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 Celiac.com!
    eNewsletter
    Donate

And My Journey Continues...

DavinaRN

Recommended Posts

DavinaRN Explorer
DavinaRN
Posted

Negative celiac blood work

Positive dietary response

Dec 26 ate at o'Charleys (gluten free menu), started with normal uh oh I had gluten response that progressed to anaphylactic shock and ER visit

Jan 11 food allergy testing. Not allergic to anything, but doctor is worried about Mast Cell disorder with wheat and/or gluten as the trigger (this disorder causes allergic reactions to triggers without having a true allergy) started on Zantac 300mg and Allegra 360mg a day. Dr feels I am safe to eat whatever.

Yesterday we ate out (cheeseburger with chili, no bun, FF). I felt a little of my gluten response. I mean just a little (could be the Zantac helping-even though its a tummy med, Techanically it's an antihistamine). About an hour later I started itching ALL over, came home and took the Allegra and within 30 minutes I was fine.

Today, I just took both meds in AM so that it is more in system during day. Wednesday I will start the 24hr urine test and drop it off Thursday am and have blood work done at that time. So my journey continues, but I'm still avoiding gluten/wheat since it is a trigger for something in my body.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Sorry but that sounds like a true allergy to me. Skin testing is not 100%. If that is what causes it, then avoid it at all costs. I'm surprised you weren't given an epi pen to carry.

Link to comment
Share on other sites
DavinaRN Explorer
DavinaRN
  • Author
Posted

I alredy have them due to bee allergy.

Link to comment
Share on other sites
Takala Enthusiast
Takala
Posted

You may want to limit the "eating out" routine, until you have this situation diagnosed. Do you have an inhaler, in case your breathing constricts? (wheat can cause asthma in some people) And sorry you found out that restaurants can vary on how they handle cross contamination. Scary. And thank God for antihistamines.

Link to comment
Share on other sites
Seifer Rookie
Seifer
Posted

caseine and chili are potent allergies, with cheese I get an itch all over and chili raises my pulse sky high

Link to comment
Share on other sites
DavinaRN Explorer
DavinaRN
  • Author
Posted

Takala I'm back to not eating out again, just not worth it.

Seifer, thing is with this disease he is looking at I'm not truly allergic. My skin test was 119 foods, all negative.

Oh well it is what it is.

Link to comment
Share on other sites
GottaSki Mentor
GottaSki
Posted

Hi Davina-

Might want to do a bit of reading about histamine intolerance / regulation problems - for some reason it is completely off the radar for American docs

....took me a very long time to find this important piece of my wacky health puzzle.

If you can't find info let me know - I've got some great links - just no access to them at the moment.

Hang in there - you will figure this out :)

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      121,077
    • Most Online (within 30 mins)
      7,748
    MONICA777
    Newest Member
    MONICA777
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Bad Reaction To Regular Ruffles Cheddar and Sour Cream

      By trents · Posted

      Here are the ingredients listed for the regular sour cream and cheddar Ruffles: Potatoes, Vegetable Oil (Canola, Corn, Soybean, and/or Sunflower Oil), Maltodextrin (Made from Corn), Salt, Whey, Cheddar Cheese (Milk, Cheese Cultures, Salt, Enzymes), Onion Powder, Monosodium Glutamate, Natural and Artificial Flavors, Buttermilk, Sour Cream (Cultured Cream, Skim Milk), Lactose, Butter (Cream, Salt), Sodium Caseinate, Yeast Extract, Citric Acid, Skim Milk, Blue Cheese (Milk, Cheese Cultures, Salt, Enzymes), Lactic Acid, Garlic Powder, Artificial Color (Yellow 6, Yellow 5), Whey Protein Isolate, and Milk Protein Concentrate. CONTAINS MILK INGREDIENTS. Here are the ingredients listed for the baked ones: INGREDIENTS: DRIED POTATOES, CORN STARCH, CORN OIL, SUGAR, MALTODEXTRIN (MADE FROM CORN), SALT, SOY LECITHIN, DEXTROSE, WHEY, WHEY PROTEIN CONCENTRATE, ONION POWDER, CHEDDAR CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), MONOSODIUM GLUTAMATE, BLUE CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), CITRIC ACID, ARTIFICIAL COLOR (YELLOW 6 LAKE, YELLOW 5 LAKE, YELLOW 5, YELLOW 6), SKIM MILK, NATURAL AND ARTIFICIAL FLAVORS, GARLIC POWDER, LACTIC ACID, DISODIUM INOSINATE, AND DISODIUM GUANYLATE. CONTAINS MILK AND SOY INGREDIENTS   They look a lot the same except for the baked product contains soy. What do you suppose is the hidden source of gluten in the regular Ruffles that is not found in the baked ones? Could you be mistaken in attributing your reaction to the Ruffles? Could it have been from gluten in something else you ate around the same time or even a non-gluten tummy event?
    • Katiec123
      Finding out I’m coeliac whilst pregnant

      By Katiec123 · Posted

      @plumbago on my blood tests I got 4500 and normal should be between 25-30 but they wanted me to continue eating gluten until a endoscopy was done and also biopsies taken. I’ve took it upon myself to cut gluten out today based on the research I’ve done about it during pregnancy 
    • plumbago
      Finding out I’m coeliac whilst pregnant

      By plumbago · Posted

      If you tested positive for celiac on labwork, I would definitely give up gluten.
    • Tanner L
      Bad Reaction To Regular Ruffles Cheddar and Sour Cream

      By Tanner L · Posted

      I have Celiac and had a bad reaction to the regular cheddar and sour cream Ruffles.  The baked ones in this flavor are apparently marked gluten-free, but watch out for the regular ones.  I wish I would have seen a post like mine, instead of one that was specifically referring to the baked chips from my google search, before I pulled the trigger.  Hopefully some day they'll require gluten disclosure on the ingredients, not just "wheat."  
    • Denise I
      Celiac Disease Dietician

      By Denise I · Posted

      I am trying to find a Celiac Dietician who works with the Celiac Disease Foundation.  They don't have to be located in my area because I can do video visits. Can anyone help with this?
×
×
  • Create New...