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I have had colon issues for years and family hx (1 uncle 3 aunts deceased) with colon cancer. Cousins with Celiac per biopsy. I have had a colonoscopy every other year since I was in my 30's. One year I had 3 colonoscopies and one that year included the EGD at the same time. They were always looking for cancer but only found red patches of inflammation.
I was scheduled for a colonoscopy and EGD this summer but the GI wanted to do separate procedures and my co-pay would be over $500.00, which I do not have. . . on my limited disability income. Since he wouldn't do as I asked, I cancelled the appointment.
I am going to see a GI that will do both procedures at the same time. They will schedule the procedures on my first visit, due to my history and I have my med recs to give her. The prep is worse than the procedure, in my opinion.
I have had 3 EGD's that I remember and was never told I had Celiac. One was because the GI said my stomach was way too tender and thought it was cancer. One was to check the duct after gallbladder removal, thinking I had developed another stone. The stone finally passed as they saw the damage to the duct, this one resulted in Pancreatitis which was horrid and lasted several months. The other EGD was in 2010 and although I asked the GI to biopsy for Celiac, he failed to do so. . . I wasn't very happy when I woke up. He did stretch my esophagus during the procedure.
Well . . . I will discuss this with the GI and see what goes. I had a polyp removed and my esophagus stretched in 2010 so this isn't an elective procedure. My iron is low again and my PCP is adamant that I have both procedures.
I made notes on the Dapsone thread that I started.
The itch is intense and when I first took Dapsone I had relief for about 4 months. The lesions started healing and the itching was reduced greatly. That is why they gave me the DH diagnosis. If your rash responds to Dapsone, it is a sure sign it is DH, per my doctors. My blood count came up and I begin to lose weight and all looked good for me. After that, I suppose the sulfa reaction kicked in and caused a different rash and intensified the itching all over my body.
I was told that before doctors would biopsy via EGD or even the skin, they would try Dapsone and if the rash cleared, it confirmed DH.
When I asked Dapsone users to respond, I realized something was wrong as several wrote their rash healed within days even though eating gluten. I knew my rash was either not DH or I was having a reaction to the medication.
I have a diagnosis of DH and Lupus but none of my doctors agree as to what is causing 'the rash'. One biopsy indicated a pointer to Lupus and none of the 8 biopsies showed DH although only 2 were done properly for DH.
I am scheduled to meet a new GI in December and hopefully she will combine a Colonoscopy and EGD procedure, the same day. I will ask the GI to biopsy via EGD and maybe that will settle the Celiac DH issue.
I have not been lesion free since Feb 2012 although I have been gluten-free since Oct 2012. I have had minor relief but then all symptoms renew. I'm on mega histamine blockers so that is helping me keep my sanity.
If the procedures are scheduled in mid December, when should I add gluten back to my diet? How much should I intake?
Thanks for any information. I'm sure someone has been in this same situation.
I had labs before my PCP ordered Dapsone and she ordered labs each month after starting the drug.
I took .25 twice a day = 50
They then prescribed x 3 = 75 thinking I wasn't on a high enough dosage.
I took x 4 a day = 100 and I became so sick, temp and fatigue that it was certain part of my rash was an allergic reaction.
I was allergic to sulfa drugs and Dapsone is sulfa based, cannot take it now
My rash has had amber colored fluid and other lesions are not blistered
The healed areas are rough, purple or dark red in color
The last biopsy pointed to Lupus but my doctors do not agree on that diagnosis
I have experimented by eating gluten and each time I have an outbreak either of new lesions or renewed old ones.
These lesions are horribly itchy like a 10 out of 10 , you scratch until they bleed and they still itch.
I feel a stinging sensation and once scratched the area burns like a sunburn feels.
I am currently taking another drug that is also used for DH and/or Malaria. Some relief but still have the rash.
I wish you the best in determining what your rash is . . . .
I never had a problem having the prescription filled. I use Walgreen's pharmacy, here in Florida. They have had to order it a couple of times but it was always there the next day. No substitute that I know of but one of my doctor's mentioned they can use another drug. (didn't work as well) Check with your doctor about that.
You may need to order online and have Dapsone shipped to you. Good luck.
