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

Ack! Is This A Wheat Allergy Too?

gatita

By gatita
in Coping with Celiac Disease

Recommended Posts

gatita Enthusiast
gatita
Posted

For various reasons, doc and I decided I should do a mini-gluten challenge, part of figuring out why I still have major problems with D. So I carefully planned it out and last night had a few Trader Joe's dim sum in which I was sure the only ingredient that would bother me was the wheat.

Immediately my eyes, lips and face swelled up and my eyes got insanely itchy and watery. My face is still swollen the next day.

(Other results: My joint pain was off the hook this morning after improving during 3 months gluten free. The gastro symptoms are also there, but no worse than they've been with no gluten — which is to say, bad, but not stay-home-from-work bad.)

My doc has already diagnosed me as gluten sensitive/intolerant, but does this mean I have a wheat allergy in addition to that? My understanding is that the runny eyes and swelling are allergy symptoms, not intolerance symptoms.

I just plain feel like crap and am glad it's over. Not doing this ever again, I hope!

ps. I had the same swollen face reaction a month or two back when I accidentally ate so-called tomato paste that contained "wheat gluten."

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

Celiac.com Sponsor (A8-M):


Raining Skittles Rookie
Raining Skittles
Posted

From what I understand, medical professionals many times do not truly understand Celiac or gluten intolerance and "intolerance" can certainly be an allergy.

I'm sorry to hear that your doctor recommended you intentionally gluten yourself. I hope your symptoms subside quickly.

Takala Enthusiast
Takala
Posted

It's not possible to tell, because the dim sum could have contained so many different ingredients. But don't eat that, again, and you'd better start carrying benedryl antihistamine with you.

shadowicewolf Proficient
shadowicewolf
Posted

I would also reccomend getting a epi pen just in case to have on hand.

gatita Enthusiast
gatita
Posted
  • Author

Skittles, my poor doc went along with me on this, it was my idea... I wanted to be totally sure my chronic D is caused by gluten and not something else because 1) I still have the D after 3 months gluten-free and 2) I couldn't have a biopsy for financial reasons and because I have a bad duodenal ulcer that's too irritated for a 'scope. I had mixed blood results and was diagnosed from symptoms, elimination diet, low lymphocytes, elevated anti-gliadin IgA, and borderline ttg.

I'm sure the other dim sum ingredients weren't the problem — I've had all of them (pork, corn starch, etc) with no issues.

Yeah, carrying benedryl and epi-pen sound like good ideas.

rosetapper23 Explorer
rosetapper23
Posted

Three months on a gluten-free diet might not be long enough to clear up the D. I had D issues for 18 months--and I was very strict about following the diet and didn't have issues with other foods. However, what helped me was taking L-glutamine. That's what finally cleared it up.

gatita Enthusiast
gatita
Posted
  • Author

Thank you rosetapper... I knew I had to give it some time, but wow, 18 months. I will try the L-glutamine right away.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Yeah, carrying benedryl and epi-pen sound like good ideas.

I ended up with anaphylactic reactions to seeds after I removed them during a very strict elimination diet along with a host of different reactions to many other foods. Allergy type symptoms are nothing to mess with as they often become worse with each accidental exposure. Call or email your primary to explain the reaction you experienced. Mine ordered epi pens immediately.

I also had follow up allergy testing for all my intolerances - I am neither IgE or IgG allergic to any of my intolerant foods - doesn't make the reactions any less severe, so yes you can have allergic type reaction to an intolerance.

GFinDC Veteran
GFinDC
Posted

Hi,

If you decide to do another food allergy test for some reason, be sure to do it at the doctor's office. That way if you have a severe reaction and can't breathe, they can try to save your life. That would be good, eh? My ex had her son tested for wheat alergies at the doctor's office and he had a bad reaction that was unexpected. They were able to take care of him but it wasn't looking too good for a while. The doctor did not expect the severe reaction that happened. But being in the doctor's office probably saved his life.

gatita Enthusiast
gatita
Posted
  • Author

Wow, GottaSki and GFinDC, those are super scary stories!

I am emailing my doc today to share the results... and trust me, I don't plan on EVER eating wheat again. I got my answer, which was all I needed.

Whether I have other issues contributing to the D or not, I now know without a doubt that wheat and/or gluten is indeed a serious problem for me.

GottaSki Mentor
GottaSki
Posted

Wow, GottaSki and GFinDC, those are super scary stories!

I am emailing my doc today to share the results... and trust me, I don't plan on EVER eating wheat again. I got my answer, which was all I needed.

Whether I have other issues contributing to the D or not, I now know without a doubt that wheat and/or gluten is indeed a serious problem for me.

It was very scary...

While I have not had to use the epi-pen yet - I do feel better knowing they are available and that my family knows how to use them.

I avoid seeds as I would gluten so no problems thus far. I do use benedryl for more mild reactions I have had to other intolerances.

Bottom line is now that I am aware of my potential problem foods and prepared for possible reactions -- I am no longer scared.

GFinDC Veteran
GFinDC
Posted

Yep, scary stuff. You can avoid if you know the allergen is present, but you may not always know. So being prepared ahead of time is important. Carrying an EPI-pen and a med alert card is a good idea. You may not be able to help yourself, so it is important to let others know what to do.

Open Original Shared Link

gatita Enthusiast
gatita
Posted
  • Author

Wow, thanks for the info and link, very informative. I did once have an anaphylactic reaction once to tetracyclene in the doc's office, so they gave me epinephrine right there. I didn't know till now that means you can be more likely to react to other things, too.

GFinDC Veteran
GFinDC
Posted

You are quite welcome Gatita. There is something called cross-reactivity with allergies that you may be affected by also. Cross-reactivity is when the allergic reaction kicks off to other foods besides the main allergen. Be wel! :)

gatita Enthusiast
gatita
Posted
  • Author

Thanks. Here's something interesting. I accidentally did my own at-home allergy skin scratch test for wheat!

I decided since I had that allergic reaction to throw out a bag of stale bread my (now gluten-free) housemate had been saving to make bread crumbs.

My forearm got accidentally scratched a little by the stale, rough bread... and guess what, the scratched area is still red and raised seven hours later. (No other reactions, thank goodness).

Guess I won't have to spend money on that test! :)

GFinDC Veteran
GFinDC
Posted

Ha Ha, that's great test! :)

gatita Enthusiast
gatita
Posted
  • Author

I think I'm going to add this to the "things doctors say" thread. I emailed my doc about the allergic reaction and concerns about my constant diarrhea since June. Another doc was filling in for mine, and she wrote back today saying, "Sounds like you're getting better."

Arrgghh!!!

GFinDC Veteran
GFinDC
Posted

I think I'm going to add this to the "things doctors say" thread. I emailed my doc about the allergic reaction and concerns about my constant diarrhea since June. Another doc was filling in for mine, and she wrote back today saying, "Sounds like you're getting better."

Arrgghh!!!

Well gee, as long as you are getting better constant D... :D

GottaSki Mentor
GottaSki
Posted

I think I'm going to add this to the "things doctors say" thread. I emailed my doc about the allergic reaction and concerns about my constant diarrhea since June. Another doc was filling in for mine, and she wrote back today saying, "Sounds like you're getting better."

Arrgghh!!!

Oh Goodness...do make sure you talk to your doctor once s/he returns.

Archived

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

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


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.