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Rash Disappeared When Diet Tweaked
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I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?

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I too, had rashes that did not occur in the typical places for Celiac DH. I was on anti-fungals, aniti-virals, anti-bacterials, and finally they said it was neurotic excoriation. It went away but only after 14 months totally gluten free. I went Paleo and it all went away...including depression and anxiety, migraines and muscle weakness. I say if the rash goes away when you get off of wheat and gluten...then it probably is DH...

They certainly do not know enough about it to be diagnosing it consistently with any accuracy. Your research is as good as it gets. I would assume DH and live accordingly. Congratulations on healing yourself!

This is just my humble opinion after 7 miserable years with this rash moving around my body and landing on my face. Mine is on the forehead and chin...or should I say WAS!!! Because I too, healed myself. Turns out I am extremely sensitive to gluten...as you are....and I do way better on whole foods, no preservatives and no grains.

Took a long time...but the rash is gone...never could get a dermatologist to agree to biopsy...so we will never know....except that...we already know!!!! Thank you for sharing your story because other's will read it and heal from it too.

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You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used.

When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

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You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used.

When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

I am not sure it is lactose intolerance either. I have been somewhat confounded by my experiments with dairy. I seem to do best with aged cheese like cheddar which is low in lactose, but then I too have trouble with Lactaid which is supposed to be just as low in lactose. Yogurt does kind of so-so for me. I drank milk with no problem up to a few years ago, so I would question a casien problem- seems like it would have bothered me since childhood.
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I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?

I 'had' a small 1" diamter spot on my hand, that would blister, peel off, be all puffy and inflammed looking...then repeat that cycle over and over. It hurt too! Hurt like a burn would. My doctor passed it off as stress induced excema, said he had never seem an excema patch that concentrated though.

6 Months later I went gluten free and it dissapeared! Now it returns only when I eat gluten...and its spread it now covers more and more of my pink/side of hand when I eat gluten. (I am only on my 4th or 5th glutening) Now I seem to more sensative though too, bread crumbs were all over my kitchen from the kids...I broke out somehow from that.

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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