Dh After Going Gluten Free

[Mrs. Smith]

I have itchy, deep water blisters on my fingers and toes. Ive been gluten free 4mos and still breaking out. They go from these tiny deep blisters (hard to pop) to a patch of dry skin. Am I detoxing the gluten from my skin? It comes and goes weeks on and weeks off. Nobody else in my house has it so Im pretty sure its not scabies or anything like that. Can anyone HELP??

[skyyblues]

I am sorry I do not have an answer for you. I am wondering though what your hands looked like. I am sorry to ask such a question but I am desperate and hoping to find someone with symptoms like mine. My blood test was negative and I am unable to go back to gluten for the biopsy. I hope the others here can offer you advice that truly helps you.

I am attaching a couple of pics.

Thanks for looking....Open Original Shared Link

May your blisters be few and far between....Never again would be far enough!

[Ang615]

I am sorry I do not have an answer for you. I am wondering though what your hands looked like. I am sorry to ask such a question but I am desperate and hoping to find someone with symptoms like mine. My blood test was negative and I am unable to go back to gluten for the biopsy. I hope the others here can offer you advice that truly helps you.

I am attaching a couple of pics.

Thanks for looking....Open Original Shared Link

May your blisters be few and far between....Never again would be far enough!

I took a look at your pictures. WOW! That looks painful. I have DH, just went to Doc today. She is running and entire blood screen including a celiac panel, and sending me to dermatologist to confirm DH. Are gluten free yet? I sure hope you can get a handle on that. Good luck!

[skyyblues]

I took a look at your pictures. WOW! That looks painful. I have DH, just went to Doc today. She is running and entire blood screen including a celiac panel, and sending me to dermatologist to confirm DH. Are gluten free yet? I sure hope you can get a handle on that. Good luck!

Yes it is very painful. I had a very bad reaction today and my doc shot me with kenalog and put me back on 20mg 2x day. I hate the steroids but itch too much to protest....I was gluten free for 2 weeks and biopsy doc told me had to go back til May 12th when I have my endoscopy and colonoscopy scheduled. I made it from Tues til Friday and couldn't take it anymore. Seemed a little better til today. I reacted very badly to something. It seems as if when I have been off gluten for even a few days I react worse when I get some? Strange.....

[Mrs. Smith]

Update: Dr says Im doing great on the gluten free diet. He says gluten is in everything so be extremely careful. Even corn tortillas can be rolled out on flour surfaces!! I never thought of this! He gave me some cream for the DH and says it will go away eventually if Im strictly gluten free.

[skyyblues]

May I ask what kind of cream he gave you. I have a lot of trouble and am always looking for something to provide relief that I am not allergic to... Glad to hear you are doing well. Seems that they hide gluten in everything. I have started calling from the grocery store with the product in my hand and if they start with the general CYA statement I put it back on the shelf. Then I thank them for the info and move on. Good luck and beware.

[Mrs. Smith]

I havent filled the prescription yet but I think it says TAC cream. Ill let you know if it works. You just reminded me. I better ask the pharmacist if its gluten free!! What is the CYA statement on products? Do you have any more pointers on making sure things are gluten free. Im new to this, thanks!

[skyyblues]

Thanks. The CYA statement is when they say that they do not use any ingredient but can not speak for their suppliers. Also the last time I called on body cream they told me that according to their scientist or something to that respect, that the molecules for wheat were to big to be absorbed or some garbage like that. When I have open wounds on my hands, arms and legs how isn't it absorbed? I get a little upset. When they have what I have and use this stuff I will listen. I might be a little cautious right now but nothing has helped me so far. The gluten free is the best I have found. I can eat and not have to know where a bathroom is at all times. I think my skin is clearing up but it has been so bad it has been hard to tell. Without living in a bubble I am sometimes lost. I can't touch or eat something and breakout right away. Yesterday I stopped in a bakery for my father in law. He wanted doughnuts for his assisted living facility(small place). I used a lotion I have used before. I met a friend for breakfast, eating what I thought would be safe, 2 poached eggs and fresh fruit. Something poisoned me so bad I had to go to the doc and he gave me a shot of kenalog and prednisone. He also informed me that my other option was to be admitted to the hospital. I find it so frustrating not knowing what thing actually got to me. I have now vowed to only eat that which is clearly labeled and prepared by me. I will try my best not to touch anything...LOL and not enter another bakery until I am completely cleared up and off the steroids.

