I believe I have this! Serology tests all negative

[Hb333]

For 11 years, I've thought I've suffered with ongoing, recurrent shingles until a dermatologist (I hadn't seen one in ages) suggested celiac disease. GPs over the years suggested, initially, shingles, which made sense because of the itching, stinging and burning as well. But it never responded to the antivirals and I "thought" it was responding to the loads of L-lysine I took. The lesions were once cultured for HSV1&2 and I did a blood test-- negative on both on culture and blood tests.

But this last time, it was particularly bad. Initially 11 years ago it appeared as 3-4 small vesicles on my ribcage and itched and burned like crazy (hence the shingles diagnosis). Now, it's just worse every time, appearing as small or larger pimples and vesicles, burning and itching on both sides of my back below my bra-line and a little on my outer hips and buttocks, ribcage and outer abdomen. Nowhere else. The dermatologist ran a panel for celiac - 4 tests- all negative. I am convinced by the photos and descriptions of DH that this is still what I have, although he suggested another possibility of an allergy to my own female hormones (a skin allergy test for that is next). And I feel like this appears more severely around my time of the month although I have some sort of pimple or dot or vesicle and itching, burning nerve-like pain all the time in my back. I also had what appeared to be gout in March of 2020 around the start of COVID (swollen ankle, couldn't walk, very painful), but blood test showed no gout. I have pretty bad itching on my back most days, fatigue daily, severe trouble waking up in the mornings, knee and finger joint pain, tingling in one foot, occasional dizzy spells, a Vit D deficiency (take supplements), and get severe acne breakouts on my neck, chest, upper back and shoulders enough to be embarrassed and having to wear turtleneck type shirts in summertime! Could this be it regardless of the blood test?? He said it would show up in a colonoscopy which came back normal over the summer -- but I hadn't ever heard of the celiac possibility at that point so not sure if that was even tested.

(46, female. Skin symptoms started in Sept 2011)

[Hb333]

2 minutes ago, Hb333 said:

For 11 years, I've thought I've suffered with ongoing, recurrent shingles until a dermatologist (I hadn't seen one in ages) suggested celiac disease. GPs over the years suggested, initially, shingles, which made sense because of the itching, stinging and burning as well. But it never responded to the antivirals and I "thought" it was responding to the loads of L-lysine I took. The lesions were once cultured for HSV1&2 and I did a blood test-- negative on both on culture and blood tests.

But this last time, it was particularly bad. Initially 11 years ago it appeared as 3-4 small vesicles on my ribcage and itched and burned like crazy (hence the shingles diagnosis). Now, it's just worse every time, appearing as small or larger pimples and vesicles, burning and itching on both sides of my back below my bra-line and a little on my outer hips and buttocks, ribcage and outer abdomen. Nowhere else. The dermatologist ran a panel for celiac - 4 tests- all negative. I am convinced by the photos and descriptions of DH that this is still what I have, although he suggested another possibility of an allergy to my own female hormones (a skin allergy test for that is next). And I feel like this appears more severely around my time of the month although I have some sort of pimple or dot or vesicle and itching, burning nerve-like pain all the time in my back. I also had what appeared to be gout in March of 2020 around the start of COVID (swollen ankle, couldn't walk, very painful), but blood test showed no gout. I have pretty bad itching on my back most days, fatigue daily, severe trouble waking up in the mornings, knee and finger joint pain, tingling in one foot, occasional dizzy spells, a Vit D deficiency (take supplements), and get severe acne breakouts on my neck, chest, upper back and shoulders enough to be embarrassed and having to wear turtleneck type shirts in summertime! Could this be it regardless of the blood test?? He said it would show up in a colonoscopy which came back normal over the summer -- but I hadn't ever heard of the celiac possibility at that point so not sure if that was even tested.

(46, female. Skin symptoms started in Sept 2011)

Oh I also have tiny red spots and "cherry moles" all over. More and more every time I look, pinprick looking mostly but some are larger, and I see more every time I look at my skin in the light. I feel like I read somewhere once that this is related to eating bread.....

