Misdiagnosis and false negatives on celiac testing had left me disabled and very isolated. This forum has helped me to feel like I have a bit more of a life. That maybe my experience and recovery served some sort of purpose, if I could recover as much as I have from so much that I was handed pills for and told 'learn to live with the pain' perhaps others could also. I am most thanksful for the info on CC and on personal products. My hair would have never stopped falling out if I had continued using the stuff I was using. Although it was hard to go through my cabinets and throw out lots of money spent on stuff it was so worth it. But I think the most valuable thing I have gotten here is not feeling so alone, I still get lonely at times and wish I had freinds to talk to or do something with but then I come on here and realize that many are also in my shoes and it helps a great deal.
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32 replies to this topic
#31
ravenwoodglass
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- Advanced Members
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- 13,665 posts
Advanced Community Member
Posted 19 September 2006 - 07:28 AM
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#32
IrishKelly
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Advanced Community Member
Posted 19 September 2006 - 07:32 AM
First off, I don't sit a stage of panic anymore because i've now realized other people truly have these same issues...i'm not just crazy!!
Second, i've learned through this board about my dairy problem...which i would still have now if it wasn't for all of you out there!
Lastly, besides tons of support i've gotten alot of great recipes
Second, i've learned through this board about my dairy problem...which i would still have now if it wasn't for all of you out there!
Lastly, besides tons of support i've gotten alot of great recipes
Gluten Free...negative blood results...absolutely positive diet results.
Dairy Free...absolutely positive diet results.
Egg Free...there goes another one...absolutely positive diet results.
Allergic to Codeine.
"Life is like a box of chocolates...you never know which ones may have gluten in them:)"
Dairy Free...absolutely positive diet results.
Egg Free...there goes another one...absolutely positive diet results.
Allergic to Codeine.
"Life is like a box of chocolates...you never know which ones may have gluten in them:)"
#33
Turtle
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- Advanced Members
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- 395 posts
Advanced Community Member
Posted 19 September 2006 - 10:30 AM
Wow...this is one of those questions we could sit around and talk about for hours b/c the list is so long for how this forum has been so helpful to each of us. I don't even know where to start....but i'll try:
First and foremost I would have to say that there are some WONDERFUL people on this forum. It's such a pleasure to come to this forum and to be able to talk with someone else who TRULY understands celiac and all that one can go through with this disease. It is so great to come to a place where people are "johnny on the spot" to your questions, concerns or if you just need some support. Everyone is so helpful and giving. I have made some great friends thanks to this site and for that alone I will be forever grateful! Thank you to everyone who shares their knowledge, their insight, their courage, gluten-free products you've found, recipes, etc. EVERYTHING is sooooo helpful!!!
The top 10 things I can think of off the top of my head in trying to answer this question:
1. Where else can you go and talk about diarreah, gas, bloating???
2. Where else can you go and admit to everyone and their brother that you were a moron for glutening yourself?
3. Where else can you go when you've been in your kitchen for a really long time trying to cook something and you need HELP!!!! And fast!!!???
4. Where else can you go and talk about gaining weight including all the details about fat rolls, having to buy bigger sized underwear, having to buy maternity pants b/c you're so bloated you can't fit into anything else, etc.???
5. Where else can you go and ask for help in trying to find the hidden gluten?? You know it's somewhere.
(Thank you GreenFingeredGaelic for helping me to see the hidden gluten in my wood cutting boards, DUH)
6. Where else can you go to find such awesome unending support????
7. Laughter, Laughter and more laughter!! (I think even GFP has even laughed a time or two)
8. Links to gluten-free products
9. Safe food lists
10. Patti for being my personal hygiene product consultant, especially with regards to our unruly hair & sharing ideas on which products are safe that can tackle our manes! Oh...and of course, Nini & the newbie packet she put together!!!
First and foremost I would have to say that there are some WONDERFUL people on this forum. It's such a pleasure to come to this forum and to be able to talk with someone else who TRULY understands celiac and all that one can go through with this disease. It is so great to come to a place where people are "johnny on the spot" to your questions, concerns or if you just need some support. Everyone is so helpful and giving. I have made some great friends thanks to this site and for that alone I will be forever grateful! Thank you to everyone who shares their knowledge, their insight, their courage, gluten-free products you've found, recipes, etc. EVERYTHING is sooooo helpful!!!
The top 10 things I can think of off the top of my head in trying to answer this question:
1. Where else can you go and talk about diarreah, gas, bloating???
2. Where else can you go and admit to everyone and their brother that you were a moron for glutening yourself?
3. Where else can you go when you've been in your kitchen for a really long time trying to cook something and you need HELP!!!! And fast!!!???
4. Where else can you go and talk about gaining weight including all the details about fat rolls, having to buy bigger sized underwear, having to buy maternity pants b/c you're so bloated you can't fit into anything else, etc.???
5. Where else can you go and ask for help in trying to find the hidden gluten?? You know it's somewhere.
(Thank you GreenFingeredGaelic for helping me to see the hidden gluten in my wood cutting boards, DUH)
6. Where else can you go to find such awesome unending support????
7. Laughter, Laughter and more laughter!! (I think even GFP has even laughed a time or two)
8. Links to gluten-free products
9. Safe food lists
10. Patti for being my personal hygiene product consultant, especially with regards to our unruly hair & sharing ideas on which products are safe that can tackle our manes! Oh...and of course, Nini & the newbie packet she put together!!!
~Turtle~
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