Too Fat For Dh?

[trmatt]

For about 4 years, I've had a rash that appears occasionally. The first occurrence was very short lived, and was only on my shins. Now it's appearing every few months. The current breakout started on my shins, and it's worst there, but I also have a few blisters on both elbows/forearms and both knees. My back and scalp also itch like crazy. It finally bothered me enough this time to visit the dermatologist, and he told me it's eczema, and prescribed a steroid cream. I asked him if he thought there was a chance it might be DH. He said no, because if I had DH I would also be having gastric issues, and he pointed out that it doesn't look like I'm having any malabsorption issues.  He also said DH is a blistering disease. I told him that my sores start out as small blisters, but that I inevitably scratch them open. He clarified that the blisters would be larger with DH, and that I would also have them on my buttocks and hairline. 

 

I'm not going to spend time arguing with a doctor about whether fatties can have DH, because I know they can. This dermatologist is actually VERY well respected in my area, and in the past he quickly diagnosed and treated dishydrotic eczema that was making me miserable. I'm wondering if I should ask him to do a biopsy, or find someone else who hasn't already made up their mind that it's not DH. Anyone have a rec for a dermatologist in the Houston area? I'm not positive that it is DH, but I'm not ready to rule it out without a test. I have a hunch that is is autoimmune related. I have Hashimoto's thyroiditis, and I understand that may cause rashes on its own, and that there is also a high rate people with DH who also have Hashi's. 

 

I just read last night that topical steroids can cause a false positive with the punch biopsy, and unfortunately I've already been treating with a fairly potent steroid cream. I suppose the biopsy could be taken from any new areas that crop up if I avoid using the steroid cream there?

 

Here are some photos from this morning. The inflammation has gone down a bit over the past few days.

 

 

 

[squirmingitch]

Oh boy! You have them on your elbows & knees & now he's not satisfied but wants them to also be on your buttocks & hairline. What an ass! If I had a nickel for every time someone said their derm said it couldn't be dh b/c it was NOT on their elbows & knees I would be a very wealthy woman. Find a new derm. Check out this link -- there is a derm listed there, Sylvia Hsu, M.D., Dermatologist, Baylor College of Medicine. http://www.houstonceliacs.org

Yes, I would say the biopsy could be taken from anywhere a new crop pops up where you haven't been using the cream.

It looks like you've been doing your research & you know the things you should know. Keep eating gluten if you want a dyed in the wool dx. Also, you could go to your primary care doc & ask for a full celiac panel -- google on the site & you will come up with the proper, full, current panel. You know there's a 60% chance you'll come up negative but maybe you'll be one of the lucky ones who comes positive on the bloods. 

Of course overweight people can have celiac -- just ask half or maybe more of the people who are dx'd on this site.

And the idiot derm you went to doesn't know that  a whole lot of us with dh have fewer, milder gi issues. Still shaking my head over that ass. 

Your hashi's is right in line with celiac. 

Get tested. 

Pleas let us know what happens & if the derm you see knows their stuff please come back & post their info. in the Doctors forum here:

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

so others can access a good derm in Houston in future.

[nvsmom]

Listen to Squirmingitch - she is our resident expert.  She really knows her dh stuff!

 

I don't know as much so I'll just wish you luck on finding answers fast.... and welcome to the board.  

[trmatt]

Thanks for the rec, squirmingitch! I had actually come across Dr. Hsu's name because she co-authored a study about distinguishing DH from other autoimmune rashes, so I was hoping she could tell me what it is even if it isn't DH. I'll see if I can get an appointment, and will report back on my results. 

 

Several years ago my endocrinologist's office let me know that some of the autoimmune tests they ran indicated a possibility for celiac, so I went to a GI specialist for more testing. He ran additional labwork (no biopsy) and told me there was no possibility I had celiac, so I hadn't given it much more thought until these blisters came back with a vengeance this time.

[squirmingitch]

You're welcome! I wish I could find references to derms like that all the time -- just got lucky that the Houston chapter had that on their website. 

 

Do you know what labs the GI did? You've probably done enough research by now to know that half the time (or more) GI's don't even know what the full celiac blood panel consists of. I'm betting he didn't do the complete blood workup. Even if he did celiac can present at any time in life. it might not be here 1 year & then it is the next. And it's possible he did do the right blood work but you're 1 of the 60% who test false negative on it b/c the dh was sitting under there waiting to rear it's ugly head.

 

DO try NOT to scratch before you go see the derm. The patterning the lab will be looking for is VERY easily destroyed by scratching. If you have to put multiple layers of padding over that area to keep from scratching it then do so. Also if you can catch any blisters on camera (I know, hard when they're small) so you can show her then that would be good too.

[Nolev]

I have DH. I am overweight. I have celiac and zero gastro issues or pain. In fact my (4) skin biopsies all came up negative for DH and most celiac tests too. I'm also IgA deficient and this impacts the skin biopsy and IgA related celiac blood tests. I finally scored positive on a TTG-IgG celiac blood test and then had an endoscopy which showed no villous damage (makes sense given no gastro issues) but showed increased IELs (intraepthilial lymphocytes) which the GI said was indicative of celiac combined with the TTG-IgG test. High IELs can lead to lymphoma. My FOURTH dermatologist finally agreed it must be DH. Now I'm 6 months strictly gluten-free and only at the early stages of healing (it takes a long time) but clearly this is what it is: celiac and DH.

