Need Some Help With This Itch! And What Test I Need To Ask For From Doc!

[Juniper2080]

Need some help! I have suspected that I have a gluten intolerance for awhile now due to my IBS and just not feeling 100%. Well about two weeks ago my whole body started to itch...no rash, no bumps, no visible signs of anything wrong. I ruled out the typical reasons for itching...no change in foods, no change in soap, no change in laundry soaps, no new pets, no bugs in my bed, no new meds....basically nothing had changed in my life. I went to bed fine and woke up the next morning with the most intense itch I have ever had. I dealt with it a week and then went to family doctor as I was itching so much it was embarrassing! She walked in the room and said "so you have the winter itch" which means I have dry skin....umm no my skin is NOT dry. I know what dry skin feels like and looks like and I do not have dry skin. But she said to go home and take short warm (not hot) showers and to start using an intense moisturizing shower wash (like aveeno for eczema) and to use Sarna lotion or again an eczema lotion. So. That is exactly what I did!! I followed her instructions to the letter and now a week later the itch is way worse and I have now developed a rash along with pinhead size bumps on my arms, shoulders, chest, neck, jaw and legs. Every night for two weeks I have stayed up scratching and surfing the web for what I have and to keep my mind off the itch. I used a whole bottle of sarna lotion in less than a week to try and stop the itch....it only gets WORSE!! For the past two nights I have read and read and read about DH and I am convinced that this is what I have!!! And then this morning in while washing my body with my new recommended body wash I realize that it is made with WHEAT AND OATMEAL!!! No wonder I am getting worse if I really have DH!!! I called my doctor today and have an appointment for Monday and I am hoping she will send me for some test....what test do I need to ask for? I plan on going gluten free soon and know that I have to have my test done befor I can go gluten-free. So the sooner I get all the test the better. So basically I need all you wonderful ladies past experience in pointing me in the right direction. I have skipped around this forum and have already picked up a few things but hope for some more guidance in getting my diagnosis!

Thanks for all your help and words already written!!

Jennifer

[squirmingitch]

Jennifer, I'm so sorry we're getting back to you so late. By now you've already had your appointment. The best way to get a dx for dh --- and a dx of dh IS a dx of celiac disease --- is to go to a dermatologist & get a skin biopsy for dh. This requires a derm who is experienced in biopsies for dh. This is not any normal biopsy so they have to do it right or you will get a false negative. They must take the biopsy ADJACENT TO  but NOT ON  an active lesion. They have to order the lab tests specifically stating they are looking for dh. The lab uses a fluorescent staining process. If the derm does not do all this correctly then the results will be a wash. If you've been reading threads on here, then you know that those with dh test neg. on the celiac blood panel 60% of the time so your best bet is to get the dh biopsy rather than the celiac blood panel. If your biopsy turns up positive then you DO have celiac disease. That means you are not gluten intolerant --- it means you have an autoimmune disease which the eating of gluten triggers. It means you can NOT eat gluten ever again, not even a tiny bit once in a while.

[Juniper2080]

Jennifer, I'm so sorry we're getting back to you so late. By now you've already had your appointment. The best way to get a dx for dh --- and a dx of dh IS a dx of celiac disease --- is to go to a dermatologist & get a skin biopsy for dh. This requires a derm who is experienced in biopsies for dh. This is not any normal biopsy so they have to do it right or you will get a false negative. They must take the biopsy ADJACENT TO  but NOT ON  an active lesion. They have to order the lab tests specifically stating they are looking for dh. The lab uses a fluorescent staining process. If the derm does not do all this correctly then the results will be a wash. If you've been reading threads on here, then you know that those with dh test neg. on the celiac blood panel 60% of the time so your best bet is to get the dh biopsy rather than the celiac blood panel. If your biopsy turns up positive then you DO have celiac disease. That means you are not gluten intolerant --- it means you have an autoimmune disease which the eating of gluten triggers. It means you can NOT eat gluten ever again, not even a tiny bit once in a while.

Thanks so much for the information!!  My family doctor sent me for a Celiac Blood test today and then after that she gave me a shot of cortizone for the itch.(which has not phased the itch one bit )  How long do I have to wait to go to the dermatologist to have them do a biopsy since she gave me the cortizone shot?  I was going to have her not do the shot but last night was terrible, I think I woke up every hour on the hour scratching  I was really hoping to get some sort of relief from the shot....but I have not .

[squirmingitch]

Get a copy of the blood test when it comes back & post it along with the ranges so we can make sure the full, current celiac panel was done.

I wish you had not gotten the shot. Now it's going to be 2 months before you can get a biopsy for dh. And even though it did not help with the itching; you probably will get a lash back from it. Those lash backs are a b%$@#! If you think it's bad now, you won't believe how bad it can be from that. I'm sooooo sorry. I truly hope somehow you won't get that. 

And this is VERY important!

