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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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So I've been gluten-free for almost two years, and in the last six months, I've been experiencing very odd symptoms. I've been off of gluten (with the exception of small accidents) but now, I feel like I could sleep all the time. I've been under a lot of stress, and I've always tended to sleep less, but now I practically feel like a zombie in my everyday life. I've also been experiencing random, untargeted, pain. I've had a shoulder injury for about two years now too, and I had surgery on it in September. I was in physical therapy for it, and now also for lower back pain. But in the mornings when I get up, I feel like I've been beaten up. Sore, stiff, exhausted beyond belief....not even feeling like I slept at all. Both sides of my body have this pain, and it migrates. Mainly in my shoulders and upper back (under my arms, neck), but also in my lower back, hips, knees.

I have a family history of arthritis and there was a question of whether my grandmother had fibromyalgia. She never was given an official diagnosis, but she had a ton of FS symptoms that all pointed to it, and were never fully explained by the myriad of other things she had.

So, help? Obviously this is not a diagnostic tool or anything, but anyone with similar experiences? Or even, recommendations on what I should do, or what doctors I should see?

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So I've been gluten-free for almost two years, and in the last six months, I've been experiencing very odd symptoms. I've been off of gluten (with the exception of small accidents) but now, I feel like I could sleep all the time. I've been under a lot of stress, and I've always tended to sleep less, but now I practically feel like a zombie in my everyday life. I've also been experiencing random, untargeted, pain. I've had a shoulder injury for about two years now too, and I had surgery on it in September. I was in physical therapy for it, and now also for lower back pain. But in the mornings when I get up, I feel like I've been beaten up. Sore, stiff, exhausted beyond belief....not even feeling like I slept at all. Both sides of my body have this pain, and it migrates. Mainly in my shoulders and upper back (under my arms, neck), but also in my lower back, hips, knees.

I have a family history of arthritis and there was a question of whether my grandmother had fibromyalgia. She never was given an official diagnosis, but she had a ton of FS symptoms that all pointed to it, and were never fully explained by the myriad of other things she had.

So, help? Obviously this is not a diagnostic tool or anything, but anyone with similar experiences? Or even, recommendations on what I should do, or what doctors I should see?

I would go have a vitamin workup. Zombie like, extreme fatique, muscle pain...are all symptoms of vitamin D deficiency.

When I was first diagnosed with a severe vitamin D deficiency, I just felt in a fog all day, it felt like I was litterally dragging myself through each day, I would go to bed early and wake up the next morning, after sleeping like a log feeling like I hadn't slept at all and within 30 minutes felt like i could go to sleep. I would close my eyes in the bathroom, close my eyes walking. I felt terribly tired.

I got back up to a normal level..but then this winter I started feeling like I was dragging again and feeling like it just takes so much effort just to make it through the day. Sure enough I got tested and I am low on vitamin D again.

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I agree with the previous post that a vitamin work up is in order, but I would bet my next hard-won meal that you have a thyroid disorder. It's so common with people who have celiac disease, I wouldn't be surprised that it's implicated in the gluten-intolerant as well.

Symptoms of hypothyroidism include fatigue (sometimes to the extreme), weight gain, hair loss (the outside third of your eyebrows may be gone), deep muscle and joint aches, insomnia or way too much sleep, dry skin, brain fog, cognitive decline, memory problems, depression (this just tops the list and you may have any or all of these). Many of these are common to all autoimmune conditions, but thyroid disease is the most likely and it just takes a blood test (or a few, depending on your results) and a very inexpensive thyroid replacement prescription.

Fair warning: many docs, especially older doctors, are not good at interpreting thyroid lab results. Even older endocrinologists might prefer the older lab references, which many modern doctors feel are far too wide, that is, the normal reference range includes a lot of sick people. You'll want to ask for a Free T3, Free T4 (NOT total T3 and or total T4, that's an old test panel!!) and TSH tests. If your TSH is below 3.5 (the higher that number, the lower your likely thyroid level, yes, it's backwards), then you are most likely in need of replacement hormone and should get tested to figure out whether or not you have Hashimoto's disease, the autoimmune disease that causes low thyroid (it's another blood test of the anti-TPO antibody).

I'm not crazy about all aspects of Naturopathy, but Natropaths are really good at figuring out thyroid and hormonal problems. If your doc doesn't seem to know about the panel with the free T3 and free T4, you want to see someone else...(s)he's not up-to-date. At any rate, she'll likely run the TSH, if she does then ASK FOR A COPY OF YOUR TEST RESULTS and check the number. DO NOT take her word for it that the levels are ok. I can't tell you how many mistakes have been made just in my and my family's cases where thyroid testing is concerned, and have heard the same things from many people online in the thyroid forums. To read more, check out Mary Shomon's site. Just google Mary Shomon Thyroid, you'll find it.

