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How does a lab lose blood? :rolleyes: for pete's sake! geesh.

Sorry you are still waiting. I am not surprised. If you are like me, I find that lab test results, waiting for insurance approval, etc....all of these things are always delayed...sigh... the medical system... :rolleyes:

Hang in there!

Thanks, I will try. My daughter is so tired of being sick and tired. She is very upset that the lab isn't ready. The office nurse called and urged us not to go gluten free yet. They want her to start the reflux meds today. My daughter doesn't want to as she thinks it is a waste of time and wants to see if going gluten free helps before she results to yet, more drugs! Can't blame her.

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Results of the gene test are negative. So of course now my husband wants to put her on the prilosec instead of going gluten free. This is going to be a huge battle.

Since we do have celiacs without one of those 2 genes, I am one of them, you really need to just trial the diet if all celiac related testing is done. Maybe it might help your DH to understand if he comes here and reads a bit and asks some questions.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Since we do have celiacs without one of those 2 genes, I am one of them, you really need to just trial the diet if all celiac related testing is done. Maybe it might help your DH to understand if he comes here and reads a bit and asks some questions.

Thanks. My daughter doesn't think prilosec is the answer so she wants to try going gluten free to see if it helps.

It will be difficult during the holidays but hopefully she feels better soon and maybe that will motivate her.

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Thanks. My daughter doesn't think prilosec is the answer so she wants to try going gluten free to see if it helps.

It will be difficult during the holidays but hopefully she feels better soon and maybe that will motivate her.

It may also make a believer out of her Dad. Holiday meals are not hard to do gluten free. Turkey or ham, sweet and mashed potatoes, veggies, fruits and salads are all easy to do gluten free. If you need some recipe or menu suggestions check out the recipe section of the forum or just ask. Hopefully she will be feeling better soon.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Results of the gene test are negative. So of course now my husband wants to put her on the prilosec instead of going gluten free. This is going to be a huge battle.

I was afraid of that, but please, please understand that you can be gluten intolerant and still have all these awful symptoms. My Mom does not have celiac, but she has the gene and multiple symptoms. Well, she did--they have resolved on a gluten-free diet.

PLUS, I was ready to tell you that Ravenwoodglass and others DO NOT have the DQ2 or DQ8 genes, yet they are celiacs nonetheless. My own doctor biopsied a guy without either "celiac gene" and he had totally flat villi. :blink:

Many respected celiac researchers say gluten sensitivity/intolerance causes nearly the same symptoms as celiac and that a gluten free diet will resolve those symptoms.

Please, give it a chance. Before you guys knew the results, you were committed to the gluten-free diet. It's still worth a month's trial.

You have the menus and lists I sent you. If you want holiday treats ideas, this forum is LOADED with them as is the internet. :) It does not have to be a burden. When she starts to feel better, it will be worth it.

I have no doubt in my mind that your daughter will feel better on a gluten-free diet. And since your husband has celiac in his family, you will all benefit from it as well.

It's time for your husband to read some current information on gluten and what it does. Your daughter's symptoms are treatable!!!

Prilosec, prozac, anti-anxiety drugs...these will not solve the problem. They will just mask it and she'll remain chronically ill.

Just my humble opinion.

IH


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I was afraid of that, but please, please understand that you can be gluten intolerant and still have all these awful symptoms. My Mom does not have celiac, but she has the gene and multiple symptoms. Well, she did--they have resolved on a gluten-free diet.

PLUS, I was ready to tell you that Ravenwoodglass and others DO NOT have the DQ2 or DQ8 genes, yet they are celiacs nonetheless. My own doctor biopsied a guy without either "celiac gene" and he had totally flat villi. :blink:

Many respected celiac researchers say gluten sensitivity/intolerance causes nearly the same symptoms as celiac and that a gluten free diet will resolve those symptoms.

Please, give it a chance. Before you guys knew the results, you were committed to the gluten-free diet. It's still worth a month's trial.

You have the menus and lists I sent you. If you want holiday treats ideas, this forum is LOADED with them as is the internet. :) It does not have to be a burden. When she starts to feel better, it will be worth it.

I have no doubt in my mind that your daughter will feel better on a gluten-free diet. And since your husband has celiac in his family, you will all benefit from it as well.

It's time for your husband to read some current information on gluten and what it does. Your daughter's symptoms are treatable!!!

Prilosec, prozac, anti-anxiety drugs...these will not solve the problem. They will just mask it and she'll remain chronically ill.

Just my humble opinion.

