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

By Adelle
in Food Intolerance & Leaky Gut

Recommended Posts

Adelle Enthusiast
Adelle
Posted

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
happygirl
Posted

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
Adelle
Posted
  • Author

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
Jestgar
Posted

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

Adelle Enthusiast
Adelle
Posted
  • Author

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
Adelle
Posted
  • Author

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
jayhawkmom
Posted

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
Adelle
Posted
  • Author

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
Adelle
Posted
  • Author

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
Adelle
Posted
  • Author

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
Nantzie
Posted

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
jayhawkmom
Posted
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
Adelle
Posted
  • Author

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.

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,432
    • Most Online (within 30 mins)
      7,748
    ainsleydale1700
    Newest Member
    ainsleydale1700
    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

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.