I apologize for the venting/rambling the darn steroids fire me up. Good thing he also gave me hydroxyzine 50mg as I think they actually calm the steroid affect. I am better today as I am fading on my neck and arms. My hands are peeling horribly. The good news is I don't see any new blisters!!! Yeah!!! I hope everything works for you and be sure to tell the pharmacist to check the cream for gluten. I just show my hands and arms it scares them pretty good.LOL I keep telling myself it could be worse but sometimes when I am having a bad bout it is hard to remember. Perhaps next time I throw myself a pity party I should get a hat and some balloons..

Have a good night and a better tomorrow...Here's to Gluten Free.....

[ChemistMama]

HI Skyblues and Mrs. Smith -

I've read that it can take up to a year to fully get the gluten out of your skin, so be patient. The healing takes a long time. I suggest that each of you get a copy of Dr. Green's book "Celiac disease: the hidden epidemic" Open Original Shared Link

I have some tips for you two: I was diagnosed with DH in Dec. but my son has been gluten-free since 2007:

1. Have your immediate family tested (your siblings, parents, and kids). There's a 10% chance that one of them has celiac disease. It's a simple blood test that will save them lots of health problems later.

2. Don't trust all food labels! There's laws, but only some companies faithfully follow them. Kraft and Unilever are good with labelling, and lots of companies have lists of gluten-free products on their website (like Heinz). Take a look through the forums here, especially the ones about products. My suggestion would be to make a list of the things you always buy, then go online and check the company's web site for each one to make sure it's safe. Then take a list with you to make sure you always remember what to buy. (for example, Ragu and Classico pasta sauces are safe, but prego is not...but that's not clear on the label!)

2a (thought of this later and didn't want to renumber!). Items to watch for that may contain gluten: dextrin, caramel color, modified food starch. And of course, no wheat, rye, barley, oats, or malt.

3. Scour your kitchen. Get a designated toaster, collander, waffle iron, etc. only for gluten free items. Don't wash dishes that have gluten with the same rag/sponge that you use for gluten-free dishes. Always wash your hands after handling gluten.

4. Check out glutenfreeforums.com before you buy any expensive gluten-free items; some things are great, and some taste like cardboard. My favorites are Schar bread mix, Pamela's chocolate chip cookie mix, Glutino crackers, and any type of corn pasta (llike mrs leeper's). The rice pasta is temperamental, you have to watch it closely or it turns to mush.

5. Take food with you everywhere, and don't trust that someone else will take care of you. Being gluten-free is very hard, and people don't realize that wheat is in lots of things.

I hope this helps!! (PS, Becky, I grew up in Racine!!! Go Panthers!! )

[ChemistMama]

PS- Skyblues, my dermatologist told me that steroids do nothing to help DH, it only makes it flare up more after you go off them. If you're really desperate, talk to a dermatologist about going on dapsone. It's a scary drug with scary side effects (I have some), but going on it short term while gluten-free can help ease your symptoms and help you heal your skin. Back in the time before blood tests it was used to confirm DH; if your welts go away on dapsone, you have dh.

Also, while you're healing, do not go out to eat at all. Cross contamination is everywhere. Bring your food with you at all times.

Note that antihistamines and singlulair do nothing to help DH. The antibodies that cause the DH are not histamines, so benadryl won't work.

Good luck!!

