With hands like these I'm suspicious (Pictures)

[stuperprohero]

I'm 51 yrs old. Last summer I had an odd breakout on my hands that didn't look quite like these photos. My hands itched and had a lot of bumps that didn't resemble the typical small blisters. Almost like alligator skin in some spots. Regardless it was new and uncomfortable. I've had eczema most of my life but never anything on my hands. Mostly just the scab like itchy patches on my legs and forearms and occasionally on my torso. With the hand outbreak came eczema patches on my buttocks, more severe on the back, and on the backs of my arms.

Anyway, we were about to go on a week vacation for the 4th of July and my hands bothered me pretty bad so I went to a walk in clinic since the vacation was going to be a week of motorcycle riding and holding onto handlebars all week. The doctor had no clue what it was but prescribed prednisone tablets. After a few days my hands cleared up fairly decent just in time to leave for vacation. I took all the medicine and ran out about halfway through vacation. By the time vacation was over I could tell it was going to come back on my hands. It did. Meanwhile the doctor suggested a new dermatologist in town who was supposed to be really good. Eventually I made an appointment but had a lengthy wait. In the meantime I did a lot of internet research and felt like maybe gluten was the issue. Two days before going to the dermatologist I decided to try and go gluten free.

I didn't say anything to the dermatologist about gluten and when she looked at everything she said "I think you may have a gluten sensitivity so we'll take some biopsies." BINGO! So I thought. A week later the biopsies came back negative. I was shocked and told her I didn't understand. She said that I had an allergy to something but also that she has had patients test negative then test positive a couple months later. I decided I wasn't going back because she gave me the standard switch laundry soaps, fabric softeners, etc. Nothing really about diet. I felt like she gave up that easy.

Over the course of the week it took to get the biopsy results I stayed mostly gluten free and saw some improvements. Which could also be contributed to the strong steroid ointment she prescribed. It seemed like I was clearing up and then I'd have a McMuffin or something then my hands would break out a few days later. But still they would stay broken out for so long I couldn't be sure it was the gluten. Just recently I had them almost cleared up, have not been using the steroid cream, and one evening we had to eat at McDonalds and I had the chicken tenders (you know, with lots of breading on them). That was two weeks ago and my hands went into this crazy outbreak that you see in the pictures several days after eating them. Since then I've stayed as gluten free as possible (still learning about hidden gluten) and they seem to be taking a long time to clear back up and itching along the way. Surprisingly some colon issues and itchy booty cleared up since i went gluten free!

As long as it seems to be taking for my hands to heal I wonder if it really is gluten but then again does it really take that long to get out of your system? It's hard to stay absolutely gluten free long enough to find out.

Also I remember my senior year in high school my feet broke out, cracked open, and bled. The doctor said I had a caffeine allergy. So I got off the soda and it cleared up in a couple weeks. A year or so later I resumed soda and developed a Dr. Pepper habit that I have to this day but never had any reactions to it. But for some reason i don't feel like this is caffeine related because when i cut out the gluten for a short while and saw improvement, I was still drinking Dr. Pepper regularly.

The problem is it takes so long for my hands to heal that it's hard to stay off the gluten just to see. Does it really take a long time to heal? Am I on the right track by gauging how broke out my hands are? Granted they look much better now than in these photos.

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[ravenwoodglass]

Welcome. When the doctor did the biopsies were they taken from intact skin next to an active lesion not of the lesion itself? Taking the biopsy from the lesion will cause a false negative as can being on steroids. I don't know how long it would be before the false negative from steroids would wear off. Did any of the doctors run a full celiac panel? If not that would be a good idea but you need to be on gluten or that will be a false negative.  For folks who have DH the need to be very strict on the diet is crucial.  If it is DH that can take a long time to heal even when strict on the diet.  I do hope you get some answers soon.

[stuperprohero]

4 hours ago, ravenwoodglass said:

Welcome. When the doctor did the biopsies were they taken from intact skin next to an active lesion not of the lesion itself? Taking the biopsy from the lesion will cause a false negative as can being on steroids. I don't know how long it would be before the false negative from steroids would wear off. Did any of the doctors run a full celiac panel? If not that would be a good idea but you need to be on gluten or that will be a false negative.  For folks who have DH the need to be very strict on the diet is crucial.  If it is DH that can take a long time to heal even when strict on the diet.  I do hope you get some answers soon.

She did ask about how long it had been since the steroids and determined enough time had passed. She also talked about how the two biopsies on my back would need stitches and that she was taking the specimen from next to the lesions. There was also a lesion on my knee she thought looked different so she shaved a specimen there with a razor blade. No full celiac panel was taken/ran.

I gave up in her after she suggested switching soaps, etc. I've had eczema most of my life so obviously there has always been soap and detergent scrutiny.

I guess I'm struggling with why my hands are taking so long to heal. Think it would be a good idea to try and heal completely, then gluten myself for a weekend and see if there's a breakout to confirm? That's what I've been trying to do but it seems when they are making healing progress i gluten myself. I need to get more strict and educate myself on hidden gluten. Like i wasn't awsre soy sauce was a source and thought i was being good.

Thank you for all the advice.

