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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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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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