Very, Very Itchy - New Here And Could Use Some Help

[mommyoftwinks]

i am going to start going completely gluten free to see if wheat or gluten is the culprit in my rashes/hives EVERYWHERE from the waist down. it's getting so bad, i am really at a loss.

i've been to a gastroenterologist, immunologist, allergist, my regular doc and a dermatologist. everyone says the same thing except people that are going through what i'm going through. that its not food-related; that they aren't sure what's causing it. my derm said it was foliculitis (but it blows-up like huge hives that when i scratch leak a liquid) and the immunologist said it was not celiac because the celiac blood panel came back negative. my regular doc said my IgE levels are VERY elevated. my gasto said my chronic constipation was caused by IBS and that was why i was constipated all of the time.

i'm assuming i have an intolerance to SOMETHING i am eating. i suspect it is wheat.

a few years back before i became a mother, i was gluten-free because of hives and they went away with the diet. fast forward to being pregnant - no hives and i was able to eat any and everything with wheat. now a year later i'm covered again and its worse than it ever has been.

today was day 1 of no wheat; trying my best and not sure how long i should need to be wheat/gluten free before i see an improvement.

anyone have any advice or answers? thanks!

[Dixiebell]

Welcome! Sorry to hear of your rash. That sounds just awful. Can you go back to the derm. and get a biopsy done? I believe they take a sample next the rash to test for DH. If you have DH, you have celiac. Unfortunately, a lot of Docs don't know a lot about about celiac and DH. Get copies of your tests, it is possible you could be borderline and some Docs won't diagnose you if you are. You can post the results here and get help with them.

"today was day 1 of no wheat; trying my best and not sure how long i should need to be wheat/gluten free before i see an improvement."

Everyone's time frame is different. You might see results in a week or several months

"my gasto said my chronic constipation was caused by IBS and that was why i was constipated all of the time."

That is a crock of poo. IBS is a symptom of something. My son had severe C and since he is gluten-free, he no longer has it.

"a few years back before i became a mother, i was gluten-free because of hives and they went away with the diet. fast forward to being pregnant - no hives and i was able to eat any and everything with wheat. now a year later i'm covered again and its worse than it ever has been."

It sounds like you might have your answer already.

[mushroom]

Welcome to the forum.

Others have reported here that during pregnancy they were able to consume gluten again, only to have the intolerance return post-partum. I would think that despite the testing and the various views of the learned doctors ( ). if your hives went away before when you were gluten free, that they will do so again.

Many people test negative for celiac who are nevertheless intolerant of gluten and benefit from the gluten free diet. Tests do not give us the whole answer. My best friend died of ovarian cancer and never once showed any kind of positive result on the blood test for ovarian cancer (CA125).

[mommyoftwinks]

thanks so much for your reply. the rash is so bad. i had a biopsy done and it was the actual hive, not next to the hive so that was a waste of a scar! LOL! its these red bumps that flare up then i literally scratch them down and am able to make them flat. (i know; weird) and i feel like my finger is a little wet like it came from the hive. sometimes it almost seems like a whitehead and then scabs up.

i also wanted to add that my father has colon cancer and my grandmother died of rectal cancer. i am not sure if this has ANYTHING to do with celiac but i wasn't sure if it was important info.

the immunologist said it wasn't any autoimmune disease, either.

[enolah]

thanks so much for your reply. the rash is so bad. i had a biopsy done and it was the actual hive, not next to the hive so that was a waste of a scar! LOL! its these red bumps that flare up then i literally scratch them down and am able to make them flat. (i know; weird) and i feel like my finger is a little wet like it came from the hive. sometimes it almost seems like a whitehead and then scabs up.

i also wanted to add that my father has colon cancer and my grandmother died of rectal cancer. i am not sure if this has ANYTHING to do with celiac but i wasn't sure if it was important info.

the immunologist said it wasn't any autoimmune disease, either.

I hope you are not insulted or grossed out, but has anyone considered bedbugs? I know someone who recently had a rash which sounds sort of like yours. She picked them up at an upscale hotel and brought them home. She had the rash for over a month until a dermatologist finally made the diagnosis.

[mommyoftwinks]

not gross but wouldn't my husband have the bites, too? this has been going on for over 4 years as well.

i had the worst flare-up again last night; woke-up with hives that ITCHED and burned so badly. it took an hour for the itching to stop and i woke-up covered.

[enolah]

not gross but wouldn't my husband have the bites, too? this has been going on for over 4 years as well.

i had the worst flare-up again last night; woke-up with hives that ITCHED and burned so badly. it took an hour for the itching to stop and i woke-up covered.

4 years--well, that would probably go on record as the worst case of bedbugs ever! So much for that idea.