Getting Started On Gf Diet
Posted 31 July 2004 - 09:32 PM
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Posted 01 August 2004 - 05:48 AM
I have had diarrhea, gas, bloating, anemia, hypothyroidism, for years now. I was first diagnosed with celiac in my early 20's (I am now 41). After a year on the diet, with no change, the dr changed his diagnosis to Crohn's. The symptoms have never gone away..... I have been living half my life with this. Finally, 1 1/2 years ago, the blood test and biopsy confirmed, indeed it was Celiac Disease. But to this day, I still have not gotten rid of the symptoms, after 1 1/2 years on the diet. The dr. at my last visit brought up the possibility of "Refractory Celiac Disease". This terrified me. It scared me enough to do much more research than I had previously done. I have since learned that three things I continued to have had gluten in them -- also, I was sharing the same toaster as the rest of my family, utensils, pots, pans, etc. etc., indicating strong liklihood of cross-contamination. So now I am looking at it as though there is still a chance that I was continuing to be contaminated, and I am starting from scratch again. Of course, the alternative is accepting that it is refractory, and if you do any research on this, the prognosis is not good. That should be enough to scare you back into the gluten-free diet. It really is difficult, I admit that. I am a working mother, four young children, I am the only one celiac. Life gets crazy and hectic sometimes, and the possibility of slips are highly likely..... but just giving up and not even bothering is just going to cause you much more difficulty down the road.
Hugs to you, and I hope you look up refractory and learn what this disease can do to you.....
positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)
Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.
Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......
"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden
Laughter is the shortest distance between two people.
-- Victor Borge
"An optimist laughs to forget. A pessimist forgets to laugh."
"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Posted 01 August 2004 - 06:25 AM
Sticking with whole, unprocessed foods, and doing your own cooking makes it easier (not to mention healthier), and - depending on your cooking skills, which improve over time anyway - doesn't have to take much more time.
Don't forget that being depressed, and any tiredness that you may feel from the anemia, can also be connected to celiac, and sticking on the gluten-free diet for a while may help those symptoms as well. I know it's hard starting off... It looks like the whole world gets closed off to you, but with an effort, you start to realize how many things there are out there that you really can have. And there are some things you might never have tried before going gluten-free that you'll become aware of. (For me, it was rice cakes, millet (toasted, yum!), and quinoa.)
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 01 August 2004 - 05:38 PM
Positive DH biopsy 4/19/04
Posted 01 August 2004 - 07:55 PM
Please don't get off this diet! When I first started on this diet I was depressed,
frustated, confused, and mad at the world and everyone in it. Then I researched,
and found out what could happen if I didn't stay on it. I have seen too many
people with cancer, as a nurse, and I said to myself, I can do this, all i have
to do is learn this diet, which I have, thanks to this board, and other research.
I started to keep a journal, kept foods very simple. If I had an accident then
I could trace it back to find the offender. I learned that I also could not tolerate
dairy or tomatoes. I ate mostly chicken, mashed potatoes, rice, applesauce,
bananas, herb tea. For breakfast I usually have herbal tea, banana, scrambled egg
whites, or Van's Waffles. I bought a few gluten-free crackers with Progresso chicken
and wild rice soup, peanut butter and crackers, steamed rice with chicken
and celery and green beans. In the evening my husband usually grills a
steak, pork chops or chicken and we have baked potatoes. At night we
have strawberries, blueberries, with soy milk and my husband will have
Cool Whip. What I am trying to say is keep it simple. I have been able tonight
to have a delicious spaghetti dinner with meatballs and i didn't get sick.
It took me 6mos to get here but I did it and I'm glad I did...and you can too!
gluten-free since 11/03, neg biopsy, IGA elevated
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