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Another Newbie With Questions


memyself

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memyself Newbie

Thank you for taking your time to read this.

I have a list of symptoms and 5yrs of doctors not coming up with answers. I hope you might be able to tell me your opinion, having been sick with Celiac.

I do know that my step dad has it and when you test him for it, his tests come out negative, yet he does have it, so the testing confuses me.

Symptoms

- Yellow poo, it doesn't float, but sometimes water gets foggy and it sits like a blob of clay.

- Organs inflamed and then go normal, everything from gallbladder to lungs. I end up with asthma attacks etc.

- Hives, super dry skin

- Swelling of legs, hands, feet, face etc. can't tell if it is skin, or muscles swelling.

- Stomach always hurts and burns

- Stomach doesn't digest food fully at all.

Tests I Took

- I don't have any hepititus of any sort

- I don't have lupus (so they say)

- I did have a rheumatoid factor, but say I may not have rheumatoid

- I was tested for allergies, all negative

- Gallbladder, liver and kidney ultrasound taken, came out normal

I also had a blood test done that the doctor said was "the" blood test for celiac and he said it was negative.

I don't know where else to turn. My husband doesn't like me trying to find out what is wrong with me, but i can't walk around the house anymore due to swelling and horrible pain.

I was told they think i have fibro, that that only takes about 1/4 of the symptoms.

Thanks for your time.

Shan


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Hi there. That doesn't sound like any fun at all.

Gluten can do all sorts of whacky things to people. The only way to find out if your celiac tests are negative is to go on the diet very strictly for a few months. Have you tried it?

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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).
    • ThomasA55
    • 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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