I am constantly amazed by the customers who come in after a long hiatus and say they are getting “glutened” all the the time, their antibody levels are up and they need to come here more often! Wow, you really have to be getting exposed to gluten on a regular basis for your antibodies to go way up. There are 3 major reasons why this happens to people so often.
- Cross Contamination
- Eating an item that does not have gluten ingredients in it but is NOT labeled GF and not 100% GF
- Eating at a new restaurant or any restaurant the has “GF” offerings but is not dedicated GF.
I read recently that if you are getting exposed to gluten more than once a month, you are asking for problems! Why is it a problem? Gluten affects every cell in your body because Celiac Disease is an auto-immune disease! The problem I see is that people are not recognizing the symptoms when they are having a reaction. There are more than 300 Signs and Symptoms…you can have a few or many. Click Here for 300 Signs & Symptoms
Recently, a Celiac customer, who lives in Arizona was in town. Yes, she is a regular customer, because she is here every day that she is in town; we see her more than some people who live 5 miles away! Anyway, she told me what happened to her out in Arizona and how sick she was getting…eating anyplace that had a “GF” menu. As we talked it was apparent that she was not recognizing the symptoms she was having for about one year! She thought she had a “handle” on this GF stuff. Yes, sinus and ear infections, headaches, inflammation, knife like pains, gall bladder attacks, etc are symptoms! She ended up in the hospital. She also said she was eating “GF” Cheeri-Oh-Nos in addition to eating anywhere with a GF Menu! (see 3 previous blog posts on “GF” Cheerios; they are not GF folks!) Stay tuned, I plan to let her tell her story in the next week or so!
Gluten reactions vary from person to person and the amount of time between exposure to gluten and the time of symptom manifestation varies from person to person. However, for the most part, the reactions become more severe the longer you have been off gluten.
That being said, a person who is constantly being exposed to gluten tends to stay the same and not improve after diagnosis. They never will improve unless they get the gluten out of their system…(6 to 9 mos with no gluten exposure). I have been dealing with this for almost 30 years and I know the pattern of symptoms that appear and how they evolve in me when I get exposed to gluten!
For me, I will get severe acid reflux within 1 hour and then I know I am in for 10 days of hell! I have a racing heart beat and pains in my legs by the time I get home and into bed. I fight the urgent need to vomit. Sometime in the evening or the next morning I have sharp knife like pains in my right side, diarhea and vomiting at the same time, migraine headache, bloated abdomen. I start sweating profusely and prefer to lay on the cold tile floor of the bathroom and quite franly, it is just more convenient for me than running to and from my bed! By about day 3 the joint pain, constipation, DH Rash (dermatitis herpetiformis; it looks like excema and is the skin manifestation of Celiac Disease which can be biopsied for diganosis), brain fog and Ataxia start to set in. For me, ataxia is the inability to speak in complete sentences, stumbling and falling when trying to walk, walking into walls. By about day 9 or 10 I have MS type reactions, with involuntary muscle spasms in my legs and arms. I takes about 9 months (to the day) for my DH rash (on scalp, arms, elbows, knees, ankles, face and sometimes with sores in my mouth, nose and ears) to clear, and that is how I know all gluten is out of my system. If I were to keep getting exposed to gluten, the rash will never go away.
With an anaphylactic food allergy, you know right away…you take benedryl and/or reach for you Epi Pen! With Celiac reactions, it is not so easy to know what is happening, especially if you are newly diagnosed or if you are a child, you can’t always communicate it to your parent. Below are some examples of what customers are sharing with me when they come in.
In just the past month I have had several examples that I thought might help you:
- A family come in with their child who has celiac disease and they came once when first diagnsoned, but for the past two years they have been eating at any place that claims to have a GF Menu! The child’s doctor said that the Celiac antibodies were very high and they have to stop eating out so much, unless it is at a completely GF place! Well, they came back to see me and Mom said “we need to come here more often”. The child had the tell-tale signs that I always see in kids, dark circles under the eyes, tired, cranky or mood swings and complaining of stomach aches.
- An adult, living in an assisted living facility, has not been feeling well. Family brings her in once a month or so. She said she was losing weight too. I asked her if they checked her antibodies, she said they don’t really follow it for her. I asked her if there was a change in her diet and she said she started eating “GF Cheeri-Oh-Nos” a few months ago and has them every day for breakfast. I recommended they run new blood work and go get some knock off “cheerios” that are truly GF. (search this blog to read about the Cheerio-Oh-nos drama)
- A child who eats here once a week was having stomach aches and symptoms. He had started eating Cheeri-oh-nos. They pulled them out of the diet and he is feeling much better.
- An adult, diagnosed at least 5 years ago, felt she really had good control of her diet and started eating anywhere that offered a GF Menu. (she lives out of state and comes here a couple of times a year). She was having intestinal pain, constant ear infections, sinus infections, bloating and just feeling very sick. It finally occurred to her that it was gluten exposure on a consistent basis. After eating “Cheeri-oh-nos” she ended up in the emergency room. She finally purchased a Nima Sensor and is testing everything. She said, the trick is to take samples from all parts of the meal, mix them up and then put them in the sensor to test.
Here is a great article on Gluten Reactions: Click Here
What should you do if you think you/your child are getting exposed to gluten? First, get to your gastroenterologist and get checked out. Stay safe out there gang and take a close look at your habits! Look at what and where are you eating.