Who in My Family Should be Tested for Celiac Disease?

NFCA, (National Foundations for Celiac Awareness) has launched a campaign to urge family members of those with Celiac Disease to be tested by launching a new campaign, ‘Seriously Celiac Disease” to urge those diagnosed to have a one on one conversation with relatives. They have a video and information to help you have this conversation (see link at the bottom).

Who should get tested?

First-degree relatives: parents, children, and siblings. (even if they have no symptoms)

-Second-degree relatives: grandparents, grandchildren, aunts and uncles, nieces and nephews and half-siblings. (even if they have no symptoms)

Why should they be tested?

-Celiac Disease is the most variable and diversely presenting diseases you will ever come across. (Dr. Hilary Jericho, a pediatrician and celiac disease researcher at the University of Chicago’s Comer Children’s Hospital)

“Celiac Disease has a whole variety of symptoms and can be serious if mismanaged or untreated.” (Alice Bast, NFCA)

-Celiac Disease has more than 300 signs and symptoms! (Maureen Burke) see link below.

PS: Only two of my family members have been tested.  Some said their doctors refused to test them because they had no classic symptoms. Newsflash, some people have no symptoms at all! 

http://www.celiaccentral.org/seriouslyceliacdisease/

http://www.recognizingceliacdisease.com/21.html

Link Between Gluten and ALS (Lou Gherig’s Disease)?

Researchers from Israel think gluten could cause a syndrome that looks like ALS, amyotrophic lateral sclerosis, which is also known as Lou Gehrig’s Disease. This disease attacks nerves and pathways in the brain and spinal cord and eventually causes paralysis and death.

Researchers think there might be a link here and it would not surprise me due to the neurological complications that are sometimes seen in those with Celiac Disease because 45% of those with Celiac also develop antibodies to TG6. Although, many more studies need to be done.  Below is what appeared in Rueters from JAMA Nuerology online 4/13/15.

“Dr Vivian Drory and her team of researchers from Tel Aviv Medical Center found antibodies to an enzyme produced in the brain, called tissue transglutaminase 6 (TG6), in 23 out of 150 patients with ALS, compared with only five of 115 healthy volunteers. Furthermore, the concentrations of those antibodies were higher in the ALS patients.

Antibodies to another transglutaminase, TG2, are produced by people with celiac disease when they eat gluten, a protein in wheat, barley and rye.

About 45 percent of patients with celiac disease also produce antibodies to TG6, even when they have no neurological symptoms. (In some patients, gluten sensitivity can cause neurological problems, and many of those patients do have antibodies toward TG6.)

The authors report in JAMA Neurology that ALS patients with antibodies to TG6 showed the classic picture of ALS and the typical rate of disease progression. The volunteers with antibodies to TG6 showed no signs of any disease.

None of the ALS patients or volunteers had the antibodies to TG2 that are commonly associated with celiac disease, although the ALS patients were more likely than the volunteers to show the genetic mutations that put them at risk for celiac disease.

Drory said her team has begun to study TG6 antibody levels in patients newly diagnosed with ALS, and they will be testing the effects of a gluten-free diet in some of those that test positive. She expects it will be “at least 2 more years” before they have any results.”

'The Sporting News 100 Years of Sports Images'

http://www.reuters.com/article/2015/04/13/us-als-gluten-link-idUSKBN0N428I20150413

Boy Develops Life Threatening Food Allergies After Blood Transfusion

This should not be a surprise to most of us, but it makes you wonder why they are not required to let the donor know this information before getting the transfusion?
In this case, an eight year old boy gets a blood platelet transfusion and ends up with life threatening allergies to fish and nuts! This is called a “passive transfer” of allergies and the donor’s food allergies were later confirmed by the blood bank.  Apparently, a lot of platelets were given by that donor and that is where the antibodies are.  The boy was not making platelets on his own and the allergies went away in a few months.
Even though passive transfer is said to be rare, I still think that the recipient of the blood should be aware of this prior to accepting the transfusion!  I was told I could not be a blood donor/organ donor because of my Hashimoto’s Thyroiditis, an autoimmune thyroid condition.  Would that apply to my Celiac Disease and Food Allergies as well?

