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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.

Lichen Sclerosis
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21 posts in this topic

Anyone have it? If so, did the gluten-free diet make you feel better?

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My mother in law has it.. Although I am the one with celiac disease, she eats gluten-free while she is living here... The only thing that helps it is an ointment called "Betamethasone Valerate Ointment 0.1%"

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I don't think those two are known to be related. Lichen sclerosis is pretty common, though. And treatable.

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I don't think those two are known to be related. Lichen sclerosis is pretty common, though. And treatable.

LS isn't that common. They are both autoimmune. While they may not be directly related, I personally feel most AI diseases have a connection. I've read online cases of women with LS going gluten-free and feeling better. In case you have the wrong disease, Lichen sclerosis, in a nutshell affects the skin of the labia. (or rarely the penis)

At this point my results for celiac disease are considered negative, but I find that questionable. I notice when my symptoms of LS flare up, my "other" symptoms flare up as well.

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My mother in law has it.. Although I am the one with celiac disease, she eats gluten-free while she is living here... The only thing that helps it is an ointment called "Betamethasone Valerate Ointment 0.1%"

Becci~ I've never heard of that med. I'll have to look into it. I've been on clobetesol for years, but wanted to stop because my main problem is thinning skin, which the clob can make worse. I started protopic a few weeks ago, but frankly it just hurts me so far! I started using emu oil with vitamin E yesterday. I had used it years ago. At the time, my symptoms were in check, but I don't know if it was the emu oil, or I just happened to be in a good phase at the time. You might have your mil look into it as well.

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TPT: Has eating gluten-free helped with your lichen sclerosus? I was recently diagnosed with LS as well, despite the fact it is most common in post-menopausal women, and I'm 34! It's awful. I've only had the symptoms since having my baby a year ago. There is very little research on it (of course since it's not a "man" disease or supported by drug companies), but I also found things online suggesting there is a link between LS and celiac disease. Some women have said eating gluten-free is the only thing to suppress their symptoms. I'm desperate for anything to work!

I actually had an endoscopy (with biopsies) 3 years ago, which did not indicate celiac disease, but my GI still ordered the celiac disease panel of bloodwork, which I did today. Even if I don't have celiac disease, I'm going gluten-free in the hopes it will help with the lichen sclerosus.

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TPT: Has eating gluten-free helped with your lichen sclerosus? I was recently diagnosed with LS as well, despite the fact it is most common in post-menopausal women, and I'm 34! It's awful. I've only had the symptoms since having my baby a year ago. There is very little research on it (of course since it's not a "man" disease or supported by drug companies), but I also found things online suggesting there is a link between LS and celiac disease. Some women have said eating gluten-free is the only thing to suppress their symptoms. I'm desperate for anything to work!

I actually had an endoscopy (with biopsies) 3 years ago, which did not indicate celiac disease, but my GI still ordered the celiac disease panel of bloodwork, which I did today. Even if I don't have celiac disease, I'm going gluten-free in the hopes it will help with the lichen sclerosus.

I was only gluten-free for 2 weeks. I am still in limbo over the whole celiac disease thing. I actually have some allergy testing scheduled for next week. After that, I will work more on diagnosising or ruling out celiac disease.

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I turned 38 yesterday, and was diagnosed with LS about 5 years ago. My mother was just diagnosed with it maybe 2 years ago shorly after she had a hysterectomy. She was fine until her surgery. If I remember correctly, I think I suggested she may have LS.

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Hi ladies,

I'm new here because my naturopath has just put me on a gluten-free diet for my LS. I'm now 34, diagnosed at 27 after my first baby, but I've likely had LS since puberty as that was when I had the burning / itching symptoms which I don't have now. I was told I have an advanced case of LS and didn't even require a biopsy to confirm (have since had one and confirmed). My LS symptoms are fisures and labia fusing with splitting and bleeding during intercourse. Since my diagnosis I have been on: progesterone, estrogen, testosterone - none of which helped. I had surgery to remove scar tissue in 2006 (which has returned) and I am now on clobetasol and Protopic which are keeping me under control with a decrease in fisure splitting and scar patches are less white and appear to be more "stretchy". I have just started with a naturopth who insists that ANYONE with autoimmune disease should be gluten-free, so that's why I'm here. Anyone noticed an improvement with Gluten-Free?? (I might also try dairy-free, but not getting too far ahead of myself at this point).

