If Rash Is Dh, Would Celiac Blood Panel Always Be +?

[wildwood]

Does anyone know if a celiac blood panel would always be positive if a rash is DH or are there sometimes false negatives?

[pricklypear1971]

I've read all bloodwork is more likely to be negative with DH. I don't know why, never seen an explanation....

It's also said DH people are more likely to have neg biopsies...of the intestines. And, DH people are more likely to be "silent" Celiacs except for that screamin' hot rash....

[Skylark]

Does anyone know if a celiac blood panel would always be positive if a rash is DH or are there sometimes false negatives?

The celiac blood panel doesn't generally show positive for DH unless there is also GI celiac disease. It isn't really a "false negative" because the blood test isn't expected to work. It's designed for GI celiac disease and in DH the antibodies are deposited in your skin, not in the blood. Heck it doesn't work 30% of the time in GI disease either! The way DH is usually diagnosed is the characteristic blistered appearance and response to a gluten-free diet, or by biopsying skin adjacent to the outbreak and testing for antibodies. There is also an older iodine patch test. It should be somewhere in the forum. You don't need testing as badly for DH because you can watch the rash go away on a gluten-free and low iodine diet. It isn't like trying to guess what your intestinal villi look like.

[pricklypear1971]

The celiac blood panel doesn't generally show positive for DH unless there is also GI celiac disease. It isn't really a "false negative" because the blood test isn't expected to work. It's designed for GI celiac disease and in DH the antibodies are deposited in your skin, not in the blood. Heck it doesn't work 30% of the time in GI disease either! The way DH is usually diagnosed is the characteristic blistered appearance and response to a gluten-free diet, or by biopsying skin adjacent to the outbreak and testing for antibodies. There is also an older iodine patch test. It should be somewhere in the forum. You don't need testing as badly for DH because you can watch the rash go away on a gluten-free and low iodine diet. It isn't like trying to guess what your intestinal villi look like.

GI damage is supposed to be patchier and therefore less severe, but assumed present in 90% of DH cases.

I think the rationale is the majority of "damage" is seen on the skin.

I saw something the other day where DH Celiacs also trend more to the neuro symptoms.

[Skylark]

GI damage is supposed to be patchier and therefore less severe, but assumed present in 90% of DH cases.

I think the rationale is the majority of "damage" is seen on the skin.

I saw something the other day where DH Celiacs also trend more to the neuro symptoms.

Really? I didn't realize it was that high. There are studies where as low as 50% of people with DH have TTG antibodies. There is an epidermal transglutaminase that they all have antibodies to.

[pricklypear1971]

Really? I didn't realize it was that high. There are studies where as low as 50% of people with DH have TTG antibodies. There is an epidermal transglutaminase that they all have antibodies to.

That's what they say, but who knows...since they tend to dx DH with biopsy (and we all know how often that happens) but NOT do a GI endoscopy if positive.

Once in a while I see bloodwork mentioned as an indicator TO biopsy....

And they wonder why I'm in no hurry to get tested for any if it. Geez.

[wildwood]

Thanks to both of you for the information. It has been very helpful.

[wildwood]

Thanks for the information on the iodine patch test. I had an itchy rash that appeared for the third time in the same area in a six month period. Each time it gets a little worse. It is itchy just before it erupts. It feels as though it is a spider or insect bite before it erupts which the first time it happened that is what I thought it was, but each time it lasts longer and erupts one welt at a time and is most itchy at nighttime. The most recent one looked like at least one of the DH pictures I viewed, but it is hard to say for sure because the pictures all look different to some degree. The spots are still visible although they are no longer uncomfortable and have faded quite a bit. Even though it looked like DH picture it was only on one side and I know for the most part DH is bilateral. After I posted this originally, the itching had stopped. I tried the iodine patch adjacent to the rash and in a couple of other spots and nothing happened. I was unable to find iodine 30% and used an iodine tincture, but the rash was already on the mend so I am wondering if that is why there was no reaction. This past week the base of my back felt sensitive almost burnt and like it wanted to be itchy, but was not exactly itchy-just sensitive. It is hard to describe. This happens from time to time. It does not get red or anything just a little itchy and sensitive. I also get itchy on my hips and this time hip bumps showed up the same time as the back burn/sensitivity. I can very slightly feel little pimple size bumps on my hips when this happens. I always have assumed it was dry skin. I can feel them, but cannot see them. They do not turn red at all. I decided on a whim to try the iodine patch test on my lower back and also on my hips. When I put the bandaids saturated in iodine on these areas the areas burned, only where the iodine touched. I now for two days feel as though I have steam burns. There was a water blister under the bandaid on my lower back that popped very easily. The skin on my hips is sloughing just where the iodine was and feels as though it has been burned by steam. My husband put on the iodine also to see if he would have the same reaction and he felt nothing and the iodine is all but faded. The spots where I put the iodine are red and "steam burned" and either sloughing or blistered. My daughter has celiac disease and while I was helping her explore her gluten free options I was eating almost completely gluten free. Now that she is not coming home as often, I started eating gluten regularly again. I don't think it is the iodine causing the "burns" because two weeks ago when I tried this I had no reaction to the iodine at all and it is the same iodine I used this time. I will probably go the the dermatologist for biopsy if the DH looking rash comes back again. In the meantime, I was wondering if anyone knows if this reaction to the iodine would be indicative of gluten intolerance or would there be other instances where one would react to iodine this way.

