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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.

Severe Itching And No Rash
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25 posts in this topic

Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! :lol:

Meghan Reilly

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Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! :lol:

Meghan Reilly

Hi, Meghan, and welcome.

Don't be discouraged quite yet, five days is a very short time. Give it another week or two and if it still persists I would start suspecting another food culprit. For me, it was potatoes. Soy also gave me the itchies, but I had a rash with that. But no rash with potatoes. Everyone reacts differently to different things, though, so for you it could be something else, although most likely one of the major allergens.

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I used to scratch until I bled- seriously, I had bruises shaped like scratches. It was so bad, especially on my thighs and torso. It's mostly gone away since going gluten free, but it took a couple of months. My doc says its normal with Celiac. He suggested coating myself with Eucerin Calming Cream while still wet after showering, then drying off. It really has helped.

Before going gluten free I had every allergy test known to man, and I was not allergic to anything <_<

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I know what you mean. I have dry skin but this is a different, almost burning or stinging kind of itch. I saw something that said that some women in menopause get this. I know you are too young but your hormones could be out of whack. I thought that might be why I was having them. I was found to be extremely anemic. After I had been taking massive doses of iron for 4-5 weeks, the itching has gone away. Something to get checked if you haven't.

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I know what you mean. I have dry skin but this is a different, almost burning or stinging kind of itch. I saw something that said that some women in menopause get this. I know you are too young but your hormones could be out of whack. I thought that might be why I was having them. I was found to be extremely anemic. After I had been taking massive doses of iron for 4-5 weeks, the itching has gone away. Something to get checked if you haven't.

Hi Kareng,

I had my hormones checked because after a lot of research, I found that hormonal imbalances can cause itching - my cortisol was low so I am going on cortisol in the next few days when it arrives from the doctor.

Also, I think I was anemic as a child and wondering what kind of iron you are taking and what dosage & where to get it?? Please let me know, I'd like to try everything!

Hope you have a nice day :P

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Soy in all it's forms is in almost all processed foods........And if you are consuming soy lecithin, or msg, soybean oil, etc.... THAT can Definately cause severe ITCHING! It always did for me........every time........to where now, I cannot consume any form of soy or any legume without having the severe itch with no rash! No Doctor every found it either....I discovered it myself after keeping a food journal and finding the common denominator; culprit! Good luck. I wish there were more foods that kept the soy out! Gluten free is easy compared to finding foods 'sans' the soy! Soy is dangerous anyway...it was way over touted and people are just now realizing this. Some celiacs can tolerate soy....but I am severely allergic to any and all forms of it. Hope this helps.

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Like someone suggested, I would say give it more time gluten free to see if it gets better. I know that's a hard thing to hear. I know how frustrating non-stop itching can be, I went through that for quite some time. I tend to react to things I'm allergic to by itching. It took a while to weed out all the things that were causing it as there were multiple allergies in my case.

I'm not a big fan of allergy testing, but have you tried that? Allergy testing can be hit and miss with many people, providing both false positives and false negatives. Much as some doctors would like you to believe, allergy testing doesn't always work.

Also consider that if you are itching all the time then you could well be allergic to a substance that is either in something you eat everyday, or is an ingredient in many things. I am allergic to anything sunflower, so when I gave up potato and corn chips which all invariably use some amount of sunflower oil a lot of the itching stopped. When I gave up soy which is in a WIDE VARIETY of pre-packaged foods the occasional itching stopped. So it could be one specific food that you love and eat every day. Or it could be an ingredient like soy or corn or safflower or canola or lactose or peanuts that shows up in a lot of pre-packaged foods.

You might consider taking you diet to the basics for a few days and eating nothing but a simple whole food diet; say plain chicken and rice, to see if that helps. If it does you can then start adding things one at a time back to your diet until you add something back that makes you itch. That's basically an elimination diet. But you've got to try something because I know how the itching can make you crazy. If doctors won't or can't help then you've got to help yourself and diet modification is the first logical step.

Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! :lol:

Meghan Reilly

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It took me 5 months on gluten free diet before the itching got any better, so don't give up. I used to scratch my legs and scalp until there was literally no skin left. But at least I could scratch it. The itching in my feet, palms and worst of all inside my nose/ears/mouth, where no scratching was possible/effective was driving me nuts.

