Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Other Allergies Common? A Bit Of A Vent...

Canadiangirl

By Canadiangirl
in Coping with Celiac Disease

Recommended Posts

Canadiangirl Apprentice
Canadiangirl
Posted

Ok so I know that I have Celiac...I am so so so careful. I also know that I have a peanut allergy, also so so so careful. So last weekend I am with some freinds and we went clam digging on the coast ( very random, but fun!) we roast up the clams and loh and behold within minutes of having ONE BITE of this dreadful Razor Clam I break out on hives all over my hands and by ears swell and my tounge also strarts to swell. SO SCARY. I start freaking as i know that I must be having some sort of anaphilactic ( spelling?) reaction, luckily have some antihistimine, take several and suffer for several days with a sore tounge, feverish and hives galour. I went to my doctor as soon as possible and she prescribed an Epipen right away which is good as my peanut allergy can become worse in time too. great. so now I have a crazy allergy to shellfish?!?When will it ever end!?! I have an appiontment with an Allergist ( again) soon to clarify this new found allergy. Good greif! SO why have I not reacted like this before? I have eaten crab for ages...no problems, but this was a first with this evil Razor Clam.....

Has any one else had anything like this happen? Is my body trying to destroy me??! I gotta laugh, but its really not that funny. People around me are getting tired of hearing ' i cant have...i have this and such allergy etc' and now " heres a large needle with medicine in it, please shove it in my thigh if i start to swell'.....sigh....

-Canadiangirl

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

Celiac.com Sponsor (A8-M):


Helena Contributor
Helena
Posted

Hey, yes I can sympathise! I have a number of food allergies in additon to celiac disease. I sometimes find it awkward because I'm sure that some people think I'm kind of paranoid about my food. I have to be very careful because cross contamination could = anaphylaxis.

I'm not really sure about shellfish---I got some hives with shellfish with the skin prick test which means there is a likelihood that I could be allergic. clams were particularly bad--that hive lasted for a number of days. I've only had shellfish once----way back in 1989 I had clam chowder. I didn't react at all, but often it takes one exposure before you start reacting. I avoid shellfish to be on the safe side.

The reaction to clams sounds quite scary. Just to pass on one piece of advice that I learned the hard way---if you are prone to anaphylaxis (which you obviously are!) you are supposed to take the epipen right away and call 9-1-1 before the symptoms get any worse (i.e. at the first *sign* of a reaction). If the reaction progresses too far, it can be too late---the epinephrine might not kick in. Also, it is a good idea to carry two doses of epinephrine. The first dose doesn't always work for some people.

Also, a lot of people with shellfish allergies have difficulties with eating in restaurants unless they are certain that there is no cross contamination.

Good luck with all of this!

tarnalberry Community Regular
tarnalberry
Posted

That has got to be awfully frustrating! I'm sorry. :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,387
    • Most Online (within 30 mins)
      7,748
    Tim Semas
    Newest Member
    Tim Semas
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...