  He was right on the money, I got “glutened” in January (I did a blog post about this) and it did not clear up until the end of August! (It cleared up because I had no further exposure to gluten. DH is most often misdiagnosed as eczema. It (the rash) can be biopsied for a Celiac Diagnosis, if you have this, bring it to you Gastroenterologist’s attention.)

Brain: By day 4 I had Ataxia (walking into walls, tripping and falling and speech issues).  New Symptom for Me: However, this time, by day 5 or so, I had MS like symptoms in my right arm and leg with heavy twitching. I had to pull over and it lasted for several minutes. He said “absolutely, it’s the inflammation; because it can affect the brain”.

I hope you found this information helpful. It was a pleasure having Dr. Fasano and his son back at One Dish Cuisine Cafe, Deli and Bakery! I know you want to know what Dr Fasano had for dinner. He and his son enjoyed our Eggplant Parm. Also, I know someone will say that the cafe looks different in the photo. It does look different because this photo was taken the last time he was here, for his book signing, in 2014.

 

Public Perception Of Celiac/Food Allergies

restaurant-gluten-free-joke

We all get to that place of utter frustration when it comes to dining out safely.  We walk away shaking our head saying “they just don’t get it”. Why is it so hard to eat out safely and how can we educate the public in order to change this? Let’s explore our plight and several ways that we can change the public’s perception.

Those who have Celiac Disease feel this frustration but we need to remember how much easier it is for those with Celiac Disease (CD) or Gluten Sensitivity (GS) than it is for those with life threatening Food Allergies (FA).  If you have both; it can be next to impossible to dine out. Those with Autism experience this when they put their child on a gluten-free or other special diet.

I feel like the Celiac Community just wants it all and they want it now; not really understanding why it is so hard for a restaurant to safely feed them. (Keep reading, I will tell you the top 4 obstacles to safe food)  Many clearly expect every restaurant to be able to safely serve their dietary needs.  For those with severe food allergies, they know it is life or death for them, so they don’t make such a big deal about it and simply choose to go without because it is safer. Yes, it is hard if you have CD or GS but it is even harder to have FA and that is why those with FA don’t take risks dining out because most places really don’t get it.  Think about it Celiacs; if cross contamination could kill you, would it be worth all of the risks that you take when dining out?

Where is the awareness? In Maryland they passed a Food Allergy Bill, but it is only voluntary. Only 3 of more than 30k restaurants took the training! Mmmm, it seems like the serious nature of a Food Allergy or Celiac Disease is not getting through to the general public.

Then, last month, Ted Cruz (running for president of the US) made an uninformed comment promising that he would not support the military supplying Gluten Free (GF) MRE’s (Meals Ready to Eat) to those who needed them. MRE’s are often used when deployed in remote areas.  This comment hit close to home for me and shows just how ignorant the masses are about Celiac Disease and Food Allergies. (A person with a wheat allergy would need GF MRE’s). I thought to myself; how can anyone be so uninformed? Yet, as I pondered this, Ted Cruz is certainly not alone when it comes to his ignorance about Celiac Disease or Food Allergies.

On Sunday, a friend and customer, Ben Andrasik, stopped in the cafe for a meal and some treats for his kids.  Ben served two tours of duty with the military in Afghanistan and wrote a book about his struggle and survival without GF meals. It gave us a chance to catch up and chat about some things. We discussed the public perception and we both feel that biggest struggle we face is lack of public awareness or understanding of the seriousness of Celiac Disease and Food Allergies. (You can read Ben’s book here at our cafe, it is in our library and it is called Gluten Free in Afghanistan by Cpt B. Donald Andrasik. You will have a chance to win a copy of his book at the end of this post.)

Contrary to what you might think; you can serve in the military if you have Celiac Disease. They just don’t go out of their way to safely feed you.  However, the military will accommodate a person who chooses to be vegan. Mmmmm.

 

The Top 4 Obstacles to Safe Food:

-# 1 Lack of Education of the general public about the seriousness of Celiac Disease and Food Allergies. The general public only hears about people eating gluten free as a diet trendnot as the only prescription to treat Celiac Disease.  In my opinion, that area is where our Celiac non-profits are failing us. The general public does not think Food Allergies are serious until someone they love has an anaphylactic reaction and this is shocking to me.

