Jump to content
  • 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

Rash, Hives, Dh, I Really Have No Idea.


MissHaberdasher

Recommended Posts

MissHaberdasher Apprentice

Hello again everyone! It's been a while since I've posted, but I've run in to another problem lately and just wanted some feedback.

 

I was told that I have a casein intolerance and have since completely gone off of dairy. A few days ago, a friend had me try a dessert from Ecuador that had dairy in it (she's gluten free as well, so I knew it was safe as far as that goes). I had just a spoonful, but I've been having rash outbreaks on my elbows, abdominal area, my feet and ankles, and the majority of my back. I feel ridiculous, but I can't tell if it's hive s, DH, or something else. It could be a series of suspiciously placed mosquito bites, despite me staying indoors for the most part...

 

I've taken two benadryl since the night I tried the dessert, and my outbreak hasn't improved at all. Has anyone else run in to this? What do you take to help? 


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



Celiac.com Sponsor (A8-M):



LauraTX Rising Star

Without knowing exactly what was in the dessert, it is hard to tell.  Is there any way you can get more info?  They may use different fruits and such in their desserts, so you could have eaten something you never had before and are allergic to.  I have problems reacting to all sorts of things, and I will take two benadryl, then two more 4-6 hours later (per dosing on package) and that way I am very medicated through the night and it seems to help more than one dose does.  If they don't go away soon, you may want to get a doctor to look at them before the weekend starts, they may be able to prescribe something stronger, but usually pushing good old benadryl will help.

 

When I have whole body rashes, I like to take a mildly warm bath with epsom salt and baking soda in it.  Seems to soothe the itchy skin a little bit, especially when your whole body is broken out, you can't bathe in hydrocortisone cream! :)

oni Newbie

So I get crazy rashes too. Mine aren't from foods though. I get contact dermatitis and excema. When I get rashes all over like you describe it's usually from my clothes (either detergent or fabric softener). Talk to a dermatologist or allergist. They can help you with diagnosis and treatment. I have a steroid cream that clears mine right up in a couple of days.

TGK112 Contributor

I also get hives - on occasion. But once they start, I can't get them to stop unless I take a lot of meds to treat them - Benadryl, a prescription anti-histamine, and prednisone as well. I had this problem before I was diagnosed with celiac - and was referred to an immunologist. He said there was no way to determine what caused the hives - but he believe that it was an auto-immune reaction - that we were only able to treat the symptoms since we could not figure out the cause. About a year later I was diagnosed with celiac - and started my gluten free diet. I have only had one outbreak in the two years since diagnosis. Everything that I have read says that one auto-immune disorder begets another auto-immune disorder. I am hoping that if I can keep my celiac under control that it will minimize or stop the hives.

MissHaberdasher Apprentice

I also get hives - on occasion. But once they start, I can't get them to stop unless I take a lot of meds to treat them - Benadryl, a prescription anti-histamine, and prednisone as well. I had this problem before I was diagnosed with celiac - and was referred to an immunologist. He said there was no way to determine what caused the hives - but he believe that it was an auto-immune reaction - that we were only able to treat the symptoms since we could not figure out the cause. About a year later I was diagnosed with celiac - and started my gluten free diet. I have only had one outbreak in the two years since diagnosis. Everything that I have read says that one auto-immune disorder begets another auto-immune disorder. I am hoping that if I can keep my celiac under control that it will minimize or stop the hives.

It's good to know (for me) that you have to take such hefty meds - I've upped my dose a bit, and that has helped. 

 

I haven't seen a doctor for this because, unfortunately, I've had a lot of doctors treat me like a hypochondriac. I mean literally, years of me complaining about extreme period pain, and no communication was given to me about what it could be. No tests, nothing. I had a bad doctor when I was a teen living with my parents, and that has put me off. Now I have anxiety whenever I go to a new doctor, because sadly, I feel crazy, like they'll assume I'm making this stuff up. I tend to get teary eyed when talking to a new doctor because my anxiety levels get so high, and that's not like me. 

 

I did seek help from a GI doctor recently (a month or so ago) due to a long term bout of stomach pain after every meal, and all she did was take a blood test to see if I had ingested Celiac. According to multiple people on this site, blood tests are almost like trying to take a blood test for arthritis - aka, yes, it has signs, but that is just a really roundabout way of looking for the actual problem. 

 

Basically I'm a little lost. Would it be more beneficial for me to see an allergist or a Celiac specialist? Honestly, I am terrified that if I see a Celiac specialist, they'll have me eat gluten for the biopsy. I just.... I don't know if I can deal with that. I work a lot, and I'm trying to get a promotion, and can't perform well at all when I've been glutened. I haven't even been diagnosed with an intolerance, just IBS. My blood tests (I've had 2 now) always come back negative. Not to mention the fact that I work at a very low income job and can only afford so many different kinds of tests. 

 

How do all of you deal with the doctors? With the various health problems? I'm so tired of self diagnosing, but I feel like I don't have good resources in the are. 

icelandgirl Proficient

It's good to know (for me) that you have to take such hefty meds - I've upped my dose a bit, and that has helped.

I haven't seen a doctor for this because, unfortunately, I've had a lot of doctors treat me like a hypochondriac. I mean literally, years of me complaining about extreme period pain, and no communication was given to me about what it could be. No tests, nothing. I had a bad doctor when I was a teen living with my parents, and that has put me off. Now I have anxiety whenever I go to a new doctor, because sadly, I feel crazy, like they'll assume I'm making this stuff up. I tend to get teary eyed when talking to a new doctor because my anxiety levels get so high, and that's not like me.

I did seek help from a GI doctor recently (a month or so ago) due to a long term bout of stomach pain after every meal, and all she did was take a blood test to see if I had ingested Celiac. According to multiple people on this site, blood tests are almost like trying to take a blood test for arthritis - aka, yes, it has signs, but that is just a really roundabout way of looking for the actual problem.

Basically I'm a little lost. Would it be more beneficial for me to see an allergist or a Celiac specialist? Honestly, I am terrified that if I see a Celiac specialist, they'll have me eat gluten for the biopsy. I just.... I don't know if I can deal with that. I work a lot, and I'm trying to get a promotion, and can't perform well at all when I've been glutened. I haven't even been diagnosed with an intolerance, just IBS. My blood tests (I've had 2 now) always come back negative. Not to mention the fact that I work at a very low income job and can only afford so many different kinds of tests.

How do all of you deal with the doctors? With the various health problems? I'm so tired of self diagnosing, but I feel like I don't have good resources in the are.

MissHaberdasher...I've lost faith in doctors at this point. That's a hard place to be. I used to have such respect for them. It wouldn't be a bad idea though to go to an allergist to see if maybe you have other food allergies. Maybe find out the ingredients in that dessert first so you can tell the doctor what you ate.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.