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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.

Itchy Skin
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21 posts in this topic

Last Friday I think I had a bad gluten experience. I went out for lunch with some coworkers, and I thought I ate safely. Within an hour of returning to work I felt dizzy and then I quickly ran to the washroom to vomit. Since them I have had itchy skin on my arms, I even wake up from the itchiness. I would appreciate some feedback.

Thanks!

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I frequently have itchy skin on my arms, mostly, but sometimes on my thighs and back. Mine happens without having been glutened. I think its another symptom of Celiac. I would love to know if anyone with more experience has any thoughts on this. I have no rash--just itch.

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I'm no expert, but I can certainly tell you that my 7 year old with celiac disease CONSTANTLY complains of itching on his back and arms. We work very hard to keep him gluten-free, so I think the itching is probably just part of condition.

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Are you aware of DH? It is the itchy skin rash that frequently accompanies Celiacs. Read more here: http://www.csaceliacs.org/dh_defined.php

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I have been having the same problem. I do not have a rash or anything that looks like DH but i cannot stop itching. It is dry and windy here in So Cal so i thought maybe that was it. I havent changed soap or detergent or anything but i am so itchy. If anyone knows a way to make it stop, please let me know.

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I have been having the same problem. I do not have a rash or anything that looks like DH but i cannot stop itching. It is dry and windy here in So Cal so i thought maybe that was it. I havent changed soap or detergent or anything but i am so itchy. If anyone knows a way to make it stop, please let me know.

<{POST_SNAPBACK}>

Same here, I get itchy mostly on my lower legs and it's been happening on and off for many, many years now. And, it doesn't take much scratching to make huge welts. I've tried almost every lotion available here, and my dermatologist told me to use a couple of creams but they didn't offer much help. There is never any outward indication--no bumps, no rashes, no redness, nothing just itching. I apply lotions and more lotions which don't really help, but at least my skin isn't dry. I also have one spot on my heel that seems to itch from the inside...it has even kept me awake at night--same thing, no outward indication. I've seen two different dermatologists and two allergists for it. <_<

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This whole road of finding I was gluten intolerant started with a severe itch that I had in my legs for about ten days. I went crazy. i knew I couldn't scratch or i would have no skin left. The doctor said that i had dermographism. No one really knows the trigger but it is a general allergic like reaction in the form of itching. if i were to scratch my skin say a line with my fingernail there would become quite a raised pink line that would take 10 minutes or more to go away. that is how he knew i had it. I have found over the years that staying away from any foods that I am sensitive to especially sulphites. nitrates and preservatives helps alot. I can go months and months without an incident. Gluten doesn't seem to be the direct culprit because i have now been gluten free for three years. It is like an autoimmune reaction.

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Thanks everyone for your input. I guess I need to try to determine other things that could be causing the rash in addition to possibly gluten. :)

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This whole road of finding I was gluten intolerant started with a severe itch that I had in my legs for about ten days. I went crazy. i knew I couldn't scratch or i would have no skin left. The doctor said that i had dermographism. No one really knows the trigger but it is a general allergic like reaction in the form of itching. if i were to scratch my skin say a line with my fingernail there would become quite a raised pink line that would take 10 minutes or more to go away. that is how he knew i had it. I have found over the years that staying away from any foods that I am sensitive to especially sulphites. nitrates and preservatives helps alot. I can go months and months without an incident. Gluten doesn't seem to be the direct culprit because i have now been gluten free for three years. It is like an autoimmune reaction.

<{POST_SNAPBACK}>

Debbie, thank you so much for the name!!!! That's it exactly. One day my legs looked like a raised road map! Now at least I know what it's called.

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Last Friday I think I had a bad gluten experience.  I went out for lunch with some coworkers, and I thought I ate safely.  Within an hour of returning to work I felt dizzy and then I quickly ran to the washroom to vomit.  Since them I have had itchy skin on my arms, I even wake up from the itchiness.  I would appreciate some feedback.

Thanks!

<{POST_SNAPBACK}>

Hello there Cindy,

I was diagnosed with Celiac Disease from a (promethius blood test, and a biopsy) 2 years ago. I have had an "itchy skin ever since I was diagnosed". I always thought maybe it was due to the weather, so I used oatmeal soap 'Aveeno' anti itch body wash, thinking it might help with the itchiness. In the beginning it did seem to help for the most part. On many nights though it didn't help at all, the itchiness wouldn't go away no matter what, would keep me up till 3 or 4am in the morning, and start to seriously affect my sleep.

Of course, now I realize using Aveeno soap (because of the oatmeal) was not the smartest or best soap to use, on my skin because of the oats due to my Celiac Disease. So I have stopped using what I call now the "evil" soap, and have thouroughly checked all of my other beauty products for any traces of gluten.

