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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,018
    • Most Online (within 30 mins)
      7,748

    Nancy Adams
    Newest Member
    Nancy Adams
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.