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Need A Little Advice Please:)


madgracemom

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madgracemom Newbie

I have not been diagnosed with celiac but I am pretty positive I have at least a sensitivity to gluten. For one year I suffered from upset stomach and constipation and for the past two years I have suffered from abdominal pain and diarrhea. I stopped eating bread and pasta for a week and already noticed a difference. After cheating for one night I woke up with stomach pain and diarrhea for the entire day. I also have endometriosis, a history of miscarriage, tooth decay, heart palpitations (which I am now taking meds for) and am extremely overweight. I have insurance but my out of pocket cost for the test would be too much. Do you think I should just stick to what I know helps without getting an official diagnosis?  Any insight would be helpful.


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w8in4dave Community Regular

In my opinion I would get the test. That way you would know for sure and not be tempted to have a lil here and there. My daughter goes on a gluten-free diet , then decides it's too expensive and goes off, then feels sick and goes back on it. Her Dr. will not give her the test. My suggestion is If you decide to not get the test, to be very strict on the diet. But it is a choice. There are alot of people here who have not gotten the test and are doing very well.

nvsmom Community Regular

I too would get tested before you go gluten-free because if you decide, at a later date, that you would like to know whether you have NCGI or celiac disease, you will need an 8-12 week gluten challenge of 1-2 slices of bread per day - that's two to three months of feeling poorly. Yuck!  It might be wiser to resume gluten for a week or and then get tested. If the tests are positive, then it's celiac disease, and if it's negative, then you know you have non-celiac gluten intolerance (NCGI).

 

If you do go gluten-free now, make sure you give the diet a few months before you judge it's effectiveness. It can take quite a while for all symptoms to improve.

 

Best wishes.

LauraTX Rising Star

Getting the testing done now is investment in peace of mind for later.  Knowing an official diagnosis can help your family and offspring with answers to any possible related problems.  A lot of times you can get a payment plan going for procedures like an endoscopy, honestly it is worth begging, borrowing, and doing whatever you can so you can cross that task off permanently.  

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    • 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.
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      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. 
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      I have always eaten gluten and never stopped until my recent episode. I started more wheat products as my Dr. requested for the Tissue Transglutaminase Iga Antibody. mye result Value <1.0 Value interpretation: <15.0 Antibody not detected > or =15.0 Antibody detected I do not understand any of it. After eating all that wheat product my body exploded with all sorts of symptoms. I stop gluten ASAP. I am still in the healing process. I started having issues after my surgery. 
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      Welcome to the celic.com community @Ello! You say you had a blood test for celiac disease after eating gluten for 2 weeks. Were you gluten free before that? Had you ever been officially diagnosed with celiac disease previously? You say the result of the blood test was 1.5. Can you provide the name of the test and the reference range for negative vs. positive for the test? I ask because different labs used different reference ranges so scores without a reference range aren't very helpful.
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