IH

I think I was in shock and I am better now. I just wanted that diagnosis so my daughter would take it seriously and my husband would be on board. However, my daughter decided that she wants to go gluten-free so we went to Whole Foods and bought some breakfast foods to start the day tomorrow gluten-free. We met a woman who is not celiac but is gluten-free and she told us how it changed her life. She is a chiropractor and her entire family has gluten issues. She said gluten is a neurotoxin and believes it will help. It was super good for my daughter to hear that. So we are both going gluten-free for 3 months.

I really can't thank you all enough for your support. I will be using your lists and your articles as I move forward. I will be on the website too asking questions.

I hope this works because my daughter needs to feel better!

Grateful to you all

Kristi

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I think I was in shock and I am better now. I just wanted that diagnosis so my daughter would take it seriously and my husband would be on board. However, my daughter decided that she wants to go gluten-free so we went to Whole Foods and bought some breakfast foods to start the day tomorrow gluten-free. We met a woman who is not celiac but is gluten-free and she told us how it changed her life. She is a chiropractor and her entire family has gluten issues. She said gluten is a neurotoxin and believes it will help. It was super good for my daughter to hear that. So we are both going gluten-free for 3 months.

I really can't thank you all enough for your support. I will be using your lists and your articles as I move forward. I will be on the website too asking questions.

I hope this works because my daughter needs to feel better!

Grateful to you all

Kristi

It is indeed a neurotoxin. It caused anxiety, depression, and ataxia in me and I had difficulty comprehending (I had to read sentences over and over to understand them--and I used to read 3 books at a time);I could no longer multi-task. I lost words and had trouble articulating. I "forgot" how to cook (I am a gourmet cook, for pete's sake) I made mistakes in the checkbook and I had to stop driving. My reflexes were shot. I was in a gluten stupor. My short term memory suffered. Parts of 2007-2010 are a scary blur. I would say to my hubs, I feel "peculiar". I would cry from the pain in my joints and muscles and feel like I was drugged. I was "racy" and agitated and could not sleep. Raging insomnia for years. I was never shy in my life (I taught for 20 years and was a dancer--not a problem standing in front of an audience or a crowded room -- ever ) and suddenly, I was holding onto his arm in public, frightened and timid. I was burning with neuropathic pain from head to toe, like I was swollen and set on fire. It was hell. I still have that pain, but it's less.

Those were just my neurological symptoms. I had gastro, skin, muscle, joint, hormonal issues...just ridiculous what happened to me.

WTH was going on?? GLUTEN!!

That link I sent you? The Gluten Files--when you have some down time after the holidays--read about the link to seizures, depression and anxiety.

It will convince you.

But the real proof will be in seeing your daughter improve. Be careful of cross-contamination. It will be the one thing that can trip you up.

Read these suggestions for avoiding CC:

http://answers.google.com/answers/threadview/id/780554.html

It seems like a lot at first, but it is really "do-able"...honest!

Ok, Mamma--happy Holidays to you. :)

Take it one day at a time. Get her on some Culturelle Probiotics to stop some of those GI tract issues. Lots of WATER!

Best wishes and please, keep me posted!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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It is indeed a neurotoxin. It caused anxiety, depression, and ataxia in me and I had difficulty comprehending (I had to read sentences over and over to understand them--and I used to read 3 books at a time);I could no longer multi-task. I lost words and had trouble articulating. I "forgot" how to cook (I am a gourmet cook, for pete's sake) I made mistakes in the checkbook and I had to stop driving. My reflexes were shot. I was in a gluten stupor. My short term memory suffered. Parts of 2007-2010 are a scary blur. I would say to my hubs, I feel "peculiar". I would cry from the pain in my joints and muscles and feel like I was drugged. I was "racy" and agitated and could not sleep. Raging insomnia for years. I was never shy in my life (I taught for 20 years and was a dancer--not a problem standing in front of an audience or a crowded room -- ever ) and suddenly, I was holding onto his arm in public, frightened and timid. I was burning with neuropathic pain from head to toe, like I was swollen and set on fire. It was hell. I still have that pain, but it's less.

Those were just my neurological symptoms. I had gastro, skin, muscle, joint, hormonal issues...just ridiculous what happened to me.

WTH was going on?? GLUTEN!!

That link I sent you? The Gluten Files--when you have some down time after the holidays--read about the link to seizures, depression and anxiety.

It will convince you.

But the real proof will be in seeing your daughter improve. Be careful of cross-contamination. It will be the one thing that can trip you up.

Read these suggestions for avoiding CC:

http://answers.google.com/answers/threadview/id/780554.html

It seems like a lot at first, but it is really "do-able"...honest!

Ok, Mamma--happy Holidays to you. :)

Take it one day at a time. Get her on some Culturelle Probiotics to stop some of those GI tract issues. Lots of WATER!

Best wishes and please, keep me posted!

