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Make The Itch Go Away Puh-leaseeee!

Guest pear_fairy

By Guest pear_fairy
in Dermatitis Herpetiformis

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Guest pear_fairy
Guest pear_fairy
Posted

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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SadiesMomma Apprentice
SadiesMomma
Posted

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

Guest pear_fairy
Guest pear_fairy
Posted

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!

gf4life Enthusiast
gf4life
Posted

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

Guest pear_fairy
Guest pear_fairy
Posted

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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