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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.

Neurological Symptoms?
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15 posts in this topic

Hi! I'm new to these forums (though I've lurked the last couple years), and I'm hoping you might have some advice, insight, or experiences to share with me.

My husband was "diagnosed" with celiac disease in late 2009. His blood tests were ordered by our family practitioner and they came back positive. We were referred to a local GI doc. The GI told my husband that it was fine to continue the gluten-free diet prior to the endoscopy (we now know that is not the case). The doc also took only 1 or 2 samples of the small intestine. The endoscopy came back negative. Our family practitioner told us she was certain my husband had it, and she was willing to refer us to a GI doctor in a local large city, but since we already had a $1000 bill from a procedure that was done incorrectly, and it was obvious the gluten-free diet was working, we declined.

Since then, my husband has maintained a strict gluten-free diet with no "cheating." He recently began having some neurological symptoms, mostly intermittent numbness/tingling in his arms and numbness and pain in his legs (especially the left). We've found a new GI and we're also seeing a neurologist.

Thus far, the neurologist had ordered a brain/spine MRI, which came back negative. Blood levels of B12 are normal (though he does have low Vitamin D levels). The neuro is scheduling him for an EMG. He wanted to know if our new GI was going to confirm the celiac diagnosis, because celiac can be a cause of nerve damage. We had discussed the possibility with our GI. He ran a celiac panel, which came back negative, as was expected since my husband consumes no gluten whatsoever. If he was to do an endoscopy, he'd have to do a gluten challenge, and I have reservations. Nerve damage is nerve damage---the gluten-free diet isn't solving the numbness issues, so do we really need a diagnosis in terms of how we'll treat the nerve problems? My husband will get really sick---I don't know if it's worth affecting his job performance (he's at a new job and there's no paid time off for him, plus he's in the running to move up pretty quickly), let alone the fact that we have three small children...I'm just wondering if having that official diagnosis is worth the path to get there, considering it doesn't really change anything that we'll be doing.

Anyway, it feels like we're hanging in limbo with no answers and it's frustrating. We're trying to figure out what's causing these nerve issues but we have no answers thus far. Also, if somehow it is celiac-related, obviously my husband is following his diet, so it doesn't look like there's much promise of the diet fixing the nerve issues.

If you have any experience, please share! I don't even know how to continue this post because that's how up-in-the-air we are right now. :wacko:

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It may be that his numbness is a symptom of cross contamination from gluten. Some people have severe neuro effects from gluten, and just because he didn't have these symptoms before doesn't mean he can't have them now.

Does he exercise? If he overexercises it could be a problem. lack of exercise can also cause oroblems. Has he seen a good massage therapist? Could it be a pinched nerve, etc?

It is also common, in celiac recovery, to go through stages. This could be a stage.

Could be a vitamin or mineral deficiency. Has he had a thorough vitamin panel? Most Celiacs have a few deficiencies that need supplementing - food alone usually won't resolve the deficiency.

It could be another food intolerance. That's common during healing. Some are temporary, others permanent.

The one thing Ive learned from this whole thing is to preface how I feel or my health with "right now". It helps to keep a journal - food, symptoms, etc. a journal can help him pinpoint what/when things happen.

Good luck to both of you.

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?diabetes?low vitamin B1, what was the B12 level? is he supplementing Vitamin D??

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It may be that his numbness is a symptom of cross contamination from gluten. Some people have severe neuro effects from gluten, and just because he didn't have these symptoms before doesn't mean he can't have them now.

It helps to keep a journal - food, symptoms, etc. a journal can help him pinpoint what/when things happen.

Pricklypear gave some good advice and suggestions of possibilities. I wanted to elaborate on the two points above. That was what happened to me. Cross contamination was the problem and a food/symptom journal helped me figure it out. We needed a gluten free household for my son and I to become symptoms free. We also went on a diet of unprocessed foods until we healed and then we add new item one per week so that we can track symptoms. We now have a few processed foods that we can eat. We had problems with even some produce.

My neurological symptoms went away when I got gluten free enough.

Some celiacs are sensitive to lower levels of gluten than others so that the food that others eat without issues can cause problems for some.