I have always believed as someone who has had Celiac Disease for 2 years that my itching was a symptom of my Celiac Disease. I mean it started around the exact same time, so that made sense to me.

I've always believed in a "connection" between my itching and having celiac disease, and the most frustrating thing for me was one day asking my gastroenterologist if he believed there was a connection, and him replying that, "Oh no, celiac disease having an effect on the skin like that would be so rare". Sometimes they would just look at me like I'm totally insane for asking such a question.

Doctors do not know how much we suffer, sometimes I feel unfortunatley that we are more educated then they are when it comes to our bodies, our symptoms, and how this disease is effecting us.

Anyways, Cindy, the first thing I would do, is look at the body soap your using make sure it is safe and gluten free, use a safe lotion (helps with itching) that is gluten-free!, make sure that the shampoo and conditioner is safe, your dishwashing liquid, your laundry detergent, make up, everything that you can come in contact with, toothpaste, everything! And see if this helps at all.

When it comes to itching I know all!! I have sufferred pretty badly from it. Luckily I don't have DH, Celiac's whom have DH suffer horrendously, and worse than me. But if I accidently eat something tainted that had gluten in it, I immediately break out in Hives, not fun. Itchy, red, inflamed, hard, bumps, tingling, all over; dermatologist grade creams don't work, I'm on a high dose of Prednisone right now to help with the intense itching. If I don't take the Prednisone, I'm not even able to wear clothes, the clothes feel horrible against my skin. It keeps me up till 3 or 4am in the morning, and just makes me absoutely miserable, to say the least. This is from one accidental ingestion of a product I thought was safe, and the allergist and dermatologist don't know how long the hives will last.

I'm not itching now due to 2 antihistamines, and 2 prednisone pills a day. I'm just really DROWSY. I finally have some peace though, and I can finally sleep through the night.

So, Cindy I too know a lot about itching! And I deffinitely believe there is a correlation between the itching and this disease.

I'm learning to cope with my hives, because my doctors can't tell me how long I will have them (they hope 2-4 weeks), I'm trying to pick myself back up and not let this beat me, I've never had hives before so (during what was a very good time for me), it knocked me off my feet, should I say. But they are not going away, I keep waiting, and my life is quickly passing me by.

I realize that waiting isn't the answer, and that I need to start living again despite being very uncomfortable sometimes! And that is what I'm trying to do! I got satin sheets! My husband keeps sliding off in the middle of the night :lol: , I wear 100% cotton clothes, or sometimes nothing but my underwear and a throw if my skin is too sensitive, and I make sure that gluten mistakes don't occur, can't occur! As much as I can darn well help it. Because I never ever want to itch like this again, (so I do my best to avoid it), so I'm so much more careful, than I ever have been before.

Cindy, I guess what I'm trying to say is this, I do think itching is part of Celiac Disease for some people. It doesn't necessarily have to be DH or hives, just plain old annoying itching.

If you ever need to talk to anyone when your frustrated, and can't sleep due to itching, write me! I'll talk to you! I'm used to this symptom, me and this symptom go way back. It's a hard symptom to deal with. But it does not last forever. There is an end to it. So if you need to talk or vent to anyone about it, you can feel safe to do so with me, anytime,-

Bye, Kim.

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I do not have celiac disease. I have not yet tested for non-celiac gluten sensitivity. I am a postive Type II, Delayed Food Reactions - all grains except oats and rice.

I itched steadily for 10 years! Mostly this was in the evening and into the night. I used to have a friend spray me with Solarcane before I went to bed so I could sleep.

I had every allergy patch test known to man. All negative.

I finally found my way to a chiropractor/nutritionist who took the blood samples and sent them to Immuno Labs in FL. - thus the Delayed Food Reaction diagnosis.

No one mentioned gluten. I just stopped eating produdcts that had flour in them. Within a week the itching had virtually stopped. I would have brief 'attacks' - usually much milder than what I had for so long. This almost always happened when I went to a restaurant.

There were other foods on my reactive list. Most trigger GI issues rather than itching but to this day itching is still my first warning that I have gotten something I can't handle.

Initially I itched head to heels. Later it became localized. Sometimes an arm, then after awhile that would change to a leg. It would move around the body - always remaining in one spot for quite awhile and then change location.

It still happens but not often and nothing really serious like it once was. I am Gluten-free Casein-free and watch a whole lot of other reactive foods. Claire

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My sister and I both have suffered through this itching too. We found quite often it is set off by the water. We both had water softeners installed in our homes, which helped tremondously, we live in an area with very hard water. There are times here that I will get to itching after a shower too--it's usually worse after a shower and yes, I do read the ingreds of my soaps, shampoos, etc. Sometimes at work, out of the blue I will start itching. It gets red with streaks like all of you have stated and then goes away after a while. I to believe it to be a celiac thing. I also agree that doctors dont realize how much we go through as celiacs and yes, I also feel we know more about this disease then they do. The doctor I am going to admitted to that fact, but he also said he will be happy to learn all he can from me--that's a start. Deb

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I have to take a pair of scissors or a letter opener to scratch my back all the time. I can't get my 17 ear old son to scratch it for me ("euw mom <_< " ) There is no rash. As far as I know, I have not been glutened, but I'm still learning.

