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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?  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
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KD_

DH? Long and sad

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Wanted to thank you all here at the forum for your messages, in the course of past two years it has been of much help and encouragement for me to read it and to know that I'm not alone in what I have been going through. I'd like to share my story in case somebody would get any benefit from reading it and in case there is anybody who can suggest something... 

 

I got first problems in 2009 when my fingertips started cracking all the time - deep cracks, bleeding, painful, etc. a continuous vicious circle. I just lived with it, it was manageable. I saw a few doctors, they said it was dishydrosis and that was it. In 2012 or so I got first eczema on my right hand little finger that then went on to grow and spread steadily during the following years and ended up to cover my entire right hand palm and moved on to my left hand little finger.

 

At the end of 2015 I experienced first major problems that forced me to go on a strict diet (I saw an article in the internet that explained such eczemas by candida overgrowth). I stayed on that candida diet for something like two months and got a complete relief from all symptoms. The symptoms were overall fatigue, skin peeling off on my forehead, further growth of eczema on my hand, terrible itch and pain becuse of the eczema (I remember dropping on the floor in tears because of the agonising pain), and the last drop was hair loss...

 

That diet helped and I now knew that my problem could be managed. I started reading stuff online trying to figure the connection and what was actually wrong with me. I did some lab tests, I did not have candida, I actually did not have any problems, all lab tests came back clear. I spent 2016 staying on diet on and off, balancing between flareups. I gradually started getting bloating episodes that lasted up to a week with certain discomfort breathing, walking, etc. Through experiments I figured that certain products made me feel worse and made the eczema worse. First was gluten. Avoiding gluten really helped. I could eat gluten one-two times but after several times I had a full flare up (no noticeable stomach problems though), so I started cutting down on gluten. Then soya joined the blacklisted gluten.

 

And then came the spring of 2017 that I will never forget. I am attaching three photos to show what my hand was like. I could hardly use my hand, it would swell, burn, itch, pain. I started getting spots of eczema all over the my hand, spreading on to my left hand and it got really out of control spreading too fast. I tried going to doctors again, tried taking their medicines, all to no avail. Returning to diet and finally cutting out lactose removed the agony within two weeks.

 

So,  here I am now - intolerant to gluten, soya, nuts, any forms of sugar (including fruits), lactose. On top of that I am vegetarian (well, now a forced vegan).

 

The reason why I am writing here is although I am strict with gluten I still get some (milder) flareups that are caused by even smallest amount of anything that's off the "diet" things. I can get a some flareup by cleaning some dusty drawers, by sleeping on a bed with dusty floor undernearth, by using spice mix that obviously has something wrong mixed in it, well and of course by eating something wrong when I get weak (and stupid).... Just to give you an idea, when I go to a store I cannot buy any snack at all that would be safe for me. All food that I take has to come from my kitchen and my pots... 

 

I have stuck to absolute diet for 3 months but within a week after I started adding some food like fruits or nuts to see if I was still intolerant to it, but I again get back to having problems... I have tried getting tested for allergy (nothing), for stomach problems (nothing), ultrasounds (nothing), blood test for clieac (nothing). Doctors here do not know the cause and do not get concerned also (the doctors just say oh if you feel you cannot take certain foods, then don't take them - duh, but when the list of those tihngs is that long?). Stomach biopsy is not done in my country (unless the patient is dying I guess). The only medicine that I take that helps me is an absorbent that is supposed to take out allergens out of the guts and is taken during poisoning (someting similar to activated charcoal). I took antihistamines almost every day in spring 2017 and I ended up always getting too drowsy for one-two days (even from the non-drowsy ones), so I have stopped taking them. 

 

The reason why I am writing all this and why I'm happy you have read till the end is that I feel disheartened and it is very hard for me to actually come to terms with this kind of diet especially because all lab tests come out clear and objectively there is no proof that I do have any allergies or intolerances or stomach problems. I'd appreciate to hear you take to it and perhaps some advice...

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Hi KD,  I am just recently diagnosed with DH, Celiac Disease... I feel for you and what you are going through. I know all too well the pain & frustration. I also have hundreds of photos I’ve taken of my hands, elbows, knees & buttocks. I am by no means a Dr., but your photos look very much like a good friend of mine who suffers from several types of Psoriasis.  Hers started on her hands with the drying and cracking, big deep painful crevices, leading to bleeding and constant pain. Just thought I’d mention this to you and see if you have researched any of the different types of psoriasis and the biologics used to treat them? Best of luck to you in finding your way. 

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Celiac disease test are going to give a negative result on a gluten free diet. To take the test you HAVE to be eating gluten daily for 12 weeks for the blood test. Due to the pain and agony we call it a Gluten Challenge. Then you have keep eating it for the endoscope and biopsy. If you have DH then then take a biopsy from a clear spot next to a lesion, I honestly know nothing of DH since it is not one of my symptoms. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

What I can tell you is I have a similar gut issues, Gluten huge no, allergic to corn ,soy and dairy intolerant, allergic to peanuts, few other fun oddities, and due to Ulcerative Colitis I can not eat Fruits, sugars, carbs. And I think I might have a some kind Enzyme issues not diagnosed but I can not eat meats other then fish and crab and then only in the tiniest amounts. I also have to take a ton of digestive enzymes to break down my food. Egg yolks are a no but I can live on egg whites, most tree nuts low in carbs high in fats, and leafy green veggies.

