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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.

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As a relatively new celiac sufferer (one year), I'm adjusting to have to explain my new set of dietary regulations over and over. This is a light-hearted review of some of my favorite commentary from others. List some of the funny ones you have heard!

Upon turning down a food item with a brief explanation of my condition, I hear

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Waiter: You can have the white bread, but not the whole wheat.

Me: Oh, really? What is the white bread made from?

Waiter: Flour.

Me: And what is the flour made from?

Waiter: Well you know it's just flour, like you get at the store. :lol:

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My neighbor A NURSE said...Oh, I could never do that, I love bread too much. :rolleyes: :rolleyes: :rolleyes:

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One of these days I'm going to find one of those flour trees that people seem to think grow somewhere. I'm curious whether the brand name is already printed on the bags that hang from the branches.

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My favorites:

Me: No muffin for me--I can't have wheat.

Server: Oh, then you can have the blueberry muffins--they're only made of blueberries!

Me to yet another server: Do you know what kind of flour is used in your ______?

Server: It's white flour.

Yes, apparently, flour is made of only one thing: flour.

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I have rolled my eyes and put my face in my hand at people who are like "there's wheat in flour?" as if they didn't know. HOW DO YOU NOT KNOW THAT?!?! Where do people think flour comes from? Bashing my head against my desk until I bleed would be less painful than some of the conversations I've had with some people.

My favorite will still always be "well isn't there a way you can knead the bread to like... beat the gluten out of it?"

I'm surprised I didn't bleed out of my ears trying not to laugh right in her face and tell her that was by far the most stupid thing I've ever heard in my life. (And I spend a LOT of time on the internet.)

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WEll, I'm 2 plus years in and have heard all of those over and over.

We were traveling this past week (in New Orleans, 9 year old and me gluten free) and in one restaurant I asked for the gluten free menu. I knew they had one because we had eaten there the day before (server was AWESOME that day). This girl, however, was so confused. She brought the vegan menu. I said, "Well, we're sort of the opposite of vegan." It was very hard to explain to her what gluten free was. In her defense she was very young and heck...I would not have known at her age. But I seriously considered leaving.

Good news: First trip ever without getting one bit sick. New Orleans did right by us.

I also love the one when you tell people you're gluten free and they will say, "Hey, did you know Cub has a gluten free section?"

Pretty much. People want to help. Gotta' love 'em.

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The ones that get to me are things like, "Oh yes, I've gone gluten-free too!", as they stuff a breaded and deep fried mushroom or something similar in their mouths.

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I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

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I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

I have just the opposite, they all are very concerned, especially when we eat out. To the point where they will badger the waiter, leaving me saying" wait! That's my job!" Lol gotta love their enthusiasm. My best friend in particular did that exact scenario one day, to the point that I didn't even need to explain how to keep my meal seperate cooking wise. She then, mid conversation, offers me a roll heehee...really? Gotta love her! She's got my best interest at heart, but still talks to me like nothing ever changed haha 😜

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I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

Lots you can still eat? A week in I thought I was going to starve to death. It isn't like you can go eat organic wheat bread, how insensitive of them. It's one thing to make a choice to eat a certain way, it is entirely another to have dietary needs thrust upon you. Some people just... grrrrrr, at least we understand it's tough.

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I got comments from people about how they could never stick to that diet or how they would kill themselves if they couldn't eat _____. Now I am not a celiac but I do have food intolerances. And for me all it takes is the pain and/or stomach or other symptoms those foods give me to know that I will never willingly or knowningly eat them again. I am even so cautious that if I don't know what is in something, I won't eat it.

The thing that still gets me is to go to a place with a gluten-free menu, order off of it and then still get croutons on your salad.

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I did laugh at the woman who exclaimed that she had gone "gluten free" because it was a very healthy diet. So much so that she was trying to put her 13-year old son on it also. He was resisting ..

Was she coeliac/intoleran/allergic or even sensitive ? No, but she knew all about it due to her line-of-work .. which was ? she worked in a Health Food Store for one-day each week ..

Again, I laughed .. My boss was not happy with me laughing at her, but I was amused ..

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There's a lady like that where I work as well, lol. We have talked many times about how it's not to be a diet fad, that just because it's gluten free doesnt mean it's healthy, theres junk food gluten free too! Haha she didn't listen to me, I tried to explain that even though I'm celiac I don't even eat a lot of the processed things, I eat rather cleanly. She recently said to me, that gluten frees stuff can be just as unhealthy as the regular version...HELLOOO!?!? Haha I refrained from pointing out the obvious, but come on!! Oh common sense, where have you gone....I still chuckle about that when I see her.....

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I volunteer at a place where we have a table full of different baked goods that people can have. Every once in a while we get potato bread or rolls in. Can't count the number of times someone has plopped down a package and said 'Look we have some bread you can eat today'. Yea right cause that potato bread is made with just mashed taters.

