Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

mommyoftwinks

Recommended Posts

mommyoftwinks Explorer
mommyoftwinks
Posted

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? :D thanks!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

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 Proficient
mushroom
Posted

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 ( :P ). 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 Explorer
mommyoftwinks
Posted
  • Author

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 Rookie
enolah
Posted

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 Explorer
mommyoftwinks
Posted
  • Author

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 Rookie
enolah
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...