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Possible Celiac Disease?

needamiracle

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needamiracle Newbie
needamiracle
Posted

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
tarnalberry
Posted

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
needamiracle
Posted
  • Author
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
Ahorsesoul
Posted

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
Jean'sBrainonGluten
Posted

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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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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