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Socaljim

By Socaljim
in Coping with Celiac Disease

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Socaljim Newbie
Socaljim
Posted

Hi all,

I'm new to the forum. I had never even heard of celiac disease till 2 weeks ago.

My Dr. said to find out what had been causing my diarrhea for the past several years

he would do some blood tests. He called me last week and said that I "tested positive

for all the anti-bodies for celiac disease" ?? I wasn't sure what that meant. He spelled

it out for me so that I could look up great sites like this one on the net. I had

read on one of the other sites that the blood test was only 90% accurate. So I was hoping for

that 10%. Come on 10%. Then I had my endoscope / colonoscopy today at 11:00am PST. The Dr took a biopsy but said by the look of my small intestine (it was scalloped) even with out the results of the biopsy he was 99.9% sure I have Celiac Disease. Come on .1% :) I had been putting off going gluten free till I had the results of the endoscope. It seems like it is going to be very hard for me. I eat a lot of bread and pasta. I have been reading a lot of your posts and I have come up some questions I hope some of you can help answer for me since my follow up with my main Dr isn't for a couple weeks.

1)How common is it in your siblings and offspring? Both my sisters, a Niece and a nephew have symptoms. I

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VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Jim,

Welcome to the board. Feel free to ask any questions you may have about celiac disease.

To answer your questions:

My mom has celiac disease. it is hereditary. My brothers refuse to get tested (they aren't the brightest folks in the world at times).

Depending on who you talk to, the blood tests vary in accuracy. However, if you test positive, you are probably positive. The majority of problems associated with it are "false negatives" not "false positives".

CC is a big deal and you will become educated about it as time goes on. You can still make your kids sandwiches, just make sure you wash your hands before you eat. Think of gluten as poison. If it touches something you eat or put into your mouth, don't eat/touch it (without cleaning your hands).

I had the same symptoms you had. It gets better when you go gluten free. I used to love regular beer, pasta and bread too. However, I havent purposely ate the stuff in 10 years. You will get the hang of it. Everyone complains in the beginning :)

happygirl Collaborator
happygirl
Posted

Welcome to the board!

It sounds like you will have the gold standard of diagnosis...positive bloodwork with a positive biopsy.

The current statistics are that 1 in 133 Americans have Celiac. About 1 in 20 family members of a Celiac have Celiac. All Celiac experts recommend that ALL first degree relatives are screened via the blood test, regardless of symptoms/no symptoms. I would urge your family members to be tested.

Keep in mind that your kids may never have Celiac. Or, they may "get" it, but don't have it right now. You can develop it at any time....so a negative now doesn't mean they won't ever have it. On the other hand, they might always be ok.

Unless you have a wheat allergy, you can be in the same room, make a sandwich, etc. But you would have to wash your hands, not use the same utensils on your food, not make a sandwich for you with the same "dippables" that now have bread crumbs in them, etc. Gluten free means gluten free, not gluten lite. It is best to eliminate any sources of gluten that you are aware of. There are many on the board that would be equally as sick as pre-gluten free as they were if they weren't careful about CC.

I hope this is a good start for you. If you are looking for a good book, I recommend the one in my signature. It's my favorite :).

Oh---and to replace wheat pasta, try tinkyada (a rice based) pasta. Its great, and you can't tell the difference. www.tinkyada.com for info on it, but you should be able to find it at many stores.

Happy you found this site.....stick around and let us know what we can do. Best of luck!!!

Lisa Mentor
Lisa
Posted

Hey Jim,

Your brighter days are just beginning. You have to jump through a few hoops to get there, but this is a new beginning.

Start simple: Fish, meats, rice, potatoes, fresh veggies, fruits. Dairy may be an issue for a time being. (lack of villi, absorbing issues)

Your best best is to read, read and read. We have product information, product warnings, recipies... the list goes on and on.

Gluten free does not mean a loss of life style, you just have to tweek it a little and know what to tweek.

This source is wonderful. No question goes unanswered.

Welcome and always feel free to ask a question..that's why we are here.

rinne Apprentice
rinne
Posted

Welcome Jim. :)

Ditto to the answers above.

Crystalkd Contributor
Crystalkd
Posted

I'm 5 weeks into the diet. The first couple were the hardest. I use the pasta that has already been suggested and love it. I don't eat a lot of bread right now but Whole Foods has a good gluten free seclection of bread. I seem to be eating corn tortillas more now and they hold me over fine. I'm still trying to figure out the lactose thing. I didn't have any for the first two weeks but have been eating more of it and I don't think my body likes it right now. I had "grey area" blood work and neg biopsy but have been doing great on the diet. As long as I avoid cross contamination I feel better than I've felt in years! Don't lament for the things you can't have just find new ways to create them.

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