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Hi there, my neuro told me that low vit D can cause numbness and your hubby is low on vit D, so hope he's supplementing at a sensible high level. I've also read about vit D causing numbness in my research. I experience extreme numbness every day, getting my vit D level checked next week. I've only been gluten free for a couple of weeks.

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I have a very different set of neuro symptoms, but mine are definitely gluten related. They include transient anteretrograde amnesia affecting episodal memory (I don't remember a damn thing that happens), sensitivity to light, sound and movement (similar to visual migraines, but they last until the gluten clears my body), foggy thinking (I get stupid) and difficulty forming sentences. The symptoms start within 10 minutes of being glutened. The only blessing is that it makes it fairly easy to track down the source of gluten.

FWIW, the gluten free Rice Chex are definitely not gluten free...

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My neurological symptoms ( including ataxia ) were causes by ingesting soy .

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I had almost identical symptoms to your husband last year and had a full neurologic work-up for multiple sclerosis, lyme, etc. It ended up being due to gluten cross-contamination as well. I was strictly gluten free in a household of little gluten eaters, and even though I had a separate toaster, wash rag, pasta strainer, etc. it was not enough. I also had to stop all gluten-free processed foods and my neuro symptoms are finally gone (they did come back 1x following cross contamination from a restaurant). I have learned the hard way that I am "super sensitive."

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I just re-read your post. I was diagnosed based on family hx, symptoms, and sky high celiac antibodies (no biopsy). When I developed neurological symptoms I had negative celiac antibodies because of being gluten-free. I was offered an endoscopy and biopsy but I declined because I knew that my body would not be able to handle a gluten challenge (plus I couldn't see the point of paying money for the test when no matter what the result, I would continue to avoid gluten for life).

Gluten sensitivity (lumping together both celiac disease and non celiac gluten sensitivity) is the 3rd most common cause of peripheral neuropathy these days. When I was diagnosed with Celiac Disease 3 years ago I had no idea that I was risk of neurologic complications if I followed the diet. Now I know better!

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My daughter was diagnosed with celiac through bloodwork at her GI. The celiac panel was done as rule out because she had so many different types of vague symptoms including tremors in her hands. The endoscopy was done before the celiac panel came back (I feel they did not believe she had celiac) and we were told the endoscopy was normal showing no signs of damage. When her celiac panel came back, she was told her numbers were the highest they had seen for a patient. Since the first endoscopy was done before the positive blood test, they asked her to come back for a repeat endoscopy at their own expense and this time they took samples. Once again, the endoscopy came back normal even though her blood test was highly positive. We were told they felt she was a mystery. I guess my point in all this is that just because an endoscopy comes back negative it does not mean a person is not celiac. I have always found it troubling that medical providers find this to be the "gold standard" in diagnosis. Celiac can cause damage in insidious ways other than GI damage and the damage to intestines can be so patchy. I would think the neurologist could accept the positive blood test and positive response to the diet. My daughter could not go back on gluten now even if she tried because now that she has removed it from her diet even the tiniest amount makes her so ill she feels as though she is digesting razor blades. Thank goodness she does not get cc'd very often. I hope your husband stays away from gluten, especially since he is having neurological symptoms. It always bothers me when physicians want someone to intentionally make themselves sick by eating gluten just so they can prove the obvious through their testing. Medicine is not and never will be an exact science

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I also want to add that I wish you and your husband the best and I am sure that you will get to the bottom of this :)

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After reading ever1s post I started silently crying... I too have the hand tremors, mental fogginess, and see shadows out of the corners of my eyes. I'm glad I finally went to my Doc/friend and told her and she's running sooo many blood panels on me. Thank y'all for opening my eyes and showing me I'm not alone( even tho my older sister and I both have celiac disease, but we never talk about it).

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Just want to put this out there...see if neuro will run panels to check for other viruses active in body. I have nerve damage due to that very reason. It is painful and dibilitating....I take an anti-viral med along with lyrica and cymbalta to combat the pain...after 4 years the ebv seems to be down....however, I recently decreased my med and the pain has become more active...so going to see about increasing again! I orginally tested postive for active viruses of EBV, chicken pox, and Herpes Virus....what happens is your body is attacking itself so all the viruses you have immunity to...become active and attack the nerves....it is awful!

