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salamander

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salamander Newbie

Hi, this is my first post here, and I might be jumping the gun, but I don't think so! I haven't been diagnosed with a gluten allergy yet, as I am waiting on test results coming back. It does run in the family.

However just to give a little background info, I have been feeling pretty rough for a while now, and after several trips to the doctors, a bit of experimenting with taking various foods out of my diet I am coming to the conclusion that there might be a problem. My Doctor has been really good and thinks it might be the case.

I have been what you could call 'regular' for years when it comes to trips to the toilet but I never really gave it much thought. I thought it was normal for some people to need to go 2-3 times every day, and as for the wind problem! I just thought that was me. That's how I was.

Growing older, and being introduced to nights out and beer, I thought it was normal to need to go to the toilet 3 times the following morning! Nothing is loose, it's just that I seemed to need what you would call 'a really good clean out!' Several 'clear outs' in fact!

Some days at work, usually in the afternoon, I get really bad stomach cramps, like a huge build up of wind, and then it becomes necessary to either find a quite space away from the desk, to vent a little(lot) or pay a trip to the toilet. Not to go, but just to let off a lot of excess wind!

On top of all this, the eczema attacks that plagued me in childhood keep coming back. So too do the mouth ulcers, and about 2 years ago I decided to start taking multi vitamins, because despite what I thought was a healthy diet, I was constantly feeling run down and picking up every cold/virus going.

In recent months I have tried taking bread/beer/wheat based cereals/ crackers/wheatbreads etc out of my diet, and can genuinely feel better for it. Not totally cured, but better. This is where i am at now and reading other posts and info, it looks likely that my test results could be inconclusive.

Any help or advise would be great!


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GlutenWrangler Contributor

First off, it's important to distinguish between Celiac Disease and a Gluten Allergy. Celiac Disease is an autoimmune disease. Gluten causes an immune reaction in which the body attacks itself, thereby damaging the villi of the small intestine. Celiac Disease is diagnosed through antibody blood tests, small intestinal biopsy, and dietary response.

A Gluten Allergy is a histamine reaction which does not affect the small intestinal villi. Gluten Allery is diagnosed through a food allergy test or by an elimination diet.

That being said, I'm guessing that the tests you are talking about are a full Celiac Panel.They can be inconclusive in the sense that you can have Celiac Disease, but your antibody levels are too low to be detected. This is especially possible in your case because you have removed gluten from your diet. Or if you have positive blood work, but a negative biospy, some doctors would consider it to be inconclusive and would not give you a Celiac Disease diagnosis. But certain blood tests are very specific for Celiac Disease, so if it is positive, a Celiac diagnosis is warranted.

You definitely have Celiac Disease symptoms, and you have also had a positive dietary response. I would say that the possibility that you are a Celiac is pretty high, considering the positive dietary response and the fact that it runs in your family. I hope this helps.

-Brian

lightening16 Rookie

Hi

My only concern that is if you have been taking wheat out of your diet then your blood tests my come back negative even though this could be your problem.

The other reason you are not feeling 100% is that there seems to be gluten in everything and therefore you are probably getting some gluten anyway.

Good luck

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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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