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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Echen Alexander

Gluten-Related Muscle Pain/discomfort

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Um...hi. My name is Echen. Im new here.

Well basically my story is that ...Ive had a lot of problems for a while but there were so many of them layered over each other that I couldnt make sense of anything at all. anxiety/depression/muscle pain/headaches/backaches/fatigue etc. This all formed into a great big ball of BAD that made so much chaos I couldnt even figure out what was wrong.

So I saw a naturopath at the local free herbal clinic . I described to her the pain in my body and I explained how it wasnt just typical muscle aches. It was this horrible intolerable feeling in my muscles...as if they were sponges filled with lactic acid...and i was constantly wringing them out to no avail.

For weeks I would try to focus on my instructor in class (im a freshman college student) but I couldnt focus unless I was constantly massaging my hands/arms/shoulders/shoulder blades. This probably made me look neurotic but I couldnt stop because it was the only thing that made the feeling go away. While doing this I could literally feel the lactic acid moving around and this created some strange confusing mixture of great relief and continued pain....though it was really more like extreme discomfort.

The wierd thing is that lactic acid is only supposed to get into your muscles if you excercise too much or incorrectly. Im not a "couch potatoe" to use an expression but I dont really excercise/ work out at all either so the excercising too much theory doesnt hold water.

ANYWAY the naturopath said: that years ago...she used to have the exact same feeling...exactly. She said that when she stopped eating gluten it went away completely in a couple of weeks and never came back.

So I stopped eating gluten completely 18 days ago...over two weeks now. I wouldnt say I feel great but I feel a lot better. The lactic acid feeling comes back a little but its not nearly as chronic.

And at one point when I ate fast food after for two weeks without gluten...I noticed that feeling came back immediately and lasted for about 2 hours.

So Im really starting to feel like I may be gluten intolerant. Its sort of a relief but its so incredibly difficult to cope with because so few people...so few restaurants even care about this problem. Even my campus which is supposed to be ultra liberal or whatever ...doesnt make much effort to help me with this problem. I go hungry a lot lately.

So my question is:

Has anyone else experienced this specific type of muscle pain before stopping gluten?

( I dont just mean stiffness or soreness...I mean the type of pain that makes you desperatly want a 5 hour massage immediately no matter what the cost cause you cant take it anymore)

Any responses would be greatly appreciated. thanks!

PS-- moderators: im really sorry if I may have posted this in the wrong section of the forum. Im new here and im still getting my bearings so I did the best I could.

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I have to admit....I understand your pain. My muscles were painful my entire life until I went gluten free, and that didn't happen until I was 47. As a child, many of my absences from school were because my muscles (and tendons and ligaments) were too painful--I spent a lot of mornings soaking in very warm tubs of water to get my muscles to a point where I could go to school. I must share with you, though, that after I went gluten free, I would still have lactic acid buildup problems when I overdid myself at the gym. After I read, "The Hidden Story of Cancer," by Brian Peskin, though, I learned that by taking a certain ratio of Omega 6's to 3's, the lactic acid pain went COMPLETELY away. It has to do with providing enough oxygen to the body's cells. Anyway, if you'd like to enjoy the benefits of this solution, you'll need to take 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of either safflower oil or grapeseed oil--just put it in a glass of juice. You'll feel absolutely amazing--no muscle pain again...EVER!

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I know exactly how you feel. This is actually my first day going gluten free and I'm really hoping it works. The muscle aches that you described are my biggest complaint along with the fog but I do have a long list of symptoms. I am constantly uncomfortable and stretching to try and get some relief. It feels as though my back and shoulders are squeezing my spine and if I could just stretch or crack it the right way it would release. I'm also young and healthy (exercise and weight wise) and this makes me feel very old. I had my gall bladder removed a week ago too. I did have gall stones but I'm now thinking that most of my problems weren't caused by that. I'm sorry I'm not able to answer your questions but just wanted you to know that you described my "uncomfortableness" to a T. Good luck!

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Rosetapper gave you some great advise. I was on here a few months describing the same pain, went on the Omega 3 and it stopped my issues.

