Need Dh Help

[indianaharlegirl]

I am 49 female and I think I am about to lose my mind. Have had GI symptoms for several months, nausea and stomach pain after eating and constant diarrhea for no good reason. Recently dx with type 2 diabetes and controlling with diet and A!C down significantly since dx due to change to diabetic diet and then I get this recurring rash which I had exactly a year ago and I have patches of blisters on my knee foot, face, ankle and several fingers and toes and it itches like crazy and the pictures on the internet of DH look exactly like what I have except mine is less severe but it is spreading. My face feels sunburnt and under my eyes are all red and puffy and my eyelids are swelling. Even my ears feel red and hot and I have patches of red in my eyebrows even. My nose is also completely red and I have several lesions on my face.

 

Made apt with family dr but not the one I normally go to bc he was out into March and I can't wait or handle this itching until then. The one I am seeing is a little jerk but of course had availability and I have dx myself anyway. With all those symptoms I am pretty sure I have celiac. Question is if he won't order blood work or biopsy of skin I will have to go see a specialist and from all the reading U of C in Chicago has a great department for this and it is an hour from where I live in Indiana so I can go there. I figure tho it will take several weeks to get in there so in the meantime what do iI do. If I go gluten-free now and/or convince Dr. Jerk to give to Dapone will my test results be inaccurate or falsely negative bc I have been gluten-free and taking the medication for a while? I want an accurate dx and I just have to ask this Dr. Jerk to do what I want and hope I can get in fast at UC

 

So questions is what to do before get to UC and Is UC as good as it appears to be from my reading. If Dr. Jerk won't give me any blood work orders, biopsy or even Dapone what else can I do to combat the rash but also have correct results and UC? Any help is appreciated. I am so upset and can't work like this and well you all know the story, I will lose my business and my house and everything. PLEASE HELP I NEED ADVICE!! Thanks. Crystal. The main thing I need is just for this itching and burning to go away !!

[kareng]

Going gluten free will negate any tests you get done. UC might not agree to see you if you aren't on a regular gluten diet?

[mitchgam]

No matter the ultimate diagnosis something needs to be done about your current symptoms, you are having a histaminic reaction, before they also start to effect your breathing.

Maybe ask your doctor to give you a steroid or a series or pills (pregnasone?)

No, this is not a cure, but at least you will feel human again.

[bartfull]

Steroids such as prednisone will forst of all, give you a false negative on your test, and second of all, when you go off it you will get a "rebound" effect that will make your DH MUCH MUCH MUCH worse than it was before. I think Dapsone will mess up your diagnosis too.

 

Read as much as you can in the DH section and you will learn a lot. And pay special attention to the posts of SquirmingItch who is experienced and so very knowledgable.

[cyclinglady]

Steroids will impact the result of a celiac test. Do not take them yet if you want an accurate diagnosis! I am not sure about using Dapone and how it impacts testing. I Do know that it can be helpful for those with DH.

I do not have DH, but others do on this forum and I am sure they will stop by soon with advice. We have a DH section that I recommend you read. I think you will find it helpful.

Hang in there! For now, I understand that cold compresses help. I wish I could help you more.

[cyclinglady]

Congrats on lowering your HA1c!

[MJ-S]

Can you make an appt with your dermatologist? They usually have fast availability, and should be able to get you in quickly if you explain the problem. If you need a referral you should be able to request one from your PCP's office.

 

The dermatologist would be able to biopsy you, and put you on dapsone.

[squirmingitch]

Hi Crystal & welcome. It sure sounds like you are probably celiac. This may sound odd but you might be in luck. I have no medical evidence to back this up but I have a theory that the celiacs with dh who DO have strong GI symptoms are more likely to test positive on the celiac blood panel than those of us who have mild or no GI symptoms & from what you said you do have some strong GI symptoms. For this reason I would strongly urge you to go ahead with getting the blood work.

 

As others have stated - WHATEVER YOU DO, DO NOT STOP EATING GLUTEN, DO NOT GO GLUTEN LIGHT until all testing is done. 

DO NOT TAKE ORAL STEROIDS OR ALLOW A STEROID SHOT TO BE ADMINISTERED TO YOU IF YOU DO NOT WANT A FALSE NEGATIVE.

Of course, if you begin having breathing problems then appropriate actions should be taken. It is possible to have an allergy to wheat AND be celiac at the same time.

 

Does anyone know if one can just walk into U of C without an appt.? Do they have an ER? Could Crystal just go into the ER?

 

At the very least, call them tomorrow & tell them what is going on & see how quickly they can get you in. Phone # 1-888-824-0200

Open Original Shared Link    for an appointment online

 

IF they can't get you in then try the jerk doc & take some print outs with you to him to help persuade him to run the blood panel for celiac. Make sure he runs the FULL panel & not just part of it. Here it is:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

If you need a referral to a derm then get him to do so. If you don't need a referral then find one yourself. Here are some links & I would advise printing them out to take with you to both the jerk as well as any derm you go to.

