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STINGER

Help Please (boy I Need A Lot Of It)

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OK I HAVE WRITTEN BEFORE (IN ANOTHER POSTING) THAT MY FRIEND HAS BEEN DIAGNOSED EARLIER THIS WEEK, SHE IS MY BEST FRIEND AND I HAVE BEEN POURING OVER WEB SITES AND BOOKS AND STUFF (PRETTY MUCH ANYTHING I CAN GET MY HANDS ON) WE WENT TO THE SUPER MARKET TO SEE WHAT THEY HAD SHE WOULD BE ABLE TO EAT, AND I THINK WE ARE GOING TO GO BLIND FROM READING THE TINY LABELS, WE ALSO WENT TO THE HEALTHFOOD STORE, WHERE SHE DID GET A FEW THINGS TO TRY. SHE ORDERED A FEW THINGS ON LINE, AND I PRINTED A BUNCH OF RECEIPES AND MADE HER A COOKBOOK OF HER VERY OWN, SO I CAN MAKE STUFF OUT OF THERE. I WOULD GREATLY APPRECIATE ANYONE E-MAILING ME ANY GREAT RECIPES THEY HAVE AND ENJOY. I WOULD ALSO LIKE TO KNOW ABOUT THE THINGS I CAN DO IN THE KITCHEN TO PREVENT CROSS CONTAMINATING ANYTHING I MAKE FOR HER. ALSO I WOULD LOVE TO HEAR ABOUT ANYONES SUGGESTIONS OF THINGS WE MAY NOT KNOW ABOUT YET, THOSE LITLE THINGS WE TAKE FOR GRANTED THAT WE MAY USE EVERYDAY WHICH MAY CONTAIN GLUTEN THAT WE DON'T EVEN KNOW ABOUT. :unsure: I WOULD HATE TO BE RESPONSIBLE FOR SENDING HER BACK TO THE HOSPITAL ACCIDENTALY.....OH THE GUILT. :huh: I'M SURE SHE WOULD APPRECIATE ANYONE'S FUNNY STORIES ALSO, SHE HAS A GREAT SENSE OF HUMOR AND BELIEVE IT OR NOT HAS KEPT A SUNNY DISPOSITION THROUGH THIS VERY TRYING TIME. :D THANK YOU FOR ANY HELP YOU MAY BE ABLE TO PROVIDE, I CAN'T SAY ENOUGH HOW IT WOULD BE APPRECIATED........CHELE

STINGERKILLS@AOL.COM

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Stinger, first, meat, chicken, fish, eggs, veggies, fruit, nuts, seeds, potatoes and rice are all naturally gluten-free as long as you're buying the natural stuff and not pre-packaged stuff. She will probably heal faster sticking to eating these food items.

As she gets used to the diet, she might want to add in a gluten-free replacement of an old favorite. There are many out there available at both health food stores and mainstream groceries.

Watch out for toasters (she needs her own), plastic colandars, scratched non-stick cookware, wooden spoons and crumbs on the counter. If you're willing, it would be easiest for your kitchen at home to be gluten-free, but many have a "mixed" kitchen. It's just harder that way. Oh, if you grill on a charcoal grill, you need natural charcoal, regular is not gluten-free. And be sure anything that was previously on the grill gets burned off. If there are non-gluten-free items being grilled, use different utensils.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Stinger,

She needs to watch out for personal care products also. Shampoo/Conditioner, soap, toothpaste etc. Also some paper products have gluten in them. I still need to check on the ones I have.

Are there any particular foods that she likes. I am a former vegan and have recipes posted in the recipe section for cashew cheese, almond mayo, ranch dressing, sour cream. If she is dairy free those would help out a lot.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Stinger:

I just wanted to say that you must be a great friend! :D


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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Stinger:

I just wanted to say that you must be a great friend! :D

I was thinking that too Carla! What a wonderful friend! She is very lucky!


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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THANK YOU EVERYONE, THIS IS A MOST HELPFUL SITE, I DID PRINT THE LISTS OF THINGS SHE CAN'T HAVE, AND I TOOK IT TO THE STORE WITH ME. SINCE SHE STARTED THE DIET ON MONDAY, SHE HASN'T HAD TO RUN TO THE BATHROOM RIGHT AFTER SHE ATE, THAT HAD GONE ON FOR THE PAST 17 YEARS. I WAS WONDERING WHY IT TAKES DOCTORS SO LONG TO EVEN CONSIDER GLUTEN TO BE A POSSABLE CULPRIT? WHEN I RAN THE SEARCH ON THE WEB MANY SITES CAME UP, SO IT DOESN'T APPEAR TO BE AN UNHEARD OF THING, ESPECIALLY FOR A GASTRO DOC.