[trents]

Welcome to the forum, Hb333!

First, a colonoscopy cannot be used to diagnose celiac disease. celiac disease is an autoimmune condition that damages the villi that line the small bowel. Colonoscopies do not go up that far. Actually, an endoscopy with biopsies are used to diagnose celiac disease.

And as you know, there are also blood antibody tests that are used to diagnose celiac disease. You said "The dermatologist ran a panel for celiac - 4 tests- all negative." Do you refer to serum antibody tests for celiac disease? Do you know what specific tests were run? Do you have that info and can you post it? It needs to be said that serum antibody testing for celiac disease will be invalid if someone has already been attempting a gluten free diet.

Yes, we sometimes see people who actually do have celiac disease who test negative for the serum antibody tests. A small percentage of celiacs manifest the autoimmune response only in the skin, i.e., DH and do not have villi damage to the small bowel. You say, "The lesions were once cultured for HSV1&2". Have you ever had biopsy done during an active breakout of the skin lesions specifically for DH/celiac disease? DH is definitive for celiac disease.

[Hb333]

32 minutes ago, trents said:

Welcome to the forum, Hb333!

First, a colonoscopy cannot be used to diagnose celiac disease. celiac disease is an autoimmune condition that damages the villi that line the small bowel. Colonoscopies do not go up that far. Actually, an endoscopy with biopsies are used to diagnose celiac disease.

And as you know, there are also blood antibody tests that are used to diagnose celiac disease. You said "The dermatologist ran a panel for celiac - 4 tests- all negative." Do you refer to serum antibody tests for celiac disease? Do you know what specific tests were run? Do you have that info and can you post it? It needs to be said that serum antibody testing for celiac disease will be invalid if someone has already been attempting a gluten free diet.

Yes, we sometimes see people who actually do have celiac disease who test negative for the serum antibody tests. A small percentage of celiacs manifest the autoimmune response only in the skin, i.e., DH and do not have villi damage to the small bowel. You say, "The lesions were once cultured for HSV1&2". Have you ever had biopsy done during an active breakout of the skin lesions specifically for DH/celiac disease? DH is definitive for celiac disease.

Thanks for the message. 

No skin biopsy yet but if the allergy test for the other condition is negative I will ask about this. I almost always have active lesions. Some will heal but others crop up. A GP cultured them for HSV a few years ago and that was negative as was a blood test for that. They are worse in high stress times of my life. 

I have not tried gluten free but did go very low carb for about a year once and recall not having as many issues. 

The following blood tests were negative for celiac markers or whatever. Tissue transglutaminase IgA, gliadin antibody IgA, gliadin antibody IgG and IGA. All normal in range.

I had a random high A1C (pre diabetes level) a few months after having mild COVID but normal ones 2 months on either side of that. Also most recently after mild COVID, severe hair loss and pimply rash all over chest, upper back and neck. I get this rash about one time a year regardless of COVID (for years, since before the first alleged "shingles") and it lasts for about 2-3 weeks. Looks like acne, but also red patches as well as small pimples. 

I got a complete blood panel plus I donate blood so infectious diseases are not present (ie West Nile). I got an RA panel, all normal. My female hormone blood levels are defined as premenopausal. 😥 The only thing that consistently shows up is vitamin D deficiency. This DH seeming thing is usually manageable but has been quite irritating and unsightly and worse than ever recently (as has my diet with carbs and intake of beer lol).

DH is connected only to gluten? Or other conditions?

[Hb333]

When I donate blood I always have very high hemoglobin or hematocrit before that. High-normal so definitely not anemic, but not high enough to be hemochromatosis. Levels high- normal... for a man not a woman so they aren't diagnosing, just making sure you're not anemic. I worked at a blood bank for awhile. 

[Rogol72]

14 minutes ago, Hb333 said:

Thanks for the message. 