DO NOT STOP EATING GLUTEN UNTIL YOU GET THE DH BIOPSY. DO NOT STOP EVEN FOR 1 DAY. DO NOT EAT GLUTEN LIGHT. DO NOT THINK YOU CAN STOP GLUTEN & THEN EAT A FEW CRACKERS FOR A COUPLE DAYS BEFORE THE BIOPSY.

 

What you can start right away is to limit your iodine intake & that may help you. See THYCA.org for a low iodine diet. Now, when the time nears for the dh biopsy, remember that you must have a fresh lesion (no scratching around it) for the biopsy to be taken near. If you don't have any a few days prior then you could try loading up on iodine rich foods such as shellfish. I say no scratching around the lesion b/c what the lab will be looking for is very quickly & easily destroyed by scratching. Hopefully, the derm will take at least 2 biopsies. Do you have any info. that this deem has experience with dh?

[Juniper2080]

Get a copy of the blood test when it comes back & post it along with the ranges so we can make sure the full, current celiac panel was done.

I wish you had not gotten the shot. Now it's going to be 2 months before you can get a biopsy for dh. And even though it did not help with the itching; you probably will get a lash back from it. Those lash backs are a b%$@#! If you think it's bad now, you won't believe how bad it can be from that. I'm sooooo sorry. I truly hope somehow you won't get that. 

And this is VERY important!

DO NOT STOP EATING GLUTEN UNTIL YOU GET THE DH BIOPSY. DO NOT STOP EVEN FOR 1 DAY. DO NOT EAT GLUTEN LIGHT. DO NOT THINK YOU CAN STOP GLUTEN & THEN EAT A FEW CRACKERS FOR A COUPLE DAYS BEFORE THE BIOPSY.

 

What you can start right away is to limit your iodine intake & that may help you. See THYCA.org for a low iodine diet. Now, when the time nears for the dh biopsy, remember that you must have a fresh lesion (no scratching around it) for the biopsy to be taken near. If you don't have any a few days prior then you could try loading up on iodine rich foods such as shellfish. I say no scratching around the lesion b/c what the lab will be looking for is very quickly & easily destroyed by scratching. Hopefully, the derm will take at least 2 biopsies. Do you have any info. that this deem has experience with dh?

I am soooo shooting my self right now for getting the shot!!!  I swear the itch is worse than it was before!!!  I have not found a derm yet, I plan on calling the insurance company today or tomorrow to see who is available to go to.  Do you have any suggestions for relief now(or point me to the best post here on the forum that have them listed already)? There is sooo much information on this forum that I start to get overwhelmed and sidetracked with all the information. I have been doing the Sarna lotion, which helps until it soaks in and then the itch is back, I have also started taking my normal showers and then slowly making the water colder and that seems to help a little in the morning.  I want to make sure I don't do anything else that will prolong the time to get my biopsy.

 

I really do appreciate your help and will definitely post the results of the blood test.

[squirmingitch]

First you need to make sure all your topical products are gluten free. Normal celiacs will say you don't need to do that but those of us with dh seem to react to topical gluten so make sure shampoos, lotions & such are all gluten free. Also at this point you can go ahead & begin making sure your vitamins & meds, both prescription & OTC are gluten free. You want to keep eating gluten but you don't have to get it in your meds right? Here are links for forums regarding those items & you can always start a new thread in them too.

https://www.celiac.com/forums/forum/32-gluten-free-foods-products-shopping-medications/

 

As to help with the itching... here is a thread

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

 

You are very welcome. We are here to help. I wish I could be of more help with more links but I am in the process of changing over computers & do not yet have my files & such on this new one yet & can only run one at the time & the old one is very sick so it's like pulling teeth to run it & get any info. off of it. I'm hanging on hoping it doesn't die before I can get internet service to both at one time so I can transfer all files & info.

[Juniper2080]

Well it's been about 72 hours since my cortizone shot and the itch is still here...the rash has started to fade and is not so bright red, inflamed and angry looking. I can still feel all the little bumps and you can still see them. Was wondering is this normal for DH? Do steroids not effect the itch but make the rash go away? Doctor called today and said blood test came back negative for celiac (highly unlikely) or something like that..I will post results later. Now I don't know what to do?!? Do I wait the 2 months for the steroids to wear off and hope the rash comes back so they can biopsy it or do I go gluten free now and always wonder if it was the steroids that kicked whatever I have in the but or if it was the gluten free diet that took care of the problem?!? Or if I go gluten free now will I still have a back lash from the steroids? I just don't know what to do

[squirmingitch]

I'm not surprised the test came back negative. Those of us with dh test negative on the celiac blood panel 60% of the time.

Generally, steroids make the itch and the rash go away or at least calm down but the backlash comes when the steroids are withdrawn (as in oral steroids) or when the steroid shot gets out of your system. Then the rash & itch come back with a vengence! Even if you go gluten free right now, if you have dh, you will have a backlash from the steroids. Sorry.

 

Yes, post the test results so we can see if the full panel was done but we have to also have the ranges or nothing means anything.

