35 replies to this topic

[BamBam]

watkinson

You have an amazing story to tell. I also went through the same diagnosises, doctors as you have. From 1986-1996 I had many colonoscopies and upper Gi and lower GI and lab work and everything else you can think of. I was delivering some Avon one evening to an elderly lady and she says, "Bernadette, what is wrong, you just are not your self these days." So I told her the whole story and she suggested I give up wheat. So I thought that meant bread and pizza crust. So I gave up bread, and felt an immediate miracle of well-being. However I did not understand that wheat/gluten is in pretty much everything I buy at the store. I continued eating Rice Chex and Corn Chex, and I felt better, but not 100%. So in June of last year I joined this message board and learned nearly dozens of things, and on August 6, 2004 I went totally wheat/gluten free. I am almost 100% now! Some people tell me that since I wasn't diagnosed by a doctor that I am wrong and it is just IBS or something I have to live with. To get testing done now, I would have to eat wheat/gluten for six weeks, screw up my insides again and have a doctor tell me what is wrong. Well, this time I'm not going to the doctor. I know that I feel 100% on a gluten free diet. I don't need anyone to "diagnosis me."
I am so glad you found out what is wrong.

BamBam

[watkinson]

Hi guys, thanks for the notes. Your right Stef, a tree might have been good too.

Being a celiac is so wierd. When I was still suffering I lived daily on anti-diareah meds. at least 2, sometimes as much as 4 a day. I would feel okay at times but then I would get nausiated, so, of course, what do you eat when you feel sick? crackers, toast, chicken noodle soup, you know, all the mild stuff you think will make you feel better. Initially it did, but after an hour or so of course I would feel worse. Then the attacks would happen! sometimes daily, but always at least 4 or 5 times a week. I would always say having a baby was nothing, I could handle that pain anytime. These attacks were like last stages of labor, but add an entire torso charlie horse, add shooting pains going up and down my legs and arms, my hands and feet would feel prickly like they were asleep. I would throw up over and over, I think sometimes I would go into like a mild shock from the extreme pain. I thank God I found out what it was.

I also made food mistakes in the begining. Especially when I did'nt know it was gluten yet. I was still sick alot but felt so much better. Most of my stomache problems were gone, but every other problem was only a little better It was'nt until I discovered that it was celiac disease and did a ton of research. Some of the research is confusing. One place will tell you vinegar is okay and another will say no, the same for oats, ect. . Each person has to figure it out for themselves, how it affects your own body, and like many others have said makeup, body lotion soap, ect. is all important. Sometimes it's hard to get an answer from manufacturers. They often just basically don't know because they get their ingredients form ouside sources. You basically have to go organic. Keep researching. Thank God for pres. Bush and his food labeling act.!!

Over ther last year since being diagnosed, getting rid of all gluten mostly did the trick. All stomach problems are completely gone! My thyroid corrected itself and most of the body aches and pains dissapeared. But I say most. I would still have that feeling that my elbows were broken at times and would still get shooting pains going down my arms, and my hands would fall asleep. I wondered if maybe it was caffiene, but getting rid of it did'nt seem to make a difference. Then I tried sugar...no, Then I noticed it seemed to be corn. guess what? Made a huge difference I have been off all corn and corn related products (corn oil, corn syrup) for over a month now, WOW the pain is SOOO much better! no more hands asleep no more waking up in the middle of the night tossing and turning because my arms and hands and back hurt so bad. My back pain is crazy better! I have suffered from that since JR high school. I'm not saying all of it is 100% gone, but it's so great that it feels like it.

I believe that it takes the body a long time to fully recover, after all it took a long time to break down in the first place. I don't miss anything I've given up, if I feel better I'm thrilled that it's out of my life. Doing research is a blast, finding foods I can eat is like a hid and seek game Life is good.
Hugs to all, Wendy

[stef_the_kicking_cuty]

Some people tell me that since I wasn't diagnosed by a doctor that I am wrong and it is just IBS or something I have to live with.

Hello BamBam,

Yeah, I heard that a lot, too, unfortunately. I hate people like that. Diagnosed or not diagnosed. We all no, that gluten makes us sick, so why not withdraw completely from gluten? I'd say, the docs probably could be more wrong, then what your own feeling tells you here. My whole life I had an uncomfortable feeling with foods, that harmed me (what I know now, i didn't really know it then, of course), so my body always knew somehow. Strangely enough I always found it eeeeew, to drink from other peoples bottles or eat with their forks or something like that. You know, for example, when you travel and don't have enough dishes. Now I found out about the cross contamination. Isn't that strange? And when I look back actually ALL the food that isn't good for me, i always knew somehow, it just never REALLY occurred to me.

And so the other people should just sh... up. Sorry for my language, but they make me so angry. Who are they to tell you, you have to live with it? No, you DON'T have to live with it, because you already found out what causes it, period.

And some (not all) docs use IBS just as a diagnosis, when they don't really know, what it is you have.

Hope you all stay healthy. Hugs, Stef

[celiac3270]

Really happy to hear you're feeling better on the diet, Wendy.

I know what you mean about when you felt sick--eating all the bland foods that yo thought would make you better. It's rather ironic that when I felt sick I'd eat Cheerios, toast, saltines, or some gluten-containing chicken broth....all the stuff that caused the symptoms in the first place. I've always thought that, but never really voiced it...good point

My whole life I had an uncomfortable feeling with foods, that harmed me (what I know now, i didn't really know it then, of course), so my body always knew somehow. Strangely enough I always found it eeeeew, to drink from other peoples bottles or eat with their forks or something like that. You know, for example, when you travel and don't have enough dishes. Now I found out about the cross contamination. Isn't that strange? And when I look back actually ALL the food that isn't good for me, i always knew somehow, it just never REALLY occurred to me.

Stef, I know what you mean...I started noticing that every time I ate pizza, I'd get sick that night...just never put two and two together. I also found it gross to share bottles, etc.... Funny how our instincts sort of....guide us on some of these things, even though I couldn't pinpoint it to gluten or wheat.

[Canadian Karen]

It's quite interesting what our instincts to for us. Here is a story I will share:

When I was a kid, my mom had a huge problem with getting me to eat. Nobody could figure out why I had such a poor appetite. Also, I was always anemic as a child. I can remember going for the weekly pin pricks in my finger.

Anyway, the only thing my mom could get me to eat back then was potatoes. Mashed potatoes, baked potatoes, french fries. Morning, noon and night, that's all I would eat. The pediatrician told her to just go ahead and let me eat them, that sooner or later my appetite will pick up. Looking back, I realize now that it was my body's way of telling me what was safe for me to eat.

I think our bodies are quite amazing......

Karen

[celiac3270]

Wow--that's so funny! I was the same way pre-diagnosis. I had a really poor appetite, as well. I always finished my potatoes, but if we had spaghetti for dinner, it would seem to multiply in my bowl ....wow, it seems like we all have a lot in common with regards to eating.....