Wow, those symptoms are horrible. I did read that article that you posted and was amazed. I think where I am confused is if you are not Celiac, does gluten cause those types of serious issues? It must since there are so many non-celiac gluten intolerants on this website. We are keeping a journal so hopefully that helps. The cool thing about my daughter is that she is a "whole foods" kind of girl. Her favorite meal would be a grilled steak or chicken breast/ rice/ veggie or a salad. So dinners will be easier than if she a processed food type of girl.

CC is my biggest concern because I think my husband thinks gluten lite is OK (like his sister does) but I am convincing him that if we go super strickt gluten free and we are careful to avoid CC then we will have a much better understanding if gluten effects her. So he is coming around.

Happy Holidays!!!!!

Thanks!

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Wow, those symptoms are horrible. I did read that article that you posted and was amazed. I think where I am confused is if you are not Celiac, does gluten cause those types of serious issues? It must since there are so many non-celiac gluten intolerants on this website. We are keeping a journal so hopefully that helps. The cool thing about my daughter is that she is a "whole foods" kind of girl. Her favorite meal would be a grilled steak or chicken breast/ rice/ veggie or a salad. So dinners will be easier than if she a processed food type of girl.

CC is my biggest concern because I think my husband thinks gluten lite is OK (like his sister does) but I am convincing him that if we go super strickt gluten free and we are careful to avoid CC then we will have a much better understanding if gluten effects her. So he is coming around.

Happy Holidays!!!!!

Thanks!

YES!! YES!! and YES!! Gluten intolerance causes most of those things, too. That's what we keep trying to tell you. :)

Gluten lite is not okay. Forget it!

Please get the Danna Korn book. It will make sense to you then!!

And being a whole foods girl is a very good thing ;)

Be healthy, be happy.

P>S> Feel free to contact me anytime through this thread or on PM. ;)

Best wishes to you and your daughter!!


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Results of the gene test are negative. So of course now my husband wants to put her on the prilosec instead of going gluten free. This is going to be a huge battle.

Do you have copies of the tests? What lab performed them?


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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Do you have copies of the tests? What lab performed them?

I know it was at Prometheus but I have requested a copy of the test. I wonder if they only tested for DQ2 and 8?

I will let you know.

So frustrating. She is a walking poster child for celiac. She has excema all over her hands right. The nurse said the GI wants her to take her Prilosec and see us in Feb. I am starting gluten free with a journal and NO prilosec. Hoping I can physically show her the changes.

Thanks!

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YES!! YES!! and YES!! Gluten intolerance causes most of those things, too. That's what we keep trying to tell you. :)

Gluten lite is not okay. Forget it!

Please get the Danna Korn book. It will make sense to you then!!

And being a whole foods girl is a very good thing ;)

Be healthy, be happy.

P>S> Feel free to contact me anytime through this thread or on PM. ;)

Best wishes to you and your daughter!!

Thank you so much. I m On my way to get Danna Korn's book! The first gluten day was hilarious. Let's say I didn't make her an appetizing lunch and she and her friends had a good laugh over it.

I won't do gluten lite. I got DH to understand that it will muddy the waters. The hardest part for us is eating out.

Any breakfast ideas for kids that don't like eggs???? She is ADDICTED to Eggos so that is the hardest thing for her.

Thanks again!

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Any breakfast ideas for kids that don't like eggs???? She is ADDICTED to Eggos so that is the hardest thing for her.

Thanks again!

I was at Winco foods yesterday, checking their frozen food section and they actually had some Vans gluten-free frozen waffles there, but only 1 flavor available. They have other flavors available at a local health-food store too. So you should be able to find something, and I've heard they're good. I just wish maple syrup (the real thing) weren't so darn expensive, since I do my best to avoid corn syrup.


Gluten-free since the end of October 2011

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I was at Winco foods yesterday, checking their frozen food section and they actually had some Vans gluten-free frozen waffles there, but only 1 flavor available. They have other flavors available at a local health-food store too. So you should be able to find something, and I've heard they're good. I just wish maple syrup (the real thing) weren't so darn expensive, since I do my best to avoid corn syrup.

we tried the Vans this morning and she spit them out. So we are going to make waffles using Pamela's baking mix and see how that goes.

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I know it was at Prometheus but I have requested a copy of the test. I wonder if they only tested for DQ2 and 8?

I will let you know.

So frustrating. She is a walking poster child for celiac. She has excema all over her hands right. The nurse said the GI wants her to take her Prilosec and see us in Feb. I am starting gluten free with a journal and NO prilosec. Hoping I can physically show her the changes.

Thanks!

Prometheus reports all genes, alpha and beta I believe.

