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Daughter Diagnosed In 2002

KellyR

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KellyR Apprentice
KellyR
Posted

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.

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gf4life Enthusiast
gf4life
Posted

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 Apprentice
KellyR
Posted
  • Author

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 Enthusiast
gf4life
Posted
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 Newbie
mannabbe
Posted

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 Enthusiast
gf4life
Posted

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 Newbie
wdavie
Posted

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

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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