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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.

Top Five Reasons To Get A New Doctor
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184 posts in this topic

#5 You only get less than the average face time of 5 minutes per visit

#4 It takes over 10 minutes non stop talking to explain all your symptoms

#3 He/she says...... :huh: I thought it was a kiddie disease!

#2 He/she says.....do you really think you can follow that diet??

#1 There is only ONE restroom in the office!!! :blink:

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#6 - They ask you how to spell celiac.

Nancy

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Um, how about this - - your primary care doctor (who THANK GOD referred you to a wonderful GI for serious anemia and internal bleeding) says

"what is gluten? what is it in?" :huh:

I broke up with her.

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(1) When you finally get up the nerve to tell your doc about your embarassing symptoms of gas, bloating, constipation and excruciating gut pain, she tells you "Oh, that's just IBS". Everybody your age gets IBS."

(2) When you ask how to treat IBS, she hands you a diet sheet which recommends you eat more fiber, but especially WHEAT bran.

(3) When you follow her 'IBS' diet sheet suggestions and your symptoms get WORSE, not better, she says, "You'll have to learn to live with it. There's nothing else we can do."

(4) Your doctor wants to test you for all the diseases for which you have no risk factors (like breast cancer, heart disease, etc.), but can't explain or resolve your excruciating gut pain symptoms.

(5) Your doctor tells you that you're perfectly healthy according to your physical exam and test results.

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When your family doctor looks at you like "oh no! not diareah lady again!"

When your GI doctor who gave you your DX says "oh don't worry its not genetic" :blink:

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When your doctor says you are the second patient he has diagnosed with coeliac. (A bit reminiscent of the midwife telling me that my son was her first delivery, so I confessed he was my first baby too!)

Cathy

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When you figure out gluten is a problem ON YOUR OWN through an elimination diet, and you go to the Dr for a celiac blood test, and she says, "You don't have diarrhea. You can't have celiac disease unless you have diarrhea."

When the blood test comes back negative and the Dr says, "See, I told you so. You have IBS. Let me give you a prescription."

When you insist that gluten is the problem, due to dietary response, and she says, "You don't want to be on a gluten-free diet. It's impossible."

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How about when the doctor tries to describe Celiac disease my comparing it to a reaction to poison oak! Totally insulted my intelligence. I never try to flaunt my degree but I had to in order to get him to stop talking to me like a child!

When they tell you that Celiac disease is not a spotty disease relative to intestinal biopsies. Every case he had ever seen had a positive biopsy. (Go figure. <_< )

If the biopsy is negative then the highly positive blood tests were wrong--go home and order pizza.

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First of all--Ann, how funny is it that you started this thread :lol:

Mine was when I started requesting tests and asking about too amny things she just didn't know about.

My doctor was a lovely person, but after I figured out that I might have a "problem with wheat" from an alternative practioner, checked it out with a gastroenterologist, and was finally diagnosed--I told her and she kind of raised her eyebrows and said "did it relieve your symptoms?" :unsure:

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Or when the doctor directs you to the internet for information.

That really was good advise, as this is where I met all of you wonderful people.

Cathy

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When you go to the doctor because you are extremely dizzy, nauseated, bad diarrhea, extremely low blood pressure and heart palpitations and she takes your pulse and says it seems fine...take some dramamine for the nausea and don't move suddenly. Huh? :lol:

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Ann, you are bust-a-gut funny! First, the fact that you started this thread -- which proves that you are the type of physician EVERYONE wants. Second, the reasons are great!

I have one: When the neurologist says, "Well, everything I've read indicates that your antigliadin levels will ALWAYS be elevated, and there is no reason to further check them." When everything he's read has come from articles that YOU supplied and they all indicate that the levels should be checked every 6 months!!!

P.S.: I got "fired" from his office because, after an extremely frustrating 5 minutes with him, he asked me what my neurolopsychological profile said. He doesn't even KNOW what it is! It is a functional test that shows which portion(s) of your brain aren't operating properly. I told him that it said that I have Occulomotor Apraxia, and that my "Minnesota Multiphasic Personality Inventory" was well within normal limits, with a mild increased concentration on a chronic medical condition. I also told him since that test was taken two years ago, I no longer have an increased concentration because, quite frankly, I couldn't give a rat's "arse" if I ever saw another doctor again. ;) Two weeks later, I received a notice that I had a registered letter at the post-office --- from him! Typically, that means, in the words of Donald Trump, "You're Fired."!!!!! :lol:

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Having my GI tell me at my first visit with him I wonder why my partners had you come to me I have only diagnosed 70% of the Celiac patients in his office so I guess that makes me the expert of Celiacs in the office. I told him that I didn't know who I wanted I just wanted an appointment. And if you did have anything I would want you to have IBS that can be controlled with meds.

Having my GI also tell me that being gluten-free would not make a differnce in the test

Having my GI not here me when I say 3 months he heres 3 weeks.

Having my Family Doctor not know what Celiac is I don't blame him for that, but he said I don't think that I have heard of that but I will sure look it up, because he would like to know, for future referance. I ought to ask him the next time someone in the family goes.

Donna

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How about the ever famous answer of "It's a female thing". Followed in a close second to "It's all in yuor head. Here's a prescription for Prozac." Yeah I'm sure that Prozac is just gonna make me happy that I have lower right abdominal pain, weight loss, diarrhea, gas, bloating, more weight loss, and chronic anemia.

We should start a list of favorite quotes from relatives and doctors!

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Hey -- my OB/GYN gave me Prozac when I told him that I felt like I was sitting on golf balls!!! Come to find out, I had my bladder and my rectum both distended and pushing into the vaginal walls, and my uterus had dropped to the point that it was coming out (literally). No wonder the Prozac didn't make me feel better!!!!!!! :lol:

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Lynne

ouch!!! thats gotta hurt.

donna

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First of all--Ann, how funny is it that you started this thread :lol:

Mine was when I started requesting tests and asking about too amny things she just didn't know about.

