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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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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
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    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
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    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Thanks for the kind thoughts. The test results I got back a few comments ago and I said what they were which was negative on everything. I just don't think it's celiac but something that created this domino affect. I plan on going to my regular doctor because honestly I feel the GI one was useless. When I told her back in Feb that I wasn't sure I'd be able to have the colostomy and endo she said "well then we won't be able to help you". 😕 The peanut butter I bought was organic . I had looked at the Aldi brand which I never had any issues with and it had soy so that's why I looked for a brand that didn't have any soy. I haven't had chocolate since February either due to the soy. I hadn't eaten anything but fresh fruit, vegetables, Chicken or fish since mid Feb. I did have some dried fruit which I seemed ok with but now the last two days I've gotten gas from that :(. I did have prunes awhile back and they also gave me gas which never happened before. I rarely eat prunes as it as always done the opposite of what it commonly is used for .
    • Sounds like the blood test is useless in your case.  Some times people have elevated antibodies for a few months after gluten-free.   The tests have a range for normal because it is normal to have  those numbers.  Two months from now, they may be slightly different.  There are other things that can cause low levels on these tests.  
    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
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