Let’s explore some statistics in the chart below. Notice how many Americans are living with Celiac, Food Allergies and Autism. Then look at the other diseases and how many are living with them. The numbers are far less for the rare diseases, but we all know what those rare diseases are and would not diminish their legitimacy or the prescription given to those who suffer from them! Since when does the only “prescription” to treat a disease come only in a “pill” or “injection” form from a pharmaceutical company? Why does the lack of a “pill” make Celiac Disease and the Gluten Free Diet not a legitimate disease and treatment?

I put this graphic together back in 2010 and it is still relevant today with a few updates to it…but it is still shocking.

CDGSAutismAllergies Photo

Given the numbers above, you would think that Celiac Disease and Food Allergies would be a top priority in the United States, but they are not viewed as legitimate by the mainstream public! Lets look at the totals as compared to Type 1 Diabetes:

Celiac Disease: 3 Million plus  18 Million Gluten Sensitive  = 21 Million

Food Allergies: 9 Million Adults plus 6 Million Children      = 15 Million

                                                                                                   Total = 36 Million Total

Type 1 Diabetes:                                                                               = 3 Million Total

How did we learn about many of the above rare diseases? Were we taught about them in high school? No. Did we have a family member with one? Possibly.  Primarily, we learned what those rare diseases were by their non-profit organizations and foundations raising awareness in mainstream media; via ads in TV, mainstream magazines and newspapers.

Remember Jerry Lewis doing telethons every Labor Day weekend for Muscular Dystrophy?  We hear about ALS (Lou Gehrig’s Disease), who did not see the “bucket challenge” last year?  All of the above rare diseases have gotten the word out because their non-profit foundations are utilizing mainstream media in addition to marketing to those affected by the disease.

There are just as many people living with Celiac Disease as there are with Diabetes..many have Celiac too, but you would never know it when it comes down to the attention given to each! If Type 1 Diabetes could only be treated by diet and there was no insulin, you bet your “arse”  restaurants would be pandering to this population.  However, Diabetics have two Rx’s; diet and/or insulin. Diabetics control diet by counting carbohydrates & reducing sugar.  Sugar and carbohydrates are required to be disclosed on nutritional labels making it much easier for a person to manage their diabetes.  Yet, a Celiac must avoid Gluten, and is not required to be disclosed on labels. Mmmmm.

#2: Gluten is not required to be labeled or disclosed on nutritional labels. This is the main reason that mainstream restaurants struggle to feed Celiac’s safely! Yes, the Gluten Free Labeling Law passed; but it is not mandatory; it is voluntary only. In the US they only have to disclose wheat! Rye and barley don’t need to be disclosed and gluten can hide in many forms, natural flavors is one place. Mainstream products don’t need to tell you if there is gluten in them or not, they tell you if they want to!  In the US, they have to tell you if the recipe includes the top 8 allergens: wheat, milk, eggs, peanuts, tree nuts, soy, fish, shellfish. Did you notice that rye and barley are not on the required list? (In Europe and Canada this is less of a problem because they label gluten and many additional allergens).

The #3 Reason: Manufacturing companies don’t need to prevent cross contamination! Yes, you read that correctly.  They only have to tell you what is purposely put in the product and if it contains the top 8 allergens. They don’t have to tell you if they accidentally contaminated the product with any allergens or anything else when processing or packaging.  They are also allowed to use the term “natural flavors”; so they don’t give away their “secret” ingredients; which could be anything!

#2 and #3 are why mainstream restaurants can’t safely feed you!  Really, come on, why would you expect them to get it right given the above? Are you having a light bulb moment?

The #4 Reason: We are not being heard by the general public! Currently, our associations are only getting the word out in media that is targeted at those of us already living with Celiac Disease or Food Allergies! We will never be taken seriously if the mainstream public is not educated and the mainstream media is only talking about Gluten-Free Fad Diets rather than Celiac Disease &/or Food Allergies.

Open any GF/AF Magazine and you usually see an ad from one of our associations. However, you don’t see this type of ad in mainstream publications.  So, when a person running for president of the US is clueless about Celiac Disease and does not know that the GF Diet is the only Rx for it..that tells me our message is not being heard by the general public.

