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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Chronic Urticaria (Hives) Common For celiac disease?
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I am 30 years old and have had issues with chronic constipation for 6+ years.  Doctors diagnosed with IBS and treated with Amitiza.  A new doctor suggested I be tested for Celiac with a family history of Lupus, RA, and Celiac Disease.  Bloodwork came back borderline and endoscopy confirmed diagnosis.  I was diagnosed just before Christmas and have been gluten free (to the best of my knowledge) since Jan 1, so I'm really only about 2 months in.

 

Anyway, starting in November/December, I began getting red, itchy patches on my hands and wrists.  I blew it off to being winter and dry so bought some soothing lotion and all was well.  Went to my parents for a week at Christmas and the rash that resembles hives grew - I had it on my arms, feet, and ankles.  Returning home in January, I went completely gluten-free and the hives took over -- hands, arms, neck, feet, legs, some on my abdomen, but not so much.  I always have some, but the spots I have today will be gone tomorrow and new ones will pop up in new places.  I have been to the regular doc twice and dermatologist three times and all they can tell me is it's chronic urticaria (hives) and they've jacked up my antihistamines to the point of being in a cloud all day.  They obviously aren't working, I still look like a leopard and itch terribly.  At one point, I was prescribed a 20-day course of steroids that did the trick for about 10 days and I felt like a new woman, but it's been a few weeks now and the hives are back full-force.

 

I don't think the hives resemble DH and the doctors don't seem too concerned about it, though they have mentioned it.  They also are not concerned about Lupus or other chronic diseases at this time.  I've had some bloodwork and my sed rate was slightly elevated but everything with my CBC with differential was completely normal.  What are we missing?  Where should I turn next?  What should I suggest to the doctor?  I really have no idea what's going on and as a full time PhD student, I just don't have time for this :-)  

 

Is this common for celiac disease?  If it is DH and I've been gluten free, shouldn't it be getting better rather than worse?  

 

Any help is greatly appreciated!  The sooner I can stop the overload of antihistamines (that aren't working), the better!

 

Thank you.

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Have you considered (I know, horrible possibility) that you might be reacting to some other food(s) as well???  Stranger things have happened.  Actually, it happened to me.  I had three things develop in my first months gluten free -- a non-itchy red rash (really just a sheet of color, just red skin); a somewhat itchy slightly raised rash, and actual hives.  The red rash was soy, the raised rash was unexplained but eventually went away when I got things balanced out, and the hives came from nightshades.  What a revolting development that was! :ph34r:   I do not wish that on you.  But it might be worthwhile figuring out if something else is getting to you.

 

To do that you would probably have to keep a food and symptom diary, and eat different things on different days, cut out some foods now and add them back in later, do a bit of sleuthing in other words.

 

I had done what I now advise nobody to do, and that is to rush out and buy gluten free replacements for my favorite foods.  And most of those foods had goodly quantities of soy in them, something that I had gone easy on previously because we did not have a very satisfactory relationship, soy and I, but which I overlooked in my zeal to make sure things were GLUTEN free. :rolleyes:   And I had always been a heavy nightshade consumer - ratatouille was my signature dish.  So it was a heavy blow to give up nightshades.  But two nlights in a row, jacket potatoes, two nights in a row waking up with drive-you-crazy hives at 2:00 a.m.  No jacket potatoes, no hives.  (Yaah, the tomatoes came next :P )   Anyway, just a suggestion of another angle to look at.  Certainly hope that that's not it.

 

Welcome to the board and let us know how else we can help. :)

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http://allergynotes.blogspot.com.au/2010/08/can-helicobacter-pylori-infection-cause.html

We discovered an h. Pylori infection in one of our children with idiopathic, chronic, head to toe and roving hives with angioedema. Cold, wet cloths were probably the most soothing treatment that helped. We were running dual antihistamine dosing and still getting major flares with incidental exposures. We also discovered b12 issues with h. Pylori the suspect in preventing absorption.

We have uncommon reactions to incidental gluten, but we have four varieties of gluten hypersensitivity to research in our family. We got to the point we were testing for heaps of things. It can certainly be exhausting and draining. I wish you the best of luck in identifying your contributing factors.

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Have you considered (I know, horrible possibility) that you might be reacting to some other food(s) as well???  Stranger things have happened.  Actually, it happened to me.  I had three things develop in my first months gluten free -- a non-itchy red rash (really just a sheet of color, just red skin); a somewhat itchy slightly raised rash, and actual hives.  The red rash was soy, the raised rash was unexplained but eventually went away when I got things balanced out, and the hives came from nightshades.  What a revolting development that was! :ph34r:   I do not wish that on you.  But it might be worthwhile figuring out if something else is getting to you.

 

To do that you would probably have to keep a food and symptom diary, and eat different things on different days, cut out some foods now and add them back in later, do a bit of sleuthing in other words.

 

I had done what I now advise nobody to do, and that is to rush out and buy gluten free replacements for my favorite foods.  And most of those foods had goodly quantities of soy in them, something that I had gone easy on previously because we did not have a very satisfactory relationship, soy and I, but which I overlooked in my zeal to make sure things were GLUTEN free. :rolleyes:   And I had always been a heavy nightshade consumer - ratatouille was my signature dish.  So it was a heavy blow to give up nightshades.  But two nlights in a row, jacket potatoes, two nights in a row waking up with drive-you-crazy hives at 2:00 a.m.  No jacket potatoes, no hives.  (Yaah, the tomatoes came next :P )   Anyway, just a suggestion of another angle to look at.  Certainly hope that that's not it.

