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Shocked And Needs Help


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25 replies to this topic

#16 jaayimee

 
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Posted 11 October 2007 - 06:13 PM

Just wanted to add a few things...

First, keep eating gluten until your biopsy. You don't want to go through the head ache of a biopsy and have a sort of healed intestine which will make it harder t find the damaged villi.



If you doctor told you to go gluten free right away then I would check with them about waiting to start while waiting for the biopsy. My GI told me to do it immediatly even though my biopsy is not for another 3 or 4 weeks. I called them to double check and they said yes go gluten-free immediatly. Probably to do with how sick I am but I would double check it with the doctor. I've had the scope into the stomach twice before and do not even remember the whole day let alone the test so you will be safe there. Sorry about your mom and hope she recovers well.
Jamie
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#17 Shotzy1313

 
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Posted 13 October 2007 - 03:41 AM

Thanks Mamaw and Jamie and the rest of you, I am continuing to read these forums, and check here for more advice. My doctor said to continue eating gluten till the biopsy so I am taking the time to eat a lot of my favorite foods for the last time. I will have to look into that thing in Columbus I go up there all the time so im familiar with the city. My moms slowly recovering, she’s on the right path; it will be a long time most likely.
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#18 NoGluGirl

 
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Posted 13 October 2007 - 10:34 PM

Dear Shotzy,
You will make it! We will all be anxious to hear about your test results once they come in. Be sure to let us know how they turn out! Meanwhile, eating your favorite foods is a good idea. However, going gluten-free is not a death sentence for your taste buds. You would be surprised how good some of the stuff is!

Tonight, I had Bell and Evans Chicken Tenders, and they are like the kind you get at the restaurant, but without the stuff that makes you sick! Katoos are just like oreos, and they are delicious! My brother sent me some! I was ecstatic! It was gluten-free hog heaven! Do not worry, we will have you covered with pizza and all kinds of other things.

I hope your mother recovers quickly. It can be a long road. Just be sure to take care of yourself first. Otherwise, you cannot help anyone else. We all send our prayers and good energy to you and your family!

Sincerely,
NoGluGirl
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Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985
Asthma - 1994
Ovarian Cyst - May 1999
Anemia - 2000
4 More Ovarian Cysts - March 2000
Bloodwork for Celiac - November 2000 negative
Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy
Fibromyalgia - June 2001
IBS - June 2001
Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.
Thyroid Disease - August 2004
Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

#19 jizzzzie

 
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Posted 20 October 2010 - 12:58 PM

Shotzy, if you are actually a Celiac, meaning it's not just a gluten sensitivity, and you actually have full on 100% Celiac Disease like me, then here are some rules.

DO. NOT. EAT. GLUTEN. (Well, duh, right?!) For me, I can't even have a quarter of what can fit under a baby's pinkie nail. And some people even react when they touch gluten.

-IF YOU HAVE HAD TROUBLE WITH BREAD AND BAGELS AND SUCH, TRY UDI'S BREAD AND BAGELS! (I think white plain are the best) They taste EXACTLY like regular bread, if not better. And you can have them cold, and they still taste good, which is amazing.
-Bionature Pasta, (I don't know if you can eat it, I used to be able to but I am on soy restriction as well as dairy and I can't eat that now, but when I did, delish.)
-Kinnikinnick Sandwich cookies
-Glow Cookies
-Bard's Beer
-Glutino pretzels.
-alot of chips like lays are gluten-free

Just to name a few. Hope I helped! (:

~Julia
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~January 2010 diagnosed Celiac Disease
~IBS since.. forever!
~Anxiety, emeteophobia
~Lactose Intolerance
~ *in the past: fructose, glucose, soy intolerance.. Small intestinal bacterial overgrowth..*
~Recovery-major weight gain difficulty
~Food fears, previous eating disorder ^related to food fears, not body image^
Meow! :3