On the contrary; if Ted Cruz made a remark like that about diabetics and pledged not to provide insulin or a low carbohydrate MRE’s for diabetics in the military and did not know what diabetes was; we would all say he is clueless and not fit to run for president being so un-informed! The world knows about diabetes. The world and the mainstream media don’t know about Celiac Disease or the seriousness of it because our message is not being heard!  Isn’t that amazing when there are just as many people with Celiac Disease! (not to mention Gluten Sensitivity and Wheat Allergies)

How Do We Get the Attention Needed for Celiac and Food Allergies?

We can whine and complain about not being respected but that does us no good.  What we need to do is demand that our support associations spend some of our donations on a media campaign to get the word out into the mainstream. If you flip through a gluten free magazine or food allergy magazine you see ads for associations.  I would love to see those ads in Time Magazine, People Magazine or in major newspapers. They would just need to gear the ad towards the seriousness and symptoms, thus creating awareness.  By putting the advertising money into mainstream news media; the public will be educated about the seriousness of our plight. It will raise awareness and diagnosis rates! (The Autism community has done a great job about getting their message heard). Even my local Quest Diagnostics advertises symptoms of Celiac Disease and the blood test for it in a big poster in their waiting room.

Our dining out problems won’t be solved until there is a ODC Cafe, Deli, Bakery in every major city or if we change our labeling laws, manufacturing regulation and educate the public about Celiac & Allergens..

Beaver and Wally

“Gee, Wally, I wonder which one will happen first?

“Ah, come on Beaver, I am thinking more ODC’s!”

Without comprehensive changes in all four areas, it is useless. Example: the voluntary GF Labeling Law is not currently enforced because it is voluntary without oversight. Hence; General Mills recalled 1.8 million boxes of not really GF Cheerios.  Mmmmm.

-The general public must be educated about the seriousness of Celiac/Food Allergies.

-We must have stricter labeling; mandatory gluten disclosure and stricter food production laws in order to ensure safe food.

In the US, we united around the task of sending a man to the moon (my uncle was using a “slide rule”, before computers, to do the math in order to make it happen). Somehow, 50+ years later, we can’t unite around educating the general public or passing laws to serve safe food to those with celiac or food allergies.  I hear horror stories from customers who tell me about people saying “nobody had food allergies when I was growing up, they are just made up” or, “a little bit won’t hurt you”.  As I have said before, we can send a man to the moon but we can’t safely feed our people and that is just stupid!

How do we change this?  So, yesterday, when Capt Ben and I were catching up and discussing Ted Cruz’s comments we both agreed that the mainstream does not recognize Celiac Disease as the reason for the GF Diet. We can whine among ourselves or we can ask our associations to put some of our donations towards  a mainstream media campaign and get the word out to the general public!   With Celiac Diease Awareness Month coming up in May, Ben was kind enough to donate 10 books for me to give away for this blog post.

Here is how you win a copy:

Send me your creative suggestions on ways to get the word out and fix the 4 big problems:

  1. How can our associations get the word out to the general public about the seriousness of Celiac Disease and Food Allergies?
  2. What can each of us do to personally further our own cause by spreading awareness?

The 10 best suggestions will get a free copy of Gluten Free in Afghanistan! Email me at onedishcuisine@yahoo.com by Tuesday 4/12/16. Make sure you include your name and a way to contact you if 1 or more of your suggestions wins! (I will post the top suggestions in the next blog post)

Thanks Capt B. Donald Andrasik for your service to our country (a country who is unwilling to serve you a safe meal while you are serving us by defending our freedom)!  Gluten Free in Afghanistan is a great read and it should comfort you to know that Ben survived two tours in Afghanistan.

 

 

 

 

 

 

 

Canadian Study: Why GF/AF Food Costs More!

A Canadian study looked at the increase in cost for GF (Gluten Free) foods in grocery stores and it will blow your mind! If you or a family member have been recently diagnosed with Celiac Disease or Food Allergies you have probably noticed how much more you spend in the grocery store.  Also, you may notice the increased cost when dining out (if you are able to dine out safely). This is something I hear about from customers who are new to GF (gluten free) and some who just like to complain first and think later.  Most with serious food allergies can’t eat anywhere safely, unless they come to One Dish Cuisine Cafe, Deli & Bakery and they don’t ever complain about the prices because they understand what it takes to do what we do in order to safely feed them.