No skin biopsy yet but if the allergy test for the other condition is negative I will ask about this. I almost always have active lesions. Some will heal but others crop up. A GP cultured them for HSV a few years ago and that was negative as was a blood test for that. They are worse in high stress times of my life. 

I have not tried gluten free but did go very low carb for about a year once and recall not having as many issues. 

The following blood tests were negative for celiac markers or whatever. Tissue transglutaminase IgA, gliadin antibody IgA, gliadin antibody IgG and IGA. All normal in range.

I had a random high A1C (pre diabetes level) a few months after having mild COVID but normal ones 2 months on either side of that. Also most recently after mild COVID, severe hair loss and pimply rash all over chest, upper back and neck. I get this rash about one time a year regardless of COVID (for years, since before the first alleged "shingles") and it lasts for about 2-3 weeks. Looks like acne, but also red patches as well as small pimples. 

I got a complete blood panel plus I donate blood so infectious diseases are not present (ie West Nile). I got an RA panel, all normal. My female hormone blood levels are defined as premenopausal. 😥 The only thing that consistently shows up is vitamin D deficiency. This DH seeming thing is usually manageable but has been quite irritating and unsightly and worse than ever recently (as has my diet with carbs and intake of beer lol).

DH is connected only to gluten? Or other conditions?

The Canadian Coeliac Association have a very informative webinar on DH. It can be associated with Thyroid Disease or Type 1 Diabetes.

https://www.youtube.com/watch?v=PAdmsNiyfOw

 

[trents]

Your next step would seem to be to get a skin biopsy specifically for DH. If it turns out to be DH, like I said, that would be definitive for celiac disease. There is no other known cause for DH. My understanding is that a proper biopsy for DH involves taking the samples from an area close to the eruption but not from the eruption itself. The logic there is that the eruption itself represents the after effects of antibody buildup whereas areas adjacent to the eruptions are still experiencing antibody buildup. So, I would check this out if I were you because I'm just repeating what I read from another post made by another moderator who is very knowledgeable. The point is, get somebody to do it who knows what they are doing.

Another option would be to trial the gluten free diet and see if the skin eruptions improve. If you have celiac disease, you may be one of that small percentage of people who does not have it manifested in the gut but only in the skin. Your high iron levels suggest that as it points to not having nutrient malabsorption. 

[Hopeful1950]

I suffered for 10 years with DH before finally being diagnosed.  Ironically people with DH often do not test positive on the serology tests and also may not have the classic celiac damage in their small intestine.  I was told I was "crazy" just stop scratching...and on and on.  Finally a co-worker looked at my rash and said "my husband has that...it is DH!"  I didn't want to believe it.  I did do a genetic test that said I had all the genes that would strongly pre-dispose to celiac and DH.  I also went to an allergist who did all the allergy tests for me, but he immediately, upon looking at it, said "In know what that is" it is DH and he prescribed Dapsone.  Since I had already embarked upon the strict gluten-free diet, and did not want to do a gluten challenge to attempt further testing, he said if Dapsone caused dramatic improvement we could pretty much say it is DH.  Well it did and I continued strictly gluten-free and was able to discontinue Dapsone after a few months. 

I saw my GP, at least 3 derms and finally a psychiatrist after being told I was "crazy" by one derm.  After much psych evaluation the psychiatrist reassured me that the problem was a physical one and sent me to the allergist.  My only "crazy" was from the incessant unrelenting itching I had experienced for almost 10 years.

Best of luck to you in your quest to find a solution.

[Hb333]

11 minutes ago, Hopeful1950 said:

I suffered for 10 years with DH before finally being diagnosed.  Ironically people with DH often do not test positive on the serology tests and also may not have the classic celiac damage in their small intestine.  I was told I was "crazy" just stop scratching...and on and on.  Finally a co-worker looked at my rash and said "my husband has that...it is DH!"  I didn't want to believe it.  I did do a genetic test that said I had all the genes that would strongly pre-dispose to celiac and DH.  I also went to an allergist who did all the allergy tests for me, but he immediately, upon looking at it, said "In know what that is" it is DH and he prescribed Dapsone.  Since I had already embarked upon the strict gluten-free diet, and did not want to do a gluten challenge to attempt further testing, he said if Dapsone caused dramatic improvement we could pretty much say it is DH.  Well it did and I continued strictly gluten-free and was able to discontinue Dapsone after a few months. 