[skyyblues]

Thank you ChemistMama - I appreciate all your advice!! I did mention Dapsone to my doc when I went in on Mon. He said that with all that was going on he was worried about side effects from it. I believe that if the excema comes back as bad or worse that I am going to argue for a short time dose...I have thought it kinda strange that when I am gluten free my flare ups seem extremely worse. I don't think I can get a clear read on anything with all the steroids I have been on.

I do not plan on eating anything I have not prepared my self anytime soon!! I was at a dinner meeting last night and got mine to go for hubby to have today. I did eat the baked potatoe but I had them not cut it open I did it myself and so far seem fine.

I am not entering another bakery either. I picked up donuts for my FIL on Mon. I am getting scared to go anywhere. I wish I could just clear up and get steroid free so I could try little things and see what happens. Some day I hope....I keep telling myself it could be worse and I know it could..The friend I met with on Mon is a Breast Cancer Survivor!! She helps me keep my feet on the ground.

May I ask when you attended Park HS? It sure is a small world.... Thanks again and have a Great Day!

[Mrs. Smith]

Thank you so much for all your advice chemistmama! I am still learning when I have eaten something with gluten. I havent been feeling well the last couple of days and figured out the bbq sauce I was using has caramel color and modified food starch. As for my kitchen, it could use improving. I do have my own toaster, though. It seems like I am less sensitive to CC. Its really if I actually eat the stuff I have a reaction.

My skin is not nearly as bad as skyyblues. My DR says it can be a combo of weather, detoxing, and accidentally ingesting gluten.

I really wish my family members would get tested especially my Dad and sister as I think they have it. My stepmom is going to tell my Dads GI when they get back to the states (they live in Paris) and Im assuming they will test him. My stepmom was a medical investigator so Im sure my dads docs are the best.

My eczema seems to be clearing up. Im just taking this day by day. I think Ive had celiac for a really long time. Maybe my whole life. Im so happy that there is finally a light at the end of the tunnel. My body is so resilliant it amazes me how much its been through and still strong. The one thing that I wish was that I knew this in my early 20s when I was trying to have a baby. It was such heartache for me and my husband. Maybe a couple years from now when my body heals, I will try again....who knows!!

Having celiac is such a strange, lifelong struggle. Im so glad we have this forum to support eachother and know that we are not alone in this. As my Dr said to me the other day "you knew there was something wrong and we figured it out together." Hang in there and Live life to its fullest, just without gluten. Who needs it anyway!

[ChemistMama]

Hi Skyblues=

I went on dapsone because the secondary excema I got from scratching my DH was soo bad it wasn't healing. Dapsone is icky, you have to have blood tests weekly for a month then monthly after that. For me it's making my muscles really weak, no fun. I"m going to stay on it until everything is healed then get off it, the side effects are too nasty for me.

You're lucky, you are close to one of the largest gluten free grocery stores in the country!!

Open Original Shared Link

I"m going to try to go sometime this summer when I visit relatives in WI.

Oh, I'll date myself here, but I graduated from Park in the late 80s.

[Celiac 621554]

I get what I fondly call "the itchies" too, on my lower back. In the beginning, I used primrose oil and that seemed to help as a topical treatment, but the most consistently effective food option I've found, is FLAX. When I can get sufficient amounts of it on a daily basis, I do just fine.

[JeriWB]

I am a recently self-diagnosed celiac and have a dr. appointment on Friday. I have had psoriasis since my 20s including psoriatic arthritis (I am 52 now) so when I started breaking out, I was confused. "This doesn't act like psoriasis" I said, not putting the crazy intestine and all that entails in my thoughts. So, does anyone have both of these things? I'm guessing someone does since they must be all auto-immune disorders.

Thanks for all of the advice you have unknowingly given me. The rash is worse since I have tried to eliminate gluten. Fortunately, we already eat real foods rather than prepared things. However, no g & t on Friday afternoons is really hard to take!

