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culhanegirl

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About culhanegirl

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  • Gender
    Female
  • Interests
    I am married and have two small boys who also have Celiac and casein sensitivity.
  • Location
    Arizona
  1. Thank you for responding. I am aware of Dermatitis Herpetiformis and wanted people to know that hives can also be a symptom so that if they are googling hives my post may come up and they might investigate if Celiac may be the issue for them. There is research linking hives and Celiac but it is still not included in the symptoms list of many web sites containing information on Celiac disease.
  2. I tested with them and found out I was also sensitive to Casein as well as gluten which helped a lot because I was still having symptoms after eliminating gluten and was getting really frustrated and confused. After also eliminating casein my symptoms went away. I also had my sons tested even though they showed no symptoms. They tested positive and we are now all on the Gluten-free Casein-free diet. My youngest (19 months) is small for his age and this may be due to the gluten. It has only been two months so I am curious to see if his growth will be positively affected. My five year old is better behaved since off gluten and dairy which is all he ate before!
  3. I do not have hyperthyroidism but I had a high thyroid antibody count before I went gluten free and now after 5 months gluten free my antibody count is now in the normal range. My endorinologist says this rarely ever happens (level going down) and thinks it is because I am now not eating gluten. So it appears my body is healing itself.
  4. Hi everyone, I just want to share my experience with chronic hives and how I found out that undiagnosed Celiac was causing my hives because hives are not a common symptom of Celiac and some people may be suffering needlessly. The short version is that I had severe chronic hives and angioedema for six months. They were so bad that I had to quit my job. I was on prednisone, zyrtec, singulair, and zantac, and I still had to go to the emergency room occasionally to get a shot or IV of prednisone. I saw my regular Dr. many times, an allergist/immunologist, and many different emergency room Dr.'s. I had many blood tests including RAST allergy tests which stated that I was not allergic to anything. THe Dr.'s said I would just have to take medication until it just went away on it's own (why do they always say that?). Anyway, I couldn't accept that as an answer. I read somewhere that a Dr. would rather see a live tiger walk into his office than a person with chronic hives! When you can't sleep because you are being tortured by hives as big as plates and a swollen face you look for answers. In my case I found out I have Celiac disease. I figured it out on my own through trial and error and looking around on the internet. I got lab work to confirm it. Since Celiac is not an allergy I tested negative for any allergy to wheat. No Dr. suggested Celiac. I also tested positive for antibodies to the protein in milk called casein (at Enterolab). I stopped eating any foods containing gluten and casein (very hard) five months ago and my hives have gone down to one small patch every other day and I just take one Zyrtec and they go away in 20 minutes. They have progressively decreased since I stopped eating gluten and casein and they are almost gone completely. For those of you with hives who found this post by googling "hives" and think Celiac could possibly be a cause for your hives, do some research. If you get blood work and it comes up negative that does not necessarily mean you don't have it. You can also be gluten sensitive without having Celiac. Also, you have to be eating gluten for the tests to be valid. I stopped eating it and noticed an improvement and then ate some bread and had to go to the emergency room because of the breakout of hives and angioedema. Anyway, I was able to end my suffering due to the information I learned from message boards and I vowed that if I ever figured out what was causing the torture I was going through I would go back and post because I learned so much from the internet that led me to figure out what was wrong with me. Also, I want to add that I also had very high thyroid antibodies that are now down in the normal range after five months on a gluten free diet. Anyway, hang in there and do your own research. If I had listened to the Dr.'s and just took steroids and "waited for it to go away on it's own" I would still be suffering. I also had my two sons (age 19 months and 5 yrs) tested at Enterolab and they also tested positive. They do not have any symptoms but are now on a gluten free diet to prevent any health problems. Now I am grateful for the hives because if I hadn't had that hell than I wouldn't have found out about Celiac and would have never had my boys tested. Anyway, so much for the short version! Tina
  5. Hi Mark, I completely understand what you are going through. I have had hives for the past five months and let me tell you there is hope. I have been on steroids and three prescription antihistamines and still had to go to the emergency room three separate times to get a steroid and benadryl IV because I was literally covered with hives as big as dinner plates and had swollen lips, eyes, jaw line, etc. It is like torture!! But after going gluten free I noticed a dramatic difference within two weeks with the hives completely going away by the six week mark. However, at week 7 I had a really bad episode where they returned in full force. I think I got glutened by processed foods that were cross contaminated or by my well-meaning mother who made me a gluten free birthday cake. Anyway, since that time I have eaten only foods I prepare myself and nothing packaged and no restaurant meals. So basically I have been eating fresh fruits and vegetables, legumes, and meats, and salad dressings I make myself. It's a pain but I will do anything to not have the hives. It's working because I have not had the hives since I recovered from the last attack two weeks ago. Make sure you watch out for cross contamination in restaurants, in processed foods (even foods that do not contain gluten but are made in factories that make products with gluten), and even in your own home if you live with others who eat gluten. Hope this helps. Hang in there, it does get better. And in a way the hives helped me because I have been trying my whole life to eat this healthy and it took fear of tortuous hives returning to make me eat this way! Tina
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