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

YOU MUST BE EATING A FULL GLUTEN DIET EVEN FOR THE DH BIOPSY

 

Dapsone & a dh biopsy --- If you take Dapsone it will make the rash go away & you won't be able to get a dh biopsy. The biopsy is taken on clear skin adjacent to a FRESH lesion & if you have no lesions then you get no biopsy. I'm sorry but that's the b%$@# of this. If you began Dapsone tomorrow & then the next day got a dh biopsy done b/c you would still have lesions --- I don't know if the Dapsone in your system would negate the biopsy --- I have never read anything about that & have never heard of any medical studies addressing that scenario. 

I would advise you to research Dapsone carefully before you jump on that bandwagon. First if you are allergic to sulfa drugs you may not be able to take Dapsone as it is in the sulfa class. Also, Dapsone is not child's play. You need to have careful blood monitoring while taking Dapsone. Dapsone side effects can be extremely serious & btw, one of those is that IT can cause a rash. Lovely eh?

 

What you CAN do right now is to go on a low iodine diet:

Open Original Shared Link

 

Iodine intake really aggravates the dh rash & can even make it flare when it has been quiet. NSAID's aggravate the dh rash. If you have to take anything then go with Tylenol as it seems to be the least aggravating. 

 

One question --- is this rash of yours bilateral? Appearing on both sides of the body such as both knees, both feet, both ankles? The dh rash appears on both sides of the body like that.

 

The dh rash can & does come & go at will whether you are eating gluten or are gluten free --- just be advised of that. Don't expect that within a few days of going totally gluten free that the rash will disappear never to return again. Going gluten free is not an instant magic bullet as far as the rash is concerned. Some people clear up in a matter of months & some take years -- we are all individuals & heal at differing rates.

 

Now. I will say this. You don't have to have anyone's permission to go gluten free so you could begin this minute HOWEVER you would not get a dx. Some people really require that official dx b/c the gluten free diet is not an easy one & they need the dx in order to stick to the diet --- dh will pretty much fix that though b/c no one can stand dh for very long. 

If you want a dx then you will need to do what has been stated here. I'm so very, very sorry. 

 

Ask anything anytime. And {{{{{{{{{{Crystal}}}}}}}}}}}}}

[squirmingitch]

Read this thread too:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

[indianaharlegirl]

Thank you all so much. Before I read these I was sobbing just bc well you all know it is one more thing to have to deal with in an already busy life and I don't feel like I can be seen in my job until at least the face legions and swelling goes away which means I am going to piss off clients and colleagues....But you guys with your encouragement dried my tears and I know I have been thru stuff before and I freaked when they told me I was diabetic and now its just something that is and Im on autopilot with it. Doing the Diabetes and  gluten-free is going to be a challenge but maybe the pounds will fly off and I will be back in my high school jeans !!   lost about 35 on the diabetic diet. I  hope I am not trying to post things twice; if I do sorry but Im new.....UIC apt on April 9 and she put me on high priority wait list allegedly and was very nice. See derm on Monday, well not him but his Phys Asst but at least I am getting help. It would be awesome if they would do they blood work and biopsy both on Monday but I think that is a fantasy because I am sure the real dr has to do the biopsy. She will do the blood work for sure and I will make sure she does it all. Thanks for heads up on that. I have a graduate degree but all those chemicals and antigens....wow...Went to urgent care and they gave me steroid and I am weighing options on whether to take it or try to make it until Monday, But you guys are so great and I just appreciate your help so much and hopefully I can help one of you sometime.  It just sucks in our system how slow the process is with all the new advances in technology that there are now, My know it all teen sons said they aren't going to eat gluten free but I am just going to buy the gluten free stuff and they can live with it or buy their own twinkies and hohos.  Thank to you all !!

[squirmingitch]

WARNING! If you take the steroids then it will screw up the blood work as well as the dh biopsy & you will come up with false negatives hon. You will have to wait 2 months after being OFF the steroids before you can get accurate testing.

 

On limited time here --- will be back later. Hang in there!

[MomBTired]

My kiddo has DH. You should see a dermatologist about this. A primary doctor will not prescribe Dapsone to you. Lots of bloodwork has to be done and you have to be carefully monitored while using it. My son got a very rare blood disorder from it so he uses just a topical steroid cream now if he needs it. Oral steroids will not affect a skin biopsy for DH, my son was on tons of it because no one knew what the blisters were but if you are going to get bloodwork for celiac, you have to be eating gluten. We haven't seen a blister since October, and it's been so nice.

[Lobstah]

WARNING! If you take the steroids then it will screw up the blood work as well as the dh biopsy & you will come up with false negatives hon. You will have to wait 2 months after being OFF the steroids before you can get accurate testing.

 

On limited time here --- will be back later. Hang in there!

 

AND...you'll need to be eating gluten for a month or two prior to the testing.  And for the 2mos AFTER you get off the steroids, eating gluten may or may not cause any reaction, so you may have to wait even longer.

 

I was initially diagnosed by visual clues (DH) then followed by blood test with Celiac Panel, came back with elevated antibodies, and then confirmed with an endoscopy.  GI doc who was very knowledgable about Celiac said there was NO question about the diagnosis.