Low thyroid is an easy fix, but will take some weeks to feel strong again if thyroid is, indeed, your problem.

So I've been gluten-free for almost two years, and in the last six months, I've been experiencing very odd symptoms. I've been off of gluten (with the exception of small accidents) but now, I feel like I could sleep all the time. I've been under a lot of stress, and I've always tended to sleep less, but now I practically feel like a zombie in my everyday life. I've also been experiencing random, untargeted, pain. I've had a shoulder injury for about two years now too, and I had surgery on it in September. I was in physical therapy for it, and now also for lower back pain. But in the mornings when I get up, I feel like I've been beaten up. Sore, stiff, exhausted beyond belief....not even feeling like I slept at all. Both sides of my body have this pain, and it migrates. Mainly in my shoulders and upper back (under my arms, neck), but also in my lower back, hips, knees.

I have a family history of arthritis and there was a question of whether my grandmother had fibromyalgia. She never was given an official diagnosis, but she had a ton of FS symptoms that all pointed to it, and were never fully explained by the myriad of other things she had.

So, help? Obviously this is not a diagnostic tool or anything, but anyone with similar experiences? Or even, recommendations on what I should do, or what doctors I should see?

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GFAustinite

I feel your pain. Literally. I am very low in vitamin D and B12 among others. My thyroid is low. My celiac was diagnosed in Feb and the Hashimoto's in March. I am taking mega supplements and a starter dose of thyroid hormone. So far still exhausted, zombie-like, in muscle and joint pain, depressed, moody as !%#, eyebrows half gone, etc.

I agree with both previous posters. Get vitamin levels done and a TSH, FT3 and FT4 done. I am hoping to start feeling better soon, but if my villi are badly damaged I know it will take time. I honestly dont know how vitamins are absorbed in a damaged gut, but the well informed on this board swear it will eventually do the trick.

Please get the tests, then let us know so we can cheer you on.

Two things have improved a bunch for me. Being gluten-free for 8 weeks except for a couple of dumb accidents, no more bowel issues AT ALL and the maddening itch of DH is much improved.

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Hey y'all,

thanks for the information and encouragement. I really appreciate it...the pain is frustrating because I can't figure out its origins or its pattern, and my fatigue is just crushing. Granted, I recently had a close family member pass away and another one is in the hospital, so everything is very stressful right now, so I'm sure stress is part of it.

I did just have a regular blood panel done a couple months ago at my doctor's. I don't know what exactly "normal" bloodwork entails, but do they typically test thyroid, or would I need additional testing? I'm also wondering about the possibility of fibromyalgia.

I really appreciate it, everyone!

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Tsh, TPO, and free t3/t4 are NOT normal blood work, unless you have an autoimmune savvy doc.

Get copies of all your labs, as advised above.

Thyroid problems, like Celiac, can shred your world. Don't know any other way to accurately put it.

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I usually just lurk on here, but thought I'd reply to this as it is VERY familiar. The "crushing" fatigue, joint pain especially in the mornings, is all typical fibro symptoms. I have gone through the last 5-10 yrs trying to find out what was going on because these feelings were just NOT normal for a 30 yr old woman. I was told I was crazy (literally) by one dr, other drs just did nothing. After going through many drs and winding up in the ER and feeling like maybe I WAS loosing my mind I found a Godsend of a dr. She believed me and sent me in for every blood test under the sun. When they came back, she said she was sending me to a rhuematoid dr, a endocrinologist and an internist. The internist dx the celiac which did not surprise me because my mother had it. The endo dx hashi's. The rhuematologist dx me with fibro and she is whating for another really good flare to possibly finish the dx with lupus. The problem with fibro is most the meds to help with it are antidepressants. I have had depression issues trying to get all this figured out, but don't feel like they would do anything but put a bandaid on the issue. Fibro is dx primarily with just symptoms, and alot of the time they mimick alot of other issues. Hashi's causes pain, celiac causes pain, fibro causes pain.....alot of pain starts to where on your body and it brings you down into a depressed state. definately take some good vitamins and don't do too much. I have learned to pace myself and pay for it if I push through doing someething that is exhausting. I spend the next few days paying for it. Know that you are NOT alone, but it's a long road. Good luck and let us know how things go.

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You might also want to examine your diet and think about if you have added anything new to your diet lately that you could try removing.

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Yeah, I'm definitely thinking I need to examine other factors. I'm not eating anything different. My doctor is willing to explore autoimmune conditions, though I doubt she had the tests run without me doing anything. Should I see a rheumatologist? I'd really like to figure this all out.

I also seem to have a really hard time shaking infections. I'm super susceptible, and it legitimately seems like if I can get it infected, I do.

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