I was reading the Celiac Disease Digest newsletter from Children’s National Medical Center and they referenced a study done in 2008 by Canada’s Dalhousie Medical School. They looked at 56 ordinary grocery items that contain gluten and then they looked at 56  GF versions of the same products. All of the GF products were more expensive. On average, they were 242 % more expensive!

gotta be kidding me

My reaction exactly;  but wait, there’s more! I know that our food is more expensive than mainstream restaurants, but we are nowhere near 242% more expensive because we price our products as low as we can and we don’t make near the profit as a mainstream restaurant. If that was true in my restaurant; we would be saying “That Reuben will be $41.00 please”. They did this study based on the cost of food in grocery stores.

I will give you a couple of examples:

1lb of chicken wings here costs $11.99 and a local restaurant in Maryland charges $10.99 for their allergy filled and gluten filled wings (we are about 9% higher..nowhere near 242%). The local restaurant sells their gluten and allergen filled Reuben for $11.99 including fries.  We sell our Reuben Sandwich for $14.99  (add fries to it and the cost is $17.99 or 20% more because of the homemade GF/AF bread & hand cut fries and handmade condiments, etc.)  Mmmmmm….

Our Reuben costs   20 % more                      Our Wings cost        9 % more

Yup and our last price increase was in January of 2015, more than a year ago and some customers stopped coming because it is too expensive. We are nowhere near 242% higher than other restaurants!  But each week you pay an average of 242% more in a grocery store.

According to the study, the average cost of a GF product was $1.71 and the average cost for the gluten filled counterpart was $.61. Unit cost was based on 100 grams. Hence; 242%.

The study cited the following as the main reasons that GF/AF Products cost more:

Here are some of the factors that increase costs in gluten-free manufacturing:
  1. Thorough and regular cleaning of factories, which increases production costs
  2. Less competition due to a limited number of manufacturers that meet production standards
  3. Gluten-free foods are often made with more expensive ingredients such as brown rice flour, amaranth, quinoa, and buckwheat; some also contain special sweeteners such as honey, agave, or coconut sugar
  4. A limited supply of gluten-free products, available only in stores with higher margins
  5. Simple supply and demand; until more people are diagnosed with celiac disease, non-celiac gluten sensitivity, or prefer to purchase gluten free foods for other reasons, the products will remain limited.
Can J Diet Pract Res. 2008 Fall; 69(3):147-50. Gluten-free and regular foods: a cost comparison. Stevens L1, Rashid M.
But wait, there is still more. Last week I was reading a post on a GF Facebook page and they were talking about the need for more completely GF restaurants and many of the comments were…”we need GF restaurants but please don’t price gouge us”.  I thought to myself, “are you kidding me”…we don’t price gouge anyone! We only feed between 1 and 5% of the population and every day is struggle to keep prices so you can afford to eat and we struggle to get people in the door….we serve a small sliver of the population. We don’t have the luxury of falling back on the high mark up that accompanies alcohol sales. Alcohol does not need to be labeled for gluten or any allergen, it is not regulated by the FDA, so we don’t have it here.
At Home Challenge: Pull open that drawer where you keep all of your Carry Out Menus and see for yourself. Reality Check; look at the prices on our menu (on our website) and compare them to your local gluten and allergy filled restaurant and see how we compare to their gluten/allergen filled food and any “GF” item they may offer without any guarantee. We are nowhere near 242% higher as you see in a grocery store.
You will see the biggest price difference on items that involve breads, pizza, pastas and baked goods because of the high cost of GF flours.  Look at what you pay for a small GF Pizza in the freezer isle or from a “I hope it is really GF Menu” in a mainstream restaurant:
$ 11.99- 10″ Round (79 sq inches; .15 sq inch)
  for pre-made frozen pizza and hope it is GF at a hot fired oven place.
$7.99- 8″ Square (64 sq inches; .12 sq inch)
  for square pizza & hope it is GF at this place known for its’ rectangle pizza.
$ 16.49- Rectangle 9x 12  (108 sq inches; .15 sq inch)
  for One Dish Cuisine and you have leftovers.
It costs nothing in one comparison or 3 cents more per square inch in the other comparison in order to eat a safe pizza at our completely GF/Allergy Friendly Cafe, Deli & Bakery.  So, when I hear someone say we are “price gouging”, I want to bang my head against the wall!
When you walk into a completely GF Restaurant you are no longer in the “land of gluten and honey”!  In our case we are completely free of most allergens and we have two separate kitchens using about 2x as much square footage as a mainstream restaurant kitchen, 4 times the amount of ovens and refrigerators & freezers, 3 or 4x the labor cost because we have to make everything in house to ensure it is safe. We make our own bread, and desserts, make our own salad dressings, croutons, sauces, slice our meats fresh and we hand cut our own french fries because we can’t buy them commercially without a coating of gluten or soy on them.  A 25 bag of wheat flour costs about $8.50 and our specialty GF Flour cost about $30-$35 per 25lb bag.  But wait, there is more. We take the worry out of dining out for you.
Many of you have seen me discuss prices in previous newsletters. I thought this study was great information to share, especially because the study was done by someone other than  me. In closing, I hope you will rejoice that we don’t have a 242% mark up in our cafe, deli and bakery; if we did that Reuben would be  $41.00! P.S. I need a blown up version of the photo below to put on my office door; it just might come in handy.
 bang head here