 

Welcome to the board and let us know how else we can help. :)

 

Thanks for sharing, mushroom. I recently went gluten-free having had symptoms for about 2 years that culminated in chronic urticaria/hives. I was doing great for about a month! No hives, came down off of the medications I'd been on, started adding foods back into my diet, etc. About 4 weeks in I started eating Udi's products, and the hives returned. I cut them out, they got better that next day, but the resurged a few days later. I suspect I also have other food allergies, with corn being the likely suspect. On Friday I had cornmeal for breakfast, corn chips + hummus for lunch, and sourdough bread made with cornstarch that night. The next day the hives returned, and on Sunday and Monday I had hives everywhere in large wheals. Yesterday (Monday) I cut out everything and started a oligoantigenic diet (you can eat only Apples/Bananas/Pears, Chicken/Lamb, Rice/Potatoes, and Broccoli and other similar veggies). I'm nervous about the Rice/Potatoes, so I think I'll cut that out as well (at least for just the first couple days). 

Hopefully, with the change to my diet the hives subside soon enough and I can start working those other foods back in. Do you have any tips on how to identify other food allergens? Any habits that you'd like to recommend? 

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when i am trying to figure out what i am eating that is causing __________, i keep a food journal.  that's how i figured out that soy an i are Not Friends.  soy is in my favorite chocolate candy  :(  so, by experimenting, i learned that i can eat a little of it without getting much of a reaction.  if i have none at all all day long, i can have 1 or 2 squares of my chocolate.  any more than that, here comes a headache, etc.  (if i really need to eat a ton of chocolate, i get a soy-free candy bar and woof the whole thing down lolz)

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I am 30 years old and have had issues with chronic constipation for 6+ years. Doctors diagnosed with IBS and treated with Amitiza. A new doctor suggested I be tested for Celiac with a family history of Lupus, RA, and Celiac Disease. Bloodwork came back borderline and endoscopy confirmed diagnosis. I was diagnosed just before Christmas and have been gluten free (to the best of my knowledge) since Jan 1, so I'm really only about 2 months in.

Anyway, starting in November/December, I began getting red, itchy patches on my hands and wrists. I blew it off to being winter and dry so bought some soothing lotion and all was well. Went to my parents for a week at Christmas and the rash that resembles hives grew - I had it on my arms, feet, and ankles. Returning home in January, I went completely gluten-free and the hives took over -- hands, arms, neck, feet, legs, some on my abdomen, but not so much. I always have some, but the spots I have today will be gone tomorrow and new ones will pop up in new places. I have been to the regular doc twice and dermatologist three times and all they can tell me is it's chronic urticaria (hives) and they've jacked up my antihistamines to the point of being in a cloud all day. They obviously aren't working, I still look like a leopard and itch terribly. At one point, I was prescribed a 20-day course of steroids that did the trick for about 10 days and I felt like a new woman, but it's been a few weeks now and the hives are back full-force.

I don't think the hives resemble DH and the doctors don't seem too concerned about it, though they have mentioned it. They also are not concerned about Lupus or other chronic diseases at this time. I've had some bloodwork and my sed rate was slightly elevated but everything with my CBC with differential was completely normal. What are we missing? Where should I turn next? What should I suggest to the doctor? I really have no idea what's going on and as a full time PhD student, I just don't have time for this :-)

Is this common for celiac disease? If it is DH and I've been gluten free, shouldn't it be getting better rather than worse?

Any help is greatly appreciated! The sooner I can stop the overload of antihistamines (that aren't working), the better!

Thank you.

If you are still looking at this, first, I hope things have improved.

Second, you can't dx DH, IMO, by "how it looks. It can look very different person to person. If your rash is triggered by gluten (in the beginning of gluten-free this is difficult to determine) or foods that are medium-high in iodine then I'd strongly suspect DH - especially in a person with Celiac.

I was gluten-free 2 months with the rash coming/going. When I took iodine supplaments and high iodine foods out if my diet (along with g) the rash abated.

I found any medications - strong antihistimines and steroids in my case not only changed how it behaved but changed how it looked.

So, if you're still suffering and have been off steroids more 3m+ - try a biopsy for DH. I'd try a low iodine diet, too (google thyca.org).

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Yep hives after diagnosis... Started 2 months in. Kept food journal, identified lots of 'allergies' and intolerances such as citrus, paprika, celery, sunflower seeds... On and on and on. I won't bore you. They went away when I cut foods out. I'm now 7 months in, no reactions for 3 months ish. Except for pressure hives (slightly different)... Have also figured that one out and yes, reaction to food!! Leaky gut I reckon, has a lot to answer for.

You're not alone, let us know how you get on.

All the best

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Weirdly enough, I have almost no memory of posting on this forum lol. I must have been glutenated.

I did keep a food journal, which helped me pinpoint 15+ problem foods. I'm glad you guys are on here to help :) Thanks! 

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Dh can take quite some time to clear up from what i've heard. So it is very possible that it is that.

It really does take time to clear up. I'm still waiting and it showed up about a year ago. I was diagnosed celiac many years ago, the DH was new and took a while to diagnose. I can't take dapsone (it's a sulfa drug) so I'm kind of on my own trying to deal with it and the itching drives me INSANE. I've had some success using clobetesol (which I use for lichen sclerosus...lets not even go there) which will sometimes help clear an outbreak up faster but doesn't help with itching. I would not assume that you don't have DH. If you do, dapsone may work for you and provides very quick relief.

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