Can you have DH with negative blood tests?

[Gusmom]

Hi. New here but you’ve been coming up in my searches for a while. 
 

Is it possible to have dermatitis herpetiformis and not celiac, or to test negative on the blood tests?

A friend with celiac mentioned that they had itching and bruising and I might want to look into it. It seems to have a broad presentation in how it looks but could fit. 
 

I sent info to my dermatologist & she agreed to do a biopsy at my visit this week. I would be thrilled if it were this simple  it will be hard to find a spot that is close to a spot but not a lesion or red spot yet  

We’ve been treating what I thought was new contact dermatitis (& also some follicular inflammation) for months. New spots keep popping up and old ones are very slow to heal. Some spots still follow that pattern & I have new patch test later this month. 

My normal allergy response does not cause this itching. It’s painful itching & at times burning and widespread - lower legs, torso, & arms are the worst).   I notice itching & then within a couple of days, I will have red spots (look like tiny pricks but upon closer look, most not entirely flat - like tiny scabs & some larger). Sometimes I will notice a cluster of the flatter tiny red dots but the next day they are turning into the raised dots). I’ve never had this type of itching except when I had shingles. None of my steroid creams, moisturizer, or anti-itch remedies seem to really help.

Also - are there any other things I should discuss with my dermatologist or they should test for?

 

[trents]

Welcome to the forum, Gusmom!

First, it may be incorrect to distinguish DH from celiac disease. DH is the epidermal expression of celiac disease and not a separate disorder. Celiacs who have DH usually have gut involvement also but a small percentage do not. In fact, the presence of DH is considered definitive for celiac disease. There is no other known cause for DH. There are many symptoms of celiac disease that are manifested outside the gut. But many docs are operating on outdated information in that regard and will only look for celiac disease when gut symptoms are present.

If your bumps have blisters this could very well be DH. A low iodine diet sometimes helps prevent outbreaks of DH but many people find that the only effective medication for DH is Dapsone. So, if testing shows you do have DH then talk to your dermatologist about Dapsone.

DH is confirmed by skin biopsy and not every dermatologist knows how to correctly do the biopsy. The samples should be not from the bumps but from the skin adjacent to them. You might want to feel out your dermatologist as to his or her knowledge about that.

[Scott Adams]

Welcome to the forum! It may also make sense for you to get a celiac disease blood panel before going gluten-free and making any dietary changes. Talk to your doctor about this, but here is more info:

 

[Gusmom]

Thank you for that resource. 
i know I’d been tested in the past & it was normal. I went back through 2 sets of records & saw it was back in 2010. Labeled as TTG-IGA with two results/

lGA AB

IGA A

I swear I’ve had it done more recently, but can’t currently access tests done by a former pcp with another health organization. That would have been about 4-5 years ago though. 
 

[trents]

Along with the IGA AB and the IGA  there should be numbers. What you gave is just the name of the tests, not the results. And the numbers should include reference ranges used by that particular lab since different labs use different ranges.

[Gusmom]

  On 6/12/2023 at 12:10 AM, trents said:

Along with the IGA AB and the IGA  there should be numbers. What you gave is just the name of the tests, not the results. And the numbers should include reference ranges used by that particular lab since different labs use different ranges.

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Right. I didn’t list the numbers because they were not even close to the ends of the reference range.

IGA normal range was 81-463. Mine was 148

TTG IGA AB negative range was <5. Mine was < 3 

 

[knitty kitty]

@Gusmom,

Diabetes and anemia can cause false negatives on antibody tests for Celiac Disease.

Also several vitamin deficiencies can cause nerve damage that feels like itching and skin problems.  Deficiencies in any of these: Vitamin C, Cobalamine Vitamin B 12, Niacin Vitamin B3, and Thiamine Vitamin B 1.  

Do your spots get worse when exposed to the sun?  Is there skin pigmentation near the spots?

[Gusmom]

  On 6/12/2023 at 11:37 AM, knitty kitty said:

@Gusmom,

Diabetes and anemia can cause false negatives on antibody tests for Celiac Disease.

