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New Cd Diagnoses....need Help
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6 posts in this topic

Hi,

My name is Laura, and I just found out that I have Celiac through the blood test results. I am suposed to see a GI specialist. Should I look for a specialist for Celiacs?.......

Also, I am just trying to learn the secrets of the diet. I have been on it for almost a week, and am already starting to see some changes. Im a little overwhelmed right now, but just tyring to get a grip on everything. Any comments that might help would be greatly appreciated.

A couple questions that linger for me right now:

Who should I see for a Dr?

How young can a child be tested for the same disease? I am concered about my 2 year old twins.

How serious is cross contamination?

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Hey Laura!

Welcome to the board :rolleyes: . From my experience, my family doctor sent me to a GI who deals with all types of stomach problems... and she discovered the celiac. So I'm not sure if you want to go to a specialist who only deals with celiac disease... You probably won't find many who just deal with celiac disease... If the blood tests already confirmed the disease, I would expect your GI to detect damage to your instestine when he/she performs an endoscopy. In my case, my GI deals with lots of other problems as well, and she diagnosed the celiac right off the bat with much accuracy.

When you're first learning about what you can and can't have, it will feel like a lot of information... that's because it is. But you'll pick up more and more as you read. Also, these message boards are amazing. You'll find very helpful people who can give advice, and also, they're hear to simply listen when you need to vent.

Cross contamination, as basically everyone on this board will tell you, is a very important concern. When I was first diagnosed, I asked the same thing. But with time, and some accidents, I've learned that even a crumb does damage. And I'm not sure what you feel after you eat something with gluten, but even a crumb of bread makes me ill for days. Nonetheless, whether or not you feel sick, if you have celiac and eat something with gluten, damage to your instestine will occur. So don't mix utensils from jars and butter, etc. onto your gluten-free food after others have used it on their non gluten-free bread. Wipe up your counters and be on the lookout for any ways that gluten can get into your food... for example when baking non gluten-free food, watch out for flour in the air settling onto your food and your counters etc. :unsure:

I'm pretty sure that 2 year olds can get tested for celiac. You may want to double check, but from what I've read on the boards, many people test their children.

Here is a helpful link to some gluten free foods... If you need anything, please feel free to ask. We're more than happy to help! :)

http://homepage.mac.com/sholland/celiac/GFfoodlist903.pdf

God bless,

Newbie

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Hey Laura, Welcome. About cross contamination. I usually don't eat out much, but on Wednesday, my husband took me for lunch at a place where we often eat breakfast. I had plain burger, cottage cheese and tomatoes and I got sick about 15 hours later from cross contamination of the grill, which was used for heating up buns. Believe me it is a problem. So be very careful about where you eat out and feel better with your new diet. Shirley

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Hi Laura,

Are there any celiac support groups in your area? That's be the best way to find a really great doc, and to get the best help for your children. Most doctors, in my experience, are pretty clueless - so you'll save time and heart ache by getting a recommendation. I'm really really happy for you that you've been diagnosed! I was diagnosed when my little girl was 4 - how wonderful that you will be able to share the best years of your life with your children. My daughter is now 7 and has been gluten-free for 2 years.

Good luck,

Laurie

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Hi Laura, welcome to the board. My grandson was diagnosed by Enterolab.com at a month or so of age, after becoming violently ill when drinking cow's milk formula. This stool sample can be ordered online, returned by mail, and can also diagnose whether your child carries the gene for Celiac, is allergic to milk and dairy, along with several other options.

When you go to that website you'll see the tests they offer. Best wishes! Welda

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If you're going to this GI for further celiac testing you need to continue eating gluten for accurate results.

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    • Hi, you can try reporting your own post.  That should alert the site admin of your request.  I don't think they can delete your posts, but changing your user name may be possible.
    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
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    • It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will.  Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories.   It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next.  He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
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