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Make The Itch Go Away Puh-leaseeee!
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Holy moly my bum will not stop itching! UGHHHH. No there are no visible signs of anything going on down there except it is red of course! ACK. It drives me up the wall I swear! Then tonight had a smirnoff drink and within a half hour had more bumps appear on my arm! Not to mention the ones i have on my neck are driving me nuts too! And to make matters worse i have several tiny zit/blister things that started out just as a crack in corner of my mouth. I swear i am gonna look like one gigantic herpe in another week or two! Please let me stay strong until I can get to a good doc in May! Anyone else have these rash bumps that become invisible at times then pop up again and start itching?! It is like they are playing a joke on me saying "we are gone" then the next day or even a few hours later or whatever they are saying "we fooled ya ha ha we are back!"

I mean I just do not want to go wheat/gluten free until a doc tells me that is what I need to do as do not want to be off of it then have ot go back on it for tests ya know?

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I am sorry to say this hun but until you go on a gluten-free diet this will happen. It is your bodies reaction to the gluten. And Smirnoff has gluten in it. :( Wish it didnt though because it is sooo yummy!

Smart thinking in a sense though to stick to a non-gluten-free diet because it is much harder to diagnose celiac disease when you ane not ingestion gluten and its contaminents. ucky...

It takes some will.... Because I know what it was like not being gluten-free and doctors do not know WTF was going on (Espically here in the states). Finally I saw a good dietition to try to get on a better food routine for misdiagnosed "IBS"... she informed me about celiac disease. To this day my doc it like: "Duh, whats celiac disease. You're fine, just a tummy ache". I beg to differ..... Hopefully your doctor is open to the idea of celiac disease because mine certainly ISNT. I had to ball up and go gluten-free with the suggest from my dietition and it helped!!! I feel so much better for the mostpart already!

Basically you're going to have to tuff this one out till you can get some doctors input. Are they doing testing?? What types of docs are you seeing? Be sure to let your doctor know about the rashes... and anything else going on with your body emotionally, physically... Many things can coorelate with celiac disease.

Its not an easy battle but once you know you'll feel so much more at ease just to have some answers. Keep your head up, Were here for you! Just try to keep the area clean and try not to use irritating soaps and what not. and try as hard as you can not to scratch it, that only makes it worse. Maybe your doc can get you a special creme or something. My daughter has some "Trimoscolone" that works wonders!

Good Luck!!!!!!!!! :D

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Heather thanks so much for the reply!

Well we are military and living overseas so here in Japan been going to American military docs on base. Been seeing just a GP doc since July and he is the one who diagnosed me as IBS in January (after putting me on wellbutrin in November for depression as convinced me that was causing my tummy aches ugh!). So in January he handed me my bentyll and that was that! That crap didn't do anything for me as don't really have that bad of stomach aches jsut tender pressure spots and sometimes lots of heaviness felt. He did do lots of blood tests (6 tubes worth!), 2 urine tests, a pelvic u/s as thought it might be cysts, and took 5 abdomen x-rays but never had me drink any of that barium or anything so not sure how they could really see in there ya know?! But since we are headed to England next I quit pursuing it here as over there will get to see docs of my choice and actual U.K. docs not military ones. And since over there average diagnosis time is 3 weeks for celiacs i am so releived. I mean who knows it could be something else but man do I ever have the symptoms of it ya know?! So I am hoping to see a doc in England by end of May or as soon as I can get into a good one for digestive issues.

At least we ar evisiting family in teh U.S. first for month of April so gonna make sure to eat all my favorite foods i have been misisng (especially ones with wheat in them I may not ever get to eat again LOL!).

I cannot beleive you have so many things eliminated from your diet! Are you way skinny girl?! What do you eat? Heck I am hoping to lose weight if I start this diet but scary seeing about people that gain I mean how do they?! Are they only eating the meat and cheese or something? I intend to eat more of fruits and veggies if I have to go gluten-free.

Oh i have some of that cream you mentioned too but doesn't seem to help too much but like I said it comes and goes ack. I mean I keep that area clean as a whistle but maybe that is the problem too I am cleaning too much just cannot win ha ha! One thing says to powder the area others say no to grease it up with vaseline etc..ughhh so frustrating! Thanks agian for your help/support!

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Steph,

Can you get to a dermatologist when you are in the US? If they biopsy your rash it is a much easier way to diagnose celiac disease. Just make sure they are looking for Dermatitis herpetiformis, which it wounds like you have.

And they way people gain on the diet is all the gluten-free breads, cakes, cookies and other snacks that are much higher in calories than their gluten counterparts! Some people can't take that many calories or carbohydrates. Certainly more veggies and fruits is healthier, but most people can't just sit and eat veggies all day. Sometimes you have to have a treat, or you start to feel really deprived. That can trigger anger and depression. I am not sweating about the weight issue right now. I need to lose about 50 lbs, but I really feel that I need to get very solid into the diet right now, before I start cutting back on anything else!

I had a severe gluten accident on Sunday. Totally my fault, since I knew I probably shouldn't trust the food at a family b-day party, but I took the chance and I am still suffering for it. Unfortunately so are my children. They all have had stomach/behavior issues since then, and we are all exhausted. This is the worst I have felt since going gluten-free 3 months ago. I hope to feel better soon...

If you can try to get to a doctor here in the states while you are here, then I highly recommend it, but if you don't think you will have much luck here, then I hope you can hold out until May.

God bless,

Mariann

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HI Mariann thanks for the reply

Nope cannot see docs in the U.S. unless it is an emergency. So will have ot wait until we get to U.K. hopefully can get my rash to pop up then again LOL. i am sure it will as hasn't been going anywhere. Last night had some doritos and a smirnoff and instantly got a sore on roof of my mouth! So think my body is becoming less and less tolerant to wheat.

Ahh now I see I forgot I had read how the gluten-free carb foods have more of that bad stuff in them ha ha. I am sure i will break down and get some too as I love my chips etc..And with living in the UK many of the grocery stores have the special gluten-free foods readily available!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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