Also several vitamin deficiencies can cause nerve damage that feels like itching and skin problems.  Deficiencies in any of these: Vitamin C, Cobalamine Vitamin B 12, Niacin Vitamin B3, and Thiamine Vitamin B 1.  

Do your spots get worse when exposed to the sun?  Is there skin pigmentation near the spots?

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I have had anemia a few times in past but it’s been a while & recent tests were normal. Did reveal a borderline B12 so I’ve been taking a supplement for a month or so. 
Diabetes does run in family and I tested pre-diabetic once years ago  (not at time of the celiac test). They monitor that pretty closely. Itching & rash doesn’t seem to correspond. 
i haven’t noticed any correlation with sun. 
 

 I will try to pay closer attention to some of these things. 

[knitty kitty]

@Gusmom,

Doctors seem to forget there are eight essential B vitamins and B12 is just one of those.  B12 needs Folate B9, and Pyridoxine B6 to function properly.  Pyridoxine B6 needs Riboflavin B2 which needs Thiamine B1 and Niacin B3.  They are all interconnected.  

There is a higher rate of Celiac Disease in people with Diabetes.  Since Diabetes runs in your family, so might Celiac Disease.  

Anemia is frequently found in Celiac Disease, too.  B12 malabsorption and other vitamin deficiencies are common in Celiac Disease. 

These are all red flags that require more testing for Celiac Disease.

Have you thought about getting a genetic test to see if you have any of the most common Celiac genes?  Having a gene for Celiac Disease means you have a potential to develop Celiac Disease.  Having a gene for Celiac doesn't necessarily mean you have active Celiac, but with the diabetes and anemia, you should definitely pursue further testing.

Keep us posted on your progress!

[Gusmom]

Just an update (or lack thereof)

Got a call today that “biopsy was benign” & thus rash may be due to virus or medication and I could discuss at my visit to take our stitches next week. 

I emailed Derm to ask if there was another test pending (bc she had mentioned that the kind of test received in the DH article was specialized & not routine and did I want it — I said yes). 

I checked my quest record and only saw a Gram Stain test w note that there is no bacteria or red blood cells present. 

There is nothing listed as pending. 

So I guess I keep waiting until ne t week & hope there are more results coming. 😔

still itching. 

[trents]

When you go to your appointment I certainly would ask again about the specialized test mentioned in the DH article and ask why it was not run when you replied "Yes". As it is, you have no more information relating specifically to DH than before the biopsy was done.

[Gusmom]

  On 6/17/2023 at 2:51 AM, trents said:

When you go to your appointment I certainly would ask again about the specialized test mentioned in the DH article and ask why it was not run when you replied "Yes". As it is, you have no more information relating specifically to DH than before the biopsy was done.

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It is entirely possible that it was sent to a different lab that does the more complex tests but I will certainly ask. I thought they were doing 2 close together (because she said she would logically want to do a general one as well for something that isn’t going away). 
I am hoping i don’t have to do this twice lol

[trents]

How much real estate did they take from your hide when they did the biopsy? You had to have stitches?

[Gusmom]

  On 6/17/2023 at 3:44 AM, trents said:

How much real estate did they take from your hide when they did the biopsy? You had to have stitches?

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Yes. I think I have 2. They’ll come out next week 

[Gusmom]

New test results uploaded to my patient portal - negative. 
I have an appointment with my dermatologist next week to get stitches out and allergist a week from Monday for patch testing. 
If I had a pcp right now, I’d ask them about the genetic test but I’m in a holding pattern there (have one on paper but can’t see me until November; new insurance in July will assign one)

 

[Gusmom]

  On 6/18/2023 at 10:54 PM, trents said:

Images are busted.

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It shows that it is an jpg but the image was originally a screenshot and in a different format so I’m guessing that’s the issue.

basically said that there is “no specific disposition of IgA, IgG, IgM, C3, or fibrin” from “immunoflorescence punch biopsy”. 
 

There was a second test noted “Superficial Perivascular Dermatitis w Eosinophils” which “favors hypersensitive reaction to soluble systemic antigen” (such as a drug, virus, etc)

 

[Scott Adams]

Images are fixed.