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New Here With Questions

oliviasmommy

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oliviasmommy Newbie
oliviasmommy
Posted

Hi everyone...I have a few questions about my daughter who just turned 3. To make a long story short she was dx with reflux at 2 weeks of ago...dx with FTT at 6 months until placed on Neocate. Has had 22 sinus infections since 13 months of age, has RAD, milk/soy intolerances and had a pyloroplasty and nissen fundoplication done. She has always complained of tummy pains and has severe bloating...followed by *blowout* diarrhea that looks greasy...almost like theres a film on top of the water. She has low Iga and higher IgE levels. She has had multiple biopsys for her reflux that has never showed Celiac. The last time I had her into the GI they told me all her sx and the amount of diarrhea she has sounds like Celiac then today I had her to the allergist and he wants her off all wheat/gluten products for 3 weeks to see if she has any changes in her sx. Im just so frustrated and dont know where to turn. I look at the symptoms of Celiac and she has many of them, except for the fact she is not FTT she is 3 years old and 38" and 29#. Any help anyone could give me would be great. Thanks.

Rachel

Olivia 3 ~ chronic sinus infections, allergies, RAD

Sydney 20m ~ g-tube fed

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lovegrov Collaborator
lovegrov
Posted

I can't tell you if your daughter has celiac but I can tell you that nobody has all the symptoms, so her FTT really means nothing. What do you have to lose by trying the diet to see if it makes a difference?

richard

oliviasmommy Newbie
oliviasmommy
Posted
  • Author

I guess the fact why Im so hesitant to try it is because I feel like we just keep getting the run around with all these doctors. First they tell us one thing, then another now they are saying take her off all wheat products and follow a the Celiac diet...why??? I guess it would be one thing if we had a true dx of something, but we dont. I am going to the healthfood store later today to get some things so we'll see what happenes.

lbsteenwyk Explorer
lbsteenwyk
Posted

Celiac blood tests in children under 2 are often inaccurate; I have even read that they can be inaccurate in children under 5. Given the long history of your child's GI symptoms, it would certainly be worth giving the gluten free diet a try. You should see a significant improvement in 3 weeks if she does have celiac disease (although you might not see resolution of all her symptoms). Don't invest a lot in special foods. Keep her diet very simple with plain meats, rice, veggies and fruits. You might purchase some gluten-free substitutes for her favorite foods like cookies, pasta or waffles - whatever she really likes. Good luck to you, and keep us posted on her progress.

tarnalberry Community Regular
tarnalberry
Posted

A positive result on the diet IS a diagnostic test, just one that takes a while and that you do in your own home.

Carriefaith Enthusiast
Carriefaith
Posted

I had a ton of sinus problems before going gluten free. I got sinus infections a lot and my nose was stuffy about 99% of the time. However, most of the problems have cleared up since going gluten free. It could be a coincidence though.

then today I had her to the allergist and he wants her off all wheat/gluten products for 3 weeks to see if she has any changes in her sx.

If you want blood tests and biopsies done to diagnose celiac, your daughter would have to be eating gluten. If she is gluten free and has these tests, she may get a false negative result. However, some people choose not to have the tests and just rely on the response and results of the gluten free diet. It's ultimately up to you, your doctor, and allergist.

oliviasmommy Newbie
oliviasmommy
Posted
  • Author

Can someone tell me the difference between a wheat protein intolerance/ wheat sensitivity and Celiac?

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Carriefaith Enthusiast
Carriefaith
Posted

In people with celiac disease, gluten damages the villi in the small intestine making nutrient absorption difficult or nearly impossible in severe cases.

Wheat allergy is a severe reaction to wheat but there is no intestinal damage.

Guest nini
Guest nini
Posted

I had a great post and my computer just LOST it...

I'll try to remember what all it was about.

My daughter was dx at 3 just by positive dietary response, the blood tests were inconclusive.

