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

Hives And Angioedema

missingcookies

By missingcookies
in Super Sensitive People

Recommended Posts

missingcookies Newbie
missingcookies
Posted

I found out i had celiac about two and a half years ago but i have never met anyone one with the same symptoms as me aside from my sister and other relatives.an im curious to see if anyone can relate.

when i first started reacting to gluten i was about 20 and my lips, eyes, feet, or hands would begin to swell inexplicably and occationally I would have severe stomach pain that i can compare only to labor contracctions. at first i took zertec thinking i had an allergy to something in the environment but i eventually relized it wasnt helping. i ended up seeing a number of doctors and specialists untill I spoke with a dietition at a hospital in Boston who suggested i be tested for celiac. it was difficult to persuade a doctor to intertain my concerns about celiac because apperntly not many doctors are familiar with the disease in Georgia. I began a gluten free diet immediately and eventually i was finally tested and diagnosed.

almost immediately after i had begun a gluten free diet the stomach pains, swelling and hives stopped alltogether. and dispite being diagnosed as infertile by numerous doctors my husband and i became pregnant right away. during my pregnancy i occationally talked to a dietition who advised me that the pregnancy may change my chemical make up and i could possibly be able to consume gluten without complications. for the first 7 months I stuck to my rigid gluten free diet but during my last few months i became a little lax and by the end of the nine months i was eating whatever i wanted with no side effects, I thought for sure i was cured but after i delivered I went back to a mostly gluten free diet. and i had no more reactions untill just recently when i stopped nursing my son.

for the last month i have been back to my rigid no gluten diet but just two days after i stopped nursing i woke up with my whole body covered in large red hives, i had never had hives this bad. the hives even wrapped around my neck and on my face and scalp. they lasted bout three days and then i began to swell as well. its been about two weeks and everyday I wake up with new hives and a severely swolen body part. today my feet are so large I am un able to walk and yesterday my fingers were so swolen i couldnt even manuver them to pick up my baby or complete ordinary tasks. along with the edema and hives my stomach is in a constant state of pain.

I really wish i hadnt tested the waters now Im afraid that i will suffer from these extreme affects forever. my sister has a theory that all the gluten that i had consumed while i was pregnant is just working its way out and after my system is clean again i will be able to control my reactions with diet alone.

Im so depressed , has anyone expeirenced anything like this? or am I alone?

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

Celiac.com Sponsor (A8-M):


weluvgators Explorer
weluvgators
Posted

I don't have much time right now, and it will be weeks before I am back to my regular connection. You are not alone. My dd had a horrid series of episodes with this last summer. She simply ate more than usual amounts of "gluten free" food after being on a very strict whole, unprocessed foods diet. It was awful. We were using Zyrtec and Benadryl with some improvement, but she still ended up with reactive arthritis in the whole deal which was horrible. Even with Zyrtec and Benadryl she was having hives full body, even when simply walking through a grocery store with an active bakery. It was scary.

Our family has to follow a very strict gluten free diet (we are also dairy and soy free too). We do carry antihistamines and epipen for her, as we have had some odd symptoms that appear to be circulatory in nature. We have also consulted with doctors that specialize in gluten intolerance (the celiac specialists were all telling us that it seemed "allergy" derived in our brief conversations with them). We have made progress in improving her overall health, and we identified an infection that we treated as well. It has been a very complex puzzle for sure.

She still has issues with environmental gluten exposures, and we continue to be super careful with dietary choices. Simple, whole foods sourced as close to the farmer as possible (preferably direct from farmer to disclose all conditions). I hate to say this, but it is nice to feel that *we* are not alone! I haven't met others that can relate to these types of reactions, and it can be incredibly stressful. I hope that you figure this out. Oh!! We were using Naproxen to help us get out of the really bad cycle this summer, and it worked wonderfully well. She did have to use Prevacid in conjunction to help protect her intestine, so it is a horrible long term solution. But it helped us get through a few weeks of absolute misery. We ended up in rheumatology to help us after the second hospitalization. And our medical reports all indicate that it is uncertain if this was a result of her celiac disposition.

Good luck getting this under control.

  • 3 weeks later...
Fort Mac Celiac Newbie
Fort Mac Celiac
Posted

I also break out in hives when I have any gluten - I have been lucky that Benedryl works pretty quickly for me. However I did have one extremely severe incident that put me in the ER with hives in my mouth and the inability to swallow.

Hives are like the devil...lol. I always make sure to carry a large supply of Benedryl just in case :)

  • 3 weeks later...
thleensd Enthusiast
thleensd
Posted

My thoughts - either you have a wheat allergy in addition to Celiac OR something kind of like what I went through... they deemed it "chronic idiopathic urticaria and angioedima" ... which is also an autoimmune issue. I have no allergies. I had crazy/terrible hives and swelling of seeming random body parts (eye, lip, ball of foot...). Benedryl, claritin, zyrtec never worked. I had a strong antihistimine (hydroxyzine) that kept me hive-free, but in a sleepy stupor for about a year. Eventually I stopped taking them and it went away.

I wasn't diagnosed with Celiac until years later, but I'm not convinced that they're completely unrelated. I don't think it's a Celiac symptom, but like many autoimmune illnesses, they may tend to coexist.

There are a few bits and pieces of info connecting the condition with other autoimmunes: Open Original Shared Link

and I read in a medical journal at one point in time that there was enough information that the condition may have a connection to Celiac enough to warrant more research... but that research to my knowledge has not been done.

I posted here about it a couple years ago. May or may not be interesting to you. =)

Edit: PS. I'd definitely recommend the hydroxyzine. It worked. And I'm sure I'd have the support of the folks here: a strict gluten free diet is THE way to go!

  • 4 months later...
bcberry Newbie
bcberry
Posted

I also have these troubles. the first time I ever had hives, it was awful. My doctor never diagnosed me with celiac disease but with the Idiopathic chronic hives and angioedema. I went into remission for about 2 years during which time I got married and became pregnant. And when at 5 months old, I stopped nursing, the swelling and hives have come back. I have stopped eating gluten and also have gone on the candida diet. I take 2 tbls of organic, gluten free, unfiltered apple cider vinegar (not the kind you buy in regular grocery store!!!) in 8 oz of water. This brings my body pH back into balance. I also started taking super probiotics to help restore my intestinal flora. I cannot believe how well this regime is working! I still have a few hives here and there and a few facial swellings (this morning, in fact) but it goes away quickly upon waking, and the hives don't itch. Try this it works!!!!

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. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
    3. Scott Adams
      - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate...
    4. Scott Adams
      - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a h...
    5. Scott Adams
      - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,091
    • Most Online (within 30 mins)
      7,748
    Condon
    Newest Member
    Condon
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Cold/flu or gluten poisoning?

      By Scott Adams · Posted

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Celiac Screening

      By Scott Adams · Posted

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
×
×
  • 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.