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I'm certainly no expert and just as confused as you. My rash is very persistent and the meds my rhuemy gave me have not gotten rid of it yet. Some of the other symptoms that I developed were Raynaud's (fingers and toes turning white in the cold), overall exhaustion, mouth sores, and chest pain when I breath deep. Not all of my test results are consistent with Lupus either. My doctor says it is still in the emerging stages. My first ANA was very high, but the more recent one was low.
I've learned that autoimmune diseases are very difficult to diagnose. They are a simply a combination of symptoms. The medical profession, in an attempt to provide more standard treatments, lumps a bunch of symptoms together and gives it a name. Sometimes these symptoms overlap with other groups and some aren't standard in any given dx. Many people are diagnosed with more than one autoimmune disease.
My doctor is not sure if my rash is part of the lupus or something else. I guess the trick is to just treat the symptoms and try to stay ahead of the flares.
Again, I'm far from an expert. My advise is to stay in front of your doctor. Be respectful and kind, but strong. Ask for more tests, ask to see specialists, ask for copies of your results. Keep a journal.
I am doing the same as you, on the internet trying to find some answers. Sorry I couldn't be anymore helpful.
My rash still seems more similar to DH than to the typical Lupus rashes that I've read about. However lupus can attack your skin in many different ways and nothing is really typical. I'm still learning but I think the best explanation may be that it's more like an allergic reaction to what's happening in my body, the sun or heat then it is a direct infection.
Along with the high ANA results I started developing other symptom's of Lupis. So, though I'm certainly not happy about the diagnosis, I am pleased that I have good care in place.
It's hard to know if the gluten free diet improved my skin. For a while I thought it was, but I was never rash free. I think the improvement I saw was from the antihistamines I was taking. I will say that I felt an overall improvement in my health when I eliminated gluten. Personally I think we have too much bread in our diets and since this experience, I have greatly reduced my overall consumption. I don't see that changing.
It is nice to not have to worry about cross contamination though. Dining out is a much more pleasant experience - that's for sure.
It's been a long time since I've visited this forum but felt i should give you an update. Though I was convinced my itchy rash was DH, I have since learned I have lupus. I'm doing well. I have a great rheumatologist and my meds are helping.
My thought in posting this was, I know there are many of you, like me. Looking for an answer but not getting the results you had hope for with your gluten free diet. My rash is so similar to what I understand DH to be that I'm still surprised at the results. But as I learn more and more about Lupus the more I see it is a fit.
So, just a note of caution to keep pushing your doctors for the care you require. It was a high ANA result that was the clue, in my case.
I hope you all are well. I don't know about you, but this heat/sun/sweat sure makes my rash super itchy.
Take care and thanks for all of the warm support many of you offered me.
I would love Dapsone, but my doctor still feels DH is not the culprit. He is sending me to a Rheumatologist for more tests. My ANA results came back high as well as recently getting Raynaud's he is suspecting Lupus.
DH would also result in a positive ANA test, wouldn't it?
I will continue to work with my doctors on this, but in the meantime I'm staying away from gluten and sea food.
I'm back. That little experiment didn't turn out very well. Two weeks of full gluten gluttony has convinced me. My skin has never been worse. So until my doctor comes up with a better idea I'm going to stay away from the stuff.
Now i have some catching up to do. This forum has been busy.
The true test will be to see how I react to eating gluten again. For the last two days I have reintroduced gluten. Tonight I notice a number of new blisters, but who knows what else could be causing it. My plan is to continue to eat gluten for a couple of weeks and then stop again and see if there is a difference.
The support I have found in this forum is truly moving. Thank you!
Two of the tests were of the lesions, the third of the skin adjacent. The third one was an immunioflouresence test. When I had that one I have been gluten free for only two weeks. Do you think that would have an impact on the test?
Well my itchy friends, the verdict is in and my third biopsy was also negative for DH. I guess I don't have it. This leaves me itchy and without answers. The doctor has ordered a bunch of new blood tests but has no explanation for my rash....and I was so certain it was DH.
I had some bread last night and haven't noticed any response yet, so maybe he's right. At this point I have no choice but to trust in my dermatologist and hope he comes up with some answers.
Thanks for the support. I know I shouldn't complain, many here have been dealing with this for a lot longer than I have. I'm just so surprised.
I don't seem to have the same sensitivity to iodine. I have limited it, but recently had some eggs and then some yogurt and they seem to be OK. I'll keep my fingers crossed. In the meantime I will try not to scratch.
I have been gluten free for 6 weeks and my lesions were finally clearing. Though I still had a bunch of sores there were few that were "active".
Then I got a nasty cold and started to take some decongestants not even considering they would have gluten in them. Within 24 hours blisters began to appear on my hand. Then, last night, I mindlessly tested the pasta I was cooking for my kids. One spaghetti noodle and wham-mo - I'm a mess.
I woke up this morning with bumps all over my back and legs. ARGH!
I don't have a question - Just writing in to vent.
Elbows, thighs, upper back, lower back, shoulders, butt, belly, neck, scalp, forearms, ankles and in my ears! I've been gluten free for 5 weeks and am finally getting some relief. The lesions are heeling quickly now.
I think your best bet is a new doctor!! Goodness gracious. What more evidence does he need?
The biopsy can be uncomfortable, but I wonder if it's necessary at this point.
Eat_Meat - I'm so Sorry to hear about this reaction. Not only was your experience very scary, but I can only imagine how disappointed you must be to be unable to tolerate the Dapsone. I will be interested to know if the DH returns and if it does how quickly it happens.
You are wise to move on to a different doctor. It must to horrible to have to consider the costs of treatment at a hospital while having such a serious reaction.
In Canada health care is free, but wait times can be frustrating. I'm still waiting for the results from my biopsy.
I'm really glad to here the dapsone has worked and your sores have healed. The information about NSAID is very valuable. I will certainly add to my avoid list.
I'm still waiting for the results of my second biopsy, but in the meantime my strict gluten free - iodine reduced diet seems to be doing the trick. In the last few days my sores are clearing up. They were on my arms, legs, back, torso, hands and scalp and suddenly they are all disappearing.
I'm going for another biopsy on Monday. I would like to try Dapsone, but don't think my GP will prescribe it without a definitive diagnosis. I've been Gluten free for almost two weeks now. I'm also greatly limiting my iodine (thanks for this advise). So far, I'd say I am more convinced this is food related. I still have plenty of lesions and the rash has spread to some new areas on my body but I do notice that certain times are worse than others. For instance, I had noticed that I wasn't itching near as much but then ate out at a restaurant. I thought I had ordered well, but by the time I got home my skin was on fire. By morning I had a whole new crop of bumps.
Finding things to eat has been fine and I have my first loaf of very expensive, gluten free bread in the maker now.
I'm so thankful for the support and advise I have found in this forum. I know the people around me don't want to hear about my troubles. You know, "it's just a rash"...