See a Dermatologist and ask them if they will do a biopsy of non affected skin and also a lesion with DIF. (Direct Immunofluoresence exam) Mine came back as Lupus although 2 doctors had determined the rash was DH. Actually they now feel I have Lupus and DH. Skin Lupus is itchy also and according to my Derms, the photos online (with the crooked little tail) are not the only manifestation of Lupus rash. There are other auto-immune disorders that cause a rash also . . .trust me, been there and doing that.
I would most certainly see a Dermatologist and discuss Celiac DH. . . make sure they understand having the specimen sent for DIF exam. Good luck!
Hmmmm, just seeing your remark about not being able to eat gluten-free, due to your work schedule.
Here is what I did and maybe you will be able to sit down and figure out a workable plan.
I drink a gluten free meal replacement each morning. Provide me with nutrients and is quick and easy.
Have a salad for lunch with gluten-free dressing
Vegetables and low fat protein fresh meat for my evening meal / many times I eat another salad.
Here are some tips to help with food choices for a busy person.
I buy a pre-made salad at Wal-Mart or other stores that have them. It is made fresh daily and has just the right amount of veggies, grilled chicken, salad dressing, etc. Gluten free and the cost is below $4.00.
I buy either canned gluten-free chicken or vac packed chicken to add to my salad or use as chicken soup.
There is gluten-free pasta available that doesn't take long to prepare. Add chicken and marinara for a good Italian meal.
I've had some hectic work schedules in the past and can understand your situation. Honestly, I would make ANY type of change needed to be free of this rash and if my food intake will solved the problem . . . . step back and see me make the changes!
I am so sorry the Dapsone has made you sick. Were they taking blood draws every month? My doctor was following that plan but we just didn't realize I had developed an allergy. My blood counts were okay each month.
Once the Dapsone was out of my system, I saw a huge improvement in my rash. I'm assuming the gluten-free diet was working for me.
Squirmy, I went gluten-free on Oct. 20, 2012 and although I still have some rash, it is sooooo much better. I was bad and had a very small piece of cake, a couple bites of bread and crackers. I had a renewed outbreak just in the past 10 days but it is not as horrible as when I first broke out in Feb of 2012.
Hello to all that have responded to my original message. Just an update on my condition.
I was in ER around the end of May and the ER doctor was quite concerned that I had been broken out for so many months without a diagnosis. He called my medical group and did the ball ever start bouncing! My PCP called and wanted to see me the next day. My Dermatology office knew about the ER visit and what a change in trying to diagnosis me. I've often wondered just who this ER doctor is/was. . . .he sure caused a stir, in my case.
I had 2 new biopsies (please excuse if I'm repeating) one was taken for DIF (Direct Immunofluorescence Examination. This came back with IGG-Speckled Deposits in Keratinocytic Nuclei which suggest a connective tissue disease, Lupus erythermalosus in particular. I was also told they felt I had more than one auto-immune disorder and felt I could still have Celiac DH or possibly Non Hodgkins Lymphoma skin cancer. ** please excuse my spelling. My eye glasses are in the shop to be repaired **
I am due to see the Oncologist, Dermatologist, Rheumatologist and my PCP (Int Med) this coming week. I stopped taking Dapsone in June of this year and the doctors feel I developed an allergy to it. It did not affect my blood counts but the rash became so intense and so much worse that I knew something was wrong. I am still gluten free and this past month the rash begin to heal and I thought finally I had relief. Not so . . . I had a few bites of gluten foods and in the past week have a renewed rash on my belly and back. Now, I know I had gluten but the doctors think this is Lupus. . . who knows? The Dermatologist tells me this is systemic Lupus and the Rheumatologist feels it is skin Lupus with a big MAYBE. He doesn't think the rash looks like Lupus, at all. . . well, maybe the ones on the back could be Lupus . . . (I'm quoting him) LOL I have to just shake my head, I don't know what to believe. He told me the 'mushy' lesions were like Lupus but the not the other ones. Sound familiar? DH can present with different types of lesions and I know I've consumed gluten via bread, chips and a few bites of a delicious chocolate cake. Maybe I should schedule an EGD for next week?
So, back to my totally gluten free diet and by the way, each of my doctors asked me to continue eating gluten-free as the 55 + lbs I've lost is such an improvement for me. I have been off balance with an unstable gait so they ordered a cane for safety. I wanted to log on and post. I have moved to another city, my laptop bit the dust and I'm here at the local library today. Hope to have a new computer next month.