[mimommy]

I am sorry I do not have an answer for you. I am wondering though what your hands looked like. I am sorry to ask such a question but I am desperate and hoping to find someone with symptoms like mine. My blood test was negative and I am unable to go back to gluten for the biopsy. I hope the others here can offer you advice that truly helps you.

I am attaching a couple of pics.

Thanks for looking....Open Original Shared Link

May your blisters be few and far between....Never again would be far enough!

I looked at your flicker photos, and the rash on your arm looks exactly like the rash on my daughter's lower back (in the triangle above the buttocks). I am not sure what to think of this. She has been gluten free since August 2008, and has never had a breakout like this. I am wanting to be in denial, but my heart knows what it is.

Does DH always itch? Can a breakout fade then get very dark red again in a matter of hours?

Sorry you are dealing with this. Be well. Thank you in advance for a response.

[skyyblues]

I looked at your flicker photos, and the rash on your arm looks exactly like the rash on my daughter's lower back (in the triangle above the buttocks). I am not sure what to think of this. She has been gluten free since August 2008, and has never had a breakout like this. I am wanting to be in denial, but my heart knows what it is.

Does DH always itch? Can a breakout fade then get very dark red again in a matter of hours?

Sorry you are dealing with this. Be well. Thank you in advance for a response.

It can be very itchy!! Yes it can flare up very bad in a couple of hours. I can not tell you what or how but it does. I am still trying to figure it out. It seems as if since I have been gluten free when I do flare it is much worse than before. I am guessing that my body was so used to being poisoned that it did not react as noticably. I am very sorry for your daughter. I use Desert Essence Organic products for body wash and shampoo/conditioner and their lotions. They are wheat/gluten free!! They are the best I have found as I am also allergic to formaldehyde. A little A&D ointment may help also. Steroid creams have never helped and oral or shots of steroids have only masked the symptoms and they come back worse...

Good luck to you and my very best to your daughter. Keep me posted as to how she is doing if you don't mind. Also as a mom I think it is important to tell you that this is not your fault!! It hurts so much to watch your children suffer and feel helpless. She is lucky to have a mom that is doing what she can to find out what is wrong and get her better!

[prisca]

I am sorry I do not have an answer for you. I am wondering though what your hands looked like. I am sorry to ask such a question but I am desperate and hoping to find someone with symptoms like mine. My blood test was negative and I am unable to go back to gluten for the biopsy. I hope the others here can offer you advice that truly helps you.

I am attaching a couple of pics.

Thanks for looking....Open Original Shared Link

May your blisters be few and far between....Never again would be far enough!

[prisca]

I was unable to view your photos on flickr, browser could not find them. Interested in seeing them though because of the other connections with Sjogren's and celiacs.

[skyyblues]

Did you try pasting the link in your address bar? That is how I got it to work for me just now. I am not familiar with Sjogerns... Does it have rashes?

[mimommy]

It can be very itchy!! Yes it can flare up very bad in a couple of hours. I can not tell you what or how but it does. I am still trying to figure it out. It seems as if since I have been gluten free when I do flare it is much worse than before. I am guessing that my body was so used to being poisoned that it did not react as noticably. I am very sorry for your daughter. I use Desert Essence Organic products for body wash and shampoo/conditioner and their lotions. They are wheat/gluten free!! They are the best I have found as I am also allergic to formaldehyde. A little A&D ointment may help also. Steroid creams have never helped and oral or shots of steroids have only masked the symptoms and they come back worse...

Good luck to you and my very best to your daughter. Keep me posted as to how she is doing if you don't mind. Also as a mom I think it is important to tell you that this is not your fault!! It hurts so much to watch your children suffer and feel helpless. She is lucky to have a mom that is doing what she can to find out what is wrong and get her better!

Thank you for writing back. My daughter still had the rash on Monday, so I called the GI (I figured he was the best place to start, considering). After 3 calls to his office they said I should take her to the ped I argued that the ped. was hardly the subject matter expert, but OK.