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THANK YOU EVERYONE, THIS IS A MOST HELPFUL SITE, I DID PRINT THE LISTS OF THINGS SHE CAN'T HAVE, AND I TOOK IT TO THE STORE WITH ME. SINCE SHE STARTED THE DIET ON MONDAY, SHE HASN'T HAD TO RUN TO THE BATHROOM RIGHT AFTER SHE ATE, THAT HAD GONE ON FOR THE PAST 17 YEARS. I WAS WONDERING WHY IT TAKES DOCTORS SO LONG TO EVEN CONSIDER GLUTEN TO BE A POSSABLE CULPRIT? WHEN I RAN THE SEARCH ON THE WEB MANY SITES CAME UP, SO IT DOESN'T APPEAR TO BE AN UNHEARD OF THING, ESPECIALLY FOR A GASTRO DOC.

That's great news for your friend! You mentioned something about recipes....honestly, what I do mostly is take old standby recipes and just convert them. ie. someone here posted about using the original toll house recipe to make gluten-free cookies. I also do that--meaning, take a gluten-free flour mix (don't forget the xanthan gum) and sub it 1 for 1 in old recipes. You can make your own gluten-free mix or buy them premixed to sub directly for gluten-flour. Gluten-free pantry and authentic foods and other brands have these mixes.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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That's great news for your friend! You mentioned something about recipes....honestly, what I do mostly is take old standby recipes and just convert them. ie. someone here posted about using the original toll house recipe to make gluten-free cookies. I also do that--meaning, take a gluten-free flour mix (don't forget the xanthan gum) and sub it 1 for 1 in old recipes. You can make your own gluten-free mix or buy them premixed to sub directly for gluten-flour. Gluten-free pantry and authentic foods and other brands have these mixes.

THANK YOU SO MUCH, I'M SURE WE WILL GET USED TO THIS EVENTUALLY, IT WILL JUST TAKE SOME TIME. I WAS WONDERING WHEN BAKING IF THINGS RISE LIKE THEY DO WITH REGULAR FLOUR, BECAUSE SHE BOUGHT A PANCAKE MIX AND THEY DIDN'T SEEM AS FLUFFY AS THE REGULAR ONES.

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THANK YOU SO MUCH, I'M SURE WE WILL GET USED TO THIS EVENTUALLY, IT WILL JUST TAKE SOME TIME. I WAS WONDERING WHEN BAKING IF THINGS RISE LIKE THEY DO WITH REGULAR FLOUR, BECAUSE SHE BOUGHT A PANCAKE MIX AND THEY DIDN'T SEEM AS FLUFFY AS THE REGULAR ONES.

You will notice a difference in many of the products and most of the breads, cakes aren't as fluffy or light. You will have to experiement and try different ones to see what you like best. There are some really good mixes and recipes out there, so tell your friend to be patient and she will find some she will enjoy.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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:D:D

That's great news for your friend! You mentioned something about recipes....honestly, what I do mostly is take old standby recipes and just convert them. ie. someone here posted about using the original toll house recipe to make gluten-free cookies. I also do that--meaning, take a gluten-free flour mix (don't forget the xanthan gum) and sub it 1 for 1 in old recipes. You can make your own gluten-free mix or buy them premixed to sub directly for gluten-flour. Gluten-free pantry and authentic foods and other brands have these mixes.

sorry jenvan i havent read the replys on this but had to reply to you, you have changed your photo and its nice to see you properly. dont worry im a girl youve given some good advice that i thought it would be nice to see yoy and say something. :D:D


married with 3 boys, maclain, dylan and finlay. symptoms for more than 10 years but only diagnosed may 06. lactose and casien intolerant may 06.

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:D:D

sorry jenvan i havent read the replys on this but had to reply to you, you have changed your photo and its nice to see you properly. dont worry im a girl youve given some good advice that i thought it would be nice to see yoy and say something. :D:D

Thanks Taz--that is very sweet of you! :) Think you'll ever brave putting up a picture? It is fun to put faces to all the names...


