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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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Lynr

Celiac Rash - Dh

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lynr,

I've been there and done that, too. I recently stopped my chemo treatments because they had reduced my heart function by 30%. Thank goodness, I had been a lifelong runner--now my heart is "low normal" rather than "high normal," but at least it's still in the "normal" range.

One thing that happened during my chemo treatments is that my DH seemed to go crazy. It turned out that staph had invaded my DH rash...and perpetuated it. A round of antibiotics took care of it...but now I'm pretty scarred. You might ask to be checked for staph, because chemo devastates our immune systems, and we can develop problems with staph. I'm glad your PET scan is clear. I'm in Stage IV....so I don't have much hope of ever seeing a "clear" PET scan again (however, my homeopathic remedies make me hopeful!).

I was stage IV with NHL and had r/chop chemo in 2008 followed by 2 years of Ritauxen. I am a walking miracle and thanks to prayer, I am alive. I had cancer on my renal vein, splenic vein, liver, spleen was full, nodes all over my body were affected. It had spread to my hip, pelvic, ribs and 3 areas of my spine. I had a positive bone marrow test in addition to the above. I had many people praying for me and I kept faith in God that through this doctor, HE was going to keep me. With all the testing recently the doctors were thinking the NHL was 'back'. Instead they found Osteoarthritis, Iron def anemia and they horrible rash. I just would not accept that nothing could be done and started my research.

I am eating gluten-free but found I cannot eat Quinoa and now today realize I cannot use iodized salt, at all ! !

Really happy that I found this site. . . finding lots of good information! :)

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I had the blood work but expect the results tomorrow. I have a question for you. I don't see new blisters but I had iodized salt today and wow. . . itching horribly! My question is: How does the appearance of the lesions change as they are healing? I see some areas that were red turning a lighter color. I have some lesions that are scabbed and have redness around them still. Will they take weeks to heal even with Dapsone? I bought a Curel product this evening and it is very soothing. My other question is why does iodized salt affect DH? Any references to point me to?

Thanks! :rolleyes:

I knew mine was healing when it got drier, didn't spread, and the itching was less. It was less swollen. After a few days I had no doubt. I had to keep mine very moisturized because the scabs were cracking and flaking...my rash was like a "blanket"...so lots if peeling. I would soften the scabs in the shower and gently rub and they would come off.

Iodine would make mine itch like crazy...egg yolks and seaweed products are particularly bad for me. Potato skins and asparagus would do it, too. I ate so much iodine at thanksgiving last year it triggered a flare, not just contributed to the problem.

There are many references to iodine as an antagonist out there. Not all medical literature cites it, but quite a few Celiac sites will. The big "study" if you want one was a case study by a dentist about a patient who had a flare from surgical sutures being packed with iodine solution. If you google it you'll find it. It's on medscape, I believe.

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I knew mine was healing when it got drier, didn't spread, and the itching was less. It was less swollen. After a few days I had no doubt. I had to keep mine very moisturized because the scabs were cracking and flaking...my rash was like a "blanket"...so lots if peeling. I would soften the scabs in the shower and gently rub and they would come off.

Iodine would make mine itch like crazy...egg yolks and seaweed products are particularly bad for me. Potato skins and asparagus would do it, too. I ate so much iodine at thanksgiving last year it triggered a flare, not just contributed to the problem.

There are many references to iodine as an antagonist out there. Not all medical literature cites it, but quite a few Celiac sites will. The big "study" if you want one was a case study by a dentist about a patient who had a flare from surgical sutures being packed with iodine solution. If you google it you'll find it. It's on medscape, I believe.

I have an article from a dermatologist who specialises in DH which lists iodine to be avoided. Doesn't go into detail why, but I always think it's nice to have acknowledged. I only have it in PDF form though, so don't know how to make it available to everyone :-(

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Ihave never posted any info before, but here goes. I have been plagued with skin conditions since I was a child. Have seen many doctors, given many ointments, prednisone doses, taken allergy shots for over half my life. No success. I am 60 yrs old, and almost 2 years ago while talking to a colleague who went many years before being diagnosed with celiac started talking about her conditions & I thought that is me. In Dec it will be 2 years gluten free. I have severe dermatitis herpetiformis and after almost 2 yrs I think I see improvement. For those of you who think recovery will come suddenly, it will not. I believe deposits accumulated under my skin for so many years that hopefully i am seeing the light at the end of the tunnel. I have also not taken dapsone thru this time.

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Ihave never posted any info before, but here goes. I have been plagued with skin conditions since I was a child. Have seen many doctors, given many ointments, prednisone doses, taken allergy shots for over half my life. No success. I am 60 yrs old, and almost 2 years ago while talking to a colleague who went many years before being diagnosed with celiac started talking about her conditions & I thought that is me. In Dec it will be 2 years gluten free. I have severe dermatitis herpetiformis and after almost 2 yrs I think I see improvement. For those of you who think recovery will come suddenly, it will not. I believe deposits accumulated under my skin for so many years that hopefully i am seeing the light at the end of the tunnel. I have also not taken dapsone thru this time.