Hang in there my comrades of the rash! I can only say I believe my gluten-free diet is the answer . . .
It is amazing how all these rashes look alike. My rash is just like yours but I am covered like a blanket of this. My scalp is in horrendous condition too. Down my legs, on the top of my feet. I feel for you! Miserable. I tried taking Dapsone which evidently isn't the answer for me.
Have you asked or looked at Candida? I recently saw a D.O. that felt I had systemic yeast infection. I have no signs of a vaginal yeast but he said I had other symptoms. The rash, desiring sweet fruit, foggy brain, gut issues, etc. He knew I was considered a DH patient. A little radical but he ordered a 14 day script of Diflucan along with Garlic and oil of oreano each day. If you look at Candida skin yeast . . . it looks the same as DH. I was to have no sugar, low carbs and only organic chicken or beef. Sad to report that did not cure my rash but . . . hey, it's another possible answer to these rashes. Good Luck. . . BTW, when you post onto these pages, your photos will be online for anyone to see. I have sent mine to Photo Bucket for privacy. I found out because I was look online and thought . . . "That's me" which was a bit shocking!
Dapsone evidently works tremendously for some people. It is a Sulfa related drug so you would need to check that out. I am not responding to it but I faintly remember that I couldn't take Sulfa when I was younger for an infection.
My specialist(s) that have patients on Dapsone tell me the rash does go away with DH patients. I have had such a trying time with this rash that I have asked each of them about other patient responses. That includes my PCP, Dermatologist and Rheumatologist and each of them tell me their patients are on much higher doses than the .75 mg I was taking. I did not have negative blood test while taking Dapsone, my rash just didn't clear or go away.
You are seeing lots of responses regarding your question but I don't think they are from people that have actually taken Dapsone. I addressed the issue of Dapsone on a thread, with only 3 people responding and actually one responded to my private e-mail. I was tired of people telling me what they thought or had read . . . I wanted answers from someone that actually took the medicine. The people that responded to me had taken the drug ; 1) for 20 years 2) for 7 years 3) for 2 years
So, that's my response regarding Dapsone. It didn't clear my rash but have doctors telling me it does work for others. I guess you would have to be tested to see if you can take it and do a trial and error for yourself. Good Luck!
I have been on Dapsone for over 2 years.I did a lot better the first 6 months than I am now,I may need to increase my dose. The last 5 /6 months have been a nightmare. I have recently had additional family maters on me and I have not watched my diet like I should have. I am also allergic to corn and corn syrup is everywhere.my DH is on both arms and I am very restricted on so many things.I have the large lumps all in my arms. I can not lay on my arms and use a ice pack just to num the pain.I can not go outside without new breakout from the sun and the heat causes me to itch so had!!! I am totally miscible and have no idea what to do for myself
I feel for you. If you had a clearing of the rash with Dapsone for 1.5 year, it would cause you to think you need a higher dose. I was only taking .50 mg and upped to .75 and had such a horrific response to the additional dose. I could be allergic to Sulfa drugs too.
I think heat causes most irritated skin to be worse and I've experienced that also. One of my doctors told me to take Zrytec and Zantac together to reduce the histamine reaction, it does seem to help. I already took Prilosec for my stomach but he explained the difference between it and Zantac. That may help you?
The lumps under my skin are pretty small, maybe the size of a pea or less. I feel them everywhere, not just on my arms. My scalp had a renewed outbreak just a couple of days ago and now is so sore, good size lumps on my head. As of yesterday, my biopsy reports were not back as he asked for DIF and it takes a bit longer than usual.
I am still gluten-free and very cautions about being cc with foods prepared outside of my home. I am eating veggies, meat and sometimes a snack of chips . . . I read every label intently. I am not feeling good, at all. My lower back, hips, neck and head are aching badly. Just need an answer too. I do believe whatever is going on is affected by stress. We are moving to another city and it has about put me in bed. . . just have to deal with it until this report is back. Dr office called today . . . report still not in.
Hang in there, get back on your gluten-free diet and call your doctor about increasing your dose of Dapsone, if needed. Good Luck!