I saw my GP, at least 3 derms and finally a psychiatrist after being told I was "crazy" by one derm.  After much psych evaluation the psychiatrist reassured me that the problem was a physical one and sent me to the allergist.  My only "crazy" was from the incessant unrelenting itching I had experienced for almost 10 years.

Best of luck to you in your quest to find a solution.

The best diagnosis i heard was flea bites. I was convinced it was shingles and had to beg a few docs for anti viral which didn't touch it really. My back itches all the time. Thank you for this information. My dermatologist is pretty cool. I'll ask him this! Is there info you can provide on the diet? I know even supplements can cause it. I have been taking an otc vitamin D a lot. Wonder if the casing has gluten. I also get BV. 

[Scott Adams]

Here is some info on going gluten-free, which should only be done after all testing for celiac disease or DH has been completed. Even if you end up with negative test results you still may want to give this diet a try for a few months to see if you get some relief:

 

[sensitive celiac]

On 9/25/2022 at 4:03 AM, Hb333 said:

For 11 years, I've thought I've suffered with ongoing, recurrent shingles until a dermatologist (I hadn't seen one in ages) suggested celiac disease. GPs over the years suggested, initially, shingles, which made sense because of the itching, stinging and burning as well. But it never responded to the antivirals and I "thought" it was responding to the loads of L-lysine I took. The lesions were once cultured for HSV1&2 and I did a blood test-- negative on both on culture and blood tests.

But this last time, it was particularly bad. Initially 11 years ago it appeared as 3-4 small vesicles on my ribcage and itched and burned like crazy (hence the shingles diagnosis). Now, it's just worse every time, appearing as small or larger pimples and vesicles, burning and itching on both sides of my back below my bra-line and a little on my outer hips and buttocks, ribcage and outer abdomen. Nowhere else. The dermatologist ran a panel for celiac - 4 tests- all negative. I am convinced by the photos and descriptions of DH that this is still what I have, although he suggested another possibility of an allergy to my own female hormones (a skin allergy test for that is next). And I feel like this appears more severely around my time of the month although I have some sort of pimple or dot or vesicle and itching, burning nerve-like pain all the time in my back. I also had what appeared to be gout in March of 2020 around the start of COVID (swollen ankle, couldn't walk, very painful), but blood test showed no gout. I have pretty bad itching on my back most days, fatigue daily, severe trouble waking up in the mornings, knee and finger joint pain, tingling in one foot, occasional dizzy spells, a Vit D deficiency (take supplements), and get severe acne breakouts on my neck, chest, upper back and shoulders enough to be embarrassed and having to wear turtleneck type shirts in summertime! Could this be it regardless of the blood test?? He said it would show up in a colonoscopy which came back normal over the summer -- but I hadn't ever heard of the celiac possibility at that point so not sure if that was even tested.

(46, female. Skin symptoms started in Sept 2011)

Have them run a test for IGA deficiency.   If you are iga deficient, the tests for celiac may come back negative. Also, if you were not regularly eating gluten for AT LEAST 6 to 8 weeks, the tests for celiac are likely to be negative. The test is for antibodies created when you eat gluten. The endoscopy is a test that looks for damage created by gluten. If you stop gluten and haven't had enough by the time of the scope and biopsy, it is unlikely there will be enough damage to detect 

The biopsy for DH has to be done from skin adjacent to the rash, not among the blisters. If taken from the blisters, the result is not accurate. 

There are many doctors who do not understand celiac. If you feel these could be the reasons for a misdiagnosis in your case, speak to celiacs in your area and find a doctor who is more familiar with celiac.  I use a gastroenterologist.