Website for Colleges and Celiac or Food Allergies

This is a huge problem that our children face when they try to go away to college with Celiac or Food Allergies. I am constantly being asked about this information. Below is a link to the best resource for dining in colleges in the US.

Karen Broussard has this information on her website and the students actually get to go on the site and rate how their school is really doing when it comes to their Celiac Disease or Food Allergies. This is a great place to start when trying to decide where to go.

https://glutenfreetravelsite.com/glutenfreecollegereviews.php

Tips for Cooking Gluten and Allergy-Free

Cooking Tips for Mistakes:
Don’t be too hard on yourself when you make a mistake; keep your sense of humor!  When cooking, you can usually taste the end product and figure out what to add to it in order to fix it. When baking; if the bread doesn’t come out right; let it cool, then cut into cubes and make croutons with oil and seasoning, then freeze them.  Or you can let it cool and then put in food processor or blender and make bread crumbs and freeze them.

For sweet mistakes, the slightest mistake can make an ugly disaster but still taste really great. Just stay calm and re-purpose the mistake where it is a condiment and not the star of the show; then you can come out on top!  Like cakes; crumble the item and use crumbs as a topping for a parfait (“everybody loves a parfait” said the Donkey in Shrek) or crumble for a pie crust.

So when I make a mistake or someone in the bakery makes a mistake, I have fun running around the kitchen trying to figure out what I can make out of the mistake. Watch this 1 minute clip and this will help you keep your sense of humor the next  time you think you have a disaster. The clip below is what runs through my mind when I make a mistake; don’t panic, be a Donkey!

Food Allergy “Pilot” Program to Start in 12 Colleges!

4/6/15

We have so many customers that share the struggles that they or their child are going through trying to safely eat while living on campus.  FARE (Food Allergy Research and Education) announced the launch of a pilot program that will provide colleges and university with their “gold standard” resources and recommendations to manage food allergies which can be a life threatening disease.  colleges

I am so glad to see that FARE has undertaken this task.  The following were selected for their pilot program:

  • College of the Holy Cross (Worcester, Mass.)
  • George Mason University (Fairfax, Va.)
  • King’s College (Wilkes-Barre, Pa.)
  • North Carolina State University
  • Texas A&M University
  • University of Arizona
  • University of Chicago
  • University of Michigan
  • University of Northern Colorado
  • University of Southern California
  • Valparaiso University (Valparaiso, Ind.)
  • Wesleyan University (Middletown, Conn.)

Click on link below for more information from FARE!

http://www.foodallergy.org/2015/040615?tr=y&auid=15365141

Thyroid Disorders

A customer was in this week who has been a celiac for most of her life and she is having some other issues.  I asked her if her Thyroid had been checked.  She was not 100% sure.  Many thyroid disorders are missed because the test is not part of the standard CBC that is often ordered.

Disorders are common in those with Celiac Disease and Gluten Sensitivity. There are several different types of thyroid disorders, with autoimmune thyroid disease being the most common; Hashimoto’s Thyroiditis.

A full assessment of your thyroid function includes the following blood tests:

TSH, free T3, free T4, reverse T3 and thyroid antibodies.

*Anyone with Celiac Disease should be tested for Hashimoto’s and anyone with Hashimoto’s should be tested for Celiac Disease.

If I had to make an educated guess based on our customers in the restaurant, about 60% of them have Celiac and Hashimoto’s Thyroiditis.  I also thyroidhave this and take Levoxyl daily  (Synthroid has Milk in it). Click link below for more info and symptoms.

http://www.celiaccentral.org/Celiac-Disease/Related-Conditions/Thyroid-Disease/40/