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I'm Sure This Is Celiac, Why Doesn't My Doctor Agree?!


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22 replies to this topic

#16 squirmingitch

 
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Posted 23 February 2012 - 04:14 AM

Looks like what my dh on my hands looks like. Are there little fluid filled blisters? Sort of hard to tell in the photo if there's clear fluid in them or not. Mine have fluid filled blisters but not everyone has the fluid filled all the time. Even myself. Sometimes it just presents as sort of an insect bite type of thing. I think when they are doing that (no, I know) they are not as severe & don't itch as long & don't last as long & don't turn into nasty lesions. I can have both on my body at the same time.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


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#17 Honey015

 
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Posted 23 February 2012 - 11:05 AM

Yes, they are like lumps with a fluid filled centre. Almost like a volcano I suppose, that's the best way I can describe them! They are not what you would call an actual blister, like from a burn or a rub. More pimple like. And the area surrounding them gets raised and red, probably from the scratching. They cleared up on my hand probably four weeks ago, but there is still discolouration there, like scarring, and the skin is drier than before. My doctor (who thinks it's pustulating psorriasis!) advised to put steroid cream on it. My stomach is pretty bad at the moment and one of my elbows has started to flare up, so I might try and get a photo of that if it gets bad enough!
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#18 squirmingitch

 
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Posted 23 February 2012 - 03:50 PM

You can have your answer easily enough. Go off gluten again & if the GI issues & the rash goes away then there is your answer. I will tell you from my experience though that the rash can take some time to subside & you may also need to go low iodine to help it along. If you keep eating gluten & your rash is truly dh then I can tell you the rash will only get worse. Breaking out in more places, more severely, & longer lasting. Let me tell you it AIN'T pretty nor is it easy to live with. Having said that ~~~ the rash can also subside for periods of time own it's own but if it's dh you can bet your bottom dollar it will be back & worse.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#19 Avalon451

 
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Posted 23 February 2012 - 10:26 PM

Can you see a dermatologist to have your rash biopsied for DH? That is how my daughter was diagnosed celiac. They would need to biopsy a current, active lesion-- on the lesion, and then right next to it on the clear skin. It can be hard to get a good biopsy unless the dermatologist is familiar with the procedure (ours is, but it still took her two tries). A postive skin biopsy for DH is as good as a positive endoscopy biopsy for celiac diagnosis.

I feel for you with the horrible itching. DH rash is supposed to be the worst itchiness known to humans. Not unusual for my daughter to wake up with the sheets bloodied because she was scratching her knees.

I hope you get some answers (and some relief) soon!
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Avalon

16 y.o. DD diagnosed with DH and celiac (positive blood and biopsies), January 2012
14 y.o. and 9 y.o. DDs, positive blood tests Jan. 2012, no biopsies; assumed celiac
Me, 47 y.o., lifetime of symptoms, negative blood and biopsy, assumed NCGI
DH 51, negative blood but went gluten-free with us anyway.
My husband is our best supporter!

#20 squirmingitch

 
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Posted 24 February 2012 - 02:46 AM

The skin biopsy is NOT I repeat NOT done taken ON the lesion!!!!!!!!!!!!!!!!!!!!!!!!!!! That is why people come up with false negatives. Because Derms don't know how to do it right & people getting it done don't know any better either. Avalon, I understand your daughter had 2 places biopsied ~~~ 1 ON a lesion & 1 adjacent to a lesion. The 1 adjacent is where they came up positive.


QUOTE:

It's important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

http://celiacdisease...Skin-Biopsy.htm

And another:
A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA. http://www.celiac.ni...Dermatitis.aspx





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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#21 Avalon451

 
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Posted 24 February 2012 - 09:55 AM

The skin biopsy is NOT I repeat NOT done taken ON the lesion!!!!!!!!!!!!!!!!!!!!!!!!!!! That is why people come up with false negatives. Because Derms don't know how to do it right & people getting it done don't know any better either. Avalon, I understand your daughter had 2 places biopsied ~~~ 1 ON a lesion & 1 adjacent to a lesion. The 1 adjacent is where they came up positive.