[Rogol72]

On 9/25/2022 at 6:01 PM, Hb333 said:

The best diagnosis i heard was flea bites. I was convinced it was shingles and had to beg a few docs for anti viral which didn't touch it really. My back itches all the time. Thank you for this information. My dermatologist is pretty cool. I'll ask him this! Is there info you can provide on the diet? I know even supplements can cause it. I have been taking an otc vitamin D a lot. Wonder if the casing has gluten. I also get BV. 

I'm a long time DH'er, 10+ years. The first and really only clue was the sudden onset of a rash on my back that itched like crazy which my Dermatologist thought was Eczema. Steroid cream did not help at which point a skin biopsy for DH was taken and came back positive. A subsequent intestinal biopsy via endoscopy was negative for Coeliac Disease! A definitive diagnosis either way is really important.

[Hb333]

8 hours ago, sensitive celiac said:

Have them run a test for IGA deficiency.   If you are iga deficient, the tests for celiac may come back negative. Also, if you were not regularly eating gluten for AT LEAST 6 to 8 weeks, the tests for celiac are likely to be negative. The test is for antibodies created when you eat gluten. The endoscopy is a test that looks for damage created by gluten. If you stop gluten and haven't had enough by the time of the scope and biopsy, it is unlikely there will be enough damage to detect 

The biopsy for DH has to be done from skin adjacent to the rash, not among the blisters. If taken from the blisters, the result is not accurate. 

There are many doctors who do not understand celiac. If you feel these could be the reasons for a misdiagnosis in your case, speak to celiacs in your area and find a doctor who is more familiar with celiac.  I use a gastroenterologist.

Blood test results that showed negative for Celiac were:

IGA = 397.3 (normal range 84.5-499)

Tissue Transglutamine IgA = less than 20 (normal range)

Gliadin AB IgA = less than 20 (normal range)

Gliadin AB IgG = less than 20 (normal range)

I had definitely been eating all the gluten prior to this test (bread, buns, beer, breading, flour tortillas, etc), and I don't have a diagnosis yet. The dermatologist is going to send me to an allergist next to test for autoimmune progesterone dermatitis which he says causes similar skin symptoms, since I informed him this rash appears to coincide with my period (but I have at least a cluster to several small, itchy small dots all the time and they don't go away for weeks). However I will ask him about a skin biopsy. 

In the meantime, I ordered at my own expense a DNA kit which specifically tests for celiac DNA markers. I asked my birth family on both sides, no one has celiac or gluten sensitivity that they know of, although I know that doesn't mean much.

It's been 11+ years with this being an annoyance but I am tired of having rashy, intensely itchy skin and never having the opportunity to wear cute tops or dresses or swimsuits because of this nasty thing. Now I'm desperate to know the answer!

This last flare was particularly bad and my entire back is covered, and it's not going away, along with a terribly stubborn and spreading acne breakout on my shoulders, upper back, chest and neck despite being on anti-acne medication for several months that initially was working. Honestly I hope it can be controlled with gluten-free diet over the other potential diagnosis which has no real treatment other than birth control pills and steroids, neither of which I tolerate well. Thank you for the suggestions!!

[trents]

You are not IGA deficient.

[shadycharacter]

18 hours ago, Hb333 said:

Blood test results that showed negative for Celiac were:

IGA = 397.3 (normal range 84.5-499)

Tissue Transglutamine IgA = less than 20 (normal range)

Gliadin AB IgA = less than 20 (normal range)

Gliadin AB IgG = less than 20 (normal range)

Apparently there are three types of tissue transglutaminase IgA, type 2,3 and 6. Type 3 is the one most strongly associated with DH. I suppose your test was for type 2, the one associated with gut problems. 

Some people's DH seems to get worse from iodine, so instead of reducing gluten before diagnosis, perhaps it could give som relief to cut out excess iodine?

Article about DH and type 3 (epidermal) tissue transglutaminase IgA:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193738/

[Hb333]

6 hours ago, shadycharacter said:

Apparently there are three types of tissue transglutaminase IgA, type 2,3 and 6. Type 3 is the one most strongly associated with DH. I suppose your test was for type 2, the one associated with gut problems. 

