Kind Of Shell Shocked

[JenR]

So I went gluten-free April 23 to see if it helped my rash. After 2 weeks I was discouraged as it didn't seem better. Sometime between 2 and 4 weeks a huge improvement happened... the rash has been in the same location for months, maybe even a year or more (outer ankles) so it's hard to believe it's coincidence.

What do you recommend for next steps? My derm directly biopsied my rash once a few years ago so obviously that didn't help (but it ruled out psoriasis.) Should I just go to a gastro? Is this enough info to diagnose without endoscopy or has everybody had endoscopy done even in the absence of GI symptoms? I'm already in the process of asking the local celiac email group if anyone can recommend a GI who understands about DH.

I realize I need to re-introduce gluten before testing is done; I had planned on that all along just to see if the rash came back, and will do so in a couple of weeks, probably.

[GlutenFreeManna]

So I went gluten-free April 23 to see if it helped my rash. After 2 weeks I was discouraged as it didn't seem better. Sometime between 2 and 4 weeks a huge improvement happened... the rash has been in the same location for months, maybe even a year or more (outer ankles) so it's hard to believe it's coincidence.

What do you recommend for next steps? My derm directly biopsied my rash once a few years ago so obviously that didn't help (but it ruled out psoriasis.) Should I just go to a gastro? Is this enough info to diagnose without endoscopy or has everybody had endoscopy done even in the absence of GI symptoms? I'm already in the process of asking the local celiac email group if anyone can recommend a GI who understands about DH.

I realize I need to re-introduce gluten before testing is done; I had planned on that all along just to see if the rash came back, and will do so in a couple of weeks, probably.

Wow you are really fornutate to see it gone in 5 weeks! My rash (I never had it tested so I don't know if it was DH) took several months to go away. I think you are goign to be hard pressed to find a GI dr that knows about DH unless they are a celiac disease specialist as well (maybe your celaic chapter person can help with that). Did you have any other symptoms besides the rash that lead you to go gluten free? If you did not have any GI symptoms you may find that you suddenly have them (or other neuro-based symptoms) once you add gluten back into your diet. Since you will have to add it in to see a dr for any future testing you could just try it again and see what happens. You will want to test by eating gluten for at least a week or until you have the rash return or other symptoms. Some people just have one piece of bread and they know right away. Some people have very delayed symptoms and must eat it for a week before they are sure.

[JenR]

Thanks for the ideas GFManna! No, I did not have any GI symptoms at all. I will be on the lookout for new symptoms when I re-introduce gluten (I didn't know that could happen!), and will be on it at least a week before I have any more testing.

[GlutenFreeManna]

Thanks for the ideas GFManna! No, I did not have any GI symptoms at all. I will be on the lookout for new symptoms when I re-introduce gluten (I didn't know that could happen!), and will be on it at least a week before I have any more testing.

Just so you know, for blood test and endoscopy with biopsy testing they reccommend at least 3 months of eating the equivalent of 3-4 slices of bread a day. So for those tests you would need to eat it longer than a week. I was just suggesting a week to give it a fair chance to come back--some people thinkt hey are fine when they eat one piece of bread and the symptoms don't return. It can sometimes take a while for the antibodies to build up again. However, if your rash comes back in a short amount of time you can go to a different dermatologist and ask for a biopsy of the skin next ot the legions to test for DH. If you get diagnosed with DH then you have celiac disease--the skin form of it. You won't necessarily need any more testing.

[JenR]

ahhh thanks for clarifying!! good to know! hopefully the local group can give me tips on a derm and/or GI ... am thinking of just going to the guy who is the head of Dermatology at our area medical school; his main interest is bullous diseases (blistering) - and DH falls into that category.

your signature says you were diagnosed via an elimination diet - did you have any other tests to confirm other than the IgE test this month?

[GlutenFreeManna]

ahhh thanks for clarifying!! good to know! hopefully the local group can give me tips on a derm and/or GI ... am thinking of just going to the guy who is the head of Dermatology at our area medical school; his main interest is bullous diseases (blistering) - and DH falls into that category.

your signature says you were diagnosed via an elimination diet - did you have any other tests to confirm other than the IgE test this month?

Unfortunately, no. My symptoms upon re-introducing gluten are so severe that I cannot eat it long enough for testing. I have unexplained seizures, fatigue, pain in my joints and muscles, muscle spasms, muscle weakness, shaking hands, brain fog, as well as the typical GI issues when I am on gluten. Prior to going gltuen free I did not have any bad GI issues, but I get them now if I have a little gluten by mistake.

The allergy testing is due a separate issue that came up--I started having anaphylactic reactions to milk. The allergist said might as well test all gluten grains since allergy testing does not require you to be eating something to get a positive test result. The wheat allergy makes sense since I also react to lotions with wheat-germ oil--I get hives if I use a product on my skin with wheat in it. Milk did not show up as an allergy but my dr advised me to avoid it since eatign it can put me in the hospital. Our bodies reactions can be more sensitive than the testing they use.