What have you got to lose by trying the diet for a few weeks and see if it helps? Don't go out and spend a lot at first buying all kinds of gluten-free foods. Stick to plain healthy foods.

sample diet:

breakfast, corn grits with butter and salt and pepper

morning snack, banana

lunch, boars head sliced turkey, green beans

afternoon snack, apple

dinner, baked chicken, steamed broccoli and steamed rice

Guest nini
Guest nini
Posted

also be vigilant about hidden sources of gluten (like in playdough)

kids are extremely resilient. IF it is celiac, she should respond rather quickly to the diet, 3 years is not long enough for VERY SEVERE damage to have occurred. We saw a difference in my daughter after only one week, but I suggest giving it at least a month before making your decision as to if it is helping her or not.

If it does help (which I predict it will) then we have all kinds of suggestions for great gluten free goodies that kids love that will make your life easier!

Good luck.

key Contributor
key
Posted

JUst thought I would share that my son's blood tests were also inconclusive. He had them done at 13 months. Anyway, no one told me he could have celiac with his blood tests being negative. One day I was on the computer and reading about celiac disease and I just thought it sounded so much like him that I put him on the diet. My son was failure to thrive (weight wise), poor appetite, fussy, diarhea six or more times a day with undigested food all the time. Anyway, we put him on the diet and noticed a change within three days, but it took two weeks to have a normal stool, which he had never had in his life. THen after about six weeks he is able to tolerate dairy again. He is eating everything now and we just took him to the ped. GI today and he was very pleased with his changes. He gained two pounds since April, no longer fussy, eats like a piggy! I am SO thrilled with his changes. Also my son had a cold and ear infections all the time too. I think it had to do with him being so under nourished. Try the diet! It does sound alot like celiac. Not all kids are FTT. The biopsy can be inaccurate in kids too.

Good luck and the mom's and dad's around here have great food suggestions for kids. THe diet does get easier with time.

Monica

oliviasmommy Newbie
oliviasmommy
Posted
  • Author

Thanks everyone...I spoke with our ped yesterday. We will do the "full workup" on Wednesday. One thing he said was that if she has celiac she was born with it and if she has a neg test then they will always come back negative. I have been doing alot of research and thats not what I have been reading. Also, my dh has almost all the sx also...now if I could just get him in to get tested. We have started to wean her off of the gluten. Her birthday party is Saturday and I dont want to have to replan all the food (especially the cake) and our dietician told me "shes lived with it for this long...one more week wont hurt". I did go out and buy some gluten-free foods, my daughter really loves the gorilla munch (I do too) so hopefully it wont be as hard as I think it will.

One more thing...I have been looking at gluten-free breads, which brand is the best to buy?

Jnkmnky Collaborator
Jnkmnky
Posted

Don't get the enerG bread. Gross. We like Kinnikinnick Tapioca breads, but my 7 year old son prefers the Black China Rice by Foods for Life. It's very moist. We keep our breads frozen, of course, but don't fully toast them. Just heat them on number 2 to let the ice melt and soften up the bread. I know it's stickier that way and can get a little gross looking all stuck to the teeth, but kids with small teeth, or loose teeth don't need dried, crunchy toast.

Guest nini
Guest nini
Posted

there are a lot of different opinions on gluten-free breads... around here (my daughter and I ) love Kinnikinick White Sandwich Bread or Whole Foods Gluten Free bakehouse bread... I keep most of it in the freezer but small amounts in the fridge so it's easier to use (not having to fight to separate the pieces)... most times I just microwave in a paper towel for 30-45 seconds until warm and moist. It depends on your microwave. Other times I toast it in the toaster oven.

oliviasmommy Newbie
oliviasmommy
Posted
  • Author

Thanks!!

Merika Contributor
Merika
Posted

Olivia,

FTT is not a requirement of celiac. Look at all of us adults here recently diagnosed, lol! I just wish the docs knew better (sigh)....

Merika :)

Carriefaith Enthusiast
Carriefaith
Posted

Kinnikinnick is great! And you can buy it in most big grocery stores or health food stores. I prefer it toasted. In my opinion ALL gluten-free bread tastes better toasted B)

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