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So, What Do I Do Now?

MizMimi

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MizMimi Newbie
MizMimi
Posted

I found out just this am, that I have Celiac disease. My Dr directed me to this site for support and info in addition to his huge packet of do's and don'ts, so I thought I would introduce myself. I'm not even sure where to start in regards to shopping, and I'm afraid to even eat anything! Anyway, I'm Mallissa, 35 y/o from Ohio and I have been married for 10 years in May. I have always had one health issue or another, but I never attributed it to something like this. I am a bit overweight, have pcos and fertility issues, as well as other things. Oh look, I'm rambling now. lol I guess I'm just at a loss as to where I need to start this journey, and any advice or encouragement would be great. Thanks.

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mamaw Community Regular
mamaw
Posted

Hello & Welcome

First off I must say you found a very wise doctor directing you to this site...There is a wealth of info here.. It does take time to go through it all...& process...

Not sure where in Ohio you reside but there are several nice places to shop. Jungle Jim's.Cinncinati, RaisinRack in Columbus & Canton. Whole Foods, & Trader Joe's , mustard Seed, Heinen's plus many more.....

I suggest taking steps or phases in learning the gluten-free lifestyle.Start out with natural gluten-free foods you know ie: naked meats, veggies, fruits, fish.You can add your own seasoning to flavor.. McCormick is one that clearly labeds...Do not eat anything with marinades, gravies, steak dust,coatings....once you learn what is safe then you will be able to understand the ingredient list & make safe choices...

Buy a couple of mixes to hold you over until you feel good about baking yourself& also so you don't feel food deprived. Boxed cookies , pretzels &things like that..Many chips are gluten-free such as Lays, doritos, corn chips.. BUt always read the labelas ingredients change...Stay away from add-ins such Breyers IceCream is gluten-free but when cookies are added init becomes not safe...

There are several great support groups in parts of Ohio. Check out the CSA& GIG sites for locations..

Another decision you will need to decide on is if you will have a totally gluten-free household or a shared kitchen...a family decision!

If a shared kitchen is the way you will go then you need to clean out & make a separate space for your gluten-free food...Check your cooking pots & pans, cutting board, plastic utensils, teflon coated things, toaster, hand mixer, bread maker.any of these items that are scratched or damaged in any way needs to be replaced & new ones keep apart for your gluten-free cooking..I use color coded for my gluten-free utensils & keep in a separate drawer....

If you enjoy baking & have the time homemade is less pricey& the way to go. Some do not have the luxury of time or care to become a gluten-free susie homemaker...Here is a short list of some of the better flour blends.....

BetterBatter(site has loads of recipes

Jules

meister's

Domata Living Flour

Tom Sawyer

Authenic flour (super fine white & or brown rice flour)( regular ground makes for a more gritty end product..

There is also hidden gluten in many products.ie: beer, soy sauce, malt

Depending on how sensitive you are or will become some other areas to check is pet food,

Take your time tolearn the basics then move on to another step. By not over-whelming yourself & learn as you go you will have less chance of making mistakes & getting ill. Mishaps do happen along this road but again use those as learning curves & don't beat yoursel up..

Most important is don't cheat & get in that habit...that is why it is so important to have a good supply /variety of gluten-free foods you can eat... so you never feel deprived..

This journey can cause symptoms just as it would when you would loose a loved one.. All normal it's okay to be angry, sad, & denial but don't let it take over.. You control this disease - don't let it control you..

This is the best thing to have because it reqires no chemo, no radiation, no deadly drugs, no injections, nothing but a diet change..how lucky we are!!!!! Be positive

Let us know your questions...

blessings

MAMAW

Victoria6102 Contributor
Victoria6102
Posted

Mamaw, Doritos are not gluten free. Don't mean to sound rude, just wanted to make it clear that they are not .:)

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Hello..and welcome from a fellow Buckeye! You're very fortunate to have a Dr. that sent you here. There's a wealth of information here that will help you in this journey.

Mamaw has given you "the list" of things to look out for. If you have any questions along the way be sure to ask.

Most of us are happy for our DX at first. It validates the symptoms we've had. The happy part wears off a bit as we realize all of the changes we have to make. It can be pretty depressing when you go grocery shopping if you think of the things you can't have. Instead, focus on the things you can have and shop the outer perameter of the store for fresh veggies and fruits, unprocessed meats, seafood, eggs, and dairy if you tolerate it.

Many of us find that we do better if we skip milk and dairy at first. Once you've done some healing, you can add it back in.

mamaw Community Regular
mamaw
Posted

Oh you are not rude but some of the doritos are gluten-free: some are not. they all are clearly labeled on each flavor!!! Same with many potato chips ...everyone needs to become a label reader....

MitziG Enthusiast
MitziG
Posted

Welcome Malissa, and mamaw is right- smart doctor sending you here! you will find everything you could possibly need to know about Celiac from this forum. More importantly, it will be accurate information! Much of what drs and nutritionists will tell you, or what you read in books or online is outdated, or just plain wrong! The people on this forum have exhausted every resource on celiac disease, and they live with it every day. They will point you in the right direction!

I came here a year ago today, when I was diagnosed and overwhelmed, just like you. A year later I feel better than I ever dreamed it was possible to feel! You will make many mistakes along the road to becoming gluten free, (some of them painful!) but don't get discouraged. It is a learning process. Eventually, it will all become second nature. This weekend I am attending my first wedding since being dx (along with both of my kids who were dx) It is out of town, require 2 nights in a hotel, so I have had to do some homework regarding where and what to eat, and as usual, we will be toting a cooler of food with us. Yes, going out and visiting friends is a bit more of a hassle than it used to be. But it isn't an end-of-the-world type hassle you will come to find out. And the rewards of waking up every day feeling WONDERFUL make it well worth the extra effort!!!

Congratulations on your diagnosis- and I mean it! Your life is about to get a whole lot better!!

jess-gf Explorer
jess-gf
Posted

I PMed you :)

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mamaupupup Contributor
mamaupupup
Posted

:) My twin daughters have Celiac...and I'm starting my testing for Celiac...

...and my girls are IVF/ICSI/PGS babies (there was NO way I'd have gotten pregnant without LOTS of intervention...which also contributes to the suspicion that I have Celiac).

For what it's worth, we LOVED Dr. Schoolcraft at Colorado Center for Reproductive Medicine. His statistics are excellent, he listens, and he altered his protocol to fit what we wanted/needed.

Wishing you a smooth transition to a gluten-free life!

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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
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