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Tucson Gi/pediatric Celiac Doctors

Sgoldie

By Sgoldie
in Doctors

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Sgoldie Newbie
Sgoldie
Posted

Help!

My mom was diagnosed with Celiac. Now my daughter has been having stomach problems since she was a baby, and has had some strange food cravings, such as sneaking flour and eating it dry by the fistful. She had a negative growth chart, severe constipation, reflux, and bacteria and fungal overgrowth in her small intestines, but tested negative for Celiac at the age of 4. The test also showed she was low in iron.

For several years her symptoms improved. Her growth chart moved into the 10th percentile and stayed there. Her constipation was manageable with Senakot, and her stomach pain lessened.

This summer her stomach pain returned with a vengeance. It occurred more often, and was followed by severe vomiting. We placed her on a gluten-free diet, and then tested her for Celiac. Again, the test came back negative, but her vomiting has lessened substantially. It could be Celiac. It could be something else.

We are at a complete loss, and desperate to help her. Can anybody recommend a good GI, pediatric doctor in Tucson?

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pricklypear1971 Community Regular
pricklypear1971
Posted

Help!

My mom was diagnosed with Celiac. Now my daughter has been having stomach problems since she was a baby, and has had some strange food cravings, such as sneaking flour and eating it dry by the fistful. She had a negative growth chart, severe constipation, reflux, and bacteria and fungal overgrowth in her small intestines, but tested negative for Celiac at the age of 4. The test also showed she was low in iron.

For several years her symptoms improved. Her growth chart moved into the 10th percentile and stayed there. Her constipation was manageable with Senakot, and her stomach pain lessened.

This summer her stomach pain returned with a vengeance. It occurred more often, and was followed by severe vomiting. We placed her on a gluten-free diet, and then tested her for Celiac. Again, the test came back negative, but her vomiting has lessened substantially. It could be Celiac. It could be something else.

We are at a complete loss, and desperate to help her. Can anybody recommend a good GI, pediatric doctor in Tucson?

Hi, I'm in Tucson also!

Try contacting The Southern Arizona Celiac group - they have a kids group also. Open Original Shared Link

I was given the name of Dr. Moussa, Catalina Pediatrics 323-3099 as a Celiac-friendly Pediatrician. You may ask her office for a reco.

Skylark Collaborator
Skylark
Posted

This summer her stomach pain returned with a vengeance. It occurred more often, and was followed by severe vomiting. We placed her on a gluten-free diet, and then tested her for Celiac. Again, the test came back negative, but her vomiting has lessened substantially. It could be Celiac. It could be something else.

You did that backwards. How long was she gluten-free before you got the celiac test? The test doesn't work on people who have been gluten-free for a couple months. It can also be hard to get positive tests in kids. With the family history it would make sense to keep her on the diet and see if it helps.

The flour cravings suggest she is getting the narcotic effect from gliadorphin, an opiate-like peptide in wheat. This only happens to people with digestive problems, and it can cause a lot of problems. She probably also needs to be off casein because milk has similar peptides.

Sgoldie Newbie
Sgoldie
Posted
  • Author

Hi, I'm in Tucson also!

Try contacting The Southern Arizona Celiac group - they have a kids group also. Open Original Shared Link

I was given the name of Dr. Moussa, Catalina Pediatrics 323-3099 as a Celiac-friendly Pediatrician. You may ask her office for a reco.

Thank you so much for the information, Pricklypear1971. Love your sign in name. I'll be following up on both your recommendations. There has got to be something I can do for her. Waiting is no longer an option.

Sgoldie Newbie
Sgoldie
Posted
  • Author

You did that backwards. How long was she gluten-free before you got the celiac test? The test doesn't work on people who have been gluten-free for a couple months. It can also be hard to get positive tests in kids. With the family history it would make sense to keep her on the diet and see if it helps.

The flour cravings suggest she is getting the narcotic effect from gliadorphin, an opiate-like peptide in wheat. This only happens to people with digestive problems, and it can cause a lot of problems. She probably also needs to be off casein because milk has similar peptides.

Hi Skylark.

Because she was responding so well to the gluten-free diet, I couldn't bare to take her off it for the test. Believe me. I thought about it, but I don't think she would have done it. By then, she was tired of hurting and throwing up. She had been on it for about a month prior to the test so the results didn't surprise me.

The Casein information is interesting. Never heard of that before. Milk is something she naturally stays away from. She's never been able to tolerate it. Thank you for the information. I'll be looking into the narcotic effect from gliadorphin. The whole flour craving thing threw me off....

Skylark Collaborator
Skylark
Posted

Poor little one. :( I sure understand you refusing to gluten challenge with her. There is some information on the opiate-like peptides here. I've found more information in the scientific literature on the milk peptides, called casomorphins, but gluten definitely has similar actions to milk.

Open Original Shared Link

By the way, a doctor is not likely to have heard of any of this.

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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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