Celiac Disease

Updated on November 17, 2008
J. asks from Fayetteville, GA
5 answers

My little one is showing some signs of Celiac Disease and will get tested soon. Was wondering if any moms have had experience with this with their little ones. Thanks!

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answers from Denver on

I have a little bit of experience. My little one tested negative to the blood test but thrives on a gluten free diet. We heard there are a lot of false negatives and to get an actual diagnosis, you need a biopsy. I decided to try the diet first. We are also thinking about having my husband tested because he also thrives on the diet. If he tests positive I think we will know for sure. (We'd rather him get poked!) Have you considered trying the diet first?



answers from Salt Lake City on

If your daughter does end up being diagnosed with celiac don't worry. I don't suffer from it, but most of my extended family. If you need some support I know there are acutal support groups and help out there. If you need someone to talk to, please contact me and I would gladly get you in touch with some of my relatives who have seen great success personally and with their children.




answers from Salt Lake City on

I was diagnosed with CD 3 months after my son was born. Then he was diagnosed through genetics test around 18 months; he is now 4. My son has never had non-GF food so he doesn't know any different but he is growing strong and well. Breakfast and dinner tend to be the easiest meals to prepare where lunches I find to be more difficult because the choices are limited (and I'm not too creative). I know lots of stuff but I don't want to bombard you with too much...it's a hard diet to change to, I won't lie about that. Pretty much 3/4 of all my food had to be thrown out. My main recomendation would be to go to Against the Grain in Taylorsville (54 s. about 20 something w. just before the overpass in a little strip mall area - open Tues through Sat). The owner, Diane, and her daughter both have CD and everything in the store is gluten free. If Diane isn't there to talk to, talk with her mother...they are the most knowledgeable about CD and can offer suggestions for food for your child. Charlotte's bread is the best tasting (the texture is hard to get used to) and makes great French toast. Glutino pretzles taste just like regular ones (don't get the oragne color bag, they're nasty). Lighthouse and Newmans own dressings and Le Choy soy and teryiaki sauces are GF. Rice Chex, Fruity Pebbles and the Flinstones Coca Pebbles are GF. When you go to buy anything you have to read the ingredients. Wheat, barley, malt, rye and modified food starch are all gluten. MFS can be wheat or corn based so you have to contact the company to find out for sure (corn based isn't gluten). Oh, keep all your receipts for GF food because the money you spend on it is considered a medical expense and can be written off your taxes. Cross-contamination is also an issue; make sure you use "clean" butter/pans/utensils/etc. Or you can cook GF for everyone in the home like I do (thankfully my husband isn't too picky and I'm getting better at cooking it). I'm sorry if this was too much at one time. There's lots more I would love to help you with if you would like. My email is ____@____.com if you have any questions or need some support. I had no one to turn to for help so I had a really hard time adjusting to the diet. I don't want anyone to feel the way I did so you if you need anything, let me know. I really would love to help!



answers from Denver on

My 3 year old daughter was diagnosed with Celiac in May. We've been gluten free (GF) ever since. It was a huge learning curve in the beginning but 6 months later, it's not so bad. If the test comes back positive it will be ok. I cried for a long time but now, we've gotten used to it and I can't believe how well our daughter is doing. She's like a new person! I've found all kinds of GF foods including ice cream cones and doughnuts. She never has to feel like she can't have something. It may be a little different but at least I can usually find a substitute.

Vitamin Cottage, Whole Foods, King Sooper, The Sunflower Market and Sprouts all have GF foods. It's just a matter of knowing what to look for. I bought a couple of GF cookbooks that helped. The Wheat-Free, Gluten Free cookbook for Kids and Busy Adults has been a favorite. We eat most of the same foods we ate before, they are just altered now.

If your child does come back postive I would be happy to share our favorite brands, recipes with you. It's alot in the beginning and you don't have to do it alone. Denver has a CSA Chapter(Celiac and Sprue Association). They have a kids group.

I saw the first person to respond commented on not doing the biopsy. We did it and it was hard but I'm glad we did. Our daughters blood test came back very positive, so at first we didnt really see a need for the biopsy. But Celiac is a life long disease. We wanted to know for sure. Going off gluten can help other issues, so sometimes you can mask the problem and won't know unless you get the biopsy.

Hope this helps. Feel free to write back if you have any other questions. Good luck and really it will be ok!



answers from Salt Lake City on

I have extended family with this and the best thing is homeopathic and food change. They have had so much more success with this going the alternative medicine route. You will know what is best for you but my sis does great with diet changes.

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