I will be going for celiac testing shortly.

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I have just started with a naturopth who insists that ANYONE with autoimmune disease should be gluten-free, so that's why I'm here.

That's a good first step. Systemic candida (invasive candidiasis) is probably the root of the problem.

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Hi ladies,

I'm new here because my naturopath has just put me on a gluten-free diet for my LS. I'm now 34, diagnosed at 27 after my first baby, but I've likely had LS since puberty as that was when I had the burning / itching symptoms which I don't have now. I was told I have an advanced case of LS and didn't even require a biopsy to confirm (have since had one and confirmed). My LS symptoms are fisures and labia fusing with splitting and bleeding during intercourse. Since my diagnosis I have been on: progesterone, estrogen, testosterone - none of which helped. I had surgery to remove scar tissue in 2006 (which has returned) and I am now on clobetasol and Protopic which are keeping me under control with a decrease in fisure splitting and scar patches are less white and appear to be more "stretchy". I have just started with a naturopth who insists that ANYONE with autoimmune disease should be gluten-free, so that's why I'm here. Anyone noticed an improvement with Gluten-Free?? (I might also try dairy-free, but not getting too far ahead of myself at this point).

I will be going for celiac testing shortly.

Please do not delete gluten from your diet until after your gluten related testing is done as the tests will always be negative if you do. They are checking for antibodies and if your not eating gluten you will not be producing antibodies. Your doctor can check for other issues without your being on gluten so you can drop gluten as soon as testing is done for celiac/ gluten intolerance.

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Had LS for several years and it was getting worse. Was diagnosed with celiac disease in September. LS completely gone after only a couple of weeks without gluten.

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I was diagnosed with this 22 years ago. It was shortly after giving birth to my second child. I am thinking I may have a problem with gluten because I had a DH type rash almost a month ago that has appeared for the 3rd time in the past six months. I am trying not to make things "fit", but it seems to make some sense. In retrospect, when the LS presented our grocery budget was $50 a week and that had to go towards diapers and formula also. We literally lived on pasta. I started out being treated with a testosterone compound which was just awful. I then went to a diprolene ointment. I now use hydrocortisone valerate. I seem to be in remission and only use the cream occasionally if I feel things might be starting to flare.

Over the course of the years, I found that I preferred a "low carb" diet and seemed to feel better. I don't know if this has contributed to the remission, but as of a week ago I have stopped eating gluten. I will be interested to see if I have any LS flares going forward.

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I want to add an interesting note about steroids and suspected DH.

I was in them - injections, oral, topical for DH. All helped to some degree with the DH but I had horrid side effects which resulted in my derm withdrawing them - except topical.

It wasn't til I got off the topical that my DH finally healed and remitted. I was 2 months gluten-free, not low iodone when I decided to do it. Rash blew up and then when it went down it healed (before it stayed and looked like ringworm).

Then I added an iodine containing multivitamin and it blew up - that's another story....

So, I don't know if I am allergic to steroids (I suspect I can't take them in any form as they send my adrenals into a spiral) or if this is a hallmark of DH.

So, it may be worth an experiment if your DH reaches a healing plateau and you are using steroids.

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All,

I have Lichen Sclerosis (LS) and after alot of research I discovered that going on a low oxalates diet gave me "immediate" relief. It's difficult to be on a gluten free and low oxalates diet - but IT WORKS! In just two weeks on the low oxalates diet my horrible LS itching has completed stopped, and in the first 48 hours the intense hypersensitivity disappeared. You can learn about LS and a low oxalates diet on this foundation website:

http://www.thevpfoundation.org and http://www.lowoxalate.info. Order the cookbook from the VP Foundation, and read everything on these websites. My OBGYN's only answer to LS was to use that cortisone cream - it doesn't solve a darn thing. It's so fustrating that doctors don't suggest going on a low oxalates diet for LS. Many women suffer with LS and they don't have to... Also there's a Yahoo Group that has success stories of women (who have LS) that went on a low oxalates diet and their LS symptoms went away! Here's the Yahoo Group url: http://health.groups.yahoo.com/group/Trying_Low_Oxalates.