As someone else suggested, you might also try the elimination diet. I'm now getting the terrible itchy feet again, and suspecting soy oil as the culprit.

And maybe look for other possible causes beside your pantry. I wasn't able to use any laundry soap except the real 'no-residue' ones you can buy in sport/outdoors stores (Nikwax or what's the name). Now it seems a bit better, but still have to be very cautious with all these household chemicals, including things like scented toilet paper.

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I know this one condition, I believed this is caused by formication. it is form of paresthesia, you might have gotten it from your previous disease/sickness. I'm pretty sure it's not permanent, i hope.

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Meghan

My horrible itching had no rash or even redness until I started scratching. Then it changed and I started getting tiny blisters in some places, but only as the itch was well under way. And even then only in a few places at first, especially hands. It is Dermatitis Herpetiformis. I noticed improvement after 2 weeks gluten free.

Please try a bit longer. If it's from Celiac you will be so glad you did. Also, as is the case with many DH celiacs, I had much less intestinal trouble tan others did. (I have none now!)

Whatever it is, I wish you recovery. You are not a head case. :-)

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I get itching (no rash) from soy and dairy. If you give gluten free a good try and have no luck, it's definitely worth doing an elimination diet to see if there's something else.

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Meghan,

Word for word, your story and mine are the same. I have called the rash free yet severe , head to toe itching that I've been suffering with "the itchies". They wake me up at night, and keep me up. They are miserable. Ive gone to doctors, and was so mislead up until recently. My sister is also celiac, and she also insisted that Gluten was the cause of my suffering. A few weeks ago, I finally went to her doctor, who advised me to remove all gluten from my diet.

At first, I still would have "the itchies"... But as I learn more and more, I'm discovering that gluten is in WAY more than we realize. Wheat, malt, barley, rye...those are all ingredients used in things that we'd never expect - like the guacamole at Moe's! Salad dressings, tomatoe sauces, corn flake cereal, and the list continues.

So as I eliminated All of those ingredients and became the crazy girl who interviews the chef at every restaurant and now researches EVERY ingredient that I eat/cook with, the itchies have gone away... I'm left rejoicing and so much nicer now that I'm not so sleep deprived.

But then, much to my dismay, I had a few nights of the itchies, despite the fact that id been crazily gluten free, to a T, ....so I believed.

After researching and breaking down everything I'd eaten the previous day, the only thing that I'd consumed that I hadn't confirmed was gluten-free were my vodka drinks.

Being a girl who likes her occasional (or sometimes frequent :-) vodka drink(s), I was also shocked to discover that There are many liquors that are fermented with celiac-UNfriendly grains, such as our arch enemy, wheat.

Now there are two very contrasting schools of thought regarding alcohol and whether or not they are ok for us Celiac-freaks.

celiac groups and doctors alike insist that the distillation process COMPLETELY removes the glutinous protein from liquor, thus being a-okay for us celiacs. The other half of the celiac groups and doctors have the complete polar opposite perspective, declaring that these alcohols fermented with glutinous grains are NOT ok.

My heart sank when I heard that I potentially may have to say good bye to not only my beloved pizzas, croissants , and cakes, but ALSO most liquors and alcohols. But if that was the way to stop my itchies, then by golly I'll do it...

And guess what?

They stopped. Totally.

That is, until I decided that ONE vodka drink would be just fine....(up until recently, I didn't know that vodka didn't only and always use potatoes to ferment...in fact, usually it uses grains). But knowing that the drink I was consuming MAY or may not have at one time been exposed to grains, I thought I'd take the risk and just have the drink.. I go to bed, and 3am hit and then bam, I was jolted awake by the miserable itchies.

the next day I do the research, which confirmed that the type of vodka I drank Was in fact fermented with/in grain.

Over the past week and a half, i have unfortunately subjected myself to my personal study of whether or not g

Alchohols that were fermented in glutinous grains caused my gluten symptoms... And the results have been quite telling.

I am 100% positive that such alcohols should be eliminated from a celiac patient's diet. I'll have a tiny bit of vodka (TINY), and I'll make sure that I do not know if it was distiller with grain or potatoes. Every time I get the itchies, I find out that the vodka I drank was fermented with grains. Every time.

