New, She's Not Diagnosed Yet

[sugarsue]

Hi, I am new and I hope I can post here. My daughter is almost 6 yrs old and she gets tested for Celiac on Monday. Regardless of the results of the test, her doctor wants her to eat Gluten Free/Casein Free due to her many symptoms. She does not have autism but does have many symptoms or conditions found in children with autism.

diarrhea

possible muscle deterioration (High CK test)

she's small (10-15% of norm for height/weight)

malabsorption (many vitamins/amino acids low)

seizures

gas

recurring stomach pain

pale, foul-smelling floating stool

fatigue

behavioral issues (irratibility, biting, inappropriate touching people, feet in faces, not using words )

I am worried that I won't be able to monitor her well enough to control everything that she eats or that I won't be able to find things that she will like (she's picky and horribly addicted to wheat). I am allergic to wheat so I am familar with the products and so far can't find crackers, bread or pasta that I think will go over too well. If the test comes back negative, I worry that it will be difficult for me to explain to people why we are doing the diet, although I know it should not matter what others think.

Susan

[sugarsue]

Hi, I am new and I hope I can post here. My daughter is almost 6 yrs old and she gets tested for Celiac on Monday. Regardless of the results of the test, her doctor wants her to eat Gluten Free/Casein Free due to her many symptoms. She does not have autism but does have many symptoms or conditions found in children with autism.

diarrhea

possible muscle deterioration (High CK test)

she's small (10-15% of norm for height/weight, still on charts but her sister is 90% for height making it seem worse)

malabsorption (many vitamins/amino acids low)

seizures

gas

recurring stomach pain

pale, foul-smelling floating stool

fatigue

behavioral issues (irratibility, biting, inappropriate touching people, feet in faces, not using words )

I am worried that I won't be able to monitor her well enough to control everything that she eats or that I won't be able to find things that she will like (she's picky and horribly addicted to wheat). I am allergic to wheat so I am familar with the products and so far can't find crackers, bread or pasta that I think will go over too well. If the test comes back negative, I worry that it will be difficult for me to explain to people why we are doing the diet, although I know it should not matter what others think.

Susan

[ShayFL]

A lot of Celiac/Gluten Intolerant children are "picky" eaters and "addicted" to wheat. Wheat fills similar slots in the brain as morphine. Opiate receptor-active peptide fragments (exorphins) have been identified recently in casein and gluten hydrolysates.....(Google this and learn more). It is a vicious cycle. Things hurt and the wheat/gluten makes her feel better "momentarily"...then things hurt again...and on and on it goes......She will likely be less picky once she feels better.

Pamela's makes great cookies pre-made and mixes. The brownies are very good. Tinkyada pasta. My daughter preferred it to wheat pasta immediately. I have not found good crackers. Maybe someone else will chime in. Rice cakes are popular.

I you are willing to bake yourself, there are some great gluten-free cookbooks out there. I recommend "Cooking Free".

Make your own bread. The pre-made gluten-free breads arent very good. Although if you can afford it (and to have it shipped), "Island Bakery" in Sarasota makes excellent hamburger buns and sandwich bread. Their french loaf is also superb. I have sampled them all. All good. They will ship anywhere in the U.S. They bake to order and ship the next morning so it is FRESH. You can freeze the sandwich bread and they put parchment between each one so you can easily take what you need each time and not have it go bad.

There are other delicious bakeries throughout the US that will ship too.

[sugarsue]

Thank you for the great product recommendations. I know those on this board who have been living with this will be great resources! What you've said about the vicious cycle makes sense. and to think she's sort of self medicating with wheat, it breaks my heart! I will do some research on the hydrolysates. I'm ready to learn and to help my daughter.

Susan

PS... sorry for my double post. I tried to make an edit and ended up quoting myself!

[MarsupialMama]

My daughter was not only picky with food - she was totally uninterested. We were at the point of fighting to get food into her. After 3 weeks gluten free she started eating like a horse. MAJOR change!

Tinkyada pasta is the best one we've found. I have not been very impressed with most of the gluten-free grain foods i've found, but we do like that pasta.

One caution: Quaker Rice Cakes are not gluten free, Lundberg ones are. Be careful if you use rice or soy milks since they are processed with gluten (we are dairy free too, and had to find this out the hard way).

