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Is This Celiac?!


adambryant

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adambryant Explorer

Hi, I haven't had a diagnosis of celiac, but have currently been gluten-free for about 5 weeks. I used to get disgusting flatulence very often, but after a week of going gluten-free, it went totally and haven't had it since.. Although the feeling of fullness is always there(bloating), as is the feeling that I never feel hungry, and 'C' is still there but has improved slightly. I have removed all dairy to. I just want to come to the bottom of this problem its been going on for too long now..and don't want this to be pointless trying gluten free. Does this seem like celiac is the cause? When should my other symptoms clear up if it is the cause? Any advice needed PLEASEEE!!!


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Skysmom03 Newbie

It may take months depending on how badly your intestines are damaged. The flatulence definitely sounds like it. My husband's smelled like something rotten. Really bad. After his diagnosis and the diet it went away almost immediately!!! Give it some time. I will say that not all prople with celiac have the same signs and symptoms. There are 30 + s and s that coukd be related to celiac. May I ask... Why not go to dr for official diagnosis?

adambryant Explorer

Ill stick at it, only time will tell really.. And I had blood tests which were negative, and the doctor thought that if the blood test was negative, I was negative.. I went to a specialist doctor for the symptoms, and he just said I had chronic 'C' and sent me on my way.. So if they're not going to help, ill try help myself. Also my mum has celiac too.

Skysmom03 Newbie

I would find a different doctor and I would request a full celiac panel and possibly genetic testing. You have the symptoms and the family history. This Is too important not to find out. Do you have to have a referral to see a GI? Because if not I would go straight to one of them.

Blood test can be wrong.... When my son was tested his 'main' test -- the one my dr focuses on the most was only 25.... But when he did his the numbers were very different. He said some dr use different companies and sometimes they don't use the right test and many come back with false negatives and positives. My son's own GI doctor didn't trust the test because my son doesn't 'look' celiac( nice healthily look little to know noticeable symptoms). His risk factor was his dad which is the only reason he was tested in the first place. When he actually got in there to do thd biopsy, he indeed found damage ( according to him .... Three years worth of damage....). Keep going forward if you can.... You deserve that.

adambryant Explorer

Ahhh I see.. And I've been eating gluten-free for 5 weeks now so it'll make the biopsies unreliable etc as you need to be eating gluten for a while before don't you? I guess I'm just gonna stick to this and see how it goes

adambryant Explorer

Its just the bloating and irregular bowel movements which is causing me problems:( and lack of appetite!

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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. 
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      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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