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Hello--New & Scared


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9 replies to this topic

#1 Michlootz

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Posted 29 December 2012 - 09:54 PM

Hi! I am very new to the celiac world last week had blood test and my GI doc told me it was positive for celiac disease.My tTG was 100, I am having an endiscopy on Jan 10. Will the doctor be able to tell me right away or will I have to wait again for results? I plan to go gluten free on Jan 10. :( I was diagnosed 15-20 years ago had extremely bad runs and lost about 30 pounds that lasted for several months. After going to several GI's last one told me back then I had ciliac disease-- (don't remember what was done) but the next day the runs stopped and never started again--so I continued to eat everything & anything. This past year, I developed an annoying itch, blood test from dermatologist found elevated platelets 575 at highest. Went to hematologist/oncologist and platelet levels had dropped to 435 by then,(stop craving pretzels) but he ordered all the cancer tests-- and came back negative. :)) He took platlets again and dropped couple more points. Reading something about thrombosytis (sp) and it mentioned celiac disease and jogged my memory. This past year I also suddenly developed a severe craving for honey wheat pretzels and consumed half bag a night for quite awhile--that is when itching in hair and face usually sometimes all over) increased---then the craving just stopped. No blisters or rash on skin, but have had lots of canker soars especially over the past few years, also tingling in my legs I thought was Restless Legs.Took Hylands Restful Legs and then it went away when taken. I don't know which way to turn, have started buying gluten free foods in Whole Foods, but WOW, really expensive!! I don't like to bake so that's out. I really don't like to cook much either. Hubby does most of the cooking, he's Italian so we eat lots of pasta. Now I hear about cross-contamination and am really worried to let him do the cooking as he might forget. I read the Newbie 101 and had good info, but am feeling over come by all of this on what to eat and not eat--pluse the expense worries me too--we live on a fixed income.Nobody told me at the dr's office about how you have to eat gluten till they do the biopsy so ran out right after appointment and got gluten free stuff--thank heavens I read you have to eat normally BEFORE the endiscopy for it to be accurate. Everyone keeps telling me how great I am going to feel, but I feel good now, minus the annoying itch and canker soars.
Please help can anybody give me some pointers I am feeling soooo alone...Thanks for letting me vent.....
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#2 shadowicewolf

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Posted 30 December 2012 - 12:40 AM

Its not as bad as it sounds. Really. I'm getting close to two years in, and it has become normal for me.

First off, gluten free foods are expensive. No doubt. It is best to do a whole foods diet (nothing processed!) for the first few months. But, if you just have to have something, a substitute can be found in the gluten free goodies. I don't bake a lot myself, but i have gotten pretty good at making coffee cake :)
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#3 Ollie's Mom

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Posted 30 December 2012 - 06:54 AM

For your hubby - tinkyada rice pasta is excellent. My non-gluten-free friends say it tastes like the real thing.

The diet is doable. It just takes some getting used to. You have to get into a whole new mindset.

And as for the cost, I actually find my grocery bill is smaller now because I buy mostly whole foods. The processed stuff (whether gluten-free or not) is expensive.

You've definitely come to the right place for advice and support. Good luck!
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#4 GottaSki

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Posted 30 December 2012 - 07:54 AM

Welcome!

This really is very good news - I won't kid you - the transition is tough, but once you learn how to replace all your favorites life becomes much easier and you gain health!

Read as much as you can and ask loads of questions - it really does help speed the transition.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 GFinDC

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Posted 31 December 2012 - 09:38 AM

Hi Michlootz,

Welcome to the forum! :) Doctors used to think children outgrew celiac disease, but we now know that is wrong. So if you had it 20 years ago you still have it today. It just doesn't go away. Sometimes children do have a period of reduced symptoms for a while, and that's why they used to think celiac would go away. But the symptoms always come back later.

The first couple months of gluten-free can be a bit tough, getting used to eating different foods. You should really start doing your own cooking though. Like it or not, your health depends on eating gluten-free. Starting out you should plan on eating mostly whole foods, and very little processed foods and baked goods. Foods like plain meats, fruits, vegetables, and most nuts are naturally gluten-free. So they don't cost any more for us than they do for other people. And processed foods are expensive compared to cooking whole foods. You pay for a lot of packaging and marketing when you buy processed foods. If you can find Mission brand or other corn tortillas they are a cheap sub for bread. You can warm them up a little and make wraps. Don't get the flour tortillas though. Chex gluten-free breakfast cereals and gluten-free Pebbles are ok. Betty Crocker has gluten-free cake mixes too.

If you aren't cooking your own food, it is difficult to know what ingredients are causing you symptoms. So sticking with simple foods with limited ingredients is good.
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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

#6 DavinaRN

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Posted 31 December 2012 - 07:36 PM

It is an adjustment...for me it was easy to say no (stomach virus sick within an hour, most recent episode ended with ER trip for anaphylactic shock--testing Jan 11 for wheat allergy vs gluten intolerance with secondary allergy). As to what to eat, I prefer the combination flour pasta (corn, quinoa), even DH said it was good. We do cook both, separate strainers. It is just to expensive to feed 10 people gluten free pasta when I'm the only one with issues-just Sunday dinner, don't feed that many daily :)

Breakfast is usually egg substitute omlets or chex cereal. Lunch is either left overs or turkey/cheese roll-ups and chips. Make sure to read the labels, some lunch meat has gluten. Chips do also such as Pringles (which happens to be my favorite).
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#7 Michlootz

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Posted 01 January 2013 - 08:31 PM

Thanks to those that posted a reply to me. It sure feels good to know there are others just like me out there. :) I forgot to mention I also have diverticulitis too--so all Nuts are out for me-and Pop Corn too. :( That was disovered when I had a colonoscopy done a few years ago. Does anyone know if olive oil is gluten free, or what brand can I get that is? How about mouthwash & pesto sauce is it, or could anyone know what brands are gluten free?......Thanks!..... :blink:
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#8 mushroom

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Posted 02 January 2013 - 12:16 AM

There is no gluten in oilive oil, and there shouldn't be in pesto. Mouthwash probably not, but as always, check the label.
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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

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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
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Now tolerant of lactose

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#9 GFinDC

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Posted 02 January 2013 - 05:45 AM

Hi Michlootz,

The endoscopy should include taking biopsy samples, 5 to 8. The biopsy samples are usually sent to a lab for review. So the results can take a week or 2. It is usually ok to start the gluten-free diet while waiting for the results, but there have been times when the results were lost and the tests had to be redone. That's unusual tho.

There is a skin rash called dermatitis herpetiformis that some celiacs get. It causes intense itching.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/
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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

#10 GlutenFreeIsTheBest

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Posted 07 January 2013 - 10:07 AM

I agree with GFinDC completely about cooking yourself. When you cook at home you always know you are safe from gluten, but when you eat out you are always risking someone doesn't understand cross-contamination.

Other advice I can give is don't worry about replacement foods...they normally just disappoint. (gluten free bread, brownies, cookies, etc)
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