 

9 Yr Old’s Food Allergy Birthday @ One Dish Cuisine

Most children can go to parties and eat anything they want, they can go to sleepovers and their parents don’t have to worry about food making them sick, or worse, killing them.  I know that I sometimes take for granted what we do here and how special our cafe, deli and bakery is for those children with Celiac Disease and/or Food Allergies. (see photos below)

A few weeks ago I was giddy, like a child, as we hosted a birthday party for 9 year old Matthew; who is Allergic to: Wheat, Rye, Barley, Peanuts, Tree Nuts, Egg, Shellfish and Sesame. The best part was that he was able to have Pizza, Cake and a Video Game Truck out in our outer parking lot. Even better; Matthew’s friend, Nick, also has a Milk Allergy and was able to come in and order whatever he wanted and enjoy the same cake as the rest of the gang!

Twenty of Matthew’s closest friends and family were here at One Dish Cuisine Cafe, Deli and Bakery for some fun and safe food. I don’t know who was more excited, me or Matthew. It truly made my day to be able to provide a safe environment for him.  Watching his excitement being able to have all of his friends at his own party was a thrill for me and the staff here too.  The best part was that his friends were so thrilled to come to “Matthew’s Restaurant” and be able to eat a meal and have birthday cake with him; instead of Matthew watching them eat! His friends see him go without at school and at other children’s parties and they were so tuned in to how special this was for him.  The best part is that all of the kids loved the pizza and cake.

This is what makes me wake up and smile coming to work each day!  Just give us a call if you need to set up a special day for someone in your life.

 

 

 

 

Drink the “Drano”; Dining Out Part 2

Last week I told you all about the anxiety I was going through prior to meeting an elementary school teacher and classmates out for dinner in Annapolis.  In this post I will tell you all how I handled the situation and then touch on the stigma that we all live with when it comes to Celiac Disease, Gluten Sensitivity, or Food Allergies and how we can get the message across about how serious our illness is to the “doubters”. (We get to the “Drano” which is a blue liquid, toxic, drain de-colgger at the end)

I arrived early at the Thai Restaurant and talked with the waitress. I told her about my experience a couple of years ago.  She said they get a lot of requests for GF meals and that they use clean pans and utensils but can’t make any guarantee that my meal will be GF. Then she added that she has been there for a year and a half and has never been told that they got anyone sick.  I asked her if they see many people with Celiac Disease and she said that the majority are just making a “dietary choice” and not Celiac. I explained that I have Celiac and I did get sick last year and that a person who is just making a “dietary choice” probably would not know if they were exposed to gluten or not.  I told her that I appreciated her honesty but could not take a chance dining there. She clearly understood me and the seriousness of my situation.

My friends arrived and we enjoyed some wine. When it came time to order I just explained that I have Celiac Disease and it is not safe for me to eat there and that I planned ahead and ate at home.  Everyone understood, one “teared up” and I explained that it is no problem for me and I just want to enjoy everyone’s company. That was the end of that and we all had a great time.

