Daughter Diagnosed In 2002

[KellyR]

My daughter has type 1 diabetes, her blood sugars were so uncontrollable that her doctor tried just for the heck of it to do a blood test to check for celiac, she has never had any symptoms. The test came back positive so they went down her throat with a scope and she she had mild villi damage. That was the end of it, told me to follow gluten free diet and that was it. once a year her endocrinologist repeats the blood test to make sure the diet is working. Is this enough? Should she be seeing a specialist? She still sneeks gluten on occasion and has no symtoms.

[gf4life]

How old is your daughter? I only ask, since the older they are the harder it is to get them to change their diet. If she is old enough, you need to sit her down and explain to her that although it is hard, she needs to stay gluten free for health reasons. If she is old enough, show her some information regarding the disease. Remember that she will eventually be in charge of her own eating and she needs to learn now how to take care of herself.

How is her diabetes since going gluten-free? If it is under control and she is generally symptoms free, that may be why she is sneaking gluten, but it is still damaging her intestines. How were her last blod tests? Were any of her antibody levels high?

There really is no reason she should have to see a specialist. She has the diagnosis and the only treatment is the gluten free diet. There isn't really much the doctors can do for her, other than the annual check-up they are already doing.

God bless,

Mariann

[KellyR]

She is almost 12. Her diabetes is in better control but she has also gotten the insulin pump so I am not sure which one helped. Her last blood test came back at 40, I am not sure what that even means. We are finding celiac to be so much worse than diabetes and she was diagnosed with the diabetes 10 1/2 years ago. Thanks for the reply.........Kelly

[gf4life]

Her last blood test came back at 40, I am not sure what that even means.

Do you know what test this was? if it was any one of the celiac tests, that is still pretty high. She must be getting quite a bit of gluten. I don't know what to suggest to you. Are you involved with any support groups that have children her own age?

Mariann

[mannabbe]

Kelly,

My daughter is 7 - which is WAY different than 12 - I know! But I'm wondering if there's a ROCK group in your area, or at least some sort of support group that would enable you to connect her up with other celiac kids? If she isn't getting sick from small amounts of gluten, it will be so difficult to convince her that it's bad for her. Especially since she's at that "separate from parents" age.

But if she is hearing the message from her peers & other grown-ups, and has someone her own age to go on this journey with, I think things will be easier for her (and you). Would she be interested in attending a celiac summer camp this summer? My daughter and I are going to attend for the first time.

good luck,

Laurie

[gf4life]

Laurie could you pass on the information about the summer camp. My 9 year old really wants to go, and should he test positive and need gluten free, I would not want to send him to a "regular" summer camp.

Thanks.

God bless,

Mariann

[wdavie]

We are not seeing a specialist with Grace, just her Ped. He will retest her bloods to check her levels every 12 months or so. Fortunately the only treatment is the gluten-free diet, so if you have a good endo for the Diabetes that should be fine.

Wendy