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Newbie With At Least One Question

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Spork Newbie
Spork
Posted

Newbie here with at least one question.

My seven year old daughter was recently diagonosed at the end of last year with Graves Disease. The thyroid board that I was checking out is more included to worry about numbers (and were rude about it) than anything else and I ended up repeating myself a lot so I am not inclined to ask questions there anymore. Anyway, she isn't getting better. If anything, it's getting worse.

My daughters cause is a bit unique becuase Graves is not usually seen in children, she is severely allergic to the first anti-thyroid medication she was put on, and she has barely grown over the last several years. I mean, she is growing but her bone growth that was done shows her to be two years delayed in growth. She has shown no obvious symptoms to anything. She was also diagonosed with dysarthria (a neurological speech delay) last year.

Several months ago, before the thyroid problems were caught, I asked the endocrineologist about the possilbity of celiac disease. She didn't think that was the case because there were no obvious symtpoms. Now, several months later a celiac panal was ordered with her thyroid tests. This was prompted by the uniqueness of my daughters case and the conferance that the endo went to last month. There was a seminar on celiac disease in thyroid patients since the two things seem to have a very rate of being found together. We are getting her blood drawn tomarrow. Lets just say that there are so many food issues in my house that nothing surprises me (you would not believe the list of food allergens that my children have).

A few months ago while at the endo, my daughter pointed out a rash to the doctor that I hadn't really seen. It was dried up and healing and we couldn't figure out what it was. It has returned and it is very blistery looking and looks a lot like Dermatitis Herpetiformis from the pictures that I have seen.

I guess I have two questions.

1. How reliable is the celiac blood panel?

2. I have decided to institute a gluten free diet to see if it helps anything with her (can't hurt). How long does it usually take to see any difference with the diet?

Georga

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Daxin Explorer
Daxin
Posted

As far as I know, the blood panel alone is not THE answer. Mine, for example, lead my doctor to dx celiac. The levels he was testing for were almost triple in one case and oduble the norm in another. That with the diet trial leads him to suspect celiac.

The "gold standard" is still the small bowel biopsy (scheduled soon I hope) where they look to see if the hair like villi in the intestine are damaged ( the true sign of celiac disease).

The gluten free diet can have many positive effects for anyone. The results could take more than a week to see anything definitive, but freom what I have read here and in other books etc, the full healing process can take much longer. In my case, the d and brain fog symptoms disappeared almost right away. The ravenous hunger subsided within a week or 2, and now I alomst feel like I am back to normal (6-7 weeks into the diet)

There are also other advantages they have seen for kids with ADHD and Autism (sp). There is nothing wrong with trialing the gluten free diet on your daughter. Keep track of the results you notice (3 months or so shoudl be ok) and then show/discuss them with your doctors.

Welcome to the boards, and PLEASE feel free to post as often as you like. I have noticed the people here are friendly and VERY helpful :D I hope that helps.

Good luck

Ryan

Spork Newbie
Spork
Posted
  • Author

I know about the gluten free diet with autistic kids. Unfortunatly it didn't help mine. It is a diet that I am familar with. I am just learning about celiac since this has come up. The thing is, I don't want to put her through more testing if we don't have to. She has her blood drawn every one to three months as it is for her thyroid problems. She had a radioactive iodine uptake done not long ago. She has been poked and prodded so much since the first of year it's not funny. That is why I was wondering how accurate the blood work is.

eKatherine Apprentice
eKatherine
Posted
I know about the gluten free diet with autistic kids. Unfortunatly it didn't help mine. It is a diet that I am familar with. I am just learning about celiac since this has come up. The thing is, I don't want to put her through more testing if we don't have to. She has her blood drawn every one to three months as it is for her thyroid problems. She had a radioactive iodine uptake done not long ago. She has been poked and prodded so much since the first of year it's not funny. That is why I was wondering how accurate the blood work is.

So you've gone gluten-free? For how long?

If you were truly gluten-free (and it's really easy to make mistakes at the beginning) but she comes up positive for celiac, then she may have yet another dietary intolerance that you haven't considered yet.

Unfortunately, if she appears negative on the blood tests, it may be a false negative. She may still have it.

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