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I can relate to the extreme shoulder and neck pain. Being gluten free has really helped me.

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Oh yeah. I can really relate. Feels like my body is compacting and if I could just stretch/rub/ bathe for long enough, it would stop. I'm gluten-free & it has helped a lot. I'll try the omegas

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I have this exact same issue. Ever since I was ten years old I've had chronic pain. Not chronic as in it happens often, but it's 24/7 without exaggeration. I had originally thought it was the joints but it's actually the muscles. They feel hard as a rock, as if i have 15-20 knots in my back according to a masseuse I went to once - and it wasn't just my back. It's in my fingers, my temples, my jaw, my neck and my arms too, and my right knee, calf, ankle and hip. I've gone back and forth to doctors since it started, and I've been told it's from "growing pains", that it was joint pain, that i might have lupus, that it would go away with shock therapy, that it was from not enough sleep, that it was from being too tense or stressed out, that it was from hormones etc etc etc. However, being diagnosed a month ago with celiac and going gluten free immediately... the pain is reduced dramatically. Now it only comes and goes maybe once every few days. I am pretty glad because I was so tired of always hurting!

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I dropped gluten and kept up the Omega 3s.

Musle cramps and pain disappeared totally a few weeks afterward.

I can't believe I put up with it for decades - being told it was normal...

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Wow, interesting to see others who feel exactly as I feel...I just joined today. I found out through extensive allergy testing that I have a wheat allergy and milk allergy....I have been diagnosed with EE, which is short for Eosinophilic Esophagitis...anyone even heard of it? The symptoms I have from that include dysphagia-difficulty swallowing, ringed esophagus and also chronic heartburn/acid reflux/GERD.

I have also been diagnosed with fibromyalgia...I have severe muscle pain all over my body, but mainly my neck, shoulders, back and arms. It feels like the muscle pain that you have when you have the flu or like your body is just bruised. It's 24/7 all day everyday. After doing alot of research on food allergies I have a hard time believing (but am HOPING) that all my pain (not only muscle pain, but stomach pain, constipation, headaches, oh the list goes on) could be related to these food allergies???!!!

Anyone in the same boat as me?

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Wow, interesting to see others who feel exactly as I feel...I just joined today. I found out through extensive allergy testing that I have a wheat allergy and milk allergy....I have been diagnosed with EE, which is short for Eosinophilic Esophagitis...anyone even heard of it? The symptoms I have from that include dysphagia-difficulty swallowing, ringed esophagus and also chronic heartburn/acid reflux/GERD.

I have also been diagnosed with fibromyalgia...I have severe muscle pain all over my body, but mainly my neck, shoulders, back and arms. It feels like the muscle pain that you have when you have the flu or like your body is just bruised. It's 24/7 all day everyday. After doing alot of research on food allergies I have a hard time believing (but am HOPING) that all my pain (not only muscle pain, but stomach pain, constipation, headaches, oh the list goes on) could be related to these food allergies???!!!

Anyone in the same boat as me?

Welcome here! I, too, have been diagnosed with FMS which is tough as I have herniated discs and such on top of that. It feels as though I have been beaten repeatedly with a baseball bat - I bet that is how you feel. Unfortunately after being strictly gluten free for a year the intense throbbing and pain has not subsided at all. It even hurts to put clothes on and to have showers. If only I could be suspended from the ceiling to sleep! :D However, there are those who have had symptoms disappear in a few short months. I was talking to a woman last week who said her FMS completely cleared up in 3-4 months! I would give a lot to have that happen but am still hopeful. Each of us is different - perhaps it is just taking longer with me because of my injuries. So, you can (and always should) be hopeful. :)

As far as your other symptoms go, it is so very different with everyone. Some feel their symptoms subside in weeks; some months; some longer. There is no way of telling how long, sadly. Just keep hanging in there!!

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Hi Echen!

Yes! I spent countless hours during the middle of the nights massaging one of my little girl's legs, arms, wrists, feet, toes. This went on for about two years--three nights a week. Two pediatricians said, "It's growing pains" repeatedly. I took her 90% off gluten and in about six weeks she was down to muscle and joint pain about once every few weeks.

