Diagnosed With Gluten Rash By 3 Doctors Without Biopsy But Bloodwork, Endoscopy All Normal 3 Years Ago

[karen1959]

Hello, I am 55 female diagnosed with lichen sclerosus which is also on my legs and mid section.  Since that diagnosis I have also been diagnosed by my doctor and her physician's assistant as having gluten rash and was told to NEVER eat gluten again.  My dermatologist that I go to for the lichen sclerosus also told me to never eat it again.  Three years ago I had an endoscopy and blood test for Celiac which came back negative.  my rashes that aren't the lichen sclerosus are indeed blisters that itch on both sides of body, mostly on shoulders and upper arms, back of scalp/hairline and mid/lower back, sometimes fingers and here and there.  They do scab over quickly, are tiny and itch mostly before actually becoming blisters and then scar a light brown color.  Is it possible I have dermatitis herpetiformis when three years ago my bloodwork *iga* was negative and my endoscopy was normal.  Unlike most people, I am hoping to be diagnosed wrong....whereas it seems everybody else is wanting and looking for a diagnosis of celiac/dermatitis herpetiformis and their doctors won't give it.  Thank-you!

[ravenwoodglass]

Did they test your total IGA? What other celiac tests were run, if any. It wouldn't hurt to have those panels rerun. That said there are folks who have DH that do come back with a false negatives on testing.

Have they ever done a DH biopsy? They would biopsy intact skin next to an active lesion. I don't know if you are presently gluten free but if you are you need to get back to eating gluten for the biopsy. 

[karen1959]

No tests since 3 years ago when I came up negative for Celiac via. a blood test and endoscopy.  I was diagnosed from my doctor and her physician's assistant just seeing the rash who both said no biopsy was necessary since it was classic gluten rash.  THen at my dermatology visits for the Lichen Sclerosus she even said it was gluten causing the other blister-rashes on my body and that I should never eat gluten again and no testing was necessary.  She also said the Lichen Sclerosus would improve when I went off gluten.  As well as my alopecia and Rosacea.  I just found it strange that the doctors all laughed off the fact that I wanted some sort of proof that it was gluten causing my itchy rash.  Its a big deal to give up gluten if unnecessary.  In a nutshell I wondered if gluten-rash could be diagnosed with visual inspection and symptoms alone.  Thank-you

[cyclinglady]

If you went gluten free, did the rash go away? Return with even the smallest amount of gluten?

[etbtbfs]

What matters are your symptoms! Do they go away if you stay off gluten for a while?

[cahill]

My ( limited ) understanding of lichen sclerosus is  autoimmune with  a possible connection to thyroid disease where  as Dermatitis Herpetiformis ( DH) is an autoimmune disease associated with celiac disease .

 

It would be possible to have both lichen sclerosus and dermatitis herpetifomis at the same time

 

And yes it is very possible to have DH ( celics) with a neg blood work and endoscopy

[bartfull]

I'm assuming this advice from your doctors was recent? If so you haven't been off gluten long enough to see a change. I suggest you read first, the Newbie 101 thread in the coping section. Then go over to the DH section and read read read.

 

You may think a gluten-free diet is a terrible prescription right now, but believe me, you don't want your DH to get worse, and you don't want any other symptoms of celiac to crop up either. And as difficult as it may seem right now, I promise, it becomes really really easy after a while.

 

There are SO many gluten-free choices in most grocery stores now! Yeah, some of them are expensive, but remember, whole foods like meat, veggies, and fruit are naturally gluten-free. A lot of the snacks you may enjoy are gluten-free too - Lay's potato chips, Planter's nuts, most ice creams, the list goes on and on.

 

Basically, pasta, bread, cookies and cakes, are the only things I eat that I have to get gluten-free substitutes for. Udi's multi-grain or Canyon Bakehouse Seven Grain are great bread choices. Betty Crocker (and others) make gluten-free cake mixes. There are tons of cookies and crackers out there that are gluten-free. And Tinkyada makes a pasta that taste pretty much the same as regular pasta.

 

After you've read the newbie page and a bunch of DH stuff, go check out the recipe section and the What's for Dinner thread. We eat WELL! And besides just becoming healthier from managing our celiac, we eat a healthier diet in general.

 

Yes, you are lucky to have doctors who know enough about DH to diagnose you based on symptoms alone. If you feel you MUST have a DH biopsy to be sure you need to be eating gluten. But if it were me, I would accept their diagnosis and go gluten-free. You will see a huge difference and probably discover that you had other symptoms that you didn't even know were symptoms.

