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  #11  
Old 11-03-2006, 09:30 AM
darlindeb darlindeb is offline
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Hi everyone--sounds like lots of news going around in here. Congrats to everyone with good news and sorry about the glutening of the family. Stinks that it said gluten free and wasnt.

I'm still trying to get this intolerance thing all figured out. I don't know if I can ever get all this figured out--it seems 1 step forward, 4 back all the time.

Happy Thanksgiving to all of you.
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  #12  
Old 11-03-2006, 03:16 PM
JudyLV JudyLV is offline
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I am here and am a bit worried about how quickly Nov. and Dec. usually fly by. I spoke with my older son's pediatrician about his low cholesterol (fasting 103) and he pretty much said "you have enough on you plate right now" (referring to the health of my other 2 kids). Needless to say I did not let that comment go. But then Dr. Fasano's nurse sent me an e-mail stating that he did not think the low cholesterol is related to malabsorption. I really need to get one of Karen's "Warning: I question authority" buttons.

Oh, and my husband went in for his "I turned 50 physical" and I told him to ask to be screened for Celiac. He came home and said the doc said they could not justify doing the blood work but would take some biopsies when he had his colonoscopy. I just looked at him and explained they would be looking in the wrong end. He followed up during his GI appointment and they said they would scope both ends.

--Judy
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  #13  
Old 11-04-2006, 08:08 AM
OZZ OZZ is offline
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Quote:
Originally Posted by JudyLV View Post
I spoke with my older son's pediatrician about his low cholesterol (fasting 103)...But then Dr. Fasano's nurse sent me an e-mail stating that he did not think the low cholesterol is related to malabsorption.
--Judy
I thought I read somewhere that was a sign of possible CD??? Especially if the triglycerides were low?
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  #14  
Old 11-04-2006, 09:15 AM
OZZ OZZ is offline
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October 2006 is the month I finally felt better!!!

I was diagnosed GSCD (gold star Celiac Disease) June 2005...17 months ago. After 17 months of strict GF diet I finally feel better! It is amazing like someone turned on the light! I am sure when I have my next set of blood work I will finally show a drop in my EMA and TtG's. I did not do anything different with my diet other than added more Vitamin D and took some prenatal vitamins once-in-awhile. And truthfully now I have been negligent in taking any vitamins since I feel so much more normal. Oh and I did quit exercising entirely for quite a few months because every time I did exercise it seemed to set me back or cause an injury. I kept trying to go to "Curves" with my daughter but would end up pulling ligaments or just plain relapsing even though I didn't push myself or even do 2 rounds.

In September I started back to work and feel energetic even at the end of the day. I do notice some MG type symtoms if I do too much but nothing like last year or even a few months ago. My stiffness in my right leg seems to be loosening up and letting me walk up hills and inclines without so much limping. I do notice a lot of weakness still in chest muscles and legs and bad balance on right side but do notice a little change in raising myself on right ankle. I am remembering things which is so...cool! At one point I was confusing my own SS# all the time and would actually have to look it up...same with my cell phone number. When someone posted the article on dementia and cognitive problems, it was like they were discussing me. I always told my neuro that I felt like someone was squeezing my brain and would get waves of warm feelings (in my brain) when this happened but it went mostly ignored. I told him how I would suddenly not know where I was going while driving and this also was said to be normal. But the worst was when I was at a school function and they were introducing a person and everyone clapped except for me....I was waving.... LOL....funny now but not at the moment when I realized this was totally inappropriate and had no idea why I was doing this. At that moment, I new I was on a downward spiral and if I didn't figure out what was wrong I was going to die or become an invalid. Thank heavens there was braintalk and all the wonderful people who gave me knowledge and strength to fight back!

My family:
DH is relapsing some with stomach and fatigue problems. He keeps accidentally glutening himself...eating what he thought was a taco chip but was a pita chip caused major nausea for a couple of days. I remind him that I felt worse before I felt better so he is looking toward an end to this in a few months. In Chicago he was glutened from eating out.
DS is doing fine on diet and tends not to eat out as he is 25 and doesn't want to deal with explaining his issues in front of people.
DD1 older daughter has not finished testing but plans to. No more retina bleeds but is having a hard time with night vision.
DD2 youngest is relapsing right now. She is a senior and having some anemia issues again so we go to the Docs on Monday. She is on a prenatal vitamin 2x a day. I did notice she quit taking her B's and D's so I am wondering if this is her problem. She didn't start the diet until March so I also remind her that it took me 16 months before I really felt better. She is also having bone pain which concerns me. She never had a density test so I may bring that up on Monday. We also had her tested and got an IEP for her from the school. She showed and strong decrease in her long and short term memory in the last couple of years. We did this because although she has a high average IQ she was having a very hard time with tests. This will help her when she gets to college.