Then we realized we needed to actually be on gluten to test for Celiac. After some reading I also decided to test her twin sister (due to tooth enamel defects). We gluten loaded both kids and our poor daughter with "growing pains" was in agony. My husband and I gave each other the "I'm scared about this" look a few times.

Both girls are now diagnosed Celiac and we've been 100% gluten-free for a month. She has had pain twice.

Personally, I believe that every child (or person for that matter!) who experiences this type of pain should be screened for gluten intolerances/Celiac Disease.

Thanks to other posters--I'm going to also add in the omegas in the balance mentioned above.

Wishing you all painless days ahead!

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So my question is:

Has anyone else experienced this specific type of muscle pain before stopping gluten?

( I dont just mean stiffness or soreness...I mean the type of pain that makes you desperatly want a 5 hour massage immediately no matter what the cost cause you cant take it anymore)

Any responses would be greatly appreciated. thanks!

Yes, Echen, I have celiac, and this is one of my worst symptoms. After going gluten-free, from 2 weeks to 6 weeks I had a honeymoon period, where I did not have to go to my chiropractor. Then, due to a leaky gut and developing a lot of other food intolerances, the pain came back. I had it under control with a lot of foods eliminated, then after 4 years, the pain got worse, and I had to do some muscle testing and eliminate some foods I had been eating every day for years. I have been getting almost 5 hours of massage a week for the first few months of this year. Exercise and exertion makes it necessary. If I get gluten contamination, the pain is a lot worse than with other foods, but it has been a few years since I had that.

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The wierd thing is that lactic acid is only supposed to get into your muscles if you excercise too much or incorrectly. Im not a "couch potatoe" to use an expression but I dont really excercise/ work out at all either so the excercising too much theory doesnt hold water.

Lactic acid occurs naturally after exercise in some people and is not the result of exercising too much or incorrectly. It should not last more than a day after exercise. I get sore after every work-out when weight training but you have to push yourself with weights if you want the benefit. It's normal.

I have no answers for you but hope you find relief soon and feel better! :)

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Yes! I have this. It's awful. It started about three years ago maybe and had been getting worse. I went gluten free twelve days ago and although two days ago it was very bad, today has been the best day! I have no pain and I ache only very slightly (although the lactic acid feeling comes back when I walk up the stairs or I lift something).

The pain is worse in my legs (especially my calves) but it affects my whole body and I feel as if stretching will release it (whatever 'it' is) but it doesn't.

I can't believe how much better I've been feeling today.

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I'm going to the CDF conference this weekend in LA and will try to ask what the connection is between lactic acid and gluten! If I get an answer, I'll let you know!

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I know this is an old thread, and I've voluntarily gone gluten-free, but this describes the ache in my legs perfectly. It's gone down quite a bit since I've been gluten-free, but a super bad day on Friday (work stress, being told I needed to do $2300 car repairs on a car not worth it, etc.) I must have has something w/ Gluten in it (or cross contamination) and so I ended up getting all 3 bad things in one day. Suffering from the muscle aches today, so on day 2, and it'll probably go another 3 days.

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Yes, I have had horrendous muscle and joint pain like daggers for years now- i have also been going back and forth to doctors for years now- and had pints and pints of blood for tests taken- I am so tired of it as no painkiller seems to work either. This Summer I was very ill with D and my local village doctor suggested I try a gluten exclusion diet- I felt fabulous after only a few days!! When I got back home I went to my normal doctor and was told that since I had been gluten free I had to go on a gluten challenge - as I generally used to limit my bread and pasta, cakes, etc intake to control my weight i have found this gluten challenge a real challenge!! I had the most horrendous reaction when I introduced gluten - my joints are like dagger!!!And I am generally very Ill - constant tummy ache, dizziness, tiredness, etc. I am having my biopsy tomorrow and I really hope my doctor does not tell me again- You are fine, just take paracetamol!! All in all I am very happy to hear that other people also have similar problems,!

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