[pricklypear1971]

If you are allergic to iodine you would react with sloughing skin.

Not all DH sufferers react to iodone but a fair amount do.

I react but have never tried a skin test. Eating sushi and a day of eggs and dairy is enough proof for me.

[wildwood]

I did not react to the iodine at all two weeks ago and I used the same bottle of iodine for both "tests". Could I be allergic to iodine even though I did not react to it at all when I tried this test two weeks ago, but had a reaction this time?

[pricklypear1971]

Anything is possible. Allergies can develop at any time.

It's also possible that iodine builds up like iga antibodies (what causes dh) build up - and the effect can be cumulative. I really don't know. And I don't know anything about a skin iodine test for DH. My adventures with iodine have all been by ingestion.

My suggestion is to withdraw high iodine foods along with gluten and see if the rash recedes. Or, you could pig out on high iodine foods and see what happens. Personally, I vote for withdrawal because I prefer to see the rash go rather than arrive if you know what I mean...

Google "thyca" for a list of high iodine foods.

[squirmingitch]

Don't make the mistake of thinking it isn't dh because you don't have it bilaterally. When I first began getting the blisters they were not bilateral. Then they became that way. But still not ALL are bilateral. What you have described sounds very much like dh & the pictures don't show everyone's dh nor at the different stages/reactions. I don't know enough about the iodine patch test to tell you anything. But also be aware that the biopsy returns a 37% false negative if i recall correctly. Someone correct me if I'm wrong. Remember celiac disease is genetically predisposed so where did your daughter's celiac come from? If the rash appears again & you get a biopsy & it's negative then you owe it to yourself to challenge by going gluten free again. This is a weird disease & I propose that your having been gluten free for your daughter's sake either put off your dh presenting OR by now eating gluten your body is rebelling with the dh since it now knows the difference. If you had not gone gluten-free then perhaps you would not have exhibited dh symptoms for years & years yet. Just hypothesizing on that.

[wildwood]

Thanks for your responses. The truth is we do not know which side of the family my daughter's celiac came from. There is no diagnosed celiac disease on either my husband's or my side of the family. She had the gene test and it is from one side. Both sides of the family have relatives with problems that could fit into the celiac spectrum, but as we all know that is not hard to do. I think I will go ahead and give up gluten and for the time being iodine and see what happens. Obviously my body is trying to tell me something. If the rash comes back, I will go for a biopsy. Thanks again for your help.

[squirmingitch]

Thanks for your responses. The truth is we do not know which side of the family my daughter's celiac came from. There is no diagnosed celiac disease on either my husband's or my side of the family. She had the gene test and it is from one side. Both sides of the family have relatives with problems that could fit into the celiac spectrum, but as we all know that is not hard to do. I think I will go ahead and give up gluten and for the time being iodine and see what happens. Obviously my body is trying to tell me something. If the rash comes back, I will go for a biopsy. Thanks again for your help.

Just know that from everything I've read it's MUCH harder to get a medical diagnosis by a doctor of dh than it is celiac disease (the GI part). Because the dh tends to affect the skin then there is less symptoms & therefore damage of the intestines. The derm HAS to do the biopsy correctly & few actually know how to. I read yesterday somewhere a reliable source saying that more like 8 biopsies should be done because of the high incidence of false negatives even for correctly performed biopsies.

It is not surprising that there is no diagnosed celiac on either side of the family. so many celiacs go undiagnosed.

Good luck to you.

[itchy]

Wildwood: For what it's worth, my DH started when I went of my gluten free diet a couple of years ago.

I had been unaware I was celiac but was eating gluten free because I knew I didn't tolerate wheat products. But my GI symptoms had abated so I risked eating a few gluten meals rather than inconvenience my hosts where I was visiting. Within days I had full blown DH that continued to get worse even though I went back to my low gluten diet.

The DH only got better when I identified the rash as DH and went entirely gluten free.

What I'm saying is that I think a 'sudden' glutening can trigger DH. Just a theory based on my own experience.

[Di2011]

Wildwood: For what it's worth, my DH started when I went of my gluten free diet a couple of years ago.

I had been unaware I was celiac but was eating gluten free because I knew I didn't tolerate wheat products. But my GI symptoms had abated so I risked eating a few gluten meals rather than inconvenience my hosts where I was visiting. Within days I had full blown DH that continued to get worse even though I went back to my low gluten diet.

The DH only got better when I identified the rash as DH and went entirely gluten free.

What I'm saying is that I think a 'sudden' glutening can trigger DH. Just a theory based on my own experience.

And omg like itchy you don't want to make it as bad as many of us have.