Some people's DH seems to get worse from iodine, so instead of reducing gluten before diagnosis, perhaps it could give som relief to cut out excess iodine?

Article about DH and type 3 (epidermal) tissue transglutaminase IgA:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193738/

Thanks. I'm not sure which one it tested for! 

[Elizabeth Butler]

I briefly read thru these comments so forgive me if I’m a little off topic..

i swear up and down I have DH. I’ve had “acne” that can’t be treated with “acne” meds/creams. I got tired of paying for doctors and no answers. I put myself on a gluten free diet and it didn’t work magic but it made a big impact. I can finally leave my house…

i also tried bicalutamide and along the topic of the iga skin reaction. It worked miracles NO SPOTS! It’s constrained from use in women for birth defects. However, I am not at risk for pregnancy what’s so ever so I used it from an online pharmacy as my gyno/doctor would not prescribe it just wanted to throw birth control at me..

it’s just something else to consider along with a gluten free diet which I’ve come to love!

[Hb333]

2 hours ago, Elizabeth Butler said:

I briefly read thru these comments so forgive me if I’m a little off topic..

i swear up and down I have DH. I’ve had “acne” that can’t be treated with “acne” meds/creams. I got tired of paying for doctors and no answers. I put myself on a gluten free diet and it didn’t work magic but it made a big impact. I can finally leave my house…

i also tried bicalutamide and along the topic of the iga skin reaction. It worked miracles NO SPOTS! It’s constrained from use in women for birth defects. However, I am not at risk for pregnancy what’s so ever so I used it from an online pharmacy as my gyno/doctor would not prescribe it just wanted to throw birth control at me..

it’s just something else to consider along with a gluten free diet which I’ve come to love!

My acne is also pretty bad and takes weeks/ months to fade.  It's been like that for years esp on my upper back. Spironolactone worked for a few months, but then it came back w a vengeance on my neck and shoulders although the shoulders seem more like DH and itch. I also use tretinoin but it's not touching it. The true what I believe is DH (teeny-dimesize very itchy blisters and hard dots, even some bright red itchy dots) appear on cage and back between bra line and top of butt. Sometimes on outer hips, sometimes on sides of abdomen. I ordered a DNA test for celiac while I wait on an allergist referral. 

[Hb333]

2 hours ago, Elizabeth Butler said:

I briefly read thru these comments so forgive me if I’m a little off topic..

i swear up and down I have DH. I’ve had “acne” that can’t be treated with “acne” meds/creams. I got tired of paying for doctors and no answers. I put myself on a gluten free diet and it didn’t work magic but it made a big impact. I can finally leave my house…

i also tried bicalutamide and along the topic of the iga skin reaction. It worked miracles NO SPOTS! It’s constrained from use in women for birth defects. However, I am not at risk for pregnancy what’s so ever so I used it from an online pharmacy as my gyno/doctor would not prescribe it just wanted to throw birth control at me..

it’s just something else to consider along with a gluten free diet which I’ve come to love!

I was just reading about bicalutamide... that may be better than spiro which gives me horrible leg cramps so i only do half a dose. 

[sensitive celiac]

Before you get too comfortable on the gluten-free diet, you should get a firm diagnosis.

See a dermatologist and set up a test for biopsy when you have the blisters. Or ask your primary or gastroenterologist for a celiac test when you have been eating gluten for 6 tob8 weeks before the test. If it is less than this, you are likely to get a false negative test because gluten is necessary to make the reaction for which they test.   

If your primary doesn't see much celiac, as most primaries don't, it could be better to see a gastroenterologist. They see enough that they are likely to recognize the damage seen when they do an endoscopy, and they tend to be more familiar with other complications. 

Don't go gluten free until you have your diagnosis!

Then join a good celiac or DH group so you can learn to manage your condition. If you have celiac/DH and are still getting breakouts, there are likely to be some specific things you can look for/do to manage your co N diction better.

