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Not Yet Diagnosed But Gp 99% Sure I Have Dh & Coeliac

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Posted 27 June 2011 - 09:53 AM

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?:

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Posted 27 June 2011 - 02:02 PM

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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Posted 27 June 2011 - 02:18 PM

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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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes
Gilbert's Syndrome , confirmed by gene testing



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Posted 22 August 2011 - 12:19 AM

It looks like DH to me. Just like mine except more widespread.
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Posted 20 September 2011 - 12:26 PM

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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Posted 22 March 2013 - 03:42 AM

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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Me - Feb 2012 - Celiac (Positive blood test and biopsy)
dd7- Jan 2012 - Celiac (Positive blood and biopsy), Asperger's Syndrome.
ds5 and ds3, Jan 2012 - negative Celiac panel but suspect DH, Both are HLA DQ2 pos.

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