 

For myself, my digestive symptoms were mild. It was my psoriasis that was terrible. It's gone now. The bonuses were losing things like the insomnia that had troubled me all my life, the rather frequent headaches that I no longer get, the hiccups I used to get a lot, the swelling legs and feet, the reduction in my asthma attacks, the clearer thinking, the boosted energy, oh and so many more things I've forgotten now. I just plain feel GOOD.

 

And you will too.

[squirmingitch]

I am curious to know why you were given the celiac blood panel & endoscopy 3 years ago. What led anyone & whom to suspect you had celiac disease? 

You should get copies of the lab results of both the blood & endoscopy & if you would please post them here. We have people who are very experienced in reading those. It's possible you were not given the complete blood panel -- it happens all too often. Also, on the endoscopy they may not have taken a proper # of samples -- that happens all too often too. At the time of the bloods & endoscopy had you been on oral steroids or received a shot of steroids within the 2 months preceding? If so, that can make the tests give a false negative. Lastly, there is the factor that those of us with dh test negative on the celiac blood panel 60% of the time. We also have a lot of negatives on the endoscopy. So to answer your original question ~~~ it is entirely possible to test negative on both blood & endoscopy and still have dh. Just about the only way to have a definitive "official" "doctorified" never doubt it dx of dh is to have a positive dh biopsy. As Bartful stated; you would have to be eating gluten for 2 months prior to the biopsy. If you really feel you need to do that to remain strict on a gluten free diet then you need to convey such to your derm & insist he/she do a dh biopsy. Make sure it's done on clear skin adjacent to an active, fresh lesion. 

 

I will warn you though that if you have dh then every time you eat gluten you put more & more antibodies under your skin which is what causes the dh. It can go haywire at anytime. Just because it's not making you insane at present doesn't mean it won't flare up tomorrow or the next day in the mother of all outbreaks that makes you want to take a fillet knife & peel all your skin off. I'm not trying to scare you -- just giving you the flat out truth so you will have the information you need to make an informed decision. DH can & does come & go at will whether eating gluten or not. Once you quit eating gluten it can still come & go or it can set in & remain until all the antibodies have worked their way out of your skin. For some people it only takes a few weeks to a few months before they are free of the rash. For some, it can take years.

[karen1959]

Thanks for all of the time and advise with the answers to my questions.  I had the endoscopy 3 years ago because my doctor suspected Celiac due to gastro problems.  I had no rash back then and my tests were negative.  Now the doctors say I have gluten rash and never eat it again based on my rash of blisters, itch, scars etc.  I am off gluten and feeling better but the rash is still showing up, although less.  I just would have liked to have proof of it being a gluten rash but I guess the doctors know more than I do!  I did have vitamin deficiencies and elevated liver enzymes at my recent physical.  I guess that and the rash was enough.  Time will tell.  Since going gluten free my rosacea is all but gone as well as all hot flashes!!  Now if these blisters would just start disappearing. 

[bartfull]

Iodine will makethe rash worse. That means iodized salt, potatoes, egg yolks, lots of things. Read up about it in the DH section.

[ravenwoodglass]

Iodine will makethe rash worse. That means iodized salt, potatoes, egg yolks, lots of things. Read up about it in the DH section.

I only had to drop the iodized salt and made sure it wasn't in my vitamins and I healed pretty quickly. Some may need to go to extremes but not everyone has to drop stuff like potatoes, egg yolks and fish etc. 

[Lobstah]

Thanks for all of the time and advise with the answers to my questions.  I had the endoscopy 3 years ago because my doctor suspected Celiac due to gastro problems.  I had no rash back then and my tests were negative.  Now the doctors say I have gluten rash and never eat it again based on my rash of blisters, itch, scars etc.  I am off gluten and feeling better but the rash is still showing up, although less.  I just would have liked to have proof of it being a gluten rash but I guess the doctors know more than I do!  I did have vitamin deficiencies and elevated liver enzymes at my recent physical.  I guess that and the rash was enough.  Time will tell.  Since going gluten free my rosacea is all but gone as well as all hot flashes!!  Now if these blisters would just start disappearing. 

 

Karen,

It can take some time for the rash to disappear.  Also beware of any possibility of cross-contamination, which is a very real possibility, and will prolong the rash.

It's at best very difficult to be gluten free if you ever eat anything outside of your own kitchen.  Even places that offer gluten-free choices may or may not be aware of the cross contamination issues.  Example: Oh look Jim, they have chicken wings, and they're not breaded!...you can have those!...well, no, I can't, because they're cooked in the same fryer/oil that the other BREADED chicken thingies are, and the frying process doesn't get the oil hot enough to destroy the gluten. AND...unless you bring me the container of blue cheese dressing you serve on the side, along with whatever buffalo sauce you're using, I have no way of knowing what may or may not be gluten free.   I think for eating out, P.F. Changs is supposed to be one of the most allergy-aware chains out there, to the point where they serve their gluten-free choices on specially marked dishes so people at the table will know NOT to mix serving utensils.

