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

Pin The Allergy On The Donkey


Adelle

Recommended Posts

Adelle Enthusiast

Ok so I'm having a strange allergic reaction to something. My lips are swelling. It happens every year or so (at different times of the year) seemingly completely at random. So far the only things to get rid of it have been pregnizone (sp?) for 9 weeks (I'll NEVER do that again!) and shots of cortizone (or something that sounds like that) IN my lips (ouch!). Last time the derm. Did a biopsy, yes it is an allergic reaction. I went to an allergist years ago. Looks like I had collagen, women pay hundreds for that, I should be THANKFUL. Same reaction from the ER docs last year. AHHHHH!!!

I even did food charts and I eat COMPLETELY different foods! I even moved, 3 times!

Anyway, I have an appt with an allergist tommorow who have PROMISED to do blood testing etc. I'm just so freaked out! I want to find out what this is! So I can avoid it!!

Wish me luck :(


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Adelle:

WOW. I wish I had a good idea to give you! Don't you love doctors who tell you that you are "lucky" for this type of thing (I get that about being skinny all the time. I tell them that malnourished is not my favorite look. ha!)

Sounds like you have tried all "obvious" ways to figure it out. I agree---Prednizone can certainly wreck havoc on some people.

Could it be a medicine, personal care product, etc?

Best of luck....let us know how your appointment goes. I'm assuming they'll test for food as well as 'environmental' allergens as well?

Laura

Adelle Enthusiast

I'm pretty sure it's not a beauty product. The first few times it happened I used only dye/perfume free shampoo, soap, and deodorant. And no other beauty products.

My dad was allergic to all preservatives, a bunch of foods, and had anvironmental allergies too. I don't know exactly what it is, because I never knew him and he outgrew them before he met my mom. My mom is allergic to dyes and perfumes. My sister has food allergies.

It could be anything! I don't know what they'll test for, I just want them to test for something!

Jestgar Rising Star

Maybe a contact allergy to some food? My lips burn when they touch peach skin.

Adelle Enthusiast

I can't seem to find anything that causes a reaction with just touching it.

My lips are going kinda numb. Better than burning pain!!

Does anyone know what to look for in this appt? I've almost always had horrible experiences with doctors. Including 1 allergist who had me come back several times (billing my insurance) and never did any allergy testing. Hence why I didn't want to see one again...

I'm just horribly nervous. I just want to find out! I have a feeling that this will not be quickly resolved. Thanx.

Adelle Enthusiast

The allergist refused to do any allergy tests. Cause I don't have hives or anything. I don't know what that has to do with it. She did take 6 viles of blood (eeww) for some tests (but neglected to tell me what, I'll find out later) and do a chest x-ray (again I dunno why). Then I gotta give her my biopsy records (still waiting for them in the mail) and I guess we'll go from there. Oh I did get a steroid cream and zyrtec (tho I dunno if it'll help). And she said if they don't work I'll have "no choice but to take pregnizone" which I'm refusing because when I had to take it it took 9 weeks for it to go away. And it caused awful side effects. if this crap doesn't work, I'm going back to the dermatologist. She said she'd give me cortizone shots anytime I needed them, they suck, but it gets rid of the swelling and pain in only a day or two.

Anyway, even tho I'm having a blatant allergic reaction, there will be no allergy testing for me. Well that's her plan. My plan is if this bloodwork comes back fine (in chich case she said I'd live with the pain) I'm finding another allergist. Again.

She even suggested therapy cause I was crying. Not listening to me saying I'm crying cause I'm in paind and need to know why!

jayhawkmom Enthusiast

Do you have any environmental allergies that you are aware of?? I ask because sometimes, people who have environmental allergies have cross-reactivity with certain foods, and it causes oral allergy syndrome.

For example... people who are allergic to birch pollen frequently react to peaches, apples, pears, and a bunch of other foods.

People allergic to mold can cross react with mushrooms.

So, a reaction without an allergy to the actual thing being reacted to.... it's very weird.

Open Original Shared Link

Here is a link for you. Obviously... it's just a thought, based on what you've posted. Otherwise, I haven't a clue, and I hope you get some answers.


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



Celiac.com Sponsor (A8-M):



Adelle Enthusiast

I have never been tested for any allergies at all. But I've never noticed any seasonal allergies. I'll try to view the site (I'm on a sidekick so some stuff doesn't work).

For now I have my zyrtec and steroid cream (which is gritty and disgusting). Hoping this works.

I also got a call from my doc. I need to come back for "more blood tests". Who knows.

:)

Adelle Enthusiast

I have never been tested for any allergies at all. But I've never noticed any seasonal allergies. I'll try to view the site (I'm on a sidekick so some stuff doesn't work).

For now I have my zyrtec and steroid cream (which is gritty and disgusting). Hoping this works.

I also got a call from my doc. I need to come back for "more blood tests". Who knows.

:)

Adelle Enthusiast

Thanx jayhawkmom!! I looked up oregon allergens. Aparently the alder has been high in this area this week. On your link if ur allergic to alder, celery, pears, almonds, and parsley all can react. All of those I've been eating. I'm gonna see if it goes away, then I'll know! Thanx!

I don't have any other allergy symptoms, but it's worth a try.

Nantzie Collaborator

Yea, just keep in mind that for every substance on the planet there is someone who is allergic or intolerant to it.

I'm allergic to most of those mineral makeups because of the bismuth oxychloride in them. Even though they say that it's fine for people with sensitive skin.

I also react to wheat-based vodka even though most celiacs don't.

I'm just lucky I guess... :rolleyes:

It may take some trial and error, but you should be able to figure out what is causing your reaction.

Just don't count anything out. My mom used to get really severe hives from Ivory Soap (99.9% pure). I get a nasty rash from Dove soap, which is one of the few soaps my mom could tolerate. Hypoallergenic or fragrance free might not matter.

As for the allergist that refused to check you for allergies... Well... :blink:

I hope you get it figured out soon.

Nancy

jayhawkmom Enthusiast
My mom used to get really severe hives from Ivory Soap (99.9% pure).

I'm the same way!! Ivory has caused me to have hives and eczema so badly that I've scratched myself so hard I've bled, A LOT!!

I was not aware of oral allergies until recently - when my daughter started "reacting" to foods we are fairly certain she's NOT allergic to. Her pediatrician confirmed a "citrus sensitivity" after drinking orange juice caused her to break out in MASSIVE hives all over her face and arms, but no where else. No breathing issues, no nothing.... just massive itchy hives. He told us to "be on the lookout" for oral allergies, since she's also allergic to numerous pollens and grasses. Oh, how I can't wait for spring. (note my sarcasm)

Lots of luck to you!!

Adelle Enthusiast

Ahhhhhh!! Okay now I'm freaking out! My doc sent me a little card saying that my "globulin" was abnormally low. They r using my extra blood from other tests to run "some more tests". What does this mean?? I googled it. All the causes are terrifying! Kidney failure, liver necrosis!! Ahh what!? I'm gonna call monday, but in the meantime.... What can I do to stop freaking out??

Has anyone had this happen? I don't know the exact numbers or anything. Not yet. I have days to wait till I can find anything out! I can't stop thinking the worst.

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. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags

    2. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    4. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,371
    • Most Online (within 30 mins)
      7,748

    Susan Blodgett
    Newest Member
    Susan Blodgett
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
×
×
  • 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.