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Do you mean the Chex marked Gluten Free? My son (20) uses the cereal for snack food and goes through boxes of it!

 

Hi! I'm new to these forums (though I've lurked the last couple years), and I'm hoping you might have some advice, insight, or experiences to share with me.

My husband was "diagnosed" with celiac disease in late 2009. His blood tests were ordered by our family practitioner and they came back positive. We were referred to a local GI doc. The GI told my husband that it was fine to continue the gluten-free diet prior to the endoscopy (we now know that is not the case). The doc also took only 1 or 2 samples of the small intestine. The endoscopy came back negative. Our family practitioner told us she was certain my husband had it, and she was willing to refer us to a GI doctor in a local large city, but since we already had a $1000 bill from a procedure that was done incorrectly, and it was obvious the gluten-free diet was working, we declined.

Since then, my husband has maintained a strict gluten-free diet with no "cheating." He recently began having some neurological symptoms, mostly intermittent numbness/tingling in his arms and numbness and pain in his legs (especially the left). We've found a new GI and we're also seeing a neurologist.

Thus far, the neurologist had ordered a brain/spine MRI, which came back negative. Blood levels of B12 are normal (though he does have low Vitamin D levels). The neuro is scheduling him for an EMG. He wanted to know if our new GI was going to confirm the celiac diagnosis, because celiac can be a cause of nerve damage. We had discussed the possibility with our GI. He ran a celiac panel, which came back negative, as was expected since my husband consumes no gluten whatsoever. If he was to do an endoscopy, he'd have to do a gluten challenge, and I have reservations. Nerve damage is nerve damage---the gluten-free diet isn't solving the numbness issues, so do we really need a diagnosis in terms of how we'll treat the nerve problems? My husband will get really sick---I don't know if it's worth affecting his job performance (he's at a new job and there's no paid time off for him, plus he's in the running to move up pretty quickly), let alone the fact that we have three small children...I'm just wondering if having that official diagnosis is worth the path to get there, considering it doesn't really change anything that we'll be doing.

Anyway, it feels like we're hanging in limbo with no answers and it's frustrating. We're trying to figure out what's causing these nerve issues but we have no answers thus far. Also, if somehow it is celiac-related, obviously my husband is following his diet, so it doesn't look like there's much promise of the diet fixing the nerve issues.

If you have any experience, please share! I don't even know how to continue this post because that's how up-in-the-air we are right now. :wacko:

 

Hi, I'm so sorry for your struggle. I gave up on the tests myself as we had gone through out of pocket expenses for so many tests before a doctor thought of Celiac. My endoscopy was negative, blood test etc. I found a GI doc who believed me and we moved on to keep up on treatment. As to the neurological Symptoms it's a roller coaster for me. I think it's related to contamination as I find tiny exposure and more than one hit I have tingling, shakes, spasms and at it's worse need assistance to go downstairs. Strangely upstairs isn't as bad. I've come to understand my ability to process and intake through my small intestine is permanently impaired and any tiny ingestion prevents all those vitamins that are needed for the mechanics of movement and nerves. I have had success with liquid supplements and take Gabapentin for nerve pain. Calcium and magnesium are big for me as we'll as the B s. It's alot of hypervigilance. Good luck.

I have a very different set of neuro symptoms, but mine are definitely gluten related. They include transient anteretrograde amnesia affecting episodal memory (I don't remember a damn thing that happens), sensitivity to light, sound and movement (similar to visual migraines, but they last until the gluten clears my body), foggy thinking (I get stupid) and difficulty forming sentences. The symptoms start within 10 minutes of being glutened. The only blessing is that it makes it fairly easy to track down the source of gluten.

FWIW, the gluten free Rice Chex are definitely not gluten free...

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FWIW, the gluten free Rice Chex are definitely not gluten free...

That comment is completely off-topic, but also offers nothing to back it up with proof. The drive-by shooter, JoH, has not been back in over a month, so this is probably a dead end.

Now, if we want to go back to the original subject of Neurological Symptoms...

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 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,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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