I thought about how lucky I was that this went so smoothly and was so thankful that I did not hear any of the nonsense that we all have heard from family and friends at one time or another. We have all heard the term “drink the Koolaide”.  Well, I have my own term “Drink the Drano”. Below are the insane things we often hear from doubters followed by my standard answer that I give. Many of you have heard me say this in my restaurant and in previous articles. People are very “visual” I have seriously considered carrying a little plastic container of blue dish soap with me. It would be my prop of “Drano” and would come in handy in every situation. (see photos at bottom)

“Just a little won’t hurt you”“Really? Drink this Drano first and let me know if it hurts you”

“What is the worst thing that can happen?”“Drink this Drano and find out”

 “It won’t kill you”“Drink this Drano and let’s see how you make out”

“I am a vegetarian; I know how you feel”“Drink this Drano and let me know if this is how you feel when you don’t stick to your vegetarian diet”

“Are you trying to lose weight?”“Drink this Drano and tell me if it would be worth avoiding at all costs”

“I heard that is a FAD.”“Drink this Drano and let me know if avoiding it will be a FAD or a way to avoid illness for you”

“I read on the internet that you can have sourdough bread and wheat grown in Germany”“Drink this Drano and let me know if you want to buy into that nonsense”

“How can you survive without bread” “Drink this Drano and you will see why not eating bread is the only way I can survive”

“It is gluten free; there is no wheat in it.” (Chef to Celiac who was questioning why there is Barley Soup on the GF Menu..yes; it was real barley in the soup). – Run to the nearest exit!

I chose to make a stand for myself and for all of those with Celiac Disease and Food Allergies by telling the waitress that it was not safe for me to eat there!

What are your thoughts? Will you make a stand? Would the “Drano Challenge” help you when your Celiac/Food Allergies or Gluten Sensitivity are not being taken seriously?  Feel free to leave comments here on the blog.

 

 

FODMAPS; What You Need to Know!

There has been a lot of attention given lately about FODMAPS. In this post I will tell you what they are and why people with Celiac  Disease (CD)and Gluten Sensitivity (GS) often have issues with these. Basically, FODMAPS  is a term used to describe a chain of short chain carbohydrates and sugar alcohols that are found naturally in food or added to food.

The acronym FODMAPS stands for fermentable oligo, di and mono saccharides and polyols. Researchers believe that foods with these carbohydrates make IBS & IBD (inflammatory bowel syndrome and inflammatory bowel disease) worse.  Basically, the oligosaccharides are made of fructans and galactans; the disaccharides are comprised of lactose; the monsaccharides are comprised of fructose and the polyols are sugar alcohols such as sorbitol, mannitol, xylitol and maltitol.

Fermentable means they are broken down in the large bowel.  All of these substances are poorly absorbed by the small intestine. The theory is that they may contribute to digestive difficulties in some people due to the processes of fermentation and/or osmosis.  So, basically, they are carbs, lactose and sugars that are hard to digest. Symptoms would include gas, pain, diarrhea, bloating, constipation, distention and nausea.

Foods that are high in FODMAPS are:

Wheat: in all forms, breads, pastas, pastries, cakes, cookies etc, including Rye and Spelt.

Fruits: apples, apricot, cherry, lychee, mango, nectarine, peach, pear, plum, prune, starfruit, watermelon, juices (fruits or juices with apple and pear)

Vegetables: artichokes, asparagus, avacado, beans (and lentils), broccoli, brussel sprouts, cabbage, cauliflower, chickory root, fennel, garlic (and* soups and sauces with garlic), leek, mage tout, mushroom, onion (and soups and sauces with onion), peas, spring onion (white bit), sugar snap peas.

Sugar Free Mints, Gum, Sweets and Drinks: avoid sorbitol, mannitol, lactitol, maltitol, xylitol, erythritol and isomalt.

High Fructose Corn Syrup

Honey

Avoid: FOS, Inulin, or oligofructose as ingredients.

Nuts: Almonds, Cahsews, Pistachio

Dandelion Tea

Milk: Milk and products with lactose like cheese, yogurt, milk chocolate, chocolate,  and ice cream.

Rum

*I know that for me onions, beans, apples, pears, juices, xylitol, etc; cause me big time problems! Many customers with CD, GS, IBS and IBD  say they have problems with FODMAPS as well and do much better avoiding them. The best way to figure out which ones are a problem would be to remove them all for a few weeks. Then when you try eating one of them, you will know quickly if it is a problem for you. Keep a food diary when you start adding them back in and you will see your own pattern developing based on what you ate.