Thanks again to all the great people here who continue to post and support all of us!
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  #15  
Old 11-05-2006, 05:20 AM
Razzle0 Razzle0 is offline
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Default re: November '06 Roll Call

November already - amazing how fast this year has gone! Work has DH and I very busy lately. And no further info on why I can't eat without pain yet, although many tests have ruled out some nasty stuff I'm glad got ruled out. They did find Lupus Anticoagulant and a high ANA titer (higher than last year), but I don't have enough symptoms in the right places to qualify as Lupus so they've called it an Undifferentiated Connective Tissue Disorder. So I'm eating anyway and gritting my teeth through the waves of pain - too tired of not having something solid to chew on (after ~10 weeks liquids only). One of my MD's thinks it could be Whipple's Disease (bacterial infection), another thinks possible fungal infection - cultures are pending (will take another 6-8 weeks to receive any results). Hopefully all these tests will be worth it and they'll be able to finally figure out what's going on...

Glad to be a part of this board, I learn tons just by lurking here. Having login problems (took 3 tries today, for example), so I don't post as often as I would like to.

-Razzle
Gluten Sensitivity; DQ2; GF since 7/05
Sulfite Sensitivity
UCTD
Small Bowel partial obstruction (narrowed in jejunum & ileum = pain after eating; dx pending)
Allergies
etc...
DH has Eosinophilic Gastroenteritis & too many Allergies
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  #16  
Old 11-05-2006, 07:30 PM
Electra375 Electra375 is offline
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HI
I'm here! I'm so glad these forums are back.
It's been bitter cold, I'm 27 wks pregnant and got a stomache virus, lower intestinal and still getting over it since Thursday PM, it's Sunday now. My dd has it, my ds1 has it and I'm just banking ds2 has it as he has been asleep all afternoon. My dh shows signs as well, but "he never gets sick" and he doesn't.
It was probably a year ago I found this board. It was Sept a year ago that my ds2 went GF. A lot has happened in a year, I thought we'd all be GF by December of this year -- nope, but I think we are moving that direction as a family.
I wish I had the engery to devote more time to baking, if I did, I think we might be GF as a family.
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  #17  
Old 11-08-2006, 01:34 PM
Hanna Hanna is offline
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Default My dear father

I am writing this as you all are my virtual friends. After radiation, I ran to Los Angeles from Paris and spent 4 days with my father before he past away. His skin was beautiful as he had been on a gluten free feeding tube for several months. The why's as to his demise, we shall never know though I will answer any PMs.

I saw after a week in the States that genericmedicine is poisining those who are gluten intolerant. Can we mention brand names as well on BT?????? I was glutened at least 3 times in a 9 day period. Best to stop consuming. The partial seizures started.

Airlines have little respect as to gluten free diets. I did my ordering in America only to find nothing was on the plane.

My father is at rest, I am relieved that he is at peace. Hanna
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  #18  
Old 11-08-2006, 08:21 PM
Zonulin Zonulin is offline
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Oh Hanna - I'm so sorry to hear about your father. How terrible. What a terrible time for you, and to have insult added to injury regarding getting "glutened" while travelling... So so sorry. As for the brand names - name away!! We'd all appreciate the heads up on this stuff!

((((hugs)))) to you, Hanna.

Karen
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  #19  
Old 11-08-2006, 09:19 PM
annelb annelb is offline
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Dear Hanna, I am so sorry to hear about your father. I am glad that you were able to spend the 4 days with him. How is your mother doing? Are you still in the States?

Yes, you can name names. You may help someone else by doing so.

More ((((((hugs)))))) for you,
Anne
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  #20  
Old 11-09-2006, 05:33 AM
Hanna Hanna is offline
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Default France

I am back in France. The brand name is Maalox and Kirkland. UGH...........
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