My blood test for Dapsone is still not back :( . I am seeing a tremendous improvement in some areas. I had the rough, red skin on my sides and those places have almost disappeared. I am in shock!

I almost decided to stop taking the Dapsone today. About 2 hours after I take a pill, I seem to have an itchy episode on the underneath of my arms that have not broken out previously. This rash/itch is not like the other lesions. Just thinking that could be a rash from the Dapsone? I will call my doctor tomorrow. I figured it would take several months for all my skin to clear as it covers head to the feet. One itchy, burny mess!

Good luck to you!

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My blood test for Dapsone is still not back :( . I am seeing a tremendous improvement in some areas. I had the rough, red skin on my sides and those places have almost disappeared. I am in shock!

I almost decided to stop taking the Dapsone today. About 2 hours after I take a pill, I seem to have an itchy episode on the underneath of my arms that have not broken out previously. This rash/itch is not like the other lesions. Just thinking that could be a rash from the Dapsone? I will call my doctor tomorrow. I figured it would take several months for all my skin to clear as it covers head to the feet. One itchy, burny mess!

Good luck to you!

An allergic reaction can show up as a red, web-like rash that has tiny pin-prick "heads" that barely rise on the surface of the skin. That's how I react to sulfa and cephalexin drugs. I usually develop it on my trunk/ chest/belly/thighs. I also feel like I'm getting the flu (swelling lymph nodes) if I keep taking it).

I had BOTH that rash and DH once. It was a thrill, let me tell ya. The allergic rash has a whole different feeling to it. Very scratchy and rough like my skin was made from sandpaper.

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Hi pricklypear,

I have had two rashes together before when they found out I was allergic to my water pill, and found out sulpher based drugs really give me an allergic reaction. I know how miserable that is!!

Dapsone was tried with me anyway and it didn't take but two weeks and my rash got worse. Took me off Dapsone, and now I am on Cellcept, an Immunosuppressant drug. I've only been on it three days. They want me to take weekly blood tests to make sure I tolerate it O.K.

I worry about these Immunosuppressant drugs though. I have a friend who is into natural healing and she doesn't want me on these drugs at all. But. Big But. haha no pun intended. But. I am so tired of my skin being red, itchy, patchy, sometimes blistery, sometimes thick and bumpy, but consistently a rash. I hate the itch because like my sign-on name states, I am a really good scratcher, and I'll scratch until the itch eases up and I'll have to clean my skin up from the blood I've caused to flow due to the breaking of the skin. Gross I know, but that's how it's been for me. I'll get cold water running and soak a few hand towels and lay the towels on my skin. That helps for about ten to twenty minutes. Then my skin will itch all over again. It's been a rough road to travel.

Right now my skin feels pretty good. I just went off the Prednisone though, and now I am on this medicine called Cellcept. I still itch, but not as much. My hope is that by going Gluten Free, and by trying this Cellcept med, my skin will improve. If the itch goes away, then my scratching will stop! When that happens, my skin will try to improve! Once this happens, I am hoping the Gluten free life will perhaps let me go off the Cellcept med too. That's my plan. Hope it works!

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Good news for the Dapsone issue. My hemoglobin is up to 12.2 and all my labs look good so doctor feels I can continue taking this drug. My blood sugar levels are down and I've lost 16 lbs which is wonderful!

My chest and belly seem to be healing and almost no itch or stinging. My scalp and mid back are just driving me nutso! I have also broken out on the sides of my face. I am gluten free for 1 week and also no iodized salt intake. I am still taking Benadryl. I question why am I itching so much on my back and scalp/face? I also scratched my tail end until it bled, just tonight. :unsure:

My doctor doesn't seem to see the difference in the rash. . . she is now asking me to see a different dermatologist to check for Cutaneous T-Cell Lymphoma. My PET scan was normal from 3 weeks ago but evidently CTCL would not show on a PET scan. So here I go again. She does feel the new dermatologist needs to test for DH properly. So maybe this is a good plan?

I have tried several medicated shampoos, tea tree oil and nothing is healing my scalp. Any suggestions?

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Good news for the Dapsone issue. My hemoglobin is up to 12.2 and all my labs look good so doctor feels I can continue taking this drug. My blood sugar levels are down and I've lost 16 lbs which is wonderful!

