I was diagnosed with celiac disease about 3 years ago. After 10 very long years of mis-diagnosis I finally had a legitimate cause for my many health problems. I experienced virtually all of the typical symptoms of a celiac. Severe depression, stomach upset, severe bowel problems, severe skin rashes, aching joints and bones, malnurshiment and generally feeling very unwell.
Dealing with being a celiac has not been an easy road. Finding safe good tasting food is very difficult and discouraging, although I try to be very careful with my diet. Going out for dinner turns out to be more effort than its worth sometimes. At times I feel guitly about putting my family and friends through the trouble of finding a restaurant that might have something safe on the menu for me.
I have had my three children tested and so far they are negative. I have been advised to test them throughout their lives to ensure that they aren't celiacs.
I invite you to share your stories with me and the many other visitors to our site!
Tamie
14 comments:
Hi Tamie, my wife was diagnosed just like you after a long period of time, the doctors missed all the now obvious signals. We couldn't meet similar people so we set up a local Glute-Free Group, which now has 60 members and is growing each month, from youg families to older people (like us).
Take a look at our free web site www.glutenfree-crawley.org.uk, there are lots of GF Recipes, which you can download and lots of information about the Group, ltes know what you think
Don Tombs Organiser & Founder CGFG
email: crawleyglutenfreegroup@hotmail.co.uk
My husband was diagnosed about a year ago with Celiac. He does seem to be able to eat small amounts of gluten without issue. He sees one doctor who says, if you can tolerate it, eat it. The other doctor say absolutely not-do not eat any of it. He is having a really hard time with the diet and has lost lots of weight. What are your feelings?
Hi Tamie,
I know it is hard to feel lucky after 10 years of misdiagnosis. I was misdiagnosed after over 25 years! I was missed by big centers like Mayo Clinic, U Alabama Birmingham, U Florida Shands, and University of Miami.I have survived 3 near death experiences in the last 10 years.
After almost a year and a half, I am still trying to get back on my feet. It may still take at least a few more years.
You hang in there too.Good luck.
Jeff
Hello everyone and thank you for visiting my blog. It is really interesting to hear everyone's different stories and experiences with celiac disease. I really appreciate all of the words of encouragement as well!
In response to the blogger who asks about her husband consuming gluten, I can only add what my doctors have advised me. That is that no amount of gluten is safe. Even though he may not have symptoms, the gluten may still be causing damage. Again, I can only pass on the advice that I have been given. Good luck!
Hi Tamie
I hope your doing well. After learning more about Celiac (and the work of 2GPharma) I understand better what you have gone through over the past 10years.
I wish you all the best.
Todd
I found this site in hopes of a small amount of info on my problem (other than I have Celiac)
My hemorroids have gotten way worse with the D that I alway have now. Have you heard of anyone having this problem and if so....let me know my options.thanks!
can I buy it in Canada and mail it back from New York?
To anyone in the Atlanta GA area: Shane's Rib Shack has a GF Menu!
I'm so excited that I can actually eat in a restaurant and not worry about being glutenated.
Hi. Why is it that America, the Land of the Free and the Home of the Brave, does not offer the Biocard Celiac home test? I even asked a gastro doctor to check me for celiac, and he refused. It must have something to do with the lousy insurance companies. Furthermore, if the doctors can keep patients coming back time and again because they are ill, it is not cost effective to diagnose Celiac.
I was diagnosed with Celiac Disease nine months ago. The first couple of months I felt so much better. Now, I'm fine with the diet, anything to feel better but the depression seems worse? My bones/joints hurt all the time, especially after 4pm. Social and work lunch situations are hard. I feel pretty good in the morning and the later it gets the more run down I feel. Is this normal? Just wanted to vent.
Interesting story you got here. I'd like to read a bit more concerning that matter. Thanx for giving this material.
Sexy Lady
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My daughter and I lived in a home with elevated mold spores for 8 months...we have very poor immune systems, contracted H1N1, mono, liver dysfunction, candida infections, athritis, acute glaucoma, mouth ulcers, hives, stomach issues...now we have been diagnosed with Celiac as well...we are hoping that once the mould is out of our systems, we will regain our health..it's been a heck of a year..and it is a long and expensive climb...just venting..and trying to deal with the worry of this disease...
Me again..forgot to also complain about the number of food intolerances we now have..and EPI pen for food additives...due to the hives, hoarseness etc...,also memory loss, depression...the list goes on..it almost seems like I am making it all up when I try to explain to people that before the mould exposure, we were `normal`..but then the worry kicks in again and the tediousness of trying to figure out what to eat, gluten-free, but also allergin free...wears us out..
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