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Not Yet Diagnosed But Gp 99% Sure I Have Dh & Coeliac
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6 posts in this topic

I'm new here so still navigating my way around the boards. I have been suffering with my skin for 11 years (along with other symptoms) and have had many diagnoses including eczema, latex allergy etc.

My skin is at the worst it's ever been and the intense, painful itching is driving me mad. My GP looked at the rash and said he thinks it's linked with Coeliac but still isnt sure, I've had bloods taken today to test for wheat intolerance and coeliac antibodies.

Anyway I've attached a couple of piccies of my rash (as it is today) and when I have my skin biopsy done on the 14th July I'll be showing these photos to the dermatologist (as you can guarantee my skin will look less angry when I go), does this rash look like a typical DH type rash?:

Arm6.jpg

Arm5.jpg

Arm3.jpg

Arm2.jpg

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I would say that it's a good bet that it is DH.

In your photos I think I see little blisters, perhaps with hard centres, and surrounded by blazing red.

And you say that your skin is painful. That's what I experienced too. (but my blisters were larger and less widespread). With it being that widespread and painful, it must be very unpleastant indeed. Is the rash most painful at a particular time of day? Many people with DH report that it is worst in the evening.

And if you also have gastrointestinal symptoms, that would support it being DH.

It would be tempting to go wheat free immediately, but of course that would likely negate the skin biopsy in a couple of weeks. In any case the only real proof that you can't tolerate gluten, whatever the name they give to the condition, is to stop eating gluten and see if it goes away. As many of us have experienced, tests for these conditions aren't very definitive. Lots of false negatives.

In my experience you have to be 99.99% wheat free, maybe 99.9999%, 98% isn't good enough. But you may find you are actually eating healthier, as one generally has to avoid manufactured foods as being either too risky, or (if gluten free) too expensive.

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As the above poster states ,It may be tempting to go gluten free now but try to wait until your testing is completed. Consider deciding now if you want to have an endoscopy done regardless of your test results.

Then as soon as your testing is done(no matter what the results are) go gluten free, it will help!!!

Also once gluten free try to watch your iodine intake,for me a high iodine intake exacerbates my DH

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It looks like DH to me. Just like mine except more widespread.

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I don't know if what you have is DH...but WOW -- those pictures could be of *my* arms! It looks exactly like mine. I am still trying to figure out if I, too, have DH...so please do let me/us know what your doctor/biopsies find out. Many thanks!!

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I realize this is an old thread, but this is EXACTLY what my arms look like! If I knew how to upload pics, I would. The funny thing is, my rash never appeared until AFTER I was dx'd with Celiac and had been gluten-free for many months! It is just now starting to calm down after 4 months of flare-up.

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    • Welcome!   You were smart to think about cross contamination.  Although it is great that there are so many gluten-free options out there, in the beginning it is best to try a whole foods diet, until your son feels a bit better.  The learning curve for the gluten-free diet is steep.  It is better for you to get everything down before letting others feed him.   When I was diagnosed, my hubby had been gluten free for 12 years.  I thought I knew the drill and converted right over to those gluten-free goodies I baked him.  Turned out, like many of us, I had some food inolerances not related to gluten but as a result of gut damage.  So, additives like Xantham gum made me think I was getting glutened, but I was not.  So, again, try to stick to naturally gluten free foods that are less processed for a while.  When you do venture out, I use "find me gluten free" and read the reviews from celiacs (not a person who thinks gluten-free is a way to lose weight! )   Here are some great tips from out Newbie 101 thread:  
    • I have the same problem. Was told it was psoriasis but no treatments worked even injections. I was daignosed celiac in may, and noticed a year ago the palm of my hand would itch intensely then get small blisters. I believe they are both dh. Have been gluten-free since diagnosis but still have issues with both areas. Thankful digestive issues cleared but would love to know how long before they clear up? I hope we both get feed back and best wishes to you!
    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
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