My chest and belly seem to be healing and almost no itch or stinging. My scalp and mid back are just driving me nutso! I have also broken out on the sides of my face. I am gluten free for 1 week and also no iodized salt intake. I am still taking Benadryl. I question why am I itching so much on my back and scalp/face? I also scratched my tail end until it bled, just tonight. :unsure:

My doctor doesn't seem to see the difference in the rash. . . she is now asking me to see a different dermatologist to check for Cutaneous T-Cell Lymphoma. My PET scan was normal from 3 weeks ago but evidently CTCL would not show on a PET scan. So here I go again. She does feel the new dermatologist needs to test for DH properly. So maybe this is a good plan?

I have tried several medicated shampoos, tea tree oil and nothing is healing my scalp. Any suggestions?

One week gluten-free and if the only low iodine you are doing is non-iodized salt, is not enough to see if the diet affects your DH.

Also, some people have DH, are on the gluten-free diet, and use dapsone and only keep DH "tolerable" for months.

One week is NOT enough.

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Good news for the Dapsone issue. My hemoglobin is up to 12.2 and all my labs look good so doctor feels I can continue taking this drug. My blood sugar levels are down and I've lost 16 lbs which is wonderful!

My chest and belly seem to be healing and almost no itch or stinging. My scalp and mid back are just driving me nutso! I have also broken out on the sides of my face. I am gluten free for 1 week and also no iodized salt intake. I am still taking Benadryl. I question why am I itching so much on my back and scalp/face? I also scratched my tail end until it bled, just tonight. :unsure:

My doctor doesn't seem to see the difference in the rash. . . she is now asking me to see a different dermatologist to check for Cutaneous T-Cell Lymphoma. My PET scan was normal from 3 weeks ago but evidently CTCL would not show on a PET scan. So here I go again. She does feel the new dermatologist needs to test for DH properly. So maybe this is a good plan?

I have tried several medicated shampoos, tea tree oil and nothing is healing my scalp. Any suggestions?

Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the Garneir line as that is gluten free as far as the shampoos and conditioners I have checked. They will label clearly. There are other brands that are good and you may want to post a query in the products section to get input from others.

It does take some time for DH to heal though. It is good that you are on the diet now and hopefully soon things will resolve well for you soon. Do make sure your doctor runs liver panels on you on a regular basis while you are on dapsone as it can have side effects that involve liver function.

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I am now headed into my 5th week of Dapsone and gluten-free, io

Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the Garneir line as that is gluten free as far as the shampoos and conditioners I have checked. They will label clearly. There are other brands that are good and you may want to post a query in the products section to get input from others.

It does take some time for DH to heal though. It is good that you are on the diet now and hopefully soon things will resolve well for you soon. Do make sure your doctor runs liver panels on you on a regular basis while you are on dapsone as it can have side effects that involve liver function.

Have you checked your shampoos and conditioners for gluten ingredients? Those may contribute to continued breakouts on the scalp. In shampoos meant to be soothing oats are a common ingredient and you also would want to check for wheat protein. I personally have to avoid soy protein in shampoos etc but that of course may not be an issue for you. I use the Garneir line as that is gluten free as far as the shampoos and conditioners I have checked. They will label clearly. There are other brands that are good and you may want to post a query in the products section to get input from others.

It does take some time for DH to heal though. It is good that you are on the diet now and hopefully soon things will resolve well for you soon. Do make sure your doctor runs liver panels on you on a regular basis while you are on dapsone as it can have side effects that involve liver function.

dine

I am now into the 5th week of eating gluten-free, no iodine, no shellfish and taking Dapsone. I am taking 25 mg 2x a day. I wonder if I should be taking a stronger dosage? My blood test were all normal and she did check the liver. I have checked my shampoo and discarded it and purchased Dove products. I am using Argan Ointment on the skin and Sarna Lotion. I will have more blood test the last week of November. I've now lost 20 lbs and feel better than I have in months. I still itch on my back but no new lesions. The lesions on my back were some of the latest to break out. I'm hoping they will calm down and soon! Sometimes I wonder if I just need to moisturize more often. I do take Benadryl everyday. I want to thank everyone that has responded to me, thanks for the suggestions that have been so helpful to me. :rolleyes:

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An allergic reaction can show up as a red, web-like rash that has tiny pin-prick "heads" that barely rise on the surface of the skin. That's how I react to sulfa and cephalexin drugs. I usually develop it on my trunk/ chest/belly/thighs. I also feel like I'm getting the flu (swelling lymph nodes) if I keep taking it).

I had BOTH that rash and DH once. It was a thrill, let me tell ya. The allergic rash has a whole different feeling to it. Very scratchy and rough like my skin was made from sandpaper.

I don't think I was having a reaction to the Dapsone. I continued taking it and watched carefully for skin changes. I have seen a few hive like places but they go away quickly. Thanks for your response.

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One week gluten-free and if the only low iodine you are doing is non-iodized salt, is not enough to see if the diet affects your DH.

