Five Year Old Celiac

[Julia's mom]

My 5-year old daughter was diagnosed in September with Celiac. Her IgA came back highly positive and her small intestine which showed evidence of scalloping came back positive as well. My husband has been recently diagnosed as well.

The dilemma is that my daughter who was feeling so much better on her gluten-free diet for a month is now feeling intense abdominal, back and esophageal pain. We have a well scrubbed kitchen with only gluten-free products. She is not eating or drinking any dairy products and has low amounts of citric acid in her diet. We carefully package her snacks and lunch at school, and she has a vigilant teacher watching over her.

But still, she is in a lot of pain. The doctor's office recommended a PPI, for which I am not completely in favor and I have read the recommendations for nettle leaf tea, whole fennel seed, slippery elm, and flax seed. I am also uneasy about giving my child over the counter herbals that might be better suited for adults.

Does anyone have any recommendations? She is a bright girl who has learned how to read labels and take amazing ownership of her disease. Quite frankly she told us that she could not eat wheat for nearly 6 months, but we didn't get it!

Thanks for the help!

[bear6954]

My son is only two but I noticed too much sugar from fruits caused him stomach pain.

[ang1e0251]

Your daughter sounds very astute. Have you asked her what is causing her pain? Maybe she has some idea, like before. If not, it might be a good idea to start a food journal for her. Write down everything that goes in her mouth as well as her symptoms. Maybe the reason will reveal itself. In the meantime, when I am glutened, I back off and go back to very simple basic foods that are gentle to my system. I eat very few processed gluten-free foods as I find I don't digest them that well. It feels like a stone in my gut.

It could be something new bothering her. That has happened to me a couple of times. I know it's so hard on you to see your child suffer. I hope the problem reveals itself to you soon.

[dilettantesteph]

Like I said in the other post, do you know about stickers, playdoh and fingerpaint?

[Julia's mom]

Your daughter sounds very astute. Have you asked her what is causing her pain? Maybe she has some idea, like before. If not, it might be a good idea to start a food journal for her. Write down everything that goes in her mouth as well as her symptoms. Maybe the reason will reveal itself. In the meantime, when I am glutened, I back off and go back to very simple basic foods that are gentle to my system. I eat very few processed gluten-free foods as I find I don't digest them that well. It feels like a stone in my gut.

It could be something new bothering her. That has happened to me a couple of times. I know it's so hard on you to see your child suffer. I hope the problem reveals itself to you soon.

Thank you for your advice. In fact she told me the same tonight that gluten-free breads are troubling her. She is in so much pain and her physician said turn to the Internet to help. She just went to bed in horrible pain and crying. She has a large heated lavender pillow to help relieve some of the pain.

We tried slippery elm and pear juice yesterday and probiotics this morning.

We'll just keep trying! I think that we might have another culprit lurking in her foods.

[Julia's mom]

Like I said in the other post, do you know about stickers, playdoh and fingerpaint?

Thank you. I know that she is not playing with stickers and playdoh, however I would have to double check on the fingerpaint. I haven't seen any projects come home lately.

I just sent her to bed in pain. She is very cavalier which makes it harder to figure out when she is feeling ill. I am starting to have the impression, however, it is when she eats carbohydrates. During the day she eats carrots, apples, ham or turkey, and maybe a fruit roll-up...all screened to be gluten free. At night I will prepare on occasion a gluten-free pizza on its own sheet, gluten-free pasta, or something of the sort. For the most part I buy organic, gluten-free meats and cut with organic, washed vegetables. Tomorrow we are cutting out the carbs and getting allergy testing.

Thank you for your replies.

[ang1e0251]

Last week I found I could no longer tolerate ham. I don't eat it that often so it took awhile to put that together. I also don't eat lunchmeats often. I believe I'm reacting to the nitrites/tates. There was another thread about those that made me notice. If she's eating those kind of meats frequently, that could be a culprit. I also avoid MSG. I'm not really sure I react to it, but it's just not good.

I eat corn tortillas in place of any bread products. I like it toasted. These sit very well with my system and are versitile.

