Looking For Answers

[mama2two]

My daughter is 4yrs old and has been having abdominal pain, mucus in stools, fat in stools (showed split on lab sample), once my husband said it looked like someone had poured oil in the toilet, she did have a bout of diarrhea lately, I'm sure if this is related or not, but she frequently has to go have a BM after eating, her bowels move usually at least 3 times a day. My husband has loose stools frequently during the day as well, decided he was allergic to oameal, when he would have painful gas and diarrhea,after eating it. We did do lab work to check for celiac disease, the results were inconclusive. It said that it was probable that she had it, but would require genetic testing. My dr told me to start her on the gluten free diet this summer, as she is in school right now. I have been trying to learn more about this, since is seems that drs are not very helpful with this disease. I have bought some of the gluten free food products, but some do not taste good and they are expensive. I hate to put her on such a restricted diet when we don't even know for sure if she even has the disease, it is very frustrating. I went online to see if there were any support groups for this in my area, only one about 1.5 hrs away. I do want to try to go gluten free this summer and see what happens with both my daughter and my husband. I really hope she doesn't have this, it seems so hard to get a straight answer. My dr said the real test would be to do an intestinal biopsy, but I hate to put her through that. any advice would be appreciated!

[lovegrov]

First, neither one should go gluten-free if you plan more tests. Goign gluten-free can mess them up. In addition, the gene test can show whether they have the genes, but that doesn't prove they have celiac. Only a small percentage of folks with the gene(s) have celiac.

The intestinal biopsy really is not all that big of a deal and she won't remember anything about it. As with anything like that, there's a small risk, but it's very small.

Specialty gluten-free food can be very expensive, but there are many naturally gluten-free things that don't cost more. I rarely get the gluten-free stuff, except pasta and crackers, and the cracker I get (Blue Diamond Nut thins) cost the same as regular ones.

I agree you don't want your daughter going gluten-free unless she has to, but you definitely don't want her eating gluten if she shouldn't.

richard

[Pacer]

hi, I am sure the experts here will set me straight if I'm wrong, but if your child is having discomfort, and your goal might be to try gluten-free around summer, what about a brief experiment this week? Maybe even starting friday and over the weekend?

You can make it a couple days gluten-free without going whole hog into gluten-free products and revisionst cuisine, especially if you eat meat. My 6 yo had cramps , D, and vomiting and we took him off gluten, he improved visibly within days. My DH is a confirmed celiac so we have a bit of experience with the lifestyle, though. We do not use a lot of the imitation foods though.

Can you try that - a couple days of omelets, broiled chicken, mashed potatoes, ice cream instead of cookies, that sort of thing?

I agree that they want the patient to be ingesting gluten if they are going to do the test. in our case, we did the informal gluten challenge 3x and all of the times, the symptoms came back with the gluten. If you witness a similar experience, perhaps that will help you make your decision of what to do. Seeing your kid get so much better so quickly (if it happens) is a pretty powerful motivator.

HTH

HEIDI

[Guest maddiesmom]

My daughter had the same symptoms as your child is having... she has went thru alot of testing... blood work came back that she has the gene for Chron's and a few weeks ago they did a colonoscopy and upper g.i. and came back that she also has the gene for celiac. After doing alot of research I went ahead and put her on a g.f. diet last week and she has had zero problems since. So whether or not she has full blown celiac I don't know I just know the diet has help her and that is priceless to me. I would try it over the week end too and see if her symptoms stop.. then after the testing is over I would try it again. My daughter did great with the colonoscopy... she didn't remember a thing.

[Juliet]

Here's a link which can help you get started with going gluten free:

Open Original Shared Link

It's created by another user here, Nini, and it's pretty extensive.

Also, here's the address for another posting from NoGluGrl - she often will list common gluten free items:

Open Original Shared Link

The most difficult aspect of going gluten free is changing how you approach food. We rely sooooooooooo much on starchy foods, especially when they're young, that it's hard to think how to plan our foods. What is really good about changing is, at least for us, our meals are now more well-rounded because we don't just rely on starch. We do roll ups with cheese, sandwich meat, and lettuce, popcorn is always a hit, fruit & applesauce, corn chips with hummus, quesadillas with corn tortillas, we also do sandwiches with Corn Thins (like rice cakes but made with corn - they're thinner but larger in diameter and about 26 in a package at under $2), the new limited edition Spiderman 3 cereal from General Mills as a snack, pumpkin seeds, pecans, dried fruit, Bumble Bars, individual cheese sticks, and Blue Diamond rice crackers (about the same price as regular crackers). You have to be careful with dried fruit sometimes (some manufacturers use gluten to help separate the fruit & at times shredded cheese). His diet is has more protein in it and a less starch than before (although I wouldn't call it a high protein diet, just higher protein than most pre-schoolers). Once the mind switch occurs, it's honestly not that difficult at least from home. Cross contamination (often shortened to "cc" here) when you go outside of the house is a bit more difficult. You may want to read up on some of the other posts on that issue.