Also frequently hear people say they wish they had celiac so they could be as thin as I am. Oh really you want bone pain, brain fog and constant D so you can get diagnosed and have to change your whole life around, yea right.

My boss gets it though and is always finding or bringing in stuff that is actually safe for me. She keeps me well supplied in chocolate. :)

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So a very dear friend of mine from boarding school (who happens to have a peanut allergy) and I were joking around one day at dinner. I had my special food and I was telling the others at my table that you can actually buy powdered gluten in the store. The kid goes, "I'm gonna buy that and put it in your food." I looked right at him and said, "The peanut butter is right over there."

Of course, we were joking, so I wasn't offended at all, and neither was he, but still.

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Oh, I forgot one! How about:

"So, have you lost weight? Since you started 'doing that'?"

Like it's an arbitrary lifestyle or fitness choice, like I decided to take up roller-blading or try Atkins! No, I haven't lost weight, or maybe I have. It doesn't matter. This is about a serious health condition, not about being thin!

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I got comments from people about how they could never stick to that diet or how they would kill themselves if they couldn't eat _____. Now I am not a celiac but I do have food intolerances. And for me all it takes is the pain and/or stomach or other symptoms those foods give me to know that I will never willingly or knowningly eat them again. I am even so cautious that if I don't know what is in something, I won't eat it.

The thing that still gets me is to go to a place with a gluten-free menu, order off of it and then still get croutons on your salad.

Now when people say something like "I would die without bread/gluten", I point out that for me I knew I'd die if I KEPT eating it...so really when faced with this dilemma it's not too hard to choose a life without bread.

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I am celiac (gluten-free) AND vegetarian. Imagine all of the fun stuff (not) I get to listen to. Double whammy. :blink:

Laura

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You can have this wheat, it's organic!

And my favorite:

I cooked it...Doesn't the gluten just cook out?

Makes me want to stab myself in my ears... Over and over again.

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Waiter: You can have the white bread, but not the whole wheat.

Me: Oh, really? What is the white bread made from?

Waiter: Flour.

Me: And what is the flour made from?

Waiter: Well you know it's just flour, like you get at the store. :lol:

Hahahaha
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I volunteer at a place where we have a table full of different baked goods that people can have. Every once in a while we get potato bread or rolls in. Can't count the number of times someone has plopped down a package and said 'Look we have some bread you can eat today'. Yea right cause that potato bread is made with just mashed taters.

Also frequently hear people say they wish they had celiac so they could be as thin as I am. Oh really you want bone pain, brain fog and constant D so you can get diagnosed and have to change your whole life around, yea right.

My boss gets it though and is always finding or bringing in stuff that is actually safe for me. She keeps me well supplied in chocolate. :)

Only week one for me....with another month or so of "figuring what's really going on with me".

Have heard the most amazing diagnoses so far:

"It's just your gallbladder you know?"

"It's just your thyroid"

"It's your hormones"

"It's just stress"

"It's fatty liver disease"

"It's just because you stopped taking the pill"

"It's just your ____".

Nope. It is exactly what I have figured it out to be.

You know...because I live inside my body and feel the things I feel and the log the reactions I log. And puke and poop and have gas lots when I eat the things I eat (tis tha wheat).

The GI doctor discredited all my complaints and high levels of everything as:

"it's just IBS. Eat some yogurt. I recommend Activia"....AFTER I told him how much yogurt I eat to try and settle my stomach, along with double strength probiotics.

*forehead smack*

The only person who understands it all is my mom. My husband too.

Mom said it best "You know your body best. If you need to stop eating something. Then stop."

My husband said "Awesome. I can live semi-gluten-free with you. It will be a lot easier than when you were a vegetarian." Bless his heart....he must love me to want to join me. :)

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I did laugh at the woman who exclaimed that she had gone "gluten free" because it was a very healthy diet. So much so that she was trying to put her 13-year old son on it also. He was resisting ..

Was she coeliac/intoleran/allergic or even sensitive ? No, but she knew all about it due to her line-of-work .. which was ? she worked in a Health Food Store for one-day each week ..

This sounds a bit like one of my friends who "welcomed me to thier world". She was telling me how she had eaten something with gluten the other day, and because she has it so infrequently now, how it caused her knuckle on her little finger to get sore and swell for a day... I nodded as politely and sympathetically as I could. LOL She's a bit of a princess. :rolleyes:

I volunteer at a place where we have a table full of different baked goods that people can have.

Oh, that would be hard for me too! I'm still in the habit of grabbing what I want, or starting to nibble of my kids' mostly finished dinners... I do seem to catch myself before it gets to my mouth. LOL

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I often get some form of "Well, that's a healthy diet to follow." and the smarta$$ in me always responds . . . "yep, cheetos and skittles are gluten free."

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I often get some form of "Well, that's a healthy diet to follow." and the smarta$$ in me always responds . . . "yep, cheetos and skittles are gluten free."

My smarta$$ reply to "how do you have anything to eat?" is "Truffles, caviar, and champagne are gluten-free. I do just fine."

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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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