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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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    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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