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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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