Are you saying negative because that's what was written on the results or what you were told? My results (LabCorp) SAID NEGATIVE but I was half dq2, half dq8. But I had to see them and read it to get that info.


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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Prometheus reports all genes, alpha and beta I believe.

Are you saying negative because that's what was written on the results or what you were told? My results (LabCorp) SAID NEGATIVE but I was half dq2, half dq8. But I had to see them and read it to get that info.

I was left a vmail that said "your child's gene test was negative for Celiac". I have requested the results be sent to me by email, fax or snail mail.

We will see what they say.

Thanks!

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Prometheus reports all genes, alpha and beta I believe.

Are you saying negative because that's what was written on the results or what you were told? My results (LabCorp) SAID NEGATIVE but I was half dq2, half dq8. But I had to see them and read it to get that info.

WAIT so does your GI consider you Celiac with those genes or not? Or did they agree to a biopsy?

My GI will NOT do a biopsy on my daughter. I thought about keeping her on gluten and going to a different GI in a nearby city (all ped GIs here are affiliated with our doctor so that is OUT).

Now I guess I am resolved to trying the GFD and seeing if that eliminates the symptoms that she is having.

We have an endocrinology appt coming up for her low growth hormone and I am certain because she is not Celiac that she will want her on meds. ARGH

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My doc considers me Celiac because of my DH appearing rash, blood results for vitamin deficiencies, and good results going gluten-free, and i have Hashimotos and probably endometriosis.

I did not get blood work for antibodies (would have been pointless in retrospect given the steroids I was on) or an endoscopy (again, with DH and steroids would have probably been negative).

I go to an ND so I don't get the push back most get.

I got the genetic testing because it was something I could do without a challenge, since a challenge would come with a body-encompassing rash. Not to mention neuro and heart palpitations.

If I had wanted an endoscopy I could have tried by going to a celiac-friendly doc, referred by the local Celiac group. But by the time we figured out it was gluten I knew the endoscopy would probably be negative so I didn't pursue it.


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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My doc considers me Celiac because of my DH appearing rash, blood results for vitamin deficiencies, and good results going gluten-free, and i have Hashimotos and probably endometriosis.

I did not get blood work for antibodies (would have been pointless in retrospect given the steroids I was on) or an endoscopy (again, with DH and steroids would have probably been negative).

I go to an ND so I don't get the push back most get.

I got the genetic testing because it was something I could do without a challenge, since a challenge would come with a body-encompassing rash. Not to mention neuro and heart palpitations.

If I had wanted an endoscopy I could have tried by going to a celiac-friendly doc, referred by the local Celiac group. But by the time we figured out it was gluten I knew the endoscopy would probably be negative so I didn't pursue it.

I wish I had taken her to a ND. Thanks for the info. I see you went gluten free in June of this year. How long until you felt better? Or recognized an improvement of some symptoms? Are you off the steroids and DH free?

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I felt a difference in a week, but I was just beginning the 6 month roller coaster.

I am now off antihistimines (was on a nasty one that was actually for psychiatric use but rx'ed by my derm for the rash) and am mostly DH free. If I get into too much iodone I get a little rash.

Overall, much better.


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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we tried the Vans this morning and she spit them out. So we are going to make waffles using Pamela's baking mix and see how that goes.

My almost 13-year old gluten-eating granddaughter loves waffles and pancakes made from Pamela's Baking & Pancake Mix. She also loves to help cook especially using my KitchenAid mixer to make gluten-free pizza crust.


Sylvia

Positive Celiac Blood Panel - Dec., 2009

Endoscopy with Positive Biopsy - April 9, 2010

Gluten Free - April 9, 2010

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I sent you that long list earlier in the thread? take a look ...there are waffle mixes, like Pamela's, gluten-free cereals, cream or rice, pancakes from a mix. Does she like yogurt? toast?

Also, on that list, I mention using pure maple syrup as some prepared pancake syrups have gluten in them.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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I wish I had taken her to a ND.

IDK...I saw an ND AND a functional, integrative MD for 3 years and neither one of them suggested gluten or celiac to me. Just tons of supplements and homeopathy and $$$$$$ down the drain.

The "cure" for either gluten sensitivity or celiac is still the same. NDs may not be licensed to run certain tests (depending on the state you live in) so, really, you may have had to see an MD for testing anyway.

You're doing all you can for her --you're doing great, momma! :)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Thanks to you all. This IS a rollercoaster that is for sure!

IH: yes, I remember that about Pamela's. I bought some and we are going to make waffles this evening to freeze for breakfast. The problem is that she has become food phobic over the years and is very attached to her brands. It is going to be a challenge to get her used to eating gluten-free but I am sure she will be fine in a few months.

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