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On 14.11.2017 at 2:21 AM, Barbie Wickham said:

Hi KD,  I am just recently diagnosed with DH, Celiac Disease... I feel for you and what you are going through. I know all too well the pain & frustration. I also have hundreds of photos I’ve taken of my hands, elbows, knees & buttocks. I am by no means a Dr., but your photos look very much like a good friend of mine who suffers from several types of Psoriasis.  Hers started on her hands with the drying and cracking, big deep painful crevices, leading to bleeding and constant pain. Just thought I’d mention this to you and see if you have researched any of the different types of psoriasis and the biologics used to treat them? Best of luck to you in finding your way. 

Thanks, I've looked up prosiasis and does sound to make some sense although the implied relief still comes down to the same gluten-free, lactose-free, other-things-free diet...  Has your friend ever get any relief? I read online that psoriasis is generally diagnosed by its external appearance by a doctor but none of the dermatologists I have seen ever mentioned psoriasis, it's always been eczema or dermatitis... I would be scared to self diagnose myself. In any case, whatever name you call it (and honestly I'd prefer to say, "Sorry, I can't have your cake, I am intolerant to gluten," than, "Sorry, I can't have your cake, I have psoriasis!" :))) the problem is still same - too many things that I have to cut out... Thanks a lot for the note though, I will read about psoriasis more.

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On 14.11.2017 at 3:27 AM, Ennis_TX said:

Celiac disease test are going to give a negative result on a gluten free diet. To take the test you HAVE to be eating gluten daily for 12 weeks for the blood test. Due to the pain and agony we call it a Gluten Challenge. Then you have keep eating it for the endoscope and biopsy. If you have DH then then take a biopsy from a clear spot next to a lesion, I honestly know nothing of DH since it is not one of my symptoms. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

What I can tell you is I have a similar gut issues, Gluten huge no, allergic to corn ,soy and dairy intolerant, allergic to peanuts, few other fun oddities, and due to Ulcerative Colitis I can not eat Fruits, sugars, carbs. And I think I might have a some kind Enzyme issues not diagnosed but I can not eat meats other then fish and crab and then only in the tiniest amounts. I also have to take a ton of digestive enzymes to break down my food. Egg yolks are a no but I can live on egg whites, most tree nuts low in carbs high in fats, and leafy green veggies.

I was eating some gluten back then when was doing blood tests for celiac. A derm did take a patch of skin from hand to test it for yeast infection (not sure if that's what skin biopsy actually is, probably not). All is clear. Sorry to hear you're also struggling with diet :(( It really sucks to realise that everybody around is having a ball when you cannot have even something as simple as a banana without having to battle the consequences...

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Did a dermatologist AND  an allergist do allergy testing?  Derm tests for specific skin allergies. If your skin is coming in contact with substances that you are allergic to, you can get reactions that get the catch-all eczema label.   Same goes for allergies to dust, etc.  that you may come in contact with. 

Years ago I would get deep itchy red areas that would surface; my skin would peel off until it was painful to touch anything.  Best diagnosis I could get was dishidrosis. It tended to be mostly on the palm side of my hand.  At some point allergy testing revealed an allergy to dust and mold, but avoiding these did not stop these episodes. Many years later I went to a good dermatologist who did skin allergy testing. After finding out I'm allergic to many fragrances and to nickel, I simply avoided these or wore gloves, and had no further flare ups.

I recently went thru what I feared was DH. I had a rash with blisters that itched and burned. I had inadvertently used a hair product containing wheat protein, however it turned out to be the fragrance or dye in a dish soap I'd been using for a couple years.  Perhaps they changed ingredients, who knows.  After some light treatments, wearing gloves, and switching to a fragrance and dye free soap, my skin cleared up.

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For me, the DH rash was what lead my Dr. to have me tested for celiac.  Since I have IBS, I was thinking that was what was causing my stomach issues- and I was so bloated that I looked pregnant.  It is still my DH that lets me know, I have somehow encountered gluten/cross contamination.  My skin will start burning and itching within an hour of consuming gluten. And if I don't take an antihistamine ( which helps, but does not entirely get rid of it) then I am in big trouble with the blistering etc.  The stomach issues don't occur until 8-12 hours later.  One thing I wanted to mention- you do NOT have to keep eating gluten for the endoscope/biopsy to show celiac.

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6 hours ago, jaccah said:

For me, the DH rash was what lead my Dr. to have me tested for celiac.  Since I have IBS, I was thinking that was what was causing my stomach issues- and I was so bloated that I looked pregnant.  It is still my DH that lets me know, I have somehow encountered gluten/cross contamination.  My skin will start burning and itching within an hour of consuming gluten. And if I don't take an antihistamine ( which helps, but does not entirely get rid of it) then I am in big trouble with the blistering etc.  The stomach issues don't occur until 8-12 hours later.  One thing I wanted to mention- you do NOT have to keep eating gluten for the endoscope/biopsy to show celiac.