 

You have to make the decision as to what to do. It's your life & you know your own mind better than anyone else. Will you question it later & want an absolute dx? Can you live with not having a dx? Can you stay gluten-free w/o an official dx? Will you be able to get a derm who will biopsy it? If so, will they do it right? And now, you have a negative blood test for celiac --- if you tell them about that or they find out, then it will be even harder to get them to biopsy for dh b/c 90% of them do NOT know that 60% of dher's test neg. on the blood work.

 

With dh, it's damned if you do & damned if you don't. It's difficult enough to get a dx if you're a regular celiac. It's damn near impossible if you have dh. BUT there have been people who got lucky enough (but it's rare) to get a derm who knew their stuff & did everything right & they got the dx.

[Melly250]

I started with bumps and itching on my elbows around 2-1-14. I went to the dermatologist a week later to get diagnosed with eczema and be given a steroid prescription. The cream seemed to help but then I started seeing bumps show up on my neck, shoulders, and even thighs and sides of my butt. The itch was servere. I didnt notice any oozing of any sort though. I tried changing lotions, detergents etc. Nothing helped. Then I went to my Dr. a few days ago and she said testing for Celiac was a waste of time since it almost always comes back negative. She referred me to another dermatologist and I need to make the appt. The trouble is, the bumps are not as itchy anymore and no new ones have come up.  I see scabs and bumps on my skin flesh colored but they dont itch very much. Every time I got bumps on one side of my body, the other side is the same. I am  not sure if this is DH. Can DH come and go? or is it a constant cropping of new bumps that itch? My only other symptoms are bloating and stomach distention. I do feel tired alot but no diarrhea. Can anyone help?

[squirmingitch]

With dh, we tend not to have the strong GI symptoms b/c the antibodies deposit under our skin. This is also why we turn up a false negative on blood work 60% of the time. It's harder for us to get a positive on the endoscopy also. The best way for a person with dh to get a dx is a skin biopsy. This has to be done correctly. It has to be taken from clear skin adjacent to an active lesion. The derm has to know what they're doing & not take it ON a lesion. The patient MUST be eating a full gluten diet & NOT have taken any oral steroids OR used any topical steroid creams for at least 2 months or you will get a false negative.

 

DH can come & go whether you're eating gluten or not. The reason it can still come & go when you're not eating gluten is b/c the antibodies are under the skin & it takes time for them to go away. I had bad bloating, stomach distention, belched like a sailor, migraines, weight loss, eventually muscle loss, joint pain & fatigue & a few other things. I only had "D" maybe once every 2 months & it would just be 1 or 2 episodes but nothing like all day or all night. This is common for dh.

 

It's almost impossible to get a dx for dh but a dx of dh IS a dx of celiac disease.

[BlessedMommy]

squirmingitch, just curious how did you get a DX months after going gluten free? Was yours just a fluke or do lots of folks get DH DX'ed without eating gluten?

 

I'm guessing that after over 4 years of being gluten-free, I would have slim to no chance of getting a DX, but I'm curious anyway.

[Melly250]

I did not know that a skin biopsy would be useless if I used steroid cream. I just used it yesterdy. How do I know if bumps are active? Most of mine small scabs now and no new ones have appeared.

[squirmingitch]

squirmingitch, just curious how did you get a DX months after going gluten free? Was yours just a fluke or do lots of folks get DH DX'ed without eating gluten?

 

I'm guessing that after over 4 years of being gluten-free, I would have slim to no chance of getting a DX, but I'm curious anyway.

 

It's very, very rare to get a dx after going gluten-free. It has happened but 99.9% of the time it's someone who has been going to the same doc for forever & both trying to figure out what was causing the rash & finally ending up being dx'd by response to the gluten-free diet. This of course, can take years!!!! In my case it was a total, absolute, mind blowing fluke! We had moved 400 miles & so I had no doctor here yet & I just went to a "clinic" that takes walk ins; like one of the emergency clinics. You know the kind, they're for when you don't need the ER but need to see a doctor now & not 3 weeks from now. I went to try to get tests done for my vitamin, thyroid, iron, etc.... checked to make sure if I needed to supplement, then I would know what to supplement.

I found the old thread where I announced it. Here's the link:

https://www.celiac.com/forums/topic/95088-i-got-officially-dxd-today/

[squirmingitch]

I did not know that a skin biopsy would be useless if I used steroid cream. I just used it yesterdy. How do I know if bumps are active? Most of mine small scabs now and no new ones have appeared.

 

You would have to wait for it to flare up again. When the bumps come up & are itching like the dickens. 99% of derms don't know if you use steroid creams it will invalidate the biopsy just as they don't know you must be eating a full gluten diet until the time of the biopsy, just as they almost always take the biopsy ON the lesion. There are more pitfalls to getting a dh dx than the moon has craters.

[Melly250]

Sometimes I get a single bump that itches and it seems if I don't itch it then it doesn't spread. Have you had that?