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

At My Wit's End


minton

Recommended Posts

minton Contributor

This has happened 3 times in the last few months. the first 2 times happened within a week, then it stopped for about 6 weeks and tonight it happened again. I'm trying to find a cause for it but even my doctor seems stumped.

I get a burning in my throat like heartburn and within seconds, a sudden onset of a bright red rash that starts on the face and BURNS, and travels from face to chest to arms and legs and back. It does not cover my stomach. My face is not itchy but physically burns under the skin and the skins surface. The rest of the rash area itches like crazy and my whole body is covered within 5 minutes or less. Along with the rash comes a horrible cramping in my abdomen, a need to poop, and a severe need to vomit. The symptoms worsen quickly. The rash burning feeling spreads down my body and finally, I feel I have to take a cold shower to stop the burning. Since I am unsure whether an allergy is playing a role, I have taken benedryl all 3 times prior to the shower and washed my hair and body with tea tree oil wash in the shower. I am unsure what the result would be if I just washed with cool water and didn't use benedryl. normally the rash starts going away as soon as I enter the shower but the cramping stays for a few hours, often leaving me doubled in pain for a while.

now here's the odd part.

the first time it happened, I was in the bathroom preparing for a nice romantic bath with the fiance. i had just woken up and taken my morning meds with water (this includes my daily allergy med, zyrtec). I hadn't eaten for a good 12 hours at least and there was no stress at all.

the second time was 3 days later. i had woken up late, rushed around, and barely made it to work. at work, i encountered a hatching egg sack of spiders in my area. the stress was high. I was drinking tea and waiting for an order of potato skins to munch on. I honestly thought I was dying. the "heartburn" was so bad I used my inhalor 4 times in an hour and my mom had to drive me to her house from work. both the first and second times, i was living with my fiance.

now tonight, i am living with the parents again due to finances and actually, its been a nice sort of break from the fiance. i had been up for a while but had eaten little (water, some kool aid, and a few pieces of gluten-free ham with cheese melted on it). I was sitting on my bed beginning to close down my computer for bed when the burning started. I thought, oh its just some heartburn cuz I ate too little. my appetite has been down lately. then it hit suddenly that my face was on fire (not literally) and I needed the bathroom instantly. as i sat there, my upper lip kept burning horribly (most sensitive part of my face) and i couldnt breathe well from the heartburn. thats when i noticed my chest and extremeities were covered in bright red itchy blotches. a quick look in the mirror confirmed it. another "attack". i hadn't taken my zyrtec in a few days (been busy and forgot) so i took it right away, woke mom up so she knew, and popped in the shower, again lathering all over with tea tree oil. the stress level for all of today: none, in fact, i was happy because i had wonderful news today.

so stress doesn;'t fit. location isn't the same either. neither is food (all that matches food wise is that its all gluten-free). nothing makes much sense here and i'm worried. what might be causing these attacks?


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



Celiac.com Sponsor (A8-M):



Ms Jan Rookie

Hi Minton,

Sounds to me like it could be something external: soap, bath shampoo/salts, dish washing liquid, washing detergents, carpet cleaners, chemical scents such as cleaning detergents or air refresheners, scented candles or something else like it. Or perhaps something you had touched and then unknowingly ingested. try to figure out if any external chemicals were present all three times (it could even be something you're presently unaware exists in all three places - like something that exudes from walls and that normally doesn't bother you, but due to a toxic buildup in your system, hit your limits on those particular days).

I have gotten rashes like those, with terribly itching red swellings - starting in the lips that totally swelled and then spreading - from ibuprofen pain killers. Took me a number of attacks before I made the connection, because I had never had a problem with ibuprofen before, and most of the times I wasn't reacting immediately but only when I started exercising or being very active. Since I found out, I haven't had any new attacks like it.

hope you figure it out.

ang1e0251 Contributor

This does sound like an allergic reaction which, of course, you already know. The way you described your lips it reminded me of another poster who was describing how ingesting MSG made her feel. I also wondered when you said Koolaid because of the food dyes. But like you said, each time was different foods.

You also mentioned ham and I started reacting to ham last year. I can only guess it was the nitrites/ates. I now only eat Hormel naturals with no nitrites/ates and no reaction.

I'm just brainstorming here. I'm just wondering if there is more than one thing that can trigger that kind of reaction in you.

minton Contributor
This does sound like an allergic reaction which, of course, you already know. The way you described your lips it reminded me of another poster who was describing how ingesting MSG made her feel. I also wondered when you said Koolaid because of the food dyes. But like you said, each time was different foods.

You also mentioned ham and I started reacting to ham last year. I can only guess it was the nitrites/ates. I now only eat Hormel naturals with no nitrites/ates and no reaction.

I'm just brainstorming here. I'm just wondering if there is more than one thing that can trigger that kind of reaction in you.

hmmm.. msg and nitrites/ates...you might have a point. since the reaction has been kinda random, i will compare next time and see if it still fits...

DreamWalker Rookie

I know this sounds a bit extreme (yet your attacks seem to warrant great measures) but have you tried keeping a very detailed journal of what you come into contact with on a daily basis? There does seem to be a connection between the bathroom & the attacks & chemical compounds are sneaky additives not only in food but everything from cleaning supplies to soap. If you find a common ingredient, you may have your answer. As for food, they often share common preservatives. If you suspect it's something you're eating, read all the labels not for gluten (you seem to have a handle on that) but for a shared ingredient.

The work reaction might seem completely random but did the "heart burn" start before or after you began eating? (I.e. were you eating in an attempt to assuage the heart burn?) Did you use your inhaler before eating? What type of job do you work? Think about the stuff you come into contact with - even your coworkers perfume. When I ask about the inhaler, I'm not thinking you're allergic to the medication but wondering what it came into contact to before you used it.

If it helps any, this is coming from someone diagnosed with multiple allergy syndrome at Mayo Clinic at the age of 5/6. I don't remember my severe reactions that lead to that diagnosis and can only recall one "attack" when I was 19 and from what I heard about my childhood reactions, it didn't mimic the previous symptoms much. (My upper lip swelled to 3x its normal size among a variety of other things. I never identified the cause though. It seemed to be exacerbated by a bacterial infection at the time. I never did solve the puzzle as it wasn't a persistent issue.) Although, my allergies are almost exclusively centered around antibiotics. Yet, I found metals cause me to break out in hives. (Necklaces, numerous face creams.)

As for medications, has your doctor discussed an epipen? And Benadryl is... well useless (at least for me) and according to the email I received it may or may not be gluten free. <_<

I found Hydroxyzine Pamoate far more effective. Although, I don't think it'd stop such a severe reaction. :( Another thing you may want to take into account is seeing a specialist/immunologist. Ironically, I never sought a specialist for the allergies but was referred to one for unresponsive asthma & she was the only doctor (pre-gluten free diet) who managed to get the asthma under control. And she documented the allergies so thoroughly that even though I'm currently having a completely separate health issue, it's her documentation that's saving my butt in school. (It's a long story that doesn't belong here.)

I hope you figure this out.

I know what it feels like to be at your wits end with health issues. I always felt lucky having the allergy issues sorted out & being diagnosed so young as even if doctors wrote it off I don't remember and the whole matter is simply second nature to me.

Try to remember you're not alone.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

    3. - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • 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.