Keep pushing. Keep going to different doctors. Until you have a diagnosis that makes sense.

Good luck. )oh and I'm losing weight nicely now too - bonus :-) )

[Courtnay1]

listen to yourself

 

i recently read an article that stated excema could be related

 

to allergens, which could be in your food

 

 

Also today i was listening to how

 

gmo foods can cause many reactions

 

 

If you can , buy organic produce especially kale and spinach

[Oniffaz]

Well...I'm no dermatologist  - I didnt need to read your story - one look at the pics and its the same as the rest of us.  Take Squirmingitch's advice and find another doc.  Let's talk about the being heavy and DH.      About age 5, I started really growing and by hs graduation - I was a healthy 250 pounds (5'6").  I ran, I played sports and as I grew - was the oldest but the smallest of my siblings.  I had 4 babies and gained and kept more weight with each one.  By 2006 I was sitting just under 370 pounds.  In 2007 I had RNY gastric bypass - not knowing I had DH or was genetically predisposed to Celiac.  At that time - they did not test for Celiac pre bypass testing.  Since 2012 they do, however, there is no test for DH.

Let me dispell your docs advice....#1 DH blisters can be ANY size from a pin prick to bigger than a half dollar and I have pics of both and in between.  #2 DH is another GSE - it is NOT Celiac and people can have either without the other.  Meaning - you can have DH but NOT Celiac and there is no test for DH unless you are flaring.

Back to being big and DH....It took me 18 months to shed 235 pounds.  I went from a womens size 36W and now I wear a size 6.  I have maintained my weight loss for 10 1/2 years - but I am not happy and I am miserable with the DH....let me continue.  In 2009 I had 15 pounds of skin removed from various areas of my body - it may not sound like a lot but skin without the fat.  It was an organ donation to a burn hospital and my give back from my bypass.

As I lost my weight during that time, I discovered that bread HURT.  It literally hurt when I ate anything.  I would nibble and it would hurt.  Eventually I learned if I burnt the toast to unrecognizable - I could eat 1/4 of a slice and be ok - but no taste.  Crackers were hit and miss and I found a love for baked pita chips that did not seem to bother me.    During this time my primary doc was treating and testing me every other month for C-Diff as she couldnt explain the diarrhea.  She just told me it was from stress and being too active.  She said that alot.   I know now it was the celiac.   I do have both.

In Jan 2016 I moved from NE to Florida and so my hell began there and then.  The DH came like a fury - but I had no idea.  None.  I weigh 140 now and fit...but the rashes.  We tried everything.  By the 2nd month in Florida I was knocking myself out with benedryl and waking to a trip to the ER for stitches...more times than Id like to write here.   Every hospital visit was the same...hmmm..not sure but most likely Shingles and so I bought into it.  I had over 29 flares in a year while in Florida and it never really went away.  

In Jan 2017 I moved from Florida to the Desert (Arizona) and almost immediately it all stopped! Every spot immediately dried up and not an itch anywhere!     In August of last year - I started a cleanse as I was feeling so good.  Better than I had in almost 2 years!  Within 3 days of the cleanse - it was back with a vengeance like I have never experienced.  The blisters were coming out in circles.  It looked like I had bite marks on both shoulders - bilateral.  Most of mine are bilateral.  Meaning if I get one on my left elbow in a certain spot within a day or two there is an identical one on my right elbow in that same spot.  This adds to my anxiety.  If I'm flaring hard with one area..and it finally relieves, I brace as I know its going to flare on the other side soon  even now.

I went to the leading derma in Southern Arizona for DH and he tried to sell me his $200 a jar cream.  He is coasting to retirement.  I visited two more Derma - one took biopsies - in the wrong places (they cannot biopsy the actual sore - the toxins are gone there - they have to biopsy in the area  or get an unscratched blister - for the light study to be accurate). And the third lost the sample!  The only drug is very very hard on the system and my anemia wont support it anyway.    

As I got worse last fall, I gained  a pretty decent idea of what this is - with each breakout - I would remember times as a bigger person with those exact same rashes.  My scalp  and left side of my neck in particular.   As I have become more knowledgeable  I know I have had this my whole life and spending most of my life > 365 pounds and now the last 10+ years at 145 - the condition seems to be worse.

Since my bypass I had reduced my gluten consumption to almost nothing without really knowing.  Today I am miserable again.   It had taken me almost 10 months to clear the last of the flares from the fall last year.  In those 10 months, I have had such an education and meeting folks like on this thread - still seeking a decent doc - and honestly thought I had it under control.    Two weeks ago - it resurfaced like a fury.  Both elbows, both ankles, both knees, both shoulders and my upper back.  I went from 6 - to over  200 of them in the past  week and I'm not sleeping and I'm burning and itching and a mess.   Ice packs are my only friend these days.   Guess what I learned...sustained, hot, moist, humid weather makes it worse.  We have monsoon season here in Arizona and its when it broke out for me last August - it coincided with the cleanse - but I know now it was the weather - the climate.  

I am adding this on the end for a reason.  As a big woman - hot, sticky, weather is awful...the rashes between the legs and under breasts and tummy are so painful and  itchy.   Looking back  - I can't say if it was heat rash or DH?   What I can say is...follow you instincts - keep educating yourself - listen to your body.     Modern medicine is part guess too - work with a doc you trust to find what works for you.  Double check your information - not all sources are accurate either.  I hope my story helped you.