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. - knitty kitty replied to Jmartes71's topic in Doctors
      9

      Second chance

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    3. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    5. - Jmartes71 replied to Jmartes71's topic in Doctors
      9

      Second chance

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

    • Total Members
      133,671
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
    • HectorConvector
      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
    • Jmartes71
      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 
×
×
  • 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.