[gfpaperdoll]

I would not give her the gluten free grains until all pain is gone, or at least 6 months after going gluten-free. some people cannot tolerate those grains. You can make a peanut butter cookie with sugar, peanut butter (1 cup each) & 1 egg. It is an old standard recipe. There are other recipes with no grains. check out the SCD diet, I think their web site is called pecan bread, sorry not sure. You can google it.

A lot of people do not tolerate tapioca flour. try sorghum flour & coconut flour - but IMO they are all cross contaminated, although I order direct from the mill & use them only occasionally...

try white rice only - get organic if you can & wash it before cooking. Also try the Mission Brand White Corn Tortillas as a sub for bread. You can even make a pizza on them. Cut in 4ths & fry in coconut oil for chips... heat them in a skillet with coconut oil & put PB & Jam & bacon & roll up for a good anytime snack.

also think about getting her checked for H. Pylori & get the doctor to check her appendics. It is common for us to have appendic problems, & gall bladder problems.

Even if she is not having a definite problem with dairy, I would cut out dairy for a minimum of 6 months. & no soy, nobody needs soy.

I hope this is somewhat helpful. & that she is better soon. That stomach pain is the worst there is.

[climbmtwhitney]

Hello.

Another idea.....Have you noticed a pattern with soy or corn? Many of the gluten free/casein free breads contain them. Also, if you're eating pizza, are you using a soy cheese? I, myself a Celiac, am in horrible pain from soy in any amount. (And, I think corn is about to go too.) And, my 10 yr old daughter, also Celiac, gets horrible stomach pain from an overload of soy such as Gluten-free Casein-free pizza made with soy mozzarella.

My doctor told me that once the gluten & casein are out of the diet, often other food intolerances can rear their ugly heads. When your gut is stripped from the gluten (leaky gut), then proteins from other foods can leak through your gut and your body reacts by creating antibodies and causing distress. And, soy and corn happen to be two biggies that bother a lot of people. Also, I agree with the other posters that tapioca flour/starch bothers many too and it's in a lot of Gluten-free Casein-free breads. Also, if your using Kinnikinnick breads, many contain pea protein which happens to bother me as well.

Anyway, I really do hope you figure it out quickly. I know first hand how hard it is to see your little ones suffering. We are awaiting an official soy result on my daughter since she also starting going south after 2 1/2 months of being Gluten-free Casein-free. It's so hard, but hang in there. I bet with a food diary and help from your smart daughter, you'll figure it out soon.

Best,

Sonya

[Julia's mom]

Hello.

Another idea.....Have you noticed a pattern with soy or corn? Many of the gluten free/casein free breads contain them. Also, if you're eating pizza, are you using a soy cheese? I, myself a Celiac, am in horrible pain from soy in any amount. (And, I think corn is about to go too.) And, my 10 yr old daughter, also Celiac, gets horrible stomach pain from an overload of soy such as Gluten-free Casein-free pizza made with soy mozzarella.

My doctor told me that once the gluten & casein are out of the diet, often other food intolerances can rear their ugly heads. When your gut is stripped from the gluten (leaky gut), then proteins from other foods can leak through your gut and your body reacts by creating antibodies and causing distress. And, soy and corn happen to be two biggies that bother a lot of people. Also, I agree with the other posters that tapioca flour/starch bothers many too and it's in a lot of Gluten-free Casein-free breads. Also, if your using Kinnikinnick breads, many contain pea protein which happens to bother me as well.

Anyway, I really do hope you figure it out quickly. I know first hand how hard it is to see your little ones suffering. We are awaiting an official soy result on my daughter since she also starting going south after 2 1/2 months of being Gluten-free Casein-free. It's so hard, but hang in there. I bet with a food diary and help from your smart daughter, you'll figure it out soon.

Best,

Sonya

Thank you. This is very helpful information. Yesterday she thrw up her hands and said "I'm done with this!" which scared me a little until she started laughing again. So far laughing is still the best medicine. She feels better and and forgets about her stomach.

Thanks for the explanation about the leaky gut and exposure to other proteins. That makes a lot of sense. Thus far I have noticed reactions to gluten-free cookies and pizza the most. She does well with chicken, rice, bananas, blacks beans, and apples.

This forum's recommendations have been outstanding for us. Julia is always on board with changing her diet around and doesn't feel entitled to anything unless her brother gets something. We are creating a food journal and a tummy chart to understand. We are learning quickly.

Wendy