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My son had very itchy skin,he also couldn t have a proper night sleep,after eliminating gluten ,casein ,and soy, he dosen t itch at all,it took about 6 weeks to see the difference,and dot better and better with time,he gets the itchy skin if gets gluten or casein.

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Thanks for that thorough reply Kim. A couple of people have mentioned a relationship between casein and rashes. I have not heard about this before. Does anyone have any information?

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That stinks that you got sick at lunch-definitely sounds like you were glutened.

I itch like crazy, too.

No rash, but once I scratch myself raw I have scabs on my arms and feet. It's awful and it comes and goes. Sometimes I don't have it, then for awhile I will...it's odd.

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Thank you for this thread and I am glad I am not just crazy! I have never had "food allergies" and yet I know I have been affected by them in the past. I just lived with it, thinking it was just "something I ate." Now after being gluten-free for 2 months, with dramatic results (hey, I didn't know it wasn't normal to have these symptoms - they were just like other family member's symptoms! :blink: ) and improved health, I am having a serious reaction to "something." I posted the thread "weird reaction" after waking up with hives at 4 a.m. in the morning. The hives continue to drive me crazy, now a day and a half later. They worsened considerably after running through an airport to catch a flight -- head to toe red itchy splotches that felt like they were burning with itchiness. After cooling down it got better, but I'm still having an itch-o-rama after arriving home. :o

So here's my question (which Claire and others alluded to): after going gluten-free, does it make your symptoms worse when you do get gluten? Everything I have experienced seems to indicate that the answer is YES. I *never* had symptoms like I do now!!

So if you eliminate the gluten and your body's auto-immune reaction to it, does it then "kick up" the reaction to other foods you might be sensitive to? My Enterolab casein sensitivity test was positive (got it just about 3 weeks ago) but have been traveling and so was waiting to go CF until coming home -- now.

Do allergy tests indicate auto-immune responses to food proteins? I am guessing they are not too precise as my son tested negative for ALL foods, yet has celiac disease and also tested positive for casein sensitivity the same time I did. Therefore, how do you go about identifying the cause of things like hives if they are related to food protein response rather than a "traditionally identified" food allergy? Who is the appropriate professional to seek out? I refuse to live with these hives without actively searching for their cause -- but I do not believe that meds are the way to "fix" something that can be cured with finding the right culprit and changing your diet. Anyone have any experience to share with a successful diagnosis of the causes?

I was also reading about hives in general and found several places that suggested that they may be due to yeast or bacterial overgrowth. This was interesting to me in that I have had chronic bacterial issues for years. One of the "dramatic health improvements" I have experienced since going gluten-free is that the "chronic sinus infection" that I have had on and off for 3 years has abated. I need more data to conclude that going gluten-free was the exact reason, but at this point it seems fairly obvious since I had one for 3 months when I started gluten-free and now I don't. I have not changed anything else.

Sorry for the long post -- but please share if you have some advice, suggestions or experiences!

Thank you all for the time you take to share information!!! I have found more information applicable to my health from you guys than I have from any doctor I've ever visited! Thanks!

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Do allergy tests indicate auto-immune responses to food proteins? I am guessing they are not too precise as my son tested negative for ALL foods, yet has celiac disease and also tested positive for casein sensitivity the same time I did. Therefore, how do you go about identifying the cause of things like hives if they are related to food protein response rather than a "traditionally identified" food allergy? Who is the appropriate professional to seek out? I refuse to live with these hives without actively searching for their cause -- but I do not believe that meds are the way to "fix" something that can be cured with finding the right culprit and changing your diet. Anyone have any experience to share with a successful diagnosis of the causes?

I was also reading about hives in general and found several places that suggested that they may be due to yeast or bacterial overgrowth. This was interesting to me in that I have had chronic bacterial issues for years. One of the "dramatic health improvements" I have experienced since going gluten-free is that the "chronic sinus infection" that I have had on and off for 3 years has abated. I need more data to conclude that going gluten-free was the exact reason, but at this point it seems fairly obvious since I had one for 3 months when I started gluten-free and now I don't. I have not changed anything else.

Sorry for the long post -- but please share if you have some advice, suggestions or experiences!

Thank you all for the time you take to share information!!! I have found more information applicable to my health from you guys than I have from any doctor I've ever visited! Thanks!

