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No Doubt In My Mind Now...


JerryK

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JerryK Community Regular

So after 4 gluten-free days and no Gastro symptoms, I ate a sandwich last night. Lovely Country White

bread tasted heavenly...(sorry)

This morning...right back to the loose floaty bulky smelly stools...boom.

There is no longer any doubt in my mind that I am Gluten Intolerant...absolutely zero.

The only question that remains is do I actually have celiac disease?

Geeze I'm going to miss country white bread....


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aorona Rookie

you could get blood tested for celiac, but you must be on a gluten containing diet I believe for at least one week. If you feel better going on a gluten free diet, and don't want to get tested, just stick with it. It really depends on a personal preference. Some people are so glad to feel better that they don't care to be tested and just stick with the diet.

penguin Community Regular

It's 3 months on gluten, actually, at the equivalent of 4 slices of bread a day. That's what the latest research says, anyway.

Jerry, you have several options:

1: Just go gluten-free if you're confident in your self-diagnosis and don't feel you need mainstream testing. This also requires that you don't cheat and challenge yourself all the time just to be sure.

2: Just get the blood test, and go gluten-free either way. Note that blood tests may be inconclusive, especially since you've been flip-flopping back and forth between diets.

3: Get the blood test and biopsy, see caveats in #2.

4: Use enterolab and see if you have the gene, malabsorption, and immune reactions. It won't tell you if you actually have celiac though, but it will confirm your suspicions of intolerance.

CarlaB Enthusiast

Does it matter if it's gluten intolerance or celiac? They're essentially the same, one has visible villous atrophy, but both can damage the intestine and have the same symptoms. Do the testing if you need it, but there's some freedom in not having it as a pre-existing condition.

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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
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      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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