New to forum. where do I start.

[nursegirl]

Hi all, I first found this site about 8 months ago when I was diagnosed with MC after 21 days of D . I asked my GI doc about relation to celiacs and he pretty much dismissed that thought. In the back of my mind I though I could have food intolerances. After being treated with Entocort for 4 months. I was doing better for about 2 months. Then the D returned. Doc put me on pepto 4 x a day and I got better, weened off and had been fine. In the mean time I have a heart valve disease and was scheduled for valve replacement Aug. 11th. I am also a member of heart valve forum. One of the female member my age who wanted a mechanical valve was told to get a tissue valve due to the fact she had celiacs and may have trouble absorbing the blood thinner she would have to be on with that type of valve. In June I was experiencing nausea and hot flashes and had endoscopy, follow visit was Aug. 2nd. GI doc said I had duodenitis with blunted villi of small intestine. I told him about the woman with celiacs and my upcoming surgery and he said he would to blood test but was sure I did not have celiacs. Friday I had just found out that after more extensive testing tha heart surgery was not indicated at this time. I will be monitred every 6 mos. So my husband and I were enjoying the evening with a beer when the doc called and confirmed I did indeed have celiacs. Test results over 100, normal 5. So this is where I'm at now trying to figure it all out. Purchased 2 books on gluten free living, and started preparing my kitchen. Looking for all hidden traces of offending foods. I know this wont be easy, but its a lifestyle change that has to be done. Hoping to get much needed info on my new life from any members willing to share.

Judy,
Thanks for listening to my rambling on.

[Joefnh]

Well Judy you certainly have come to the right place and it seems like you have done a reasonable job getting the test results. I am not sure how if at all the heart valve issue will affect MC. For most of us here diet really is the most important part of treating this disease. It seems like msot with MC are sensitive to gluten and soy and a number of us also are sensitive to dairy.

I'm glad the Entocort and the pepto has helped you so much

Thanks for posting here and welcome.

--Joe

[Gabes-Apg]

Judy

greetings from Australia


Removal of gluten is not hard, like most things with MC it takes time and diligence.

checking the labels of existing products is a big task, I found gluten in things like herb and spice mixes,
i am not sure of your location and what stores are near you, one hint is to find a store that sells a good range of gluten free products,

in the dee's kitchen area of this website is some great information on recipes and substitutions so if you enjoy cooking, it is not hard to convert receipes to make sure they are gluten free.

here in australia, our supermarkets hold a good range of products (some of which are products that are sold in health food stores over in the states) each month i see another new product that is gluten free so our choices are expanding.

Depending on what foods you eat be mindful that gluten is in things like lollies, icecream, and sometimes chocolate, and quite a few frozen products and meals. Even hot chips have gluten on the outside.
there is a great list on this site that shows all the names of items that are effectively wheat based gluten type ingredients.

it took me about 2 months to achieve a 100% gluten free bubble.

[tex]

Hi Judy,

Welcome to our internet family. I'm still scratching my head, wondering why your doctor thought that you did not have celiac disease, when you had obvious villus blunting in your small intestine. What on earth did he think that villus blunting is associated with, if not celiac disease?

As Joe and Gabes have already mentioned, you can control both diseases by diet alone, so if you don't mind cooking, you've got it made. Here's a link to Dee's Kitchen, where you can find several hundred tested and tasty recipes that are free of gluten, dairy, and soy, plus ingredient substitution suggestions and other cooking tips:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

That's good news that you don't have to deal with surgery, right now.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[Bifcus16]

Hi Judy,

At least you know for sure now.

There are some lists on some of the gluten free sites that tell you about the extra ingredients to watch out for - like maltodextrin which can be corn or wheat. google 'gluten free list' and you'll find heaps.

It is worth doing a big cleanout of all the wheat flour and similar ingredients in your pantry and giving it a good solid cleaning. When I did this I glutened myself from the flour I disturbed, so get it over and done with.

You will find it takes time to get in the habit of checking labels on products. For the first few months you will keep finding things you had assumed were safe, that aren't. It is normal to make dumb mistakes. But now even DH just habitually looks at labels and if it has a e-number or ingredient that he doesn't know, and it doesn't say 'gluten free', he won't risk it.

Once you get in the swing, it is actually kind of fun trying out new ingredients and new recipes. If you like, you can tell us what you normally eat, and we can suggest some ways to convert those to GF.

cheers,
Lyn

[mbeezie]

It does take a bit of time to get used to the diet. I found The Gluten Free Bible (by Jax Peters Lowell) to be helpful early on - it covers just about everything you need to know about gluten.

Mary Beth

[wonderwoman]

Welcome Judy, I can't believe no one suggested that in addition to eliminating gluten you also eliminate dairy and soy from your diet. Most of us are dairy intolerant and 50% soy intolerant.

I got the book Living Gluten-Free for Dummies from the library and then ordered a copy for myself.

I also mad a lot of mistakes in the beginning but just keep reading and asking questions.

[JLH]

Judy.

I addition to the great information on this site, check out http://www.webmd.com/diet/slideshow-gluten-free-diet