I am reposting this piece that alerts to this possibility for continued symptoms:

High Prevalence of Small Intestinal Bacterial Overgrowth in Celiac Patients with Persistence of Gastrointestinal Symptoms after Gluten Withdrawal.

OBJECTIVE: Celiac disease is a gluten-sensitive enteropathy with a broad spectrum of clinical manifestation, and most celiac patients respond to a gluten-free diet (GFD). However, in some rare cases celiacs continue to experience GI symptoms after GFD, despite optimal adherence to diet. The aim of our study was to evaluate the causes of persistence of GI symptoms in a series of consecutive celiac patients fully compliant to GFD. METHODS: We studied 15 celiac patients (five men, 10 women, mean age 36.5 yr, range 24-59 yr) who continued to experience GI symptoms after at least 6-8 months of GFD (even if of less severity). Antigliadin antibody (AGA) test, antiendomysial antibody (EMA) test, and sorbitol H2-breath test (H2-BT), as well as esophagogastroduodenoscopy (EGD) with histological evaluation, were performed before starting GFD. Bioptic samples were obtained from the second duodenal portion during EGD, and histopathology was expressed according to the Marsh classification. To investigate the causes of persistence of GI symptoms in these patients, we performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests. RESULTS: Histology improved in all patients after 6-8 months of GFD; therefore, refractory celiac disease could be excluded. One patient with Marsh II lesions was fully compliant to his diet but had mistakenly taken an antibiotic containing gluten. Two patients showed lactose malabsorption, one patient showed Giardia lamblia and one patient Ascaris lumbricoides infestation, and 10 patients showed small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. We prescribed a diet without milk or fresh milk-derived foods to the patient with lactose malabsorption; we treated the patients with parasite infestation with mebendazole 500 mg/day for 3 days for 2 consecutive wk; and we treated the patients with SIBO with rifaximin 800 mg/day for 1 wk. The patients were re-evaluated 1 month after the end of drug treatment (or after starting lactose-free diet); at this visit all patients were symptom-free. CONCLUSIONS: This study showed that SIBO affects most celiacs with persistence of GI symptoms after gluten withdrawal.

Blood testing for reactive foods can be helpful but is far from foolproof. It tends to error on the side of false positives. It does usually identify the real culprits but it is hard to sort them out if it gives you too many that are not valid. In my case there were foods that I already knew were a problem, some that I didn't know about that were genuinely problematic. There were also about 10 that I had doubts about. Those are the ones you subject ot a personal elimination test. Take each one away for a week or two - then reintroduce. If there are no symptoms - keep that food in your diet and go on to test the next 'suspicious' one. Claire

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What do you guys do for itchy relief? It usually takes about an hour for me to feel not compelled to cut off my skin. I scratch so much it turns to welts. I stand in the shower and let cold water run on my legs. I take allergy pills like allertec. I the put DML lotion on and stand in front of the fan. It's unbarable. There is usually no rhyme or reason for the itchiness.

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What do you guys do for itchy relief? It usually takes about an hour for me to feel not compelled to cut off my skin. I scratch so much it turns to welts. I stand in the shower and let cold water run on my legs. I take allergy pills like allertec. I the put DML lotion on and stand in front of the fan. It's unbarable. There is usually no rhyme or reason for the itchiness.

This thread is 7 years old so these posters are not around any more. There are more current threads about this. Look under the DH section.

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I just came across this post on Google actually, so i know it's not exactly one that has been answered anytime recently.

 

I have struggled with this though, and i couldn't seem to figure out why (i was told i was gluten sensitive, but that was with idiotic doctors who both did my blood test while i was on a gluten free diet, so i need to consult with a physician who knows what they're doing to differentiate). Anyways. 

 

At first i was going insane, as the itching would be so bad that it would keep me up at night. Often times i'd wake up with bruises on my legs and skin under my nails. I'd tried every moisturizing cream, every medication, every anti-itch cream and every holistic suggestion. Absolutely NOTHING has worked outside of taking a warm shower, but that only works for about 5/10 minutes (basically it soothes it for a very short period of time). Whenever my skin acts up with any sort of problem, a warm shower always seems to help. Sometimes it'll be so bad i'll take a sleep aid, and when i feel really drowsy hop into the shower so during that ten minute period i can finally fall asleep. it can I digress.

 

It's nice to know that this may be tied to my inability to consume gluten. Being on this board has taught me more and more that my physicians were (sadly) unable to. For anybody who's okay with holistic treatments/oils - i have found that eucalyptus helps a small bit to reduce the itching, but by means does it cure it. I've already looked at every area of my life to make sure i wasn't having a reaction to anything or cross contaminating, and this seems like it may finally be an answer to what doctors told me was me 'whining over dry skin'. 

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
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      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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