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Is Everyone Gluten Sensitive?


sareli

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sareli Newbie

I'd like some thoughts on this (my first post). I took myself and my children off of gluten on Thursday and I feel wonderful. Initially I looked into it because my daughter is 4 and has some symptoms and someone clued me in on gluten. She is often tired, red around her eyes, doesn't poop daily, yet eats a ton of fiber (she used to LIVE on whole wheat pasta), she has had a bad rash on her upper butt cheeks since last February that wouldn't go away with 2 different scripts. I really didn't want to take her in for blood tests (a bit too intrusive to me right now) so I'm going the elimination diet technique.

I decided to do it with her so she didn't feel like she was getting screwed in family meals and such. My son is almost exlusively breastfed, so he doesn't get a choice. I had been very frustrated with the fact that I was only pooping every 2-3 days. This has been going on for months (I've NEVER been a frequent pooper, but has never been this bad. Since day 2 of gluten free I have been going 2-3 times a day (which is what my doctor told me a healthy functioning intestinal track would make you do) AND my son, who only pooped 1 time a day (sometimes very dry) also started pooping 2-3 times a day and with good quality.

ok..enough about the poop. I also can't believe how clearly my mind is working...My head feels lighter. So WTH? Is it really possible that we all have gluten sensitivity? How do I convince the grandparents to take gluten sensitivity seriously if I don't get daughter blood tested, but she shows great improvements? Should I just tell them she was tested and came back positive? (and by the way, the rest of us are allergic too? yeah, that'll go over well....)

sarah


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Hi Sarah, and welcome to this board.

It sounds like you have found the answer to your family's health problems. Celiac disease/gluten intolerance is genetic. It is not unusual for one, or even both parents, and all or most of the kids to have inherited the genes for gluten intolerance.

All of you are feeling better, your bodies are functioning properly without gluten. These are your kids, you make their choices for them while they're little. What the rest of the family thinks is their problem.

If you really want a paper that shows you are truly gluten intolerant, and you have the money, testing with Open Original Shared Link is always an option. They test the stool of people (much more sensitive and accurate than blood testing), and you don't have to eat gluten for the results to be accurate (they'll still be accurate for up to a year after eliminating gluten).

Other doctors may or may not believe in Enterolab. Read through their site to see what you think. I believe they're incredible and way ahead of the rest of the medical community.

CMCM Rising Star

Well, I just read in my newest celiac related book, "The Gluten Connection" by Shari Liebermanm, published 2007, the following information:

"The gluten problem touches FAR MORE of the U.S. population than the 1 out of 133 who have celiac disease. Some researchers now speculate that as many as 29% ....almost 3 out of 10 people....are gluten sensitive. And approximately 81% of Americans have a genetic disposition toward gluten sensitivity."

I guess this means that 80% may have the genetic disposition, although not necessarily any symptoms.

She goes on to say: "If you are gluten sensitive you can have a low level of intolerance and function for years--perhaps your entire life--without any identifiable symptoms or with symptoms so mild that you pay no attention to them. Feeling less than 100% is so normal that you don't know you can feel better."

This is a very informative book....I recommend reading it. See Amazon.

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    • Dr. Gunn
      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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