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Is It Just Me?


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21 replies to this topic

#16 Guest_Florida Jean_*

 
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Posted 11 March 2004 - 04:59 AM

I certainly have to agree with all of you.

My sister, who has NO symtpoms, was tested and is negative. But...my daughters and each has a child that should be tested won't do so. Maybe part of it was because of my complaining about not being able to eat all the foods I just loved. The one gr/daughter went to a pediatric GI dr. and he told my daughter the little one didn't have enough symptoms to forego an endoscopy and to "put her under for this." What causes her bloating, etc?

Yes, I too, meet people who I know must have the intolerance, too. In fact, met a friend in the dr.'s waiting room. We began discussing our health problems [those you normally don't discuss i.e. diarrhea, etc] She said they can't find her problem. I told her to ask for the blood test for celiac. A couple of months later she came to visit with a darling angel magnet for my refrig. for steering her in the right direction as she finally felt better after all these years. Yes, she is celiac, too!

I guess we just have to stay on our soap box and try to save the world....or at least the world who is intolerant to wheat! Hurrah! :rolleyes:
Jean
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#17 plantime

 
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Posted 11 March 2004 - 08:26 AM

how funny to read this! My mom died because she kept eating foods she was not supposed to, and it made her bowels rupture. Her dad was very Irish, and had crippling arthritis! My friend has a son that cannot breathe, is obese, and has diarhea all the time. She suspects food allergies, but refuses to consider celiac disease because he is not "wasting" away! My diagnosis came from eliminating gluten, no blood tests or anything, the doctor said eliminate, and see how I feel. I started losing weight, could breathe easier, and do not hurt or feel psychotic! I just wish people would at least get tested!

~dessa~
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#18 guppymom

 
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Posted 11 March 2004 - 09:41 PM

Our diagnosis came through my eldest daughter, who had intense stomache pain that kept going undiagnosed. I have had gi issues for years and years and finally got to the point where i couldn't go anywhere without knowing where the bathrooms were. Her doctor was really tired one day, put his head against the wall and said, "tell me all". Now, he had just diagnosed a celiac young man a few weeks before, so he was in the right frame of mind. My daughter never had the runs, has always been very thin although she eats everything in sight, but had extreme fatigue, headaches, joint pain(which she'd been in pt for). The serum test came back positive for her, so we talked more and he questioned me for some time about my lifelong symptoms. I'd been trying to be healthier, so I had really upped the whole grains, like the pyramid says to do, and had been getting sicker and sicker. We talked about my youngest daughter, who would display classic food allergy type reactions and become very hyper and irritable. We talked about my mom, who died from intestinal cancer 6 years ago and had gi problems for many many years and was misdiagnosed all over the place. He told me to start us all on a gluten-free diet immediately and if i felt better after a couple of weeks, to go back in and get tested from my own doctor. We have been, except for the occasional total accidents, gluten-free from that day, Oct 30th 2003. Of course I started to feel better almost instantly, and when I went in for my own test it of course came back negative. Well, it was low positive, which my doctor refused to acknowledge as positive. I don't fit the profile in the obvious respects. I am overweight, and that there is the first eliminator. He told me I could begin eating gluten foods again and then retake the test, and I cried. I talked to my gyn, who is a wonderful doctor, and she looked at me and said "you don't need his stupid test result to tell you what you already know". My health has improved a million percent. 5 months ago I honestly felt that I was dying and helpless. I am regaining health, and hope, and able to put into perspective all the questions. I have answers and know that I will gain more as time goes on. I have lost weight, and have not had one regret for missing gluten. Oh sure, like I've posted other places, I miss the ease of food prep. I miss Pizza Hut. But man. The pain. I don't miss the pain!!!!!

I have a good friend right now who is celiac, i'm sure of it. She is a Physician's Assistant, and refuses to entertain the idea. Okay. I see her being treated for IBS, acid reflux, fibromyalgia, joint pain, migraines, SADD, insomnia...I guess I just don't understand why it seems reasonable to take a pill for each individual issue, and have them not work, but not to just stop consuming gluten for a trial period. My husband says that they just don't hurt badly enough yet.

I wish my mum could've gotten a diagnosis. She died way too early for me.
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#19 plantime

 
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Posted 12 March 2004 - 06:17 AM

guppymom,

I understand how you feel about your mom. My mom knew, but refused to give up her favorite foods. She died a terrible death, shortly after she turned 63. Her brothers and sisters exhibit symptoms, but won't give up the food. I am glad that you are, your children will love having you around for a long time. I agree about not wanting to go back on gluten just for a test. I accidently ate some yesterday, and I feel so miserable, it just isn't worth it. I'll spend the rest of my long, healthy life explaining my choices to people! :rolleyes:
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#20 guppymom

 
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Posted 12 March 2004 - 08:52 PM

Absolutely! I felt that someone was dragging me back into a pit of complete pain and misery. I just sat and cried and felt so trapped! If I'd been thinking clearly I probably would have reached that conclusion faster on my own, but man! The panic!!!
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#21 debmidge

 
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Posted 13 March 2004 - 05:28 AM

If I were a millionaire I'd like to offer free testing to people. My sister in law refuses to get tested, even though her brother has a raging case of sprue and she shows the symptoms big time herself. Her reason: no health insurance & it'll cost too much. Denial is more like it; she is an avid lottery & bingo player and doesn't mind shelling out $5 for a pack of cigarettes. Also doesn't need to work as husband makes enough $ for her to stay home since they got married. I'd like to make a bet with her: if blood test says she has it, she pays for test; if blood test says she doesn't have it, I'll pay. That should interest her "gambling" instincts!
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#22 andyc

 
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Posted 16 March 2004 - 03:42 PM

when you walk down the gluten free aisle in the supermarket there are always people who are shopping for wheat free food. Most of them have not been tested and many do not know what celiac disease is. They have been put on a wheat free diet by a nutritionist. When I mention celiac disease i tell them to come to this web site and find out about it.

I know 1 other person who has diagnosed celiac disease. Her 3 children also have it.
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