4 replies to this topic

[missingcookies]

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?

[weluvgators]

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.

[Fort Mac Celiac]

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

[thleensd]

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....nd-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. =) http://www.celiac.co...and-angioedema/

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!

[bcberry]

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!!!!