QUOTE:

It's important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

http://celiacdisease...Skin-Biopsy.htm

And another:
A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA. http://www.celiac.ni...Dermatitis.aspx


Yup, although when I said she had two biopsies, what I meant was that the first one was on her elbow, on a lesion that was not particularly new. The dermatologist thought it was psoriasis. When it came back unreadable because of the damage, she started suspecting DH. The next biopsy she did was on a new lesion on DD's back. She told me that she was supposed to take one directly ON the lesion, then right next to it on clear skin, like 1/4 inch away (so two samples) so that the lab could compare them side by side, knowing that they came from the same area. One would be too damaged to read the fluorescent dye, the other would show the subcutaneous damage before it erupted.

I hope more dermatologists become very familiar with the proper technique and the rate false negatives can be brought down.
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Avalon

16 y.o. DD diagnosed with DH and celiac (positive blood and biopsies), January 2012
14 y.o. and 9 y.o. DDs, positive blood tests Jan. 2012, no biopsies; assumed celiac
Me, 47 y.o., lifetime of symptoms, negative blood and biopsy, assumed NCGI
DH 51, negative blood but went gluten-free with us anyway.
My husband is our best supporter!

#22 mushroom

 
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Posted 24 February 2012 - 02:07 PM

Just to weigh in with a few additional points.

Macrocytosis
: I had this for years, not grossly abnormal but consistently too high - my doc told me it was nothing to worry about. I stopped eating gluten in the hopes of helping my RA, but then found it helped my (almost lifelong) GI problems immensely, found this forum, self-diagnosed, the folks here helped me with my additional food intolerances and what else I should be tested for. So, amongst the other things, I was tested for B12 and folate, and both readings were in the gutter. Combine that with macrocytosis and it adds up to pernicious anemia, not iron deficiency anemia. My iron levels were perfectly fine :P I was also very low in Vitamin D.

Validity of testing: It is commonly recommended that to get the most valid result you should be eating the gluten equivalent of 3-4 slices of bread per day for a period of two to three months. One week in the scheme of things does not amount to a hill of beans. Most docs are not aware of this and make wild guess recommendations. Even then the testing can be a false negative as there is a 20% error rate on testing. If you were to have further testing done (after eating gluten for at least 2 months!!) ask them to run the DGP (deamidated gliadin peptide) which is the newer test and seems to be the most specific for celiac disease. Did they run the total serum IgA at the time of your last testing to assure you were a normal IgA producer?

DH biopsy
: The quickest way to get a diagnosis which does not involve the consumption of enormous quantities of gluten. So long as you have an active lesion, and you have a dermatologist who knows what they are doing, if you in fact have a positive DH biopsy you are celiac by definition, as this is the skin form of celiac. Avalon's post is the first I have heard of taking a biopsy of the lesion itself; all other information I have read is just to take the biopsy from the skin immediately adjacent to the lesion.

I wish you success in getting an acccurate diagnosis. :)
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Neroli


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#23 itchy

 
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Posted 25 February 2012 - 01:37 PM

I'm in the UK as well.

There are some advantages to having an actual diagnosis in the UK because you can get certain gluten free food on prescription, on the NHS.

Because I'm not a resident, I don't qualify, but you might.

Regarding Chinese food mentioned earlier, there are many avenues for gluten to be found in Chinese food, wheat noodles, sauces, etc. Soy sauce which is not specifically labelled gluten free is a risk. I reluctantly avoid ethnic restaurants because most of the meals are complicated, very likely to include gluten, and it is sometimes difficult to communicate with the staff. A big loss for me. There are some kinds of restaurant meals that are lower risk. Salads are your friend. Jacket potatoes are a default lunch item when all else fails.

Luckily in the UK you can find labelled gluten free food almost anywhere.

There have been other Brits posting in the past. Feel free to ask for info.
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