Now I beg of you not to subject yourself to the misery that I hahavoc using yourself as a guinea pig in your own personal gluten study. But I do hope that you maybe take something from my story.

So my point is this: You're probably celiac. I bet if you eliminated absolutely EVERYTHING glutinous, then your itchies will go away. You just need to be psychotically careful and aware. Do your research. Make sure that you're not unintentionally and unknowingly eating gluten. I really wish you so much luck. Best

Brook

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The reason that the experts are fifty/fifty on the grain alcohols is that probably fifty/fifty of celiacs do or do not react to them. You cannot generalize from yourself as to the way others will react. I have just finished a vodka martini to which I have absolutely no reaction, and I do not tolerate potato or wheat, so for me, enough of whatever has been distilled out to suit my body. I am sorry to hear that your body does not react the same as mine. But you really cannot tell other people how they will react - everyone is different and tolerates different levels.

My itchies were soy and potatoes. :)

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I know this is an old post but I too get this sometimes. At one point I thought it was a new shower wash that I had tried. Twice I itched all over from using it. But I had used it one time prior and it was fine. I have since used it and had no problems. So... Maybe it was something my daughter used in the shower prior? I did this to her once. Used oats in the bath. Thought I cleaned the tub out well but, no. In her case there was not only itching but a rash. Sometimes I also think there could be something in the air. Maybe pollen or something.

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Hi there,

I will add another layer: lectins. We have a wonderful little girl who is about to turn 6 who had itching (no rashes) and joint/muscle pain 2-3 times a week. Eventually she was diagnosed Celiac. We took her off gluten and her itching/joint/muscle pain went from 8-12 times a month to about once a month. I mentioned this to my cardiologist this week and he advised us to remove lectins from her diet as well. I have no data yet to report, but thought that might provide another avenue to consider.

Hang in there!!!

Thinking of you!

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I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering.

I, too, suffered steadily-worsening itching without rash for years. I just wrote it off to generic eczema until I finally stumbled across celiac/gluten intolerance as a possible culprit for many of the symptoms I had been suffering. Since going gluten-free earlier this year, the uncontrollable itching has mostly resolved itself - but it took awhile. I didn't really suffer any visible signs of rash other than when I scratched so much that I irritated my skin, although the last few months before I went gluten-free I did develop dermagraphia where I could basically write on my own skin by lightly pressing on it. You can imagine how red and bumpy my skin looked whenever I had an itching fit!

At any rate, just offering my own experience to encourage you to stick with it for now. You can't really judge if it's truly helping you for a couple of weeks at least, from everything I've read. For some people it takes even longer.

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I ended up giving up ALL alcohol in the end, but vodka was the worst for me. I once came out in hives head to toe within 3 minutes of drinking melon vodka.

Wish I had worked it out then instead of 15 years later.

I am now looking forward to being psychotically vigilent.

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\I mentioned this to my cardiologist this week and he advised us to remove lectins from her diet as well. I have no data yet to report, but thought that might provide another avenue to consider.

Put me firmly in the lectin problem camp. They are a bigger problem for me than gluten. And responsible for itches which gluten wasn't.

ETA: You can learn more about lectins here:

http://www.marksdailyapple.com/lectins/#axzz27V82GF5M

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I would wonder if this itching is neurologic? and we know that the neuro issues tend to be the last to clear.

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I have diagnosed DH, the skin's form of celiac. I get the bug under my skin itching sometimes with no rash. There was a while that I got it all the time. I too have hormone imbalance and am being treated for it now. Did you have all of your hormones checked, or just your cortisol? Was it saliva testing, as that is the gold standard? If not I recomend it!

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I have diagnosed DH, the skin's form of celiac. I get the bug under my skin itching sometimes with no rash. There was a while that I got it all the time. I too have hormone imbalance and am being treated for it now. Did you have all of your hormones checked, or just your cortisol? Was it saliva testing, as that is the gold standard? If not I recomend it!

The itching has been so bad for me between the itching with no rash and the DH, that at times I have scratched with a sarrated steak knife, ahhhhhhhhhhhhhhh! :(

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Hey guys,

It has been a while since the last post, but seeing that nobody has come to any conclusion I figured I'd breathe new life into this thread. 