My Thoughts on “Grain Brain”; by David Perlmutter, MD

Many customers, while dining in my cafe, have asked me what I thought of Grain Brain, written by renowned neurologist, David Perlmutter, MD.

First, I will say that the book is excellent and a must read for everyone, especially if you or your family are touched by Celiac, gluten sensitivity, autism, dementia, alzheimer’s, stroke or heart disease! Dr Perlmutter goes into great detail about the care and feeding of your brain.  Showing, through research, studies and clinical experience exactly how healthy carbohydrates; such as whole grains and sugar can cause dementia, ADHD, epilepsy, anxiety, headaches, depression and more.

I made some some notes while reading the book that you might find of interest. First and foremost, Dr Perlmutter believes that Gluten Sensitivity is the real issue at hand and that Celiac Disease is an extreme manifestation of Gluten Sensitivity.

Gluten Sensitivity:

-Celiac Disease is an extreme manifestation of gluten sensitivity; the most severe reaction to gluten.

-1 in 30 people have Celiac Disease as estimated by Dr Perlmutter, although experts say 1 in 200 or 1 in 131; many are not diagnosed.

-1 in 4 people are vulnerable to Celiac Disease due to genetics alone and those of northern European descent are more susceptible.

-A person’s genes determine gluten sensitivity or severity, meaning there is a very wide spectrum to it.

-Gluten does not just harm the gut, once the genes are triggered, sensitivity to gluten is lifelong condition that can affect the skin, mucous membranes and the mouth.  Gluten reactions can involve any organ in the body including the brain, even if the gut is fine.

-The brain is at great risk if a person is gluten sensitive.

-Food Sensitivities are usually a response from the immune system.  The presence of gluten basically disables the body’s immune system and it can’t fully support the body’s natural defenses.

-About 45% of people with ASD (autism spectrum disorders) have gastrointestinal problems. There is an increased prevalence of celiac in pediatric cases of autism, compared to the general population.

-People with Celiac Disease may be at increased risk for developmental delays, tic disorders, learning disorders and ADHD.

-Depression and anxiety are often severe in those with gluten sensitivity.

-He dispels the myth that all fat is bad for you. Low cholesterol can affect mood and put your brain at risk. Your brain needs fat and is made of fat.

-“Routine lab tests for Celiac Disease are not sensitive enough to uncover gluten sensitivity, so don’t bother with them”. (I take issue with this, you need to know if you have Celiac first, then if negative, look for gluten sensitivity. No wonder 83% of those with Celiac are said to be undiagnosed!)

-Inflammation is the cornerstone to brain disease. He goes into great detail about dementia and alzheimer’s disease and the role gluten plays along with sugar, statin drugs, strokes, diabetes and so much more. Much time is devoted to talking about how all carbohydrates; grains and sugar are causing us problems (inflammation) and has lots of studies and clinical experience referenced in the book. There is also great information in the book about vitamin deficiencies, leaky gut and more.

I think this book is a must read; or buy it on CD and listen to it on a long car ride. I think it is eye opening and saw so many of my health issues highlighted in this book;Grain Brain it has convinced me to tweak my GF diet a bit. (I can attest that gluten does affect the brain! Read my blog post about when I was “glutened” on vacation.)

Feb 28th Is Rare Disease Day; Some Intertwine with Celiac Disease, Food Allergies and Autism

February 28th is Rare Disease Day: I wanted to spend some time on this because many of our customers have rare diseases and/or Celiac Disease, Food Allergies or Autism.  Think about it, 20 years ago, most never heard of any of these and now you hear about them. In this post I will highlight some of the Rare Diseases that can intertwine with Autism, Celiac Disease and Food Allergies.

I definitely see and hear it all via our wonderful customers; especially when it comes to rare diseases. You can’t imagine what these brave men, women and children go through… along with their families! Below are some of those rare diseases and a brief overview of each; please review and be aware. Awareness leads to diagnosis and funding for research.
-So, in honor of our customers and their families who have had to fight, scream and claw to get a doctor to take them seriously; in order to get a diagnosis other than “hypochondriac”; this is for all of you.  Each one of you are a “hero” in my eyes and I am so grateful to you for sharing your experiences with me while you are dining here. 
-Dysautonomia- is actually not rare, over 70 million people worldwide live with various forms of it. This can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus, and Parkinson’s.  Currently there is no cure for dysautonomia.  However, secondary forms can improve with treatment of the underlying disease.