Also, some people have DH, are on the gluten-free diet, and use dapsone and only keep DH "tolerable" for months.

One week is NOT enough.

I must be a person that Dapsone will make the DH tolerable. I must say that I have a lot of stinging too. I see such a great improvement, I must have patience as there are no miracle drugs. :( I am now into week 4 and I'm not eating any product with iodine, not just salt. I have have lost 21 lbs as of today and oh so happy about that! My feet and ankles are not swollen and that must have been due to salt intake. Thanks for your comments. :rolleyes:

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I have had blisters on my scalp and feet for many years. Dermatologists could not tell me why. In March of this year I broke out on my stomach and this rash has covered my body. Intense itch and stinging from my scalp to feet. Dermatologist have biopsied 3 times and each comes back with a different result. One was Grover's Disease, one was Follicutitis and one was eczema. All test were from the lesion, not the unaffected skin.

Yesterday my Int Med family doctor prescribed Dapsone as I begged her to try this. My rash looks and acts just like the DH that I see online. I have been diagnosed with Iron def anemia (mild), early Osteoarthritis, diabetes and went through chemotherapy for NHLymphoma in 2008. I had premature ovarian failure resulting in early menopause at the age of 30. All of the above can be caused by Celiac. I still test for an autoimmune and have negative results for MS, Sjor Syndrome, Lupus, Hepatitis, etc. I do have a cousin with Celiac and she has been gluten free for 6 years.

My question is. . . I began taking the Dapsone this morning and now have 2 doses in my system. I have been intensely itching for the past 2 hours all over my body. Is this normal for someone beginning Dapsone? When can I expect relief? I go back to the doctor on Monday for blood test and for her to check me. Thanks

Edited to add photos

http://i1323.photobucket.com/albums/u584/lindareading56/closerash1.jpg

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Well, I have joined the many that have been told to see a psychiatrist because of my rash. I just about fell off the exam table as I listened to a new dermatologist tell me that my rash was caused by my mind. He told me that I felt an itch, scratched it and it became a blister of fluid. Then when the skin was broken, it became infected. He also told me that "everyone" saw psychiatrists to which I replied, "No, everyone does not"! He told me his wife was a psychiatrist, maybe he was trying to drum up a patient for her? LOL

Then he tells me I do not have T Cell Lymphoma, he knew that for sure (just by looking). Hmmmmm He said the 3 biopsies I had by the first dermatologist would have shown DH . . . I'm like, "No they wouldn't, she took the biopsy from the lesion." I think the guy met his match today. The appointment ended with him referring me to the head of Dermatology at USF. What a waste of my time today! He did not even offer to take a biopsy. I'm not really sure what he does. . .

Fortunately, with the Dapsone and eating gluten free, I am very much improved and expect to be even more improved by Feb 2013 when I'm scheduled to see the next dermatologist.

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Maybe you ought to post that one in the "Stupid Stuff Doctors say" thread!

No, you aren't the first & you won't be the last to be told it's all in your head. heck, even the celiacs who don't have dh get told that on a regular basis.

Keep up with the Dapsone as long as it's okay for you & working & keep up the eating gluten free. :)

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Maybe you ought to post that one in the "Stupid Stuff Doctors say" thread!

No, you aren't the first & you won't be the last to be told it's all in your head. heck, even the celiacs who don't have dh get told that on a regular basis.

Keep up with the Dapsone as long as it's okay for you & working & keep up the eating gluten free. :)

I probably should do that. . . maybe later today. (posting to stupid/doctors) :wacko:

My doctors group has a patient portal and I just checked my labs from 11/29/12. My hemoglobin is up to 13 and liver and kidney stats are both good. I am not having a problem with Dapsone, at all. I will continue using it, it has made a huge difference. I really need to take another set of pics for my DH records.

I just wish I could get my scalp cleared and keep my hands from picking at the scabs! I have been using Tea Tree Oil plus I bought vitamin E oil and putting it on my scalp. I have been applying the vitamin E oil everywhere, it is soaking into my skin. My cousin has Celiac and uses vitamin E oil. She does not have DH but evidently her skin is dry. So . . . . thanks for the support and good advice! :D

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You better make darn sure that Vit E oil is not from wheat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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You better make darn sure that Vit E oil is not from wheat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Not from wheat but tocopheryl acetate which probably isn't good for me to use. It is used in many cosmetics but there is caution as it can be an irritant to skin, causing blistering, itch, etc. So, I probably won't use it now. It has coconut oil and soybean oil when checking the ingredients. Golly, I am finding I have to read the label on EVERYTHING! :rolleyes:

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It's in lots of shampoos --- the tocopheryl acetate is supposed to be okay for us to use.

YES! We have to read labels on EVERYTHING! It gets to be a drag. :unsure:

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    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
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