Sort it out and if in doubt then go gluten free. please

[wildwood]

At my Husband's urging, I have decided to go gluten free. He said he eats what I cook any way so it will not impact him so much as long as he has a loaf of bread in the house for an occasional sandwich. He said my rash looked so close to some of the DH pictures we viewed and was so itchy he feels very strongly it is DH. If it comes back, I will go to dermatologist for a biopsy. My daughter's skin problems resolved after being gluten free for a period of time. She developed a screaming rash all over her body after being 8 months gluten free. I did not get to see it because she was travelling across country at the time so I cannot compare how it looked to my rash. In retrospect a couple of years before her celiac diagnosis she had persistent rashes on her knees. The dermatologists kept telling her it was psoriasis or eczema, but biopsies were inconclusive. I don't remember exactly what the rashes looked like, but I am quite certain they biopsied the rash itself and not the area around the rash. Her skin problems have resolved now that she has been gluten free for a few years. Hindsight sure is 20/20 isn't it? I figure even if I go gluten free and it is DH, chances are it will erupt again at some point as gluten works its way out of my body and I can go for a biopsy at that time. I have decided to deem the iodine test as inconclusive because it seems more like burns from the iodine since no lesions erupted anywhere else. Thanks.....

[pricklypear1971]

You make a good point. I think we sometimes miss the first eruption of DH. In retrospect I had a spot on my thigh I suspected was ringworm but was probably DH. This was about 6 months before the "big rash" erupted under my arms and became a permanent resident. And that's just the spot I remember - very possibly could have been more before that.

[lil'chefy]

GI damage is supposed to be patchier and therefore less severe, but assumed present in 90% of DH cases.

I think the rationale is the majority of "damage" is seen on the skin.

I saw something the other day where DH Celiacs also trend more to the neuro symptoms.

wow! where did you read that? It's like they are talking about me.

[pricklypear1971]

wow! where did you read that? It's like they are talking about me.

Probably PubMed. Search the papers for celiac/DH and a lot will come up. I have dozens of articles marked, read stuff regularly, hard to keep it straight by memory.

[wildwood]

Thanks for the information on the iodine patch test. I had an itchy rash that appeared for the third time in the same area in a six month period. Each time it gets a little worse. It is itchy just before it erupts. It feels as though it is a spider or insect bite before it erupts which the first time it happened that is what I thought it was, but each time it lasts longer and erupts one welt at a time and is most itchy at nighttime. The most recent one looked like at least one of the DH pictures I viewed, but it is hard to say for sure because the pictures all look different to some degree. The spots are still visible although they are no longer uncomfortable and have faded quite a bit. Even though it looked like DH picture it was only on one side and I know for the most part DH is bilateral. After I posted this originally, the itching had stopped. I tried the iodine patch adjacent to the rash and in a couple of other spots and nothing happened. I was unable to find iodine 30% and used an iodine tincture, but the rash was already on the mend so I am wondering if that is why there was no reaction. This past week the base of my back felt sensitive almost burnt and like it wanted to be itchy, but was not exactly itchy-just sensitive. It is hard to describe. This happens from time to time. It does not get red or anything just a little itchy and sensitive. I also get itchy on my hips and this time hip bumps showed up the same time as the back burn/sensitivity. I can very slightly feel little pimple size bumps on my hips when this happens. I always have assumed it was dry skin. I can feel them, but cannot see them. They do not turn red at all. I decided on a whim to try the iodine patch test on my lower back and also on my hips. When I put the bandaids saturated in iodine on these areas the areas burned, only where the iodine touched. I now for two days feel as though I have steam burns. There was a water blister under the bandaid on my lower back that popped very easily. The skin on my hips is sloughing just where the iodine was and feels as though it has been burned by steam. My husband put on the iodine also to see if he would have the same reaction and he felt nothing and the iodine is all but faded. The spots where I put the iodine are red and "steam burned" and either sloughing or blistered. My daughter has celiac disease and while I was helping her explore her gluten free options I was eating almost completely gluten free. Now that she is not coming home as often, I started eating gluten regularly again. I don't think it is the iodine causing the "burns" because two weeks ago when I tried this I had no reaction to the iodine at all and it is the same iodine I used this time. I will probably go the the dermatologist for biopsy if the DH looking rash comes back again. In the meantime, I was wondering if anyone knows if this reaction to the iodine would be indicative of gluten intolerance or would there be other instances where one would react to iodine this way.

I just noticed the strangest thing. I have been keeping an eye on my iodine burns because they still have not healed completely. I am also watching my original rash because it has been about a month and it is taking such a long time to fade away. The original patch I tested at the end of November that had no reaction when I first did it is now visible. I can see the outline of the gauze part of the bandaid and some red dots in the middle. This is so strange because I did this the end of November and had no itch or burn or anything at that time. This old outline was not there yesterday. It has not been itchy or painful in any way. It just seemed to appear. Very, very strange.

[pricklypear1971]

I swear iodine is cumulative and DH changes over time.

My first rash looked very different from my last rash before low iodine. And my last rash was minuscule compared to the any before (after being gluten-free 5 months).

I think DH is known to break out on damaged/injured skin. That may be why you see it now on those spots.