New Celiac Patient...14 Months With Questions

[wendyspi]

My son Kyle began having diarrhea at 4 months old. Over the next few months, as he began to eat solid foods his weight failed to thrive and he would never gain weight because of his constant diarrhea. About a month ago we saw a stomach doc who recommended the endoscopy. The test reveled that his nodes were swollen, but it did not completely look like celiac. After she consulted with a few pathologists she concluded that Kyle was possibly at the beginning stages of celiac. At this point we decided to remove all Gluten from his diet and the diarrhea stopped within a day. As we waited for the blood test results, we continued with the no gluten. His cheeks became fuller and he finally weighs over 20 pounds. The blood test results came back negative so the doctor told us to start the gluten again to see what would happen. On Saturday I gave him mac and cheese, cheerios, and goldfish crackers (all things he use to eat), by Sunday the diarrhea began to come back. We called the doctor and she told us yesterday that this confirms the diagnoses of Celiac. A few questions...since it can be genetic (at least that is what I read) I am thinking I should get tested (I think my cousin may have it so it most likely comes from my side of the family). Also are there any support groups for children in the Santa Clarita (Valencia) area of Southern California. Also, we tried the gluten free bread and waffles at Trader Joes and Kyle does not like either do you have any suggestions on where to find products that are gluten free that are good in Southern California? Can anyone recommend any books or cookbooks on Celiac? Thanks!

[Guest jhmom]

Hi wendyspi, welcome to the board!

Yes Celiac is genetic and you should be tested even if you do not show the classic symptoms. I do not live in your area but did find this information here on this board regarding support groups. Click Here for the link. Have you tried VANS frozen waffles? They are good, my daughter and I both enjoy them very much. As far as bread I have not found any in the stores that is worth eating but I did find some online at Open Original Shared Link. The bread was soooo good I was able to make some french toast! As far as books and cookbooks go, I bought the Incredible Edible gluten-free cookbook for kids by Sheri Sanderson, it has a lot of recipes that children will eat and party ideas / menus. I have heard a lot of great things about Danna Korn's "Wheat Free Worry Free" and "Kids with Celiac Disease".

I hope this helps you

[lauriel234]

WENDYSPI -

My son likes the tapioca bread made by Ener-g. This company makes many different types of bread, rolls, bread crumbs, cookies, pretzels, etc. They have a web site and you can do a mail order with them. The bread isn't too bad if you toast it a little. My son also likes it made as french toast.

[brdbntL]

Hi,

My daughter has been diagnosed for about 1 month. I haven't bought any breads, but I have tried to make english muffins and pizza- two of her favorite things before Celaics. She thought they were disgusting. The one thing I have made though is a simple muffin recipe that I got from this website- in the baking section under cornbread and muffins. I have had to make them 3 or 4 times she loves them with peanut butter. If you can't find it. Let me know and I will repost it for you. Any of the Bette Hagman books seem good. Like I have said we haven't been at this very long, and I never cooked before, but I am learning that it just takes practice. Also the baking section has lots of neat ideas that look yummy.

Laura

[aldociao]

My son Kyle began having diarrhea at 4 months old. Over the next few months, as he began to eat solid foods his weight failed to thrive and he would never gain weight because of his constant diarrhea.

Wendyspi,

I wonder if the old-fashioned idea that grains, and concentrated proteins like peanut butter, should not be introduced to a child until six months old or, as some have said, until 12 months of age or not until the molars start to form, indicating when the body is best able to deal with the carbs. (Unfortunately, I don't have any of this material at hand. I believe it was a common understanding among Natural Hygienists of the late 19th and into the 20th c., and may be among others unknown to me.) This is not a very popular idea today among pediatrians or even among new parents. My niece recently started her 4 month old on oatmeal and she seems to thrive on it, but I wonder if this is setting up future problems. And I wonder, further, if the seeming epidemic of infant gluten sensitivity is a result of just this perhaps too early use of grains. If your baby did better without the gluten foods, maybe the better answer is not that she is celiac but that her as yet immature digestive system is not yet ready to properly digest these foods, especially if she is carrying the gene for celiac disease. I know this sounds simplistic--and I guess it is--but maybe the truth, contrary to what we've been led to expect, is just that--the elusive obvious. Maybe we should not go, so quickly, to the "experts" for their answers, for their testing and retesting, especially with a condition like ours when the answers seem to be so readily available--like on this Board.

I'm still learning and have quite a ways to go before I can match the knowledge of so many here who have helped me, and others, in handling this condition. Judging from the advice I'm hearing from the majority of peds mentioned on this Board, I think that if only they would log-on to this site before giving their advice and listen to the knowledgeable ones on this board rather than give the advice so many of them are giving, there would be much less uncertainty and grief for parents of younsters with troubling symptoms. --Aldo

[wendyspi]

Aldo,

Interesting theory, but we did not start Kyle on baby veggies until 5 months, fruit at six months and bread/grains until 7 months. By 9 months is when he began deloping major problems. He had his first episode at 4 months but we think he may have gotten the Gluten from my breast milk...since he was not eating any food yet.

[flagbabyds]

I live N. Cali in Stanford so I know that is not anywhere near you but if you are ever in the area we have a Bay Area ROCK group which is a blast. We have just started a teen group because the kids group is gettting so biggggg!!!!!!! we have like 15 kids which is a lot to have at your house I have all of Betty Hagmans books my mom is on the back of More from the Gluten free Gourmet that was written a long time ago when I was 4 and now i'm almost 14. The incredible edible gluten free foods for kids has a great pizza crust recepie. My mom makes excellent bread and you can contact me @ flagbabyds@aol.com if you want that recepie, we won the bread tasting contest in the bay area. I HATE energy and kinikinik (SP?) bread and anything not homemade because it is hard as rock and most kids think that so you might want to try making your own bread, that's what has worked for me. cookbooks are good things to have around if your child says "i want _______" then you can just look in a gluten-free cookbook and make it for him/her

Molly