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Thanks Taz--that is very sweet of you! :) Think you'll ever brave putting up a picture? It is fun to put faces to all the names...

Yea, Taz, I agree, I'd like to see a picture, too!!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Stinger! Nice to meet ya! Watch out for condiments! Like Soy sause (and teryaki sause) because they have WHEAT in them many times. I learned that the hard way! La Choy is a gluten-free soy sauce! Other than that, sounds like you are doing great, and I second what everyone else mentioned! You ARE a great friend!!!!


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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THANK YOU EVERYONE, THIS IS A MOST HELPFUL SITE, I DID PRINT THE LISTS OF THINGS SHE CAN'T HAVE, AND I TOOK IT TO THE STORE WITH ME. SINCE SHE STARTED THE DIET ON MONDAY, SHE HASN'T HAD TO RUN TO THE BATHROOM RIGHT AFTER SHE ATE, THAT HAD GONE ON FOR THE PAST 17 YEARS. I WAS WONDERING WHY IT TAKES DOCTORS SO LONG TO EVEN CONSIDER GLUTEN TO BE A POSSABLE CULPRIT? WHEN I RAN THE SEARCH ON THE WEB MANY SITES CAME UP, SO IT DOESN'T APPEAR TO BE AN UNHEARD OF THING, ESPECIALLY FOR A GASTRO DOC.

That's the $20 million question. Many have ran that same question thru their minds and no one really knows for sure why this happens. Hopefully it's changing now.


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 2006It 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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THANK YOU ALL, I APPRECIATE ALL OF THE NICE COMMENTS, AND ALL OF YOUR HELP. I'M JUST PARANOID ABOUT ACCIDENTALLY POISONING HER. AND GEE WE NEVER THOUGHT ABOUT HAVING HER OWN TOASTER AND STUFF LIKE THAT, WE MADE A SPECIAL TRIP TO GET HER OWN KITCHEN IMPLIMENTS, AND BATH PRODUCTS. SHE WAS NONE TOO HAPPY ABOUT THE MAKEUP, AND SHE ISN'T REAL HAPPY ABOUT THE CHANGING LIPSTICK COLORS, SHE HAS GOTTEN PRETTY ATTACHED TO CERTAIN THINGS. BUT WE MADE A JOKE ABOUT IT AND MOVED ON.

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THANK YOU ALL, I APPRECIATE ALL OF THE NICE COMMENTS, AND ALL OF YOUR HELP. I'M JUST PARANOID ABOUT ACCIDENTALLY POISONING HER. AND GEE WE NEVER THOUGHT ABOUT HAVING HER OWN TOASTER AND STUFF LIKE THAT, WE MADE A SPECIAL TRIP TO GET HER OWN KITCHEN IMPLIMENTS, AND BATH PRODUCTS. SHE WAS NONE TOO HAPPY ABOUT THE MAKEUP, AND SHE ISN'T REAL HAPPY ABOUT THE CHANGING LIPSTICK COLORS, SHE HAS GOTTEN PRETTY ATTACHED TO CERTAIN THINGS. BUT WE MADE A JOKE ABOUT IT AND MOVED ON.

Another thing to watch - her medication. Some prescriptions and over-the-counter drugs have gluten. A good website to check out is www.glutenfreedrugs.com.

Joking is good. If your friend is anything like me - humor helps a lot.


“This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws.”

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Cross contamination -- grrrrrrr.

I live about 20 min. from my folks, so I stop by often. They keep a separate gluten-free butter, peanut butter, and mayo at the house, so I can use them if I need to. That way, there's no crumbs leftover to "get" me!

Tinkyada Rice Pasta is the best I've tried and kinnikinnick sandwich bread is great. If you live near a Whole Foods grocery, they have a freezer for gluten-free bakery items that are prepared in a gluten-free facility. They also carry many gluten-free items. Wegmans Markets has a significant natural foods section and also they will clearly label - with an orange circle and "G" any Wegman's Brand items that are gluten-free. They also carry a lot in their international foods aisle! Trader Joe's also has a pretty significant list of gluten-free items.

Good luck!


Amy

Gluten Free since 4/05 - adult onset

Symptoms for 4+ years prior

Immediate family tests negative

No Known family members w/ celiac disease

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