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Coeliac

Discussion in 'Parents of Children with Type 1' started by Ben'sMommy, Apr 13, 2006.

  1. Ben'sMommy

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    Can somebody tell me if I should be worried about Ben being diagnosed with Coeliac? His doctors have never brought it up with us but it seems like every website I've been on there are lots of diabetic kids who also suffer with Coeliac disease. I'm starting to get really worried. One disease is quite enough for Ben -thank you very much.
    Can anyone shed some light on the subject for me please????:confused:
     
  2. Laura

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    Our Endo had all of her Diabetics tested between Jan and March. 10 out of 100 were positive, including my son. The first thing they did was a blood test and if that's negative they stop there but my son's first tests were weak positive so we did it again and they were positive then he had a small intestine biopsy to confirm. You are right, 2 diseases is a whole lot worse than one, especially when eating gluten free means eating an extremely restrictive diet. I had no idea he even had symptoms until I look back now. It's hard but it's working out. It always does, right? Anyway, if you are worried, the only thing that can ease your mind is knowing for sure. I have no idea how sick my son may have gotten if she didn't test him. I blamed everything on Diabetes and doubt I would have ever thought it was anything else. When she said she was testing everyone I just figured it would be negative. He feels so much better now though.
     
  3. allisa

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    Because Diabetes and Celiac are both auto-immune diseases they sometimes appear together. I am not sure of the statistics of how many diabetics actually have celiac as well.

    I do worry about it and keep an eye for symptoms. Ask for a blood test if you are really worried.

    Good luck.

    PS....I have a distant cousin who has 13 kids......3 of them have Type 1 Diabetes, 2 of those have Celiac as well and One of those has Down Syndrome on top of the Diabetes and Celiac.

    I have a child with type 1 and a child with Down Syndrome ( which also is high risk for Celiac) when i see her she always tells me to get them used to eating rice crackers etc JUST IN CASE so it isn't a HUGE shock if the diet must change one day.
     
  4. EmmasMom

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    We had Emma tested because she was having a lot of tummy problems after diagnosis. She had diarrhea for 4 months! The lab work came back negative for Celiac, but positive, (she has all of the antibodies) for Crohns Disease, not happy news!
    The pedi GI doc said that the blood tests for celiac are good, but you have to have an intestinal biopsy to know for sure. So... she also had a colonoscopy and EGD with many biopsies. All negative.:)
    Having any autoimmune disease (like diabetes) is a risk factor for having any number of other autoimmune diseases; celiac, crohns, rheumatoid arthritis, thyroid problems, etc., so I worry about all of it, but I try not to dwell too much on the "what ifs."
    There are several good websites about celiac disease that can give you signs, symptoms, risk factors, etc.

    www.celiac.com
    www.digestive.niddk.nih.gov/ddiseases/pubs/celiac
     
    Last edited: Apr 18, 2006
  5. darcyann3

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    Having a child with two diseases isn't any fun. My son Trevor at 16mts old was diagnosed with diabetes. He is now almost 7 yrs old. Last year at this time though his younger brother Trace became very, very sick and after many blood tests, x-rays and ultra sound they finally tested him for celiac and it was positive. Trace was only 16mts then and we knew it was diabetes since we were testing his bs with Trevor's monitor. Trace was too sick with all the severe symptoms of infants with celiac and everything we read on the disease we clearly knew this is what he had an opted not to have the intestinal biopsy done. I had read that ten percent of kids who are diagnosed with diabetes or celiac before the age of four have a chance of getting the other disease. So last May at Trevor's endo appt. I mentioned to the dr about what happened to Trace and he ran blood work and Trevor's test came back positive. Since celiac is also hereditary I had myself and my older two kids tested. Older two fine but have to watch the one and mine came back extremely positive. So now the whole family is on a gluten free diet for the most part. Husband and older two still eat gluten when out of the house but that is fine.
    I believe Trevor probably had celiac at the time of being diagnosed with diabetes but didn't have any severe symptoms that would alarm anyone. Since being on a gf diet his A1C tests are great and controling his bs seems a bit easier and when he is high I know it was because I let him have something extra. He is in a much better mood and doesn't seem mad all the time.
    I know for myself I wasn't having extreme symptoms either but I feel so much better and now when I mistakenly eat something with gluten when hubby and I eat out I pay for it that night and the next day.

    Darcy-celiac mom to
    Trevor 6yrs tp 1 & celiac
    Trace 2yrs celiac
    son 13yrs
    daughter 10yrs
     
  6. Ben'sMommy

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    :D Thanks guys. We have an appointment on May 15th. I'm going to ask to have him checked for celiac. Better to be safe right?
    Fingers crossed it's negative. The poor little guy loves his food too much!!!
     
  7. jo maisies mum

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    what are the symptoms of coeliac, my daughter has been having stomach ache alot but our dr has never mentioned it to us
     
  8. Ben'sMommy

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    EmmasMom biopsies????

    Are the tests for celiac invasive and painful???
     
  9. Laura

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    The first tests they did on my son were just blood tests. After those were positive they scheduled us for an endoscopy. If I could go back I would have just had the blood tests and gone with those results. The endoscopy was way too stressful on him.
     
  10. EmmasMom

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    Hi Ben's mommy,

    The colonoscopy was a bit of an ordeal. She had to have general anesthesia, and had to have only clear liquids for 24hrs, followed by NPO for 12hrs prior to the procedure. Then enemas and a strong laxative. No easy task for a "little D". She had to be hospitalized for IV dextrose to get her through.
    The biopsies, however do not hurt. Apparently intestines don't have many nerves to sense pain, so that part wasn't an issue.
    I would definitely push for the lab work first, and only do the biopsy if it had to be done. It was not fun! We only agreed to it because of her on going tummy problems and positive Crohn's tests.
     
  11. Ben'sMommy

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    Thanks Emma'sMom. Your poor little angel is having it pretty tough.
    :(
     

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