‘Dysautonomia’ is really just an ‘umbrella term’ that describes several different medical conditions that cause a malfunction of the Autonomic Nervous System. ‘The Autonomic Nervous System controls the “automatic” functions of the body’ those are the functions that we don’t have to think about in order for our body to perform the functions. Examples would be: “heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.” Basically, those who have certain forms of dysautonomia will have difficulty regulating these systems “which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death”.

-People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
Some of the different forms of dysautonomia include:

1) POTS (Postural Orthostatic Tachycardia Syndrome)-

“estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.”

2) Neurocardiogenic Syncope (NCS)- is the most common form of dysautonomia. “NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.”

3) Multiple System Atrophy (MSA)- is a fatal form of dysautonomia that occurs in adult ages 40 and up. A neurodegenertive disorder, it  has some similarities to Parkinson’s disease. However, unlike Parkinson’s patients, those afflicted with MSA  usually are “fully bedridden within a 2 years of diagnosis and die within 5-10 years”. MSA is a rare disease, with estimate of only 350,000 patients in the world.  “There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life”.

Dysautonomia International encourages you to learn more:
-Ehlers Danlos Syndrome (EDS)- is an inherited connective tissue disorder and can present in different ways which have been classified into several types. “It primarily affects your skin joints, muscles and blood vessel walls. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening.””There is no cure for EDS, and treatment includes close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage.”

Often misdiagnosed as a “hypochondriac”, the person suffering with EDS may also suffer from “depression, chronic fatigue syndrome and other conditions because EDS is considered an invisible disability and there is generally poor knowledge about EDS among practitioners.”  Many sufferers have psychological difficulties which are a direct result of frustration with the medical profession and the difficulty of having to appear “normal” while being in very real and very severe pain.  There are support groups who try to raise awareness about EDS among the general public and medical professionals.

http://www.ehlersdanlossyndrome.org/

 -Gastroparesis- means stomach paralysis and “is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally.”  Normal muscle contractions move food through your digestive system. However, in gastroparesis, “your stomach’s motility works poorly or not at all”.  This means your stomach will not empty properly. “Gastroparesis can interfere with normal digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.”

The cause of is usually unknown. “When this is the case, it’s called idiopathic gastroparesis (IG). When people who have diabetes develop gastroparesis, it’s called diabetic gastroparesis (DG). Some people develop gastroparesis after surgery. There is no cure for gastroparesis, but changes to your diet, along with medication, can offer some relief. ” For more info use link below.

http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971

-Mast Cell Activation Disorder-
Mastocytosis is one of the mast cell diseases. It is a rare disorder that affects children and adults.  It is caused by “the presence of too many mast cells or mastocytes and mast cell precursors. Those afflicted often experience itching, hives and anaphylactic shock “caused by the release of histamine from mast cells”. However, it appears that the “current classifications and diagnostic criteria are being reviewed to better describe the collection of related disorders”.  Mast cell disorders are found on the skin, internal organs, bowel, throat.

“Because mast cells play a role in allergic reactions, the symptoms of mastocytosis often are similar to the symptoms of an allergic reaction.” Some symptoms are:
 
  • Fatigue, Skin lesions and itching, Abdominal Discomfort,Nausea and Vomitting, Diarrhea, Food and Drug Intolerance,  Intolerance to Smells, Infections like bronchitis, rhinitis, conjunctivitis, Inflammation of Ear/nose/throat, Anaphylaxis (shock from allergic or immune causes), low blood pressure (shock & fainting), bone/muscle pain, decreased bone density or increased bone density (like osteoporosis or osteosclerosis), headache, vision discomfort and malabsorption.

http://my.clevelandclinic.org/health/diseases_conditions/hic_Mastocytosis

-PANDAS- (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)
“This term is used to describe a subset of children who have OCD or Tic Disorders (Tourettes Syndrome) and their symptoms worsen after a strep throat infection or scarlet fever.  Characterized by a dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a strep throat infection.”  Some of the children with this also have ASD (autism spectrum disorder).