[itchy]

Everybody's situation is different. But here's my take.

I never needed to have an official diagnosis, once I was convinced it was DH. I have had various tests for celiac over the years, all of which just led the medical system away from celiac as a diagnosis when they turned up negative.

After two years I've had enough brushes with gluten to see the correlations between ingesting it, and the return of stinging rashes. Nothing short of having a gun put to my head would convince me to eat enough gluten to show up on a test. Besides, I enjoy the gluten free diet. Now if I could just avoid having my friends shower me with 'gluten free' substitutions when we eat together. ;-)

[JenR]

Our bodies reactions can be more sensitive than the testing they use.

Pretty amazing, huh?! I'm glad you were able to figure out your issues before you wound up irreversibly ill!

Itchy, LOL @ your friends.... you know they mean well!!

OK, another confusion/question - talking to a friend with celiac, she said that people with DH may have negative endoscopy but still have celiac & must be gluten-free. I thought endoscopy was the gold standard for diagnosis?? If I have a DH rash - i.e. got better with gluten elimination - and I re-introduce gluten after a short hiatus is it really likely to have a normal endoscopy?? Seems to me that if I have DH that responds to gluten/wheat ingestion - I have celiac and ultimately will have GI damage, even without symptoms. Is this right? Or is there a form of DH/celiac that is only manifested in the skin and not in the gut?

[ravenwoodglass]

Pretty amazing, huh?! I'm glad you were able to figure out your issues before you wound up irreversibly ill!

Itchy, LOL @ your friends.... you know they mean well!!

OK, another confusion/question - talking to a friend with celiac, she said that people with DH may have negative endoscopy but still have celiac & must be gluten-free. I thought endoscopy was the gold standard for diagnosis?? If I have a DH rash - i.e. got better with gluten elimination - and I re-introduce gluten after a short hiatus is it really likely to have a normal endoscopy?? Seems to me that if I have DH that responds to gluten/wheat ingestion - I have celiac and ultimately will have GI damage, even without symptoms. Is this right? Or is there a form of DH/celiac that is only manifested in the skin and not in the gut?

Your friend is right. You can have both negative blood tests and endoscopy with DH. However having DH is still a having a celiac diagnosis. You could do enough gluten to bring back the rash and then have a doctor familiar with DH do a biopsy. The biopsy needs to be done on intact skin next to the rash not on the rash itself and they need to be looking specifically for DH.

Just my opinion but since celiac can attack other organs like the brain and liver, for example, before you have significant gut damage I would just consider myself diagnosed if going back on gluten brings back the rash. That way you also avoid any 'preexisting condition' issues with insurance that you might have with an 'official' diagnosis.

You also should avoid iodine for a bit and be aware that it may take longer to clear the rash after you have reactived the antibodies on the gluten challenge.

[JenR]

Good info, thanks raven! The whole celiac/DH journey certainly does get curiouser & curiouser. I'm thinking I better get 2 different derm appointments close together so if one does the biopsy wrong, maybe the other will get it right. Yikes!!

[ravenwoodglass]

Good info, thanks raven! The whole celiac/DH journey certainly does get curiouser & curiouser. I'm thinking I better get 2 different derm appointments close together so if one does the biopsy wrong, maybe the other will get it right. Yikes!!

This may help a bit. Do be aware that there can be some false negatives in the biopsy like with all celiac testing and that although usually the lesions are bilateral they aren't always.

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My lesions also resolved pretty quickly after I went gluten free and deleted iodine but it would take very little to bring them back for the first couple years. I also avoid gluten in all topicals. Now that the antibodies have left my skin when glutened I only get one or two little blisters whereas I used to be covered in lesions even on my scalp and face.

[Korwyn]

Hi Jen,

Also I didn't see if anyone mentioned this but you said the dermatologist directly biopsied the rash. That may be a reason for a false negative. If they aren't familiar with DH (as raven mentioned find one who is) then they may not have known that they should take the biopsy from the edge next to the lesion, not from within.

[JenR]

Also I didn't see if anyone mentioned this but you said the dermatologist directly biopsied the rash. That may be a reason for a false negative. If they aren't familiar with DH (as raven mentioned find one who is) then they may not have known that they should take the biopsy from the edge next to the lesion, not from within.

Yeah.... I know. At the time the lead candidate for the rash was psoriasis (I have chronic back/pelvic pain that seems to be an inflammatory condition called spondylitis - one form of spondylitis involves psoriasis.) So that is why he biopsied directly, and just had me do the anti-tTG blood test. He does know about DH and if I wind up going back to him I don't mind being blunt about where he needs to do the biopsy! But I think I will go to another derm who comes recommended by someone I met through the local celiac email group - she also presented only with DH, not GI symptoms, and this doc diagnosed her accurately. Thanks for the advice!

[Korwyn]

My Dad had life-long "psoriasis". It cleared up permanently within a couple months going gluten free after his diagnosis. I think now it was probably DH.