Also, I've only been gluten free for 4 months. When my LS symptoms didn't go away after going gluten-free I searched for answers and thank goodness found the VP Foundation.

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The Yahoo Low Oxalates link is incorrect in my last posting. Should be: http://health.groups.yahoo.com/group/Trying_Low_Oxalates

Or you can google the Yahoo Group - Trying Low Oxalates. You will need to join the group before you can view the resources or participate in the forums.

I hope this information helps others with LS.

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I have lichen sclerosus and was just diagnosed with celiacs which is in my family. I don't know how long I had LS before it was biopsied. I don't have the burning and itching, so I figured it was part of my vitiligo. I'll start the gluten free diet later this month and I would be very happy if it also helped clear up the LS. I didn't even know that was a possibility. LS is an autoimmune and comes in packs like the others. In addition to those 3, I also have Hashimoto's thyroiditis.

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Brand new to the group and first post. I recently discovered I'm gluten sensitive. I also have a fairly mild case of LS, which came up quickly in 2008 during a time of great stress. Was not diagnosed with LS for a long time however! Due to LS I developed squamous cell carcinoma, which led me to research, and I self diagnosed the LS. Was finally confirmed in December!

I discovered the gluten sensitivity very recently after going on an elimination cleanse. It does make sense that the two could be related as well. I'm hoping that eliminating gluten will help with the LS.

Best of luck to you!

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I was diagnosed with LS almost a decade ago when I was a teenager. Flared up when I was under immense stress in university, and unfortunately went undiagnosed for a year or so before I could find a doc who knew what was up. In that time I had a bit of fusing, and was in a huge amount of pain (vulvodynia). Took a few years to recover from the damage done in that first year, using betaderm ointment 3-4 times a week, but my flares kept coming back until I went gluten-free last year. I still get mild flare ups around my period each month (mainly itching), but since cutting out gluten I think my LS has improved hugely. 

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ravenra I'm so glad you commented on this old post and I happened to see it!
I can only offer an example from my own experience. For as long as I've had mild gastro symptoms I've also had what the docs have been telling me is bad thrush - it had similar symptoms but didn't really come and go or react to meds like you'd expect thrush too. Both of these also began under extreme stress during my first year of uni. I found out about lichen sclerosis as a related/similar condition to thrush so that had sort of been on my mind as a possibility. I went gluten-free for two weeks last month and had absolutely no LS/thrush symptoms but I dismissed it as too much of a coincidence and that I was treating gluten-free like a cure-all. Until...I'm back eating gluten this week for a blood test (still in the early stages of diagnosis) and it's (whatever 'it' is) back. With a vengeance :( three days to go... 
 

 

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ravenra I'm so glad you commented on this old post and I happened to see it!

I can only offer an example from my own experience. For as long as I've had mild gastro symptoms I've also had what the docs have been telling me is bad thrush - it had similar symptoms but didn't really come and go or react to meds like you'd expect thrush too. Both of these also began under extreme stress during my first year of uni. I found out about lichen sclerosis as a related/similar condition to thrush so that had sort of been on my mind as a possibility. I went gluten-free for two weeks last month and had absolutely no LS/thrush symptoms but I dismissed it as too much of a coincidence and that I was treating gluten-free like a cure-all. Until...I'm back eating gluten this week for a blood test (still in the early stages of diagnosis) and it's (whatever 'it' is) back. With a vengeance :( three days to go... 

 

 

Agh, thrush. I feel for ya!  I was told by like 5 DRs it was yeast infection, or an STI, or a half dozen other things - which were all horribly embarrassing at the time. My family doc even told me to use diaper rash cream, despite the fact that I was getting no sleep from the itching - and even tried sleeping with mittens on!  Getting a dx was a huge relief that I wasn't crazy and that there was a legit reason that I didn't cause.

 

I forgot to add, whenever I get contaminated by gluten my LS flares up, so it does seem like there's a link.  Good luck!  

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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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