[sstar]

Hi, I'm in limbo like you. But had a similar outbreak on my hands, tiny little itchy blisters! after a ton of googling I found out it looked exactly like this picture I found- dyshidrotic eczema 

it was all over my ring fingers and pinky fingers. I only had this breakout after I was gluten-free for about 2 months, then started eating gluten again. It was a definite correlation. I cut out gluten again.. then after a few more weeks I reintroduced it into my diet and now my nails are nearly falling off. After a lot more time spent looking through google pictures, it is absolutely psoriasis. Which is another auto immune disease linked to celiac. If you google pictures of psoriasis on hands, is it very similar to what you have? I definitely think they are linked, and it is best to avoid gluten if your body responds this way.

[ZobGuyn]

I would encourage you to not give up on the dermatologist.  From what you said, she sound open to the idea that the biopsies could be false-negatives.  Also, she made a preliminary diagnosis by just looking at the rash.  Seems to me like she knows a lot about celiac disease.  Many physicians are not nearly as open to celiac disease as she seems to be. Disclaimer: I'm an ob/gyn, so I may be defending your physician too much :-).  As a doctor, it's frustrating when patients don't follow up.  Often we have a plan in mind (maybe we don't always communicate it clearly).  I'd imagine she may be planning to get blood testing for celiac disease.  But again, she really seems knowledgable about things.

[stuperprohero]

On 1/30/2018 at 7:12 PM, ZobGuyn said:

I would encourage you to not give up on the dermatologist.  From what you said, she sound open to the idea that the biopsies could be false-negatives.  Also, she made a preliminary diagnosis by just looking at the rash.  Seems to me like she knows a lot about celiac disease.  Many physicians are not nearly as open to celiac disease as she seems to be. Disclaimer: I'm an ob/gyn, so I may be defending your physician too much :-).  As a doctor, it's frustrating when patients don't follow up.  Often we have a plan in mind (maybe we don't always communicate it clearly).  I'd imagine she may be planning to get blood testing for celiac disease.  But again, she really seems knowledgable about things.

She's actually a dermatologist but was an MD for several years prior to getting into dermatology. And she does seem knowledgeable in celiac. Can't really afford another trip to see her at the moment.

My girlfriend(who has no medical background) seems to think the whole gluten thing is all in my head. And she thinks people don't just suddenly become allergic to wheat. I said well my step dad never had any issues and suddenly he rapidly breaks out in hives every time he eats tomato products. 

So i told her I'll go on a gluten binge and we'll see what happens! Currently my hands look good compared to the pictures above. She also had no logical response to why since i mostly eliminated gluten, i no longer have itchy booty or the heavy lower colon feeling.

I feel like i have been very limited on gluten intake which makes it hard for her and i to understand why my hands take so long to heal. But i also reminded her I'm just now learning about hidden sources. Like the soups in the work cafeteria. She thinks I'm looking for something to blame for it and gluten sensitivity is an easy pick.

So, I'm having biscuits and gravy for breakfast and maybe a delicious glutenful pizza for supper. Then continue through the weekend eating delicious glutenful foods and see what happens. My hands aren't fully healed but we'll see how bad they get.

 

[Jaemac]

You should realize that if it is gluten doing this, what you see on your hands is actually also happening inside your body. And OF COURSE you can just "come down" with a problem, all of a sudden. Just like getting cancer or the flu or anything else, it happens and then you're sick. Your girlfriend may be afraid that it'll affect the way she eats and it's easier to poo-poo what you're thinking than embrace that her beloved it ill, possibly quite ill with a non curable autoimmune disease. I have that same thing on my hands, so does my mom, I'm not as severe as yours but my mom had been, on her feet and hands and elbows. 

I'm not officially diagnosed either as I can't afford the genetic test and went gluten free before getting tested. I figured it out after 41 years of being sick with "something" that seemed to change and migrate all over my body. I've had so many of the symptoms that it's not funny but I'm quite overweight so no doctor thought celiac. I actually read a case just a year ago that sounded exactly like my mom, everything she'd experienced but never had a diagnosis that all went together. That woman at 70 was officially diagnosed, my mom is 73. Her symptoms are quite different but seeing someone else with the 15 or so symptoms makes me believe she has celiac too. 

It takes months for my hands to heal. I think of it as a broken typewriter. My body types out my skin about two weeks before I need it, deep inside the dermis. If I gluten myself, it causes my typewriter to skip letters which is where I get blisters. It's an easier way of thinking of it, and it takes sometimes up to two weeks to show up after a glutening. Then a month or so for my body to get those typewriter keys fixed, lol. Remember, only a little crumb of gluten can keep celiac going and dermatitis hepaformitis  IS the skin form of celiac.

The best bet is to keep eating lots of gluten for as short a time as it takes to get a test for celiac. Then STOP. Also, just because you get a negative on any celiac test doesn't mean you don't have it or that you do have NCGS (non celiac gluten sensitivity) which has the same symptoms as celiac but isn't an autoimmune disease. Same treatment, NO GLUTEN. If gluten is hurting you, it can hurt other parts of your body too. DOn't play with fire. After all those years with celiac (my symptoms go back to infancy), I now have cancer. I think if someone had thought to test me years ago, I may not have ravaged my body to the point it couldn't fight anymore. Good luck. Oh, and if your girlfriend thought something was making her as sick as you are, would you talk down her doing anything to get better? She really should change her attitude, you deserve to be heard.