The ped. thinks it is the same as what my daughter gets on her upper body--keratosis. But, her keratosis is never red or inflamed, just whitish pink bumps that raise up/dry out, like little whiteheads.

The rash on her spine looks exactly like the flicker photo posted on this thread of the forearm (I looked at it three times).

It stopped itching after about 24 hours, but went back and forth between being swollen and inflamed and flatter and just a reddish purple surrounded in white. She has no lesions or postules, so of course no biopsy was recommended and I wouldn't jump into one anyway--the poor kid has been through enough!

I do not believe it is keratosis, but don't know what to think. The rash has been there at least 6 days now. If it continues I am taking her to a dermatologist.

She did have some strange mood changes immediately before the 'outbreak', and then some 'C' that same first night, so of course I was thinking DH along with a glutening.

In the past she has had several itchy red scaly rashes on the tops of her hands.

Did you try pasting the link in your address bar? That is how I got it to work for me just now. I am not familiar with Sjogerns... Does it have rashes?

Here is a link about sjogren's disease symptoms

Open Original Shared Link

[akasabine]

Thank you for writing back. My daughter still had the rash on Monday, so I called the GI (I figured he was the best place to start, considering). After 3 calls to his office they said I should take her to the ped I argued that the ped. was hardly the subject matter expert, but OK.

The ped. thinks it is the same as what my daughter gets on her upper body--keratosis. But, her keratosis is never red or inflamed, just whitish pink bumps that raise up/dry out, like little whiteheads.

The rash on her spine looks exactly like the flicker photo posted on this thread of the forearm (I looked at it three times).

It stopped itching after about 24 hours, but went back and forth between being swollen and inflamed and flatter and just a reddish purple surrounded in white. She has no lesions or postules, so of course no biopsy was recommended and I wouldn't jump into one anyway--the poor kid has been through enough!

I do not believe it is keratosis, but don't know what to think. The rash has been there at least 6 days now. If it continues I am taking her to a dermatologist.

She did have some strange mood changes immediately before the 'outbreak', and then some 'C' that same first night, so of course I was thinking DH along with a glutening.

In the past she has had several itchy red scaly rashes on the tops of her hands.

Here is a link about sjogren's disease symptoms

Open Original Shared Link

Hi I'm totally new to all this, as well as this forum. So I hope I'm doing this correctly.

As for the photos of mimommy's hands, this is what my hands looked like for about 6 months (which developed after an emotional trauma in my life). I went to several doctors who prescribed various creams and talk therapy, as the condition developed after an emotional trauma.

It wasn't till I went to my nutritionist just three months ago, and began an elimination diet, that I discovered that gluten was the problem. I had relief within a month, but it has not cleared up completely. One of the things that my nutritionist had me do, and I continue to do, is to take PROBIOTICS to help heal my gut. She also suggests that I not eat dairy while I'm still in a healing mode, as it can irritate and arrest the healing process. I've also given up coffee first thing in the a.m. I begin the day with a cup of hot water with lemon and ginger, and only have coffee after I've eaten something.

So, if I hadn't had this trauma would I have ever found out I had this? I don't really know when it began? Childhood? I always felt that something was wrong with me. Two years ago I went to Lourds in France to pray for healing for my depression. I ended up getting in an argument with my mother-in-law because she wanted to leave before I got to do what I went there to do. The long and short of it is that I've been in conflict with my husbands family every since. And thus this trauma lead to my hand condition, that lead to this diagnosis, which seems to be the cause of my life long depression. So in a way, I owe my healing to Lourds and my incredible nutritionist.

I hope this is helpful. Not having the use of ones hands is a terrible disability to live with, not to mention the incredible pain and itching. I'm so happy I found the cause of my problem, although I'm also a diabetic, which makes eating even more challenging. But for the first time in years, I'm not depressed, and my mind is not foggy, and my hands are healing, but not yet healed. And, I'm going off the antidepressants I've been on for the past 4 years What a journey.....