In short, this ain't no picnic to follow, but it can be done.  I'm fortunate because my wife makes the likes of Maggie Thatcher look like Sister Teresa when it comes to my food...and she'll grill friends, neighbors, and restaurant wait-staff like you wouldn't believe.

Many places cater to the gluten-free "fad" side of the diet...those that just "feel better" with no gluten.  There are a few brick oven pizza places near us that have gluten-free pizza.  Well...No, you don't.  You prepare it on the same surfaces that you use for normal pizza.  You don't have a separate prep area w/utensils, pans, etc.  It would be much better for us actual CDers if those people just used the term "Non-wheat pizza", which is vastly different.  In short, gluten-free rarely is, unless you are at a restaurant that specializes in it.  We have a place nearby that is completely gluten free, period.  It's all they serve, and the woman that owns it won't even allow  her daughter, who works there, to bring in a sandwich from home for lunch.

I know I'd get bombed MANY more times than I do without the help of Dear Wife.

[MomBTired]

My kiddo has DH and was diagnosed with Celiac when that biopsy came back positive, then the bloodwork and scope were done to confirm. They were all positive. My son has a lot of gastro issues and has many scopes over the years. Every single one was negative until the DH showed up

[wildwood]

My ( limited ) understanding of lichen sclerosus is  autoimmune with  a possible connection to thyroid disease where  as Dermatitis Herpetiformis ( DH) is an autoimmune disease associated with celiac disease .

 

It would be possible to have both lichen sclerosus and dermatitis herpetifomis at the same time

 

And yes it is very possible to have DH ( celics) with a neg blood work and endoscopy

I am curious where you found the information that lichen sclerosus is connected to thyroid disease.  I have lichen sclerosus and my thyroid tests have all been normal and all of my problems are skin and joint related.   When I gave up gluten, my lichen sclerosus went into remission over time, I no longer get rashes, and my joints no longer feel stiff when I wake up in the morning.  I want to make sure I keep up on my health so I am interested in any relation between lichen sclerosus and thyroid since my thyroid has been tested to be normal.  Thanks.

[karen1959]

Cahil, I have a healthy, normal thyroid as well.  My "lichen sclerosus" extragenital lesions are on my upper legs, and waist area and are starting to disappear with my serious adherence to a gluten-free diet.  I personally think the gluten and the lichen are related, for me anyway.  My lichen rash looks nothing like my "gluten rash".  Tbe gluten rash is on my shoulders and upper back, back of scalp, area between elbows and wrists, upper arms and itches like crazy.  Both of my doctors basically laughed it off when I wanted proof of the gluten rash.  Also neither my regular doctor or my dermatologist ever once called it dermatitis herpetiformis but they both said after I am totally gluten free that the gluten rash s well as the lichen problems would improve and they were right.  I still hate it that there was no biopsy/proof on the gluten rash or the lichen one.  I would hate to be on this life-long diet for the rest of my life unnecessarily.  Also I don't like not knowing if it is a gluten rash or actual dermatitis herpetiformis because now I don't know if I have celiac disease or not.

[ravenwoodglass]

Cahil, I have a healthy, normal thyroid as well.  My "lichen sclerosus" extragenital lesions are on my upper legs, and waist area and are starting to disappear with my serious adherence to a gluten-free diet.  I personally think the gluten and the lichen are related, for me anyway.  My lichen rash looks nothing like my "gluten rash".  Tbe gluten rash is on my shoulders and upper back, back of scalp, area between elbows and wrists, upper arms and itches like crazy.  Both of my doctors basically laughed it off when I wanted proof of the gluten rash.  Also neither my regular doctor or my dermatologist ever once called it dermatitis herpetiformis but they both said after I am totally gluten free that the gluten rash s well as the lichen problems would improve and they were right.  I still hate it that there was no biopsy/proof on the gluten rash or the lichen one.  I would hate to be on this life-long diet for the rest of my life unnecessarily.  Also I don't like not knowing if it is a gluten rash or actual dermatitis herpetiformis because now I don't know if I have celiac disease or not.

If your rash is a 'gluten rash' itches like crazy and leaves scars then resolves on the diet you have DH. If you have DH you have celiac.  DH can have a lot of false negatives with testing for a variety of reasons which may be why your doctors went with the best test. Resolution of the problem gluten free. 

[squirmingitch]

If your rash is a 'gluten rash' itches like crazy and leaves scars then resolves on the diet you have DH. If you have DH you have celiac.  DH can have a lot of false negatives with testing for a variety of reasons which may be why your doctors went with the best test. Resolution of the problem gluten free. 

AMEN.