I'm also suffering from this horrible itchiness, and I am on a strict elimination diet (fodmap) because I don't seem to get all the way well after years of poor dietary decisions. 
As some of you mentioned soy can be the culprit for many, and I'm currently using creamed soy as a fat source... I'm guessing that is the case for me. 

I'm still interested in hearing how you guys are. If you have found any solution to this, or if you are still plagued with it. I wake up many times every night and some night I just can't sleep for hours. Feels like there is an anthill in my bed.

 

Hope to hear from you guys!

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Hi everyone,

I am 24 and 3 years ago, my body started itching all over and I had a prickling sensation all over my body like bugs were crawling on me, but no rash whatsoever. For the past three years, I have been on an endless search from doctor to doctor, blood tests, skin biopsies to no avail. Everything comes up negative and doctors look at me like I am crazy, because I look completely normal. There is no rash, bumps, hives, to see how bad I am suffering. Doctors are absolutely puzzled and don't have any answers. I've been on every anti-histamine, nerve drugs, psychotropic medications, etc and I am still suffering. I feel like my situation is only getting worse. I used to be able to function and carry out my day but it has become so bad, I am unable to work or do anything.

My sister is a celiac and I have recently cut out all gluten/dairy from my diet, even though the doctors said it wouldn't make a difference. I have not noticed any difference yet, so I am discouraged - but it has only been 5 days.

Has anyone else been suffering with this horrible itching all over and NO RASH?? I am going out of my mind and don't know what to do, where to go to get any relief!

ANY HELP IS APPRECIATED!!!! I need to get better and will do anything! laugh.gif

Meghan Reilly

I wouldn't get discouraged yet.  Five days--thats early.  I would give yourself a month or so to see if you have improvement.  Try lotioning BEFORE you get in the shower--your entire body.  Instead of a hot shower, take a warm one and keep it short.  Pat your skin dry instead of rubbing it.  Use shaving oil before applying your foam.  Use foam instead of gel.  Shave a little less often (if possible) Eat frozen blueberries and raspberries in place of your evening dessert/ice cream.  Stick with softer textures for your tops and pants when possible.  You could also have other food intolerances beside gluten.  You could have them in addition to gluten.  

 

Are any of your medications actually causing the itchiness???  We are in your corner.  Keep us posted.

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Just noticed this is an old thread.  Never hurts to re-visit a topic when necessary!

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For me, I had the lucky timing of getting what I believe is formication related to perimenopause (yes, look it up :-) it's like bugs crawling on your skin) at the same time I had intense all-over itchiness from undiagnosed Celiac (with no rash and only intermittent hives).  

 

Once the other perimenopause symptoms went away and I'd been gluten free for a few months, the itching subsided greatly.  Still happens once in a while, but I thought I was going crazy!!!

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Here is why it is good to take a b-complex with Niacin/niacinamide because it interacts with other nutrients. https://www.ncbi.nlm.nih.gov/pubmed/3804611/ including b-6 which is one of the metabolites measured to determine a pellagra diagnosis. see this mdguidelines link that summarizes this well. http://www.mdguidelines.com/pellagra where they say  quoting there treatment section "Treatment consists of high oral doses of niacinamide, a form of niacin. Usually, supplements of other B-vitamins are also given because many individuals with pellagra also have low levels of B1, B2, B6, and pantothenic acid." and possibly Zinc if the other research is correct. ***** this is not medical advice just my research on the topic and experience with taking Niacinamide to treat many of my GI problems. Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems. the gluten free works site also has a great article on this topic. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old .  . . still people suffer. I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient. because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more. ***again this not medical advice.  Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease. Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ good luck on your continued journey. 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,
    • You should probably have your doctor run a full blood panel for celiac if you want to be tested right, followed by a endoscope and biopsy. The blood test can give false negatives, and you have to be eating gluten for at least 12 weeks daily for the test. On the ferritin levels, mine was consistently 1-3 on every test even with 2x the normal dose of iron. I found I had to take it with vitamins C supplements to boost it a bit along with managing a few other nutrients that work in combination with it. Seems mine is in part due to constant intestinal inflammation caused by my UC and bleeding ulcers.
    • Hi, I am looking for a functional medicine doctor in the Chicago area?  Any recommendations?  I have never been to one.  I have celiac disease and ulcerative colitis.  What should I expect from a functional medicine doctor?
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