My doctor was a lovely person, but after I figured out that I might have a "problem with wheat" from an alternative practioner, checked it out with a gastroenterologist, and was finally diagnosed--I told her and she kind of raised her eyebrows and said "did it relieve your symptoms?" :unsure:

Glad you liked it,Patti!! I am not always a "patient" patient !! ;)

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haha you all need new doctors lol

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How about when the dermatologist (whom you've begged to do bloodwork) says that your blood work is perfectly normal--and your IgG is 64 (and normal is under 16 at that lab)?

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Ah, wasn't bad, just uncomfortable. Couldn't figure out why I felt so weird. Then to be given Prozac for it???? :rolleyes:

It wasn't until my first Women's Health continuing education course (you'd know that each one is a WEEK long instead of a weekend) that I found out what was wrong with me. I am the type person who had a pap every 18 months, just so I didn't have to go in as often! My boss asked me to be the liaison for this course. I was working for a larger corporation, and to do this would give me more "visibility", according to her. PLUS, I'd get the course and my lodging for free. So, without doing my homework, I said "Sure." Then, the day before I was supposed to leave, my co-worker and friend said "You know, you are the LAST person I thought would take this course." I said, "Why'd you say that?" She said, "Because of the lab." I said, "Lab? What Lab? How can you have a lab when you are learning . . . OH NO." She started howling laughing. She said, "You didn't READ what you were getting yourself into???!!!!! You don't even go to the gynecologist like you should!!! You're going to spend one entire week practicing on each other!!!!!!!" I thought I was going to die.

It only got worse when the instructor started naming symptoms, and asked us to raise our hand if we had any that she would name. Of course, ALL of the girls in there were 20-something, none with kids, so here I am 38 years old, two kids, both difficult births, and answering in my head "yes" to all these questions!! When we get to the lab portion, the two young girls I was working with said, "OH MY GOSH. Should we get the instructor?" I knew then I was in trouble. They asked if I wanted a mirror, and I said, "Why not." The instructor came over and asked me if I had answered yes to any of the questions. I told her all of them. THAT was how I found out all those things were wrong.

What I found after that? The way that a LOT of women find out about things like that are in the Physical Therapist's office -- one that specializes in Women's Health. There are a lot of women in Louisville who are on Prozac, etc., for a problem that is NOT in their head.

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Your doctor tells you that you're perfectly healthy according to your physical exam and test results. This may be the most aggravating answer I have gotten too. If I am so normal and in the normal range, then why was I so sick and why do I feel so bad now. I just had an endo tell me that my numbers all fall into the normal range and, "You are extremely high risk for thyroid disease, come back in one yr for another checkup." Some of them have no clue.

Then there is the doctor I went to last year, named Kevin. When I told him I have celiac disease, he says, "I know all about celiac disease, my son has it, he can't have barley." At that point, I felt bad for his son. Dr. Kevin had no clue about celiac, not really, which is very sad--his own son was diagnosed with it and he didn't read up on it. How sad is that?

Or when I heard a very well known celiac nutritionist tell a celiac, "You can wear any make-up, it doesn't matter, you are not eating it!" Yes, when the same person asked me something, I also explained to her about being very careful with make-up.

There is so much ignorance out there and yes, I do expect it from people, but not from doctors, especially when celiac disease/gluten intolerance is so much in the news now.

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Upon your first visit to this doctor; never having had a prescription for anything from this doctor (prior prescription from this facility was that they gave "Colace" to someone with non-stop diarrhea!). You're sick, scared, exhausted, weak and desperately wanting to feel better; you ask for what is state of the art in those days (lower barium GI series - meaning thru rectum test) and the GI accuses you of only being there to get drugs "You junkies are all alike. You only come here for drugs!" You respond to Dr. Jerk, "I don't want any prescription drugs! What kind of a nut do you think I am asking fo a barium enema?" You leave the facility without test or prescriptions and realize you need a new non-Govt Issued doctor.

1977 East Orange Veteran's Hospital (no wonder Walter Reade Hospital has been found to be unfit)

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When your GI DR. says he(my son) can't have celiac as he doesn't look malnutritioned even after reports of a high blood test(154) 4 years previous(and a neg biopsy) and being high risk w/ having down syndrome and yes he did have a distended stomach.

Good thing he accidently found it w/ a scope alongwith gastritis and a hiatal hernia.

At least I had a son and not a daughter so they could not sayit was allin his head because of hormonal issues.

Karol

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Hi my favoritte one is when the doctor looks at you and tells you: Is all in your head.

Thanks for starting the thread.

Best regards everyone.

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This is funny!

How about when a hemotologist tells you 'you're a woman, women get anemia. As soon are you get through menopause your anemia will go away' and you're only 43 at the time.....and have not started menopause yet?!!!

Also, my dx'ing GI told me 'you can still eat rice, corn and potatoes and hung up' - literally. I fired him that minute though he didn't know it until he got my letter explaining a few things to him about the gluten free diet and how NOT to treat future patients who had it.

On the flip side my pcp was honest to say she was told she'd never see a patient with Celiac but now she has serveral with it. Her assistant called the other day and asked if I'd ever heard of someone being misdx'd with MS when they actually had Celiac (she pronounced it selliac) and I said YES!!!!!!!!!!!!

She also asked why so many people were being dx'd with Celiac (again pronouncing is incorrectly though I corrected her the first time). I reminded her that I'd told my doctor this was coming over a year ago. Sometimes people just don't listen unless they are hit over the head.

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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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