Posted by: Susan | December 28, 2011

Another gluten free teen

This hilarious picture was taken by our friend Drew when he took Sam, April and Jake to see the Chipmunk movie.  Our nick name for Sam is Mr. Personality.  Can you see why?

Today I am headed down to Cincinnati Children’s Hospital to meet with a nutritionist.Jake in the hospital lobby.

Jake checking in for his appointment.

Our last appointment there was at gastroenterology.  Why you might ask?  During our diabetes visit the doctor was concerned about his blood glucose and ordered a blood test for Celiac disease.  This disease keeps the body from absorbing food in the correct way and would affect how a person with diabetes would handle their disease.  The test came back positive so off we went to the gastro clinic.  People with Downs syndrome and diabetes have a higher rate of Celiac disease.  Sorry Jake, you have the double whammy of both.  Jake told the doctor that he “did not choose Celiac disease.”  In other words he was not going to accept the diagnosis.  That’s when I knew outside help was needed.  He has watched his brother have to give up all things that contain gluten: pizza, pasta, bread, fries cooked with anything that has wheat.  All foods in the basic teen diet.  Fortunately I can make all those foods gluten-free.

After the hospital we will go to Kroger’s and let him pick out some of his new, soon to be favorite, foods.  It helps that Sam and April’s boyfriend both have Celiac.  My guy Jake is a trooper and I am sure he will adapt just fine!


  1. We are gluten free here as well. While my sammy does not have celiac disease he is gluten intolerant. It takes a while as you know. It is hard however at first. thankfully GF foods have come long way in the last few years

  2. I have to agree with Jake…Hannah has a rare chromosome deletion and has a lot of issues, last year during spinal fusion her kidney’s stopped working and had to have dialysis for 3 weeks so now we have to see nephrology(#1)…recently she had to see allgery (#2) for chronic hives, so he did bloodwork and she has high ANA levels and has to see a rheumatologist (#3) and high thyroid levels so she has to see endocronology(#4) that is in addition to all the other specialists we had to see before..we didn’t choose either and don’t want any more specialists…jake, it just stinks 🙂

    • Jake also has this hard to pronounce and even harder to spell skin condition going on: Elastosis perforans serpiginosa. It is another auto-immune disorder. Like your daughter he has the thyroid thing too but that was an easy correct with medication. I hope all your news is good when you see the specialists. Does your daughter have Celiac disease? One of the symptoms is a skin rash. Sam, my other guy with Celiac, had hives come and go for no apparent reason. Now we know it was all part of Celiac disease.

  3. Hi Susan-
    I admire your ability to use and cook with gluten free foods. It’s not easy and takes more effort (as if finding time to go to the market and cook isn’t enough!).
    Thanks for visiting my blog. I will send you MB pics anytime you need some extra sunshine! Teri

    • Oh yes, send some pictures of the Strand and beach my way………..

  4. My daughter with DS (almost 21) has celiac disease, and my husband and youngest (typical) daughter are both gluten intolerant. Gluten-free food may have come a long way in the 8 years our family has been on this diet, but it is still very expensive. A couple of great cookbooks and internet searching for recipes always seems to help.

    BTW, I just found your blog as I was searching for a family with kids with DS in their 20’s. Thanks for sharing your family with us! 🙂

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