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aklap Joined: 02 Oct 2004 Posts: 8786 Location: WI, USA	Posted: Mon Oct 24, 2005 6:24 pm    Post subject: Comments: Our paths to GF'dom Thanks everybody for sharing their stories!! It is nice to have a little background info on y'all Our Paths to Gluten Free-dom _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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aklap Joined: 02 Oct 2004 Posts: 8786 Location: WI, USA	Posted: Tue Jan 31, 2006 11:52 am    Post subject: Jim, Thanks for sharing your story! I really do believe that sharing our stories help others...they see themselves in those stories and it starts them thinking "Maybe I have this problem too" and check into it a bit further. Something like 6-8% of type 1 DM patients also have CD. It becomes the chicken and the egg thing. You may have seen studies out here suggesting patients with type 1 DM should be tested for CD. Sounds reasonable to me. I also have to say...hang on to your doc. It sounds like he has a handle on CD. Him telling your to have your family checked...KUDOS to him!!! _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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aklap Joined: 02 Oct 2004 Posts: 8786 Location: WI, USA	Posted: Tue Jan 31, 2006 6:09 pm    Post subject: NickisDragon wrote: I've never had all the horrendous symptoms you people have dealt with so I guess that makes me very lucky. As a child I caught EVERYTHING that was going around--including scarlet fever. My teeth were weak and crumbly and my nails paper thin. I usually had some type of bronchial something. Coming from good Polish peasant stock, the cure for everything was food and, of course, it was the wrong food--lots of grains and starches. I was forced to drink milk to build up my teeth and nails--I hated milk. (We don't even discuss the folk remedies!! ) I became overweight with bad teeth and nails and I've lived like that all my life and thought it was "normal". My energy levels were always low and I would overeat to gain energy--brain fog does that to you! I would always lose energy as I ate, sometimes becoming too tired to finish my meal. I never ate breakfast 'til around 3 pm because, if I wanted to get any work done, I had to do it before I ate. After I ate, I was useless. Since I'm a type II diabetic, I'm supposed to keep a regular meal schedule and I'd get the lectures about my eating habits from the doctor. When I would explain WHY I didn't eat 'til later, they just thought I was nuts. Around 8 months ago, my mother started having severe bouts of diarhhea and 4-5 hours of cramping. She's lost 60 lbs during this episode and was becoming afraid to leave the house because of "accidents". Her doctor submitted a blood test and it came back positive for Celiac's. I started doing some research for her and some lightbulbs began coming on. I went GF and began to feel so much better. I sent for the Enterolabs test kit and it came back positive for the HLA-DQ8 gene, antigliandin 69 units, transglutaminase 28 units, anti-casein 41 units. Now, if gluten slips in, I know it within 20 min or so. My mother was just in the hospital and the doctor there advised her that she does NOT have CD and she's thrilled to death because she's been fussing about this since she went GF. (This was based on the biopsy. After she starts eating gluten again, I'm sure she'll come to her senses. Nicki, Do I understand correctly...that they did a biopsy NOW on your Mom and said she does not have CD? Well...you and I know that if she's been GF, yes the biopsy might come back clean...or they may have hit a patch that was unaffected. They might very well have discovered her problem very early (which would explain some of the bloodwork) on BEFORE any villi damage has occurred. That's the problem with the way CD is currently defined. It requires villi damage - which is considered End Stage for this diseases. Good gosh!!!! Being in the grey zone is so difficult. Ultimately...she will not be in the grey zone...cuz eventually if she continues to eat gluten, yes she will have damaged villi (and maybe a host of other issues). The sad thing is that it more than likely couldve been prevented by staying GF. Did she notice improvment when GF? I am glad you are GF!!! _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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NickisDragon Joined: 06 Oct 2005 Posts: 331 Location: S.E. Michigan	Posted: Wed Feb 01, 2006 12:52 pm    Post subject: Hi Al, yes, mom went into the hospital because of uncontrollable diahhrea (sp?) and weight loss and they did the biopsy. They determined that it was the glucophage that was causing the problem--another iatrogenic problem!) But the hospital doctor was VERY insistent that she did not have CD. (He seemed to take it as a personal affront that she would think so without his "learned diagnosis"!) Her regular doctor told her to stay GF for the next 2 weeks to give her a chance to heal before reintroducing gluten into her diet. For now, she's holding her own and her energy levels are coming up. We'll see..... P.S. You wouldn't BELIEVE the fiasco with the hospital dieticians! Her doctor put her on a GF DF diet--they kept sending up cereal with milk, soda crackers, sandwiches, etc. After my sister and I went toe to toe with these people several times, we finally gave up and started bringing in care packages of proper food. I told the dieticians that THIS food was what put her in the hospital to begin with. I should've saved my breath! Amazing!! _________________ The Love we withhold is the pain that we carry. Nicki B-Day: January 18 DX: October 2005
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paw Joined: 28 Sep 2005 Posts: 355 Location: Michigan	Posted: Wed Feb 01, 2006 2:26 pm    Post subject: Nickis Dragon, what hospital did your Mom use? You can PM me if you don't want to post it. I want to know because I am in your general area and I worry about getting safe food if I ever was in the hospital. I had a visit to a dietitian (St. John Hosp system) when I was only dairy free, but my family doc suspected wheat was a problem then, and the STUPID woman kept telling me to eat waffles made with milk and regular wheat flour and cover them with syrup (also have hypoglycemia and syrup is not a great idea). She just did not get it that on a milk free diet you can't just pour it into waffle batter. She thought that white flour was ok because it was not the brown whole wheat stuff. I did not follow her advice but I also did not learn about any safe foods from that experience. I hope you and your Mom get the diet and health figured out and under control. _________________ Dairy free 7-2004 Gluten free 10-2005 female
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aklap Joined: 02 Oct 2004 Posts: 8786 Location: WI, USA	Posted: Tue Jul 25, 2006 2:00 pm    Post subject: Hi Denise, While it's true, you did trigger me to bump that up - it's was not directed solely at you. We happened to be getting several new visitors at that point in time and I try to bring this for them to peruse. I am glad that you fought thru the shyness to post your story. Thanks!! As I've said, I think sharing our stories is useful on many levels. _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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aklap Joined: 02 Oct 2004 Posts: 8786 Location: WI, USA	Posted: Mon Apr 09, 2007 10:34 pm    Post subject: Amooliakin wrote: First time I saw this thread. It is a good one. Al can you keep it up on top without always having to bump? Amy, the Gluten Free-dom link also lives in the Diagnostic Forum Helpful Info Sticky: http://www.celiacforums.com/viewtopic.php?t=1893 However, I like to bump for new members and old members that maybe missed it, or maybe now feel comfortable with sharing their story. _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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