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Possible Celiac Disease?


needamiracle

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needamiracle Newbie

For approximately 5 years I've lost all energy. I have everything I can do just to get to work. I used to work 50 to 60 hours a week and work out 36 hours a week on top of that. Then, it seemed like all of a sudden, I had no energy, gained approx 50 lbs in a month.. I have other symptoms. I never told a doctor all my symptoms as I was so embarrassed. All of a sudden feeling so sick, running to the bathroom 'sitting down' and wondering where can I vomit at the same time. I can't sleep at night, I get knee aches only when in bed, after I sleep, no matter how many hours it is, I feel like I was hit by a bus and would stay in bed all the time if I could. I want my life back. I'm ashamed to say it, but I hope this is the answer so I can fix the problem and live a normal life. I want to want to go out, go to the gym, date..... I think my family thinks I just need to go to sleep earlier and get out of bed. It's not so easy or simple as they think it is... I've looked at other people's symptoms and it all sounds like what I have. I also have juvenile diabetes and I'm 40, but I take very good care of myself other than no exercise since this all started. My new endocrinologist is writing a script for bloodtests. I requested to be tested for Celiac disease and chronic fatigue syndrome. Celiac sounds the most likely though. I would do anything to not feel this way!

I will be looking for a food list, although I won't change anything until needed tests are complete. I even realized I can't even eat shake and bake. I tried, but gave me major problem so I even threw the leftovers out. From what I looked up, it has gluten in it too. Thank you all for your insights and experiences and thank you for the forum. I will let you know how I make out!


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tarnalberry Community Regular

Sounds a lot like my fibromyalgia story. (Not saying you have fibro, but that there are a lot of things that could be at play - including celiac. Based on only what you've said, I wouldn't put celiac at the top of the list, but perhaps there are other symptoms you haven't listed.)

Keep up with the docs, and remember that you can always try a gluten free diet, regardless of the test results.

Good luck.

needamiracle Newbie
Sounds a lot like my fibromyalgia story. (Not saying you have fibro, but that there are a lot of things that could be at play - including celiac. Based on only what you've said, I wouldn't put celiac at the top of the list, but perhaps there are other symptoms you haven't listed.)

Keep up with the docs, and remember that you can always try a gluten free diet, regardless of the test results.

Good luck.

I don't have the widespread pain and tenderness that seem to be associated with fibromyalgia. Biggest problems: GI, always tired/exhausted, I've also been getting what seems to be vertigo more often(just started this summer and was so bad I couldn't even drive). Any suggestions I'm open too though. Been researching a long time...

Ahorsesoul Enthusiast

Welcome to the World of gluten free eating. I hope after the tests you try eating gluten free for a few months to see if you improve. Let us know what you find out.

Jean'sBrainonGluten Newbie

Hi, Actually the neuro symptoms of dizziness and nausea were eventually the most challenging for me. If the blood tests are negative you may still have a different kind of gluten or wheat sensitivity. So two things - you might want to do some web searches on gluten ataxia and neurological symptoms. Also you might try a gluten free diet being careful about issues of cross-contamination. I saw some improvement when I started with gluten free but the real change came when I figured out my toothpaste probably had some gluten. Good Luck!

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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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