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Woolygimp

Could My Physician Have Been Mistaken?

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I've got red blistery bumps along my chest/shoulders and across my back and chest. When I was young, prior to actually start having the IgA response caused by Celiac at 17, I never had a problem with acne or blisters and this skin problem only started appearing afterwards. I went in for a biopsy with a dermatologist to check whether or not it was DH. The doctor that took the biopsy was just out of med school and was relatively inexperienced; he said that that it wasn't DH and instead prescribed me acne vulgaris medication.

When I look online for pictures of DH, it's odd that all of them look differently. My condition definitely resembles some of the pictures shown.

I was then diagnosed with Celiac a few months after that and this 'acne' is one of my biggest gauges for when I accidentally gluten myself. If I don't make mistakes they slowly fade away, but when I make one they flare up and actually develop instead blisters with pus.

Is there any chance this dermatologist made the wrong diagnosis? Before even taking the biopsy he seemed pretty adamant about it being acne. I'm definitely Celiac, but if it's just acne I probably need to use medication...even though a strict diet definitely makes it fade away...slowly.

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How was the biopsy done? Directly on top of one of the bumps, or immediately next to it?

It's my understanding that in order for the biopsy to be accurate, it needs to be taken from the area right next to it rather than right on top of it.


Dx Celiac 08/22/08

Iron Deficient Anemia / Blood Clotting Disorder / Severe Vit D Deficiency / Low Cortisol / Progesterone/Testosterone Deficient

Persisting Sx: bouts of extreme fatigue, dry itchy skin, dry gritty eyes, bouts of brain fog and terrible short term memory, hair loss, hypoglycemic tendencies, low body temps, low BP, cold hands and feet

UPDATE: Began BHRT 9/22/10 and it made a world of difference, for about 2 weeks. Hair loss stopped almost completely, energy levels way up and felt 19 again! Going back for a booster this week....

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How was the biopsy done? Directly on top of one of the bumps, or immediately next to it?

It's my understanding that in order for the biopsy to be accurate, it needs to be taken from the area right next to it rather than right on top of it.

I couldn't tell. This was several months back and he didn't tell me anything as far as the procedure and I didn't know to request a side biopsy.

This would be what it most closely resembles.

http://dermis.multimedica.de/dermisroot/en/29390/image.htm

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People have had their DH 'diagnosed' being all kinds of different skin problems. Of course the doctor could have been wrong, lots of dermatologists know next to nothing about DH (just like a lot of GI docs know precious little about celiac disease).

I believe that you have DH, period. And the only thing that keeps it in check is the gluten-free diet.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I have gotten acne even though I have celiac--and have had celiac since I was an infant. The acne for me comes from eating sugar, of which I am also very sensitive especially since I have to control the fungal/candida overgrowth pretty carefully since I have had too many antibiotics along the way since I wasn't told I had celiac until recently. If I am CC'd I often get canker sores amongst other symptoms, but not acne. Though eating gluten or getting CC does increase my tendency even more to having fungal overgrowth etc. I thus just avoid it now if its at all possible.

I fear that your doc may want to give you antibiotics to cure the acne. Honestly it doesn't work. What works is diet--avoiding sugar and bleached flours of whatever type, anything that goes to sugar quickly. Its good too sometimes to flush out your over burdened liver with things like dandelion root or silymarin caps and oregon grape root or yellow dock etc. Also eating lots of greens really helps and bulking agents like fresh ground up flax seed once or twice a day (1 tablespoon before being ground in a coffee grinder with 1/4 tsp apple pectin) mixed in plenty of water.

My understanding DH causes an itch as well as a bump etc. that doesn't easily go away even when one has gone off gluten. My mom's however always get worse when she goes off diet--plus the area around her eyes get red. It can take a year or two from what I hear to rid oneself of DH. Again I bet the dandelion and other liver cleansing herbs as well as lots of veggies etc. would help with that too. Just avoid ones like burdock that stimulate your immune system -- since that is the last thing we need given our over-active (auto) immune systems.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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It does sound like DH. If it is you will find that it does clear up gluten free. You should see a decrease in the amount of NEW lesions pretty soon although it can take up to 3 months for the ones you have presently to heal completely. However the antibodies will remain in the skin for up to 2 years before they can be completely gotten rid of by your body. During this time even the smallest amount of CC will reactivate them. My first couple years gluten-free the lesions were the first indication I got into something gluteny, but they were not as bad as when on the full gluten diet. I have now been gluten-free going on 6 years. My skin is clear and my hair has grown back but the slightest amount of gluten will still cause hair loss and a very minor DH breakout, usually one lesion the size of a pencil eraser instead of the oozing sores that would cover one side of my face or legs or arms or back. They also show up last now instead of first. The antibodies have cleared my skin and it now takes a few days for them to build up enough to cause a lesion.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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