[sensitive celiac]

On 9/27/2022 at 12:05 PM, Hb333 said:

Blood test results that showed negative for Celiac were:

IGA = 397.3 (normal range 84.5-499)

Tissue Transglutamine IgA = less than 20 (normal range)

Gliadin AB IgA = less than 20 (normal range)

Gliadin AB IgG = less than 20 (normal range)

I had definitely been eating all the gluten prior to this test (bread, buns, beer, breading, flour tortillas, etc), and I don't have a diagnosis yet. The dermatologist is going to send me to an allergist next to test for autoimmune progesterone dermatitis which he says causes similar skin symptoms, since I informed him this rash appears to coincide with my period (but I have at least a cluster to several small, itchy small dots all the time and they don't go away for weeks). However I will ask him about a skin biopsy. 

In the meantime, I ordered at my own expense a DNA kit which specifically tests for celiac DNA markers. I asked my birth family on both sides, no one has celiac or gluten sensitivity that they know of, although I know that doesn't mean much.

It's been 11+ years with this being an annoyance but I am tired of having rashy, intensely itchy skin and never having the opportunity to wear cute tops or dresses or swimsuits because of this nasty thing. Now I'm desperate to know the answer!

This last flare was particularly bad and my entire back is covered, and it's not going away, along with a terribly stubborn and spreading acne breakout on my shoulders, upper back, chest and neck despite being on anti-acne medication for several months that initially was working. Honestly I hope it can be controlled with gluten-free diet over the other potential diagnosis which has no real treatment other than birth control pills and steroids, neither of which I tolerate well. Thank you for the suggestions!!

Get a test for IGA deficiency. It can make the IGA look normal when you actually have celiac.

[Hb333]

13 hours ago, sensitive celiac said:

Before you get too comfortable on the gluten-free diet, you should get a firm diagnosis.

See a dermatologist and set up a test for biopsy when you have the blisters. Or ask your primary or gastroenterologist for a celiac test when you have been eating gluten for 6 tob8 weeks before the test. If it is less than this, you are likely to get a false negative test because gluten is necessary to make the reaction for which they test.   

If your primary doesn't see much celiac, as most primaries don't, it could be better to see a gastroenterologist. They see enough that they are likely to recognize the damage seen when they do an endoscopy, and they tend to be more familiar with other complications. 

Don't go gluten free until you have your diagnosis!

Then join a good celiac or DH group so you can learn to manage your condition. If you have celiac/DH and are still getting breakouts, there are likely to be some specific things you can look for/do to manage your co N diction better.

Thanks! I went to a derm who didn't do a biopsy even though i had a lot of active, itchy bumps and blisters a few weeks ago but only a few new ones and several old ones now. I wonder why they didn't do a biopsy. He sent me for blood tests and all came back normal including IgA. Is the test for deficiency different? 

[sensitive celiac]

Yes. The test for deficiency is different.  Also, if they biopsy your rash for DH, make sure they take it next to the bumps, not on a bump.

[trents]

1 hour ago, Hb333 said:

Thanks! I went to a derm who didn't do a biopsy even though i had a lot of active, itchy bumps and blisters a few weeks ago but only a few new ones and several old ones now. I wonder why they didn't do a biopsy. He sent me for blood tests and all came back normal including IgA. Is the test for deficiency different? 

Total IGA is made up of the sum of all IGA components. If total IGA is low then individual IGA component scores (like tTG-IGA) are lowered along with it.

[knitty kitty]

Niacin, Vitamin B 3, the kind that causes flushing, helps immensely with DH.  Some acne is associated with DH and improves with Niacin.  

Reducing intake of iodine helps DH.  Iodine is in Dairy, Seafood, especially crustaceans, nori, kelp, and iodized salt.

@Hb333, BV is associated with Thiamine deficiency.  Production of antibodies can be affected by thiamine deficiency.  

https://pubmed.ncbi.nlm.nih.gov/31599434/