Your daughter sounds like she has the classic symptoms, so hooray to your doctor for being up-to-date on these things!! Many people have to fight with their doctors over this issue. You do need to have her on a gluten diet in order for the tests to come out though. Otherwise you can get false results. It will say she is negative, although she could be very positive allergic. When I heard of the gluten issue, I immediately started my daughter on it, because I couldn't wait one more day for her intestines to be damaged, or one more day without moving in a direction that might bring positive results. Her weight was plummeting, and CPS was on our case for "medical neglect". I didn't know about testing then, so she has no official diagnosis, but we've seen improvements in response to the diet, and bad results when "mistakes" have happened, so regardless of a diagnosis, we are sticking with gluten-free. Have only traveled this road for 3 months, so we are still in the beginning stages. It hasn't always been easy (mainly because of worrying to death), but it does get better....and easier.

I know you will be able to find a way to explain to others the need to keep a strict diet. Nobody would be willing to give a diabetic child a bowlful of candy, would they? The child could go into hypoglycemic shock. Just like diabetes is a "medical condition", so you can explain that celiac is a "medical condition" to those who refuse to believe you. While being celiac will not cause "shock" symptoms like diabetes would, many people have very severe reactions which can last for 2-3 weeks. Regardless of how they feel though, damage is still being done to the intestines when gluten is consumed. Many will not understand, but that's when you come to sites like this for venting and encouragement! Welcome!

[Darn210]

The Tinkyada pasta that Shay mentioned is great . . . our whole family eats it and there is only one celiac. It comes in a variety of shapes, including one called little dreams (or something like that) that has stars, cars, rockets, dogs, etc . . . really geared toward a kid . . . so it automatically tastes better

My daughter eats the Back to Nature rice thin crackers without any problems. I'm not sure if it's caisen free but they have a tomato herb flavor that she likes (I told her it was pizza flavor).

Glutino pretzels are good by themselves and I use them to make homemade "chex" mix with Health Valley Corn Crunchem's and Rice Chex (Lawry's season salt is OK and so is Lea & Perrins Worcestershire Sauce)

She also eats the Glutino cracker that looks like a ritz . . . it's better if your eating cheese or peanut butter on it though.

My daughter only eats the bread as toast and not in a sandwhich. For lunches, she prefers a corn thin (kind of like a rice cake but thinner) with Peanut Butter or a cold pancake with peanut butter and nutella. (My daughter is not a jelly fan)

Van's waffles are good and they are dairy free (make sure you get the gluten free ones because they make some that aren't) and she likes them with peanut butter or cream cheese.

Sorry if I'm "over explaining" products (since you are wheat free) . . . lots of people read along on the threads for ideas . . .

Even if the test comes back negative, your doctor wants you to try the diet . . . I would tell people that her diet is "per doctor's orders".

Good Luck.

[home-based-mom]

If the test comes back negative, I worry that it will be difficult for me to explain to people why we are doing the diet, although I know it should not matter what others think.

Susan

You are following doctor's orders. That should be sufficient for anyone. (EDIT - I see Janet already said that! )

Spend some time reading in the parents section about how people have solved problems with kids at school, both with monitoring what they eat as well as what they come in contact with such as crafts made with food and all that. It should be very helpful.

Welcome to the forum!

[purple]

Here is a good web site to find subs for:

Open Original Shared Link

And my favorite homemade waffles

gluten-free/dairy free/ egg free

Open Original Shared Link

banana nut waffles...mmm...good!

Yes!..."Cooking Free"by Carol Fenster, is a good cookbook!

Yes!...Tinkyada pasta is good too. I tried De Boles corn spaghetti and its good too.

Make her some mini muffins to snack on. Berries, apples, applesauce, bananas, choc. chips, carrots, pumpkin, pineapple, zucchini, nuts, peanut butter, coconut, lemon, etc. Her favorite flavors. Stick a few in the freezer for variety and emergencies.

[sugarsue]

You guys are awesome. Thank you for the welcome and all the really great advice. I know that we don't always get the help we need from doctors (I think I've recently found a really good one so I feel lucky) or our family so it's nice to have others who understand.

I received an email from my sister who's son is allergic to peanuts. Even though she does not have all the information about what is going on, I thought she'd be understanding since she has to monitor everything he eats. But she was not too supportive and indicated that if we didn't get a positive test next week that I should not do the diet because it's not fair to my daughter to not let her eat what her friends eat. I know I just haven't filled her in enough, but I still thought that if this is how she is reacting to gluten free, things may not go so well with others. I'll need to plan my presentation.

Susan

[Amyleigh0007]

My son was very picky. He had his 10 foods that he ate and they were filled with gluten (mac and cheese, chicken nuggets, cookies, crackers, etc.). Since he has been gluten free and his body is healing he is much more open to different foods. Maybe when your daughter begins to eat gluten free and she begins to feel better she too will be more open to trying different foods.