Welcome!  While it may be true for you (your biopsies may have revealed damage while you had been gluten free), researchers recommend a gluten diet for all celiac tests.  Amounts and times may vary.    Why because experts really do not know how each individual reacts to gluten.  A person can heal in as little as two weeks or damage can last for months to years (for a variety of reasons,like refractory celiac disease or a hidden gluten sources).

To insure the best diagnostic outcome, it is best to be prudent and be on a gluten diet.  😊

I am glad that you are doing well.  Nice to know that antihistamines can help reduce some symptoms of DH.  I do not have DH, but I do deal with chronic autoimmune hives.  Thank goodness for antihistamines!  

Please continue to share your DH tips.  We do not have as many members who have DH and we could use your expertise.  

Edited by cyclinglady

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I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though. 

I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?

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On 11/23/2017 at 12:42 AM, artistsl said:

I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though. 

I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?

Yes, I do not take iodine salt as well (forgot to add it), I get bubbles after it... That actually worries me a little because in long run what is my thyroid going to say (I do not eat seafood so there is no source of iodine for me at all)? I tried taking iodine supplement but got bad reaction to it. I am taking DEVA multivitamin supplement now (that's vegan, gluten, dairy etc free) and this seems to cause no reaction (it does contain some iodine, so that's covered now) and the hand seems to heal quicker and better now. It does not prevent bubbles or flare ups from appearing, but the skin does seem to recover quicker (I don't know if it's the strict diet without deviation or the vitamins really). I'm taking it with digestive enzymes (also for vegans, and all-sorts-of-things-free) to make sure the vitamins are digested.

I also get some neurological reaction to gluten and the other bunch of allergens - recently I ate chips (the package did not say it contained gluten traces, I found out about it only later) and I felt very weak and unable to stand properly, legs become very shaky (I am 31, not an old lady who you'd expect to feel weak at times). Sometimes I can get severe mood swings also. After taking absorbent medication I felt relief and the next day was normal. I never ever get such weakness bouts when on diet. 

Thanks a lot for your comment and encouragement!

Edited by KD_

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    • As was explained to me - Your gut heals and yes, you probably could eat gluten again and not feel any ill affect, for a while.  However....!  The damage is starting all over again.  Like picking a scab off of a sore.  Sort of a nasty comparison but accurate.  Celiac never goes away.    Google the banana babies.  Very interesting as it fully explains why celiac was once thought to be a childhood disease, 
    • I take Slice of Life gummy multivitamins. I think it's free of all that stuff.  
    • I wouldn't worry about the oven.  We moved in a rental house short term while waiting for our current home to go through and  I wiped out the oven and then used it.  No problems.  When visiting a friend who cooks pies all the time  I just pop a loose piece of tin foil over my stuff.  I think covering the stuff is more for my mental health than anything else! 
    • Wouldn't!  Couldn't!   Shouldn't!   Oh my!  I hear  what some are saying about keeping areas clean, but no way.  I get not wanting to cook for a big group but a couple pretty easy, and cost effective, thoughts are a simple crock pot or two of chili, taco bar, potato bar or a salad bar.  I just did a Xmas party for 22 people, only 4 of us are gluten free, and did crock pots of chili.  for bread I bought gluten free hamburger buns, sliced them and then quartered them.  It made great bread garlic bread.. 
    • Jmg, Here is a nice thread where Ennis_tx has posted many dairy free link/resources in case you have not read this thread yet. Also to answer  your main question about Casein and as Awol noted about their being a difference about lactose and casein since lactose free cheese can still cause problems. See these livestrong links that summarizes the difference between lactose and casein and why it is usually the casein most people react too. https://www.livestrong.com/article/396733-types-of-casein-protein/ https://www.livestrong.com/article/412339-what-cheese-has-no-casein-or-lactose/ I would also review your medicine's.  I had a bad reaction to my BP medicine Losartan causing my dairy allergy to resurface. after 6 weeks off it my villi seems to be able to tolerate dairy again. I hope this is helpful and I hope you find out what is causing you your dairy problems. A little testing should help you determine if it the casein or the lactose in the dairy is the problem. Lactaid can help with the lactose problem.  Or as Awol noted try a lactose free cheese to see if dairy still bother's you . . . then it might the casein or check your medicine's as it was in my case causing my dairy problem. People do grow out of a dairy problem often.  . . so don't give up on it entirely. Check back in 6 months and see if your villi have healed.   Mine did. I had a terrible milk allergy as a kid but grew out of it in time.  Thanks be to God. But do check your medicine (if you  take any) their might be something else ( that have taken for granite is safe) that might be causing unknown villi blunting as the Losartan did/was causing in my cause . . . causing my dairy allergy to flare back up. ****this is not medical advice only my experience after recognizing my BP medicine Losartan had caused  Villi blunting issues leading to my dairy allergy. I hope you find some of this information helpful and hang in there you can get better from a dairy allergy. I have from changing my medicine to a non-blunting medicine. posterboy,  
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