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19 replies to this topic

#16 Guest_greengirl_*

 
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Posted 02 June 2006 - 04:14 AM

How about the fact that doctors are missing celiac diagnoses regularly, that blood tests and biopsies are not foolproof, the importance of staying on gluten til tests are done, other testing options (enterolab, etc.) , secondary food intolerances that may confuse the celiac issue, and all the other health issues caused by celiac that can lead to misdiagnosing.

It's so important for patients to do their own thinking and get second opinions: one doctor telling you that you don't have celiac is enough to delay proper treatment for years sometimes!!

I feel so strongly about this because I have relatives that are obviously gluten intolerant but doctors have given them a clean bill of health so they don't take it seriously, even knowing that the genes run in the family and seeing the damage it's done to me!!

Christine
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#17 Guest_nini_*

 
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Posted 02 June 2006 - 04:33 AM

LOL Fiddle Faddle! It's ok... it's still a great idea! Just not right for what I'm doing!

thanks again everyone else for such great ideas!

Christine, that is a very good one, great point too... I have touched on that issue in some of my articles, but to write an entire article about that, that might work! Thanks! I have family members too that have been told they are healthy when obviously they are not, and it's so frustrating for me to sit back and watch them continue to load themselves up with gluten and continue to feel so ill...
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#18 VydorScope

 
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Posted 02 June 2006 - 04:37 AM

LOL Fiddle Faddle! It's ok... it's still a great idea! Just not right for what I'm doing!

thanks again everyone else for such great ideas!

Christine, that is a very good one, great point too... I have touched on that issue in some of my articles, but to write an entire article about that, that might work! Thanks! I have family members too that have been told they are healthy when obviously they are not, and it's so frustrating for me to sit back and watch them continue to load themselves up with gluten and continue to feel so ill...



THats an idea, what about INTERFAMILY relationships and how they are effected by this "life change" of a member going gluten free...
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#19 Guest_nini_*

 
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Posted 02 June 2006 - 04:44 AM

THats an idea, what about INTERFAMILY relationships and how they are effected by this "life change" of a member going gluten free...


good one!
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#20 debmidge

 
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Posted 03 June 2006 - 01:53 AM

I too thought it was a building co-op until I read your link.....


My suggestion for the issue right before the holidays (winter) would be how to include celiacs in holiday parties.

The Spring issue should address "inviting celiacs to weddings, graduation, showers - parties" where it's at a hall or restaurant. Tips for the Host/Hostess who wants to make sure the celiac feels included. PM me if you want t me to go into detail as some on the board disagree with me on this topic and I have strong feelings about this topic.

For the summer issue a suggestion: BBQ/picnics and gluten-free treats for children (so that they don't feel left out).
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003




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