Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Hives And Angioedema
0

5 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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: http://www.suite101.com/content/rashes-and-hives-a12977

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!

0

Share this post


Link to post
Share on other sites

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!!!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,133
    • Total Posts
      919,529
  • Topics

  • Posts

    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,168
    • Most Online
      1,763

    Newest Member
    Natalie1980!
    Joined