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Wondering If I Have It...


toesocks

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toesocks Newbie

I'm going to bring this all up to my GP on Tuesday, but I thought I'd express my concerns and health problems here, and get a general opinion.

When I was young, I had many food sensitivities, especially milk. One was, indeed, wheat. I had several naturopaths also advise me to stop eating wheat, but never a real reason as to why... and I was young, so naturally I didn't listen and my mother didn't know what to do for me so it was a big mess. I didn't really have THAT many issue at the time, so it didn't seem vital, you know?

Then when I was ten, I began to have horrid digestion problems, was diagnosed with a thyroid disorder (hypo), got rashes on my arms and legs (not itchy, but dry skin and raised bumps and such), had massive weight gain... Lots of pain and such. I was also anemic. It was terrible. I also began having joint point and muscle pain at that time, but not too bad.

The older I got, the more health issues I had. They thought for a time I had lupus, but that's been ruled out I guess by a specialist. The only other thing he could think of was Fibromyalgia and CFS, but the aches and pains never really explained the acid reflux, IBS symptoms, gas, bloating, cramping/pain... nor why my thyroid was still low even when I took it daily at steadily increasing doses.

Anemia finally went away after I started eating more green leafies, but everything else got worse. I took a fall down the stairs in my Sophomore year of HS (back in 2002 if I recall), and it triggered months of agony-- join pain, muscle pain, fatigue, cramping, bloating like crazy, hair falling out, circulation issues, depression, anxiety, gained 100+ pounds over the course of two years, had a year long "kidney infection" (that they never really could explain), colds off and on for weeks at a time, dry mouth to the point where my tongue would crack, peeling lips (hardly ever cracked or bled, just peeled), coughing fits...

And within the last six months, it's gotten so much worse. I've always had huge tonsils and chronic infections, but one hit me and it spread to my remaining wisdom teeth (had removed) and UT. This was back in August. I've had so much fighting with the doctors, my old GP went apeshoot, then crashed his car into a tree and got replaced by this person I just... they're sweet, but they're clueless. She actually told me "I give up" once.

I can't even sit or stand for ten minutes. Shortness of breath. 40lbs gained. Appetite is just horrid, nothing ever seems to really fill me up, but I get so sick I'm in misery for days. I even eat when I feel stuffed and sick because I feel like I'm just not getting enough. My tongue was so sore and cracked a few days ago, and it still feels really dry even though I seem to be making spit near the FRONT of my mouth...? I don't get it.

But then I looked up symptoms... I just had a hunch after someone mentioned having Sjogren's at my GP's office, and it sounded JUST like me... it also sounded familiar.

Abdominal pain and such? Yes. Appetite issues? Ohhh yes. Back pain, and other joint and muscle pain? Yesyesyes. IBS-like symptoms (can have the runs and be constipated within hours of each other, have to RUN to the bathroom at times)? Yes. I get dehydrated rather easily. I have edema. Fatigue, definitely. Lots of gas. My hands cramp easily, as do my legs, to the point where it wakes me up at night sometimes. I often wake up blind in one eye and with distorted colors, not sure if that could be a symptom but might as well mention it... Floaty sometimes foamy stool that has gotten rather foul and is usually a light tan. My tooth enamel is NOT the best... Depressed, irritable, mental fogs...

It just all sounds too close to be a coincidence, but I'm just not sure...?

I just need to get together blood tests my GP can order. I have a state-given medical plan (Oregon Health Plan) so I don't know what they'll cover... And I need to know exactly what to ask for, because the GP will have NO idea I'm guessing. Does anyone have an idea about that sort of thing...?

I'm 21. I'm getting pretty dang depressed over all this. I want to be out there enjoying life, and this is just miserable.

Any suggestions or e-hugs are appreciated. Thanks for reading at any rate. :(


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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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