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Please Help With Celiac Diagnosis


Gobbie

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Gobbie Apprentice

Hi, I have many food intolerances and allergies, all tested for, including gluten.

The test was carried out only last summer so by then my intestines seemed to have been damaged.

My symptoms were severe and only worsened so I suspect myself to be a celiac.

Symptoms include:

-Diarrhea always within 30mins.

-Bloating

-Cramp

-Abdominal pain

-Indigestion

-Gas

-Stomach noise

-Fatigue

-Dizzy

-Body holding too much water

-Insomnia

-Stabbing pain to entire body muscles the next day which lasts all day

-Depression and feeling miserable

So I am getting the blood test tomorrow.

However, my worries are after reading so many articles on how often tests come out negative despite suggestive symptoms. I am seriously concerned what to do next if the same happens for me.

My abdominal pain is so severe and chronic that I am 100% sure there is a problem but if the test comes out negative and I won't be able to get a scan/biopsy, what do I do then? Can I receive alternative testing else where?

My allergy/intolerance test during summer involved Bio-electronic regulatory medicine which utilises acupuncture points of fingers whilst holding an electrode to see resistance in the body.

The results seemed to be correct as I have the worst reactions with the allergens suggested by them.

Along with the Celiac test, I am to have blood allergy tests so what if the results are different?

I am all alone doing this..

I am really scared and worried about all this. I would really like it if I can receive some advices..

Thank you so much.


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Mtndog Collaborator

Many of us had negative test results but suspected that gluten was a problem so stopped eating it. You sound as if you feel really sick so you know something is wrong.

If your test comes back negative, you have a few choices. You can pursue testing on your own (Enterolab) or you can stop eating gluten and see if it helps. Once you eliminate gluten, give it time and keep a journal. It may help you figure out what other foods, if any, are bothering you as well. When I first stopped gluten, I also had to stop dairy and soy which I found out by keeping a food diary. I was able to reintroduce them once I had healed (but NOT gluten).

Also, if your test is negative, ask your doctor what else could be causing your symptoms and how you can be tested. Because I initially tested negative for celiac, they tested me for many other things (colitis, rheumatoid arthritis etc). Don't turn down any tests because if nothing else, you can at least rule out what is making you ill.

And if you are getting tested for other diseases, you can still go gluten-free. Don't worry, you are in good company here! I hope you find out and get some relief soon!

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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