#20 jizzzzie

 
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Posted 20 October 2010 - 12:59 PM

oh an also, biopsys don't hurt. I had one. Fell asleep. Woke up. I was dizzy and groggy, but not in pain in the slightest (except a sore throat but that just might be me.)
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~January 2010 diagnosed Celiac Disease
~IBS since.. forever!
~Anxiety, emeteophobia
~Lactose Intolerance
~ *in the past: fructose, glucose, soy intolerance.. Small intestinal bacterial overgrowth..*
~Recovery-major weight gain difficulty
~Food fears, previous eating disorder ^related to food fears, not body image^
Meow! :3

#21 GFshay

 
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Posted 20 October 2010 - 02:13 PM

I totally sympathize. I'm only a bit over a week of being gluten-free post-biopsy. Seriously, until you get the endoscopy, enjoy all your glutenous foods! I actually started a blog and kept track of the stuff I enjoyed before going gluten free and it made it more fun, even knowing I might be hurting my intestines. But it's all for the sake of getting a definitive biopsy, so try to keep having gluten till then!

I also had anxiety and still do, but it has been getting better as I've taken gluten out of my life. The only exception is the anxiety about foods maybe contaminating me, but that's a bit more reasonable and controllable, I think.

I've heard the "bible" of Celiac is Peter Greene's "Celiac Disease: A hidden epidemic". It's a book that really does a good job explaining how it works and what the testing, diagnosis, and lifestyle change is like. I've been devouring it since my test results were finally positive. Just don't let yourself be tempted to take gluten out just yet!

Also, if you have an iphone or ipad, they have an app called "Is it Gluten Free?" which you have to buy but it's very worth it. It keeps a pretty huge database of things that have been verified gluten free (or not).

Good luck! And feel free to browse my blog if it might make you feel less alone (listed in my profile).
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Positive blood test on several indicators Aug '10
Visual damage seen via endoscopy Oct '10
Diagnosed Celiac with "3B" damage via positive biopsy Oct '10

Gluten Free since 10/9/10

#22 Darn210

 
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Posted 20 October 2010 - 02:24 PM

Just thought I would throw in that this thread is three years old . . . pretty sure that the original poster has had his/her biopsy by now.
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Janet

Experience is what you get when you didn't get what you wanted.


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#23 GFinDC

 
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Posted 20 October 2010 - 05:34 PM

I don't know Janet, I had to wait 4 months to see a celiac specialist, just for an office visit. Of course by then I had gone gluten-free and already knew I had celiac or extreme gluten intolerance or something darn nasty and gluten related. Maybe this feller will pop in and tell us his results. Then again he last visited in 2008, so maybe not.

What the hay, it's a good thread with a lot of good info anyway. I am liking your blog GFShay.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#24 Marz

 
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Posted 21 October 2010 - 03:47 AM

Gah, what is with people resurrecting old threads??? The OP will probably not be around to see your insightful comment, just keep it to yourself :P
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

#25 jizzzzie

 
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Posted 22 April 2012 - 08:30 AM

That is so true, I don't even think I realized.. And now it's ... five and a half years later!! LOL :lol:
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~January 2010 diagnosed Celiac Disease
~IBS since.. forever!
~Anxiety, emeteophobia
~Lactose Intolerance
~ *in the past: fructose, glucose, soy intolerance.. Small intestinal bacterial overgrowth..*
~Recovery-major weight gain difficulty
~Food fears, previous eating disorder ^related to food fears, not body image^
Meow! :3

#26 Cujy

 
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Posted 22 April 2012 - 06:26 PM

I don't know if you have abdominal pain, but I did, intense pain actually that landed me in the ER three times before being dx....the biopsy was actually enjoyable for me!!! It was the only time that I was pain free before I started slobbering on the pillow and when I woke up! :rolleyes:
Yes its uncomfortable knowing what they are going to do, but the sedative is wonderful (if you have pain)! :lol:
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