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thleensd

#*@($ !#*^% Doctor!

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Speaking of "safe" and clean...We make our bread and the only place we eat out is in an entirely gluten-free cafe. I got lucky-- there is one about 45 minutes away. Just awesome. The first time I ate there, I started to cry....I knew I would be able to eat and not get sick :D

Been there, done that! "You mean I can eat *everything* here?" *tear* .... if I had the energy and money I'd totally open up a cafe!

Can I ask what state/country you're in?

JER due to BDA ... being dicked around? :lol: We kill me. :lol:


Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.

Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.

Grain-free 1/11/11

Blogging Gluten-Free

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My dog's veterinarian spends more time with her than most of the doctors have spent with me.

Yep, JER.

HA! Totally. I wish my doc was my cat's vet!!


Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.

Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.

Grain-free 1/11/11

Blogging Gluten-Free

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Been there, done that! "You mean I can eat *everything* here?" *tear* .... if I had the energy and money I'd totally open up a cafe!

Can I ask what state/country you're in?

JER due to BDA ... being dicked around? :lol: We kill me. :lol:

:lol: :lol: :lol:

I am in upstate NY! :)


"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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HA! Totally. I wish my doc was my cat's vet!!

No, no - you have to let someone in the family be well treated :P


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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You know...my cat's Vet is so loving and caring and leaves no stone unturned when figuring out what ails her....I want her to be MY doctor... :lol:


"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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No, no - you have to let someone in the family be well treated :P

Oh wait.... haha... I guess I should've been more specific. I wish that my cat's vet (who is awesome) was my doctor, too! lol! :P


Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.

Negative blood tests (following gluten light diet)

Still healing with time, harmony, and good food.

Grain-free 1/11/11

Blogging Gluten-Free

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Oh wait.... haha... I guess I should've been more specific. I wish that my cat's vet (who is awesome) was my doctor, too! lol! :P

I thought that was what you meant...! :lol: :lol:


"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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No, no - you have to let someone in the family be well treated :P

Thank you for a good belly laugh! Love your sense of humor. :D


Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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Me, too...that's when they reach for the pad to write antidepressants and anti-anxiety scripts :rolleyes: ....like that's the answer.

And I totally agree about the whole foods approach. Helped me immensely.

omg TOTALLY!!!!! when i broke down in front of my PCP, telling her that i KNEW that Synthroid was not the right medication for me, she was like " uh... i think there's something else going on here"... she wanted to explore antidepressants!!!!! <_<

i went into a walk in clinic months ago, sobbing- i was in so much pain- my stomach muscles were spasming- it was a STABBING pain.... i told the doc i wanted muscle relaxers.... he was resistant, but instead wanted to push Percocet or Lortab on me- maybe 10 years ago i would have jumped on that- but i was like "NOOOOOOO i dont need to mask the pain and i DONT NEED CONSTIPATION... i NEED MY MUSCLES TO RELAXXXXX" haha turns out i needed Vitamin D, which my doc never explained.

now im almost out of my Xanax .25 that i take twice a week after ive been gasping for air all day- and my Endo doesnt want to give me any, and wants to send me to a pulmonologist- I DONT NEED A PULMONOLOGIST!!!!!! i NEED some relief when im suffering panic attacks from swinging to hyper to hypo and back again... GEEZZZZZZZZ... nurse said i could have meds for palpitation- i said "i CAN HANDLE THE PALPITATIONS, i CANNOT HANDLE THE SUFFOCATING " :angry::angry::angry:

uh.. can u tell im suffering from JER today?


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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OMGGGG "BDA"????? u guys are HILARIOUS!!!!! i love it... yes i sometimes suffer from JER & BDA :lol:

someone please send this thread to all of our doctors LOL


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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I buy bob's red mill gluten-free flours. I do consider myself one of the super-sensitives, though. I feel special? :P

>>

Just thought I would throw something out there for you to chew on. I went 8 months chasing down what my problem was starting in Jan. 2010. From every aspect I was gluten free. I was suffering from epigastric/RUQ pain, diarrhea, reflux, fat malabsorption, etc. I didn't think it was gluten cc because that wasn't what my symptoms were before. Many tests later my GI wanted to put me on steriods since my gliadin Igg was still positive. I refused and told him that I would look again at what I was eating and pretty much start from scratch. He did give me a RX for creon which I took for about 3 months during the time I decided to do this. It helped a lot (the RX). What did I discover? I am sensitive to ANY Bob's Red Mill gluten free products. Why? I believe that there is a low level of gluten free oat cc and that was getting me. I knew at 7 months into the gluten free diet I couldn't handle gluten free oats. I reacted so bad, but never gave the cc from then any thought until Aug. 2010. I also found that some main stream products that I previously ate I was no longer able to. I tested out the Bob's again in Jan. of this year and ate some gluten free baked goods from a dedicated gluten free bakery in FL where they used Bob's flours. Within 2-4 days all my symptoms came back and I didn't get over it for a good week later. Just a week ago I caved and ate a few cool ranch doritos with my youngest son. We both paid the price for that one. I started feeling bad the next day but the big D and bloating started 2 days later. My little boy was complaining of a tummy ache too that day and he was having bad mood swings. We are both on the mend now a week later. My reactions have changed. Before I would just get horrible reflux, bloating and constipation. I never thought I would say this but, the former reactions were easier to deal with.. :unsure::P:lol:


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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OMGGGG "BDA"????? u guys are HILARIOUS!!!!! i love it... yes i sometimes suffer from JER & BDA :lol:

someone please send this thread to all of our doctors LOL

I don't know, Cass....I met some pretty humorless jerkwads the past few years...I don't think they would get it!! :lol: :lol: :lol: :lol:


"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 NEED some relief when im suffering panic attacks from swinging to hyper to hypo and back again... GEEZZZZZZZZ... nurse said i could have meds for palpitation- i said "i CAN HANDLE THE PALPITATIONS, i CANNOT HANDLE THE SUFFOCATING " :angry::angry::angry:

uh.. can u tell im suffering from JER today?

CASS! This is what happened to me for 2 years. I am not saying you are the same as I am, but I just want to tell you...I was put on Synthroid for "hypo" (I was exhausted, losing hair and FAT and puffy. My TSH was 5.3 one day 4.3 the next week....) then, I zoomed to HYPER and jumping out of my skin...my brain buzzing with anxiety and trembling. Heart bursting out of my chest. Insomnia. RAPID weight loss (90 lbs.) plus all the celiac symptoms..It took me a long time to convince another doctor to check my thyroid antibodies...LOW. I was on meds for NO GOOD REASON!!...for 2 years. Turns out, the unDxed celiac was bouncing my TSH all around...but 2 endos could not agree with ME that I was WORSE for taking the meds. :blink:

I went off the meds a year ago and my thryoid functions normally..a steady 2.4 TSH and T3 and T4...normal..

Just my experience but anytime someone posts with this hyper-hypo fluctation, palpitations and feeling of suffocating...I just feel so bad because I had it too. Hope you level off and soon!


"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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