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Possible Celiac Diagnosis

Discussion in 'Celiac' started by sincity2003, Feb 6, 2014.

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  1. sincity2003

    sincity2003 Approved members

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    Yesterday DS had an appointment with his endo and they had gotten back his blood tests from December. One of the tests for celiac that should have been 4 or lower, was a 6. I can't pronounce it and I don't have the paperwork in front of me, sorry. When they tested him last April, he was a 3.

    We are not to change his diet for the next 2 weeks, just observe they said, and keep a journal of the symptoms they gave us. Now that we were educated a little bit, I'm pretty certain he has it. Unexplained, persistent lows, stomach aches, bathroom issues, headaches, irritability, and bloated tummy :(

    Can anyone tell me your experience with the biopsy that they do? The way it was explained to us, he has to go to the hospital to have it done (it can't be outpatient because he has Type 1), and he will have to stay for observation, but they didn't say how long. He's never been under any anesthesia, and I'm terrified.

    Also, can you suggest any reading material, or point me to some of your go-to websites for recipes?

    I'm trying to not lose it because I know things could always be worse, but this is like a double whammy to him.

    Thank you in advance!
     
  2. Snowflake

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    We just went through this in November/December. We got biopsy confirmation right before Christmas. Our 4 year old DD's celiac was picked up through routine blood screening, not based on our reporting symptoms. But when we got the diagnosis, everything made so much sense in hindsight. Especially the hard-to-treat, persistent lows that just would not come up without a major temporary basal decrease. I wish endos were more educated to tell T1 families to look out for those.

    DD's blood antibodies were so high that the GI said we could probably skip the biopsy, but we wanted absolute certainty. I didn't want to risk a public school, or my daughter, questioning the diagnosis down the line. The biopsy itself was not as bad as we expected. The worst part for our DD (who is a touch on the anxious side) was the delivery of the anesthesia. She did not like wearing the mask, and really fought the nurses on it. I think the procedure itself took 20 minutes or so. She was in a recovery room for about an hour, and then went home. She felt ok that day, just a little groggy. We got the confirmation about 5 days later.

    We are still in the process of figuring out how to change our diet, and how to de-gluten our kitchen. The good news is that even with our fumbling attempts to go GF, we've seen the untreatable lows almost disappear in just the first month.

    I'll try to think of some good early-days resources that we've used and post them here later today or this weekend. Best of luck to you!
     
  3. sincity2003

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    Thank you!
    The way his endo was talking, it was not an outpatient procedure. I'm wondering if that's specific to this children's hospital, or his preference? Or maybe it's because we live almost 2 hours away, with no traffic, from the hospital and if there are complications he wants us there?

    It's so hard just waiting. I feel like I want an answer, but to get that answer, I have to put him through another procedure.

    I've found some links through Pinterest, but whenever you get a chance, would love to see yours too.

    Thanks again!
     
  4. Nancy in VA

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    We went through the diagnosis when Emma was 4. The biggest fight I had the hospital is that she had to be food-free from midnight and at one point they wanted to schedule her at about noon - I said no way for a diabetic, or a 4 year old for that matter, to be going so long without food - and we had to treat lows. Finally got a first thing appt.

    She went out with the anesthesia very quickly - procedure was about 15 minutes for pictures and biopsy. It took her about a hour and a half to really come out of the anesthesia - she would wake up for a minute and then go back down. All was fine. We left probably 3 total hours after we arrived.
     
  5. Snowflake

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    So, I'm new to this world, but all the biopsy stories I read when we were preparing for ours described it as an outpatient procedure.

    We had ours at 6:30 a.m. because we had to observe an 8-hour food fast and a 3-hour liquid fast (as Nancy said in PP) before the anesthesia. The GI said he always scheduled Type 1s super early to help parents manage bgs with the fasting. We gave her some apple juice at 3, and then ran a reduced TBR, and her bgs ran in the low 200s through the end of the procedure. We were basically up for the duration starting at 3 a.m., and my husband and I actually mentioned to each other that it might have been nice just to be in-patient the night before because of all that.

    As for after-care, we were instructed to monitor DD's stools for a few days to make sure that the procuedure didn't cause any bleeding, but I think that's something that you and your son should be able to do at home. All of this is a long way of saying that it seems unusual that your son's procedure would be inpatient, and it might be worth asking the doctor for more details.

    I'll throw some links to resources into a separate post.
     
  6. Snowflake

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    As for resources, this is just what I've found helpful as a parent new to these issues. There does seem to be a lot of conflicting information about GF on the Internet (more so than about T1 management, IMO), so sometimes I feel the need to doublecheck info that shots up on celiac and GF chat boards:

    Websites:
    The Newbie section on celiac.com
    http://www.celiac.com/pages/Newbie?.html

    The website of CSA (our local chapter has a great site also, so you might check yours out)
    http://www.csaceliacs.info/

    The Children's Hospital of Philadelphia Celiac Page for families
    http://www.chop.edu/service/center-for-celiac-disease/resources-for-families/

    Foundation for Celiac Awareness Printable guides and tip sheets:
    http://www.celiaccentral.org/Resources/Printable-Guides/373/

    Books
    Celiac Disease, a hidden epidemic by Peter Green
    http://www.amazon.com/Celiac-Diseas...1391892130&sr=8-1&keywords=peter+green+celiac

    Kids with Celiac Disease, by Dana Korn (a little dated, but there just isn't a lot out there for parents to start with!)
    http://www.amazon.com/Kids-Celiac-D...77&sr=8-1&keywords=parent+of+kids+with+celiac

    And another cool resource -- if your son is diagnosed via biopsy, the University of Chicago will send him a care package with food samples and magazines:
    http://www.cureceliacdisease.org/living-with-celiac/care-packages
     
  7. sincity2003

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    Thank you! I've bookmarked them all to browse through the next couple weeks.
    I think I'm more concerned with school than anything else at this point :(
     
  8. aklap

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  9. sincity2003

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    Thank you! His current school turns their nose up at anything to do with helping him currently, but we are moving at the end of this school year and his new district has already been in contact with us. This will help me be more prepared. Thank you again :)
     
  10. aklap

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    Excellent! Good luck with the move and the new school. :)

    You are most welcome.
     
  11. sincity2003

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    Just an update: Today we met with the GI doctor. He will be scheduled sometime in the next 2 weeks to have the endoscopy procedure done. It is outpatient, but will be scheduled very early in the morning (his words) because he is a Type 1. We will be staying at a hotel close to the hospital the night before because it is such a horrendous drive to get to the hospital in the morning. While his blood antibody wasn't high enough on its own, his other symptoms have the doctor concerned enough to move forward with the test. At this point, we just want the answer, whatever it may be :)
     

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