How to Get Into Yale

Thursday, time for drive to TrialNet @Yale. Buckle into car.

Pause. Read email from Bubs’s endocrinologist:


Maybe it kind of *is* what I wanted to hear, so there will be concrete steps I can take to help him feel better fast?

Drive 2/3rds across giant state of Connecticut, listen David Sedaris read from diabetes with owls book, cracking up whole way, skip over super-inappropriate parts (men in cars drop trou) but relish essay w “freaky mothafocka” because Bigfoot think worth it for literature.

Finally arrive New Haven, Shake Shack.


The 12-year-old in me has a crush on him: it’s the vocabulary and the hair.

After dinner, Jack clutch chest “Ahhg! My heart feels like it’s burning!”

BIGFOOT: Maybe it’s heartburn

JACK: It is?

BF: I don’t know–I’ve never had it. But if you feel like a burning in your heart? That’s probably what it is

Crap! That’s also one of the symptoms of celiac!

BF: Have you ever felt it before?

JACK: I guess, after I eat sometimes

Arrive hotel. Jack: “What it lacks in style it makes up for in space.” Unfathomable Joe/Jack live big beige apartment two weeks. (Photo not available. Imagine beige + big screen TVs. Man kicked out of home pre-divorce vibe.)

Morning of TrialNet. Meet whoa, wow, so nice endocrinologist leading study. Lots of time explain, make conversation Jack, no pressure. Rare meet super-genius of science nuanced interpersonal skill.

It was unclear to me why they removed his socks.

It was unclear to me why they removed his socks.

Begin OGTT: 96 mg/dL.

Jack drink medical grade fruit punch. Ahhg! This hurts! It hurts so much! Starts panting.

NURSE: Don’t throw up

STUDY ADMIN: Don’t throw up

NURSE: Don’t throw up. Take it slow. You have five minutes to finish the drink

ENDO: Don’t throw up. Think about something else

Jack: (panting like woman in labor, fast hooh-hooh-hooh) I’m okay

BIGFOOT: Do you want some water?

Nurse: I don’t want him to have any water until he gets the whole drink down. Take your time

JACK: (holds cup up to mouth)

STUDY ADMIN: Is he okay?

JACK: I’m okay. (Gritting through pain like war hero.) I’m savoring it

75g CHO down the hatch

Heartburn? But then not celiac-related heartburn, because medical grade fruit punch certainly gluten free–no?

1-hour mark: 190.

2-hour mark: 150 or 170 or some other number high enough qualify abnormal but low enough not qualify diabetes = still candidate for drug trial.

After OGTT, ravenous. Nurse brings Froot Loops, carton of milk. Jack “This is my favorite junk cereal! And it’s the kind that comes in its own bowl!”

Then heartburn.

Then still hungry, lunch at Chipotle. Then heartburn.

A 12-year-old boy should be able to eat a gigantic burrito without getting heartburn so excruciating he has to stop walking and go ahhhhhg.

A 12-year-old boy should be able to eat a gigantic burrito without getting heartburn so excruciating he has to stop walking and go ahhhhhg.

JACK: I don’t think this is really heartburn. I just feel it after I eat sometimes, but I don’t feel like this all of the time.

Bigfoot plan bring Jack along Bubs’s pediatric gastroenterologist appointment Monday, see if can get double advice, schedule twin endoscopy, if not, just act casual. Oh, he just came along to give his brother moral support.

Tentatively schedule TrialNet drug trial begin October 21st. Yale still need official BG results from lab in Denver or University of Florida. Other fine person scheduled New Haven 10/21—seems like fate but Bigfoot still uncertain.

When drive home, stop @grocery store pick up dinner. Bigfoot pause long time bakery case, feel tears well up my poor children. Poor me! These beautiful cupcakes–oh! But then remember never, ever buy giant cupcakes anyway.

Never had it, never will.

Boo hoo zone.



  1. type1dmom · September 28, 2013

    Those are some GIANT cupcakes! Also, I am wondering if Jack’s “heartburn” is stress related? Can’t imagine this trip was a peaceful walk in the park for him. Sorry about Bub’s celiac diagnosis. Obviously not what you wanted to hear but probably better than “results were inconclusive”. At least this way there is a definite answer with a definite solution and hopefully Bub’s will start feeling much better very soon. I admire you so very much and I think you are handling all of this very well. Hang in there!


  2. Linda · September 28, 2013

    “Two Steps Forward, One Step Back: A Journey Through Life, Ulcerative Colitis, and the Specific Carbohydrate Diet” by Tucker Sweeny and Carol Thompson is a personal narrative by a friend of my kids and his mom, a friend of mine. He went through a celiac/colitis cluster F, but was able to cure it through changing his diet.
    I haven’t read it (too busy being a menopausing GD/diabetic?) but in case it would be useful to someone having a cluster F squared like you I figured I’d point it out. So sorry. Maybe you and Bubs will write the great book of Celiac+Hashi+D = delicious happy healthy life. Tucker is grinning every time I see him.


  3. Theresa · September 28, 2013

    Yikes, that’s a lot. Are you going to schedule an endoscopy? I was unsure if I should do it for my T1 3yr old last year and decided to go ahead and do it- just in case there was no (reversible!!)intestinal villi damage yet, and we could delay going GF until out of crumb-filled preschool. There was damage, and they found something else for me to stress about- eosinophilic esophagitis. Totally vague condition with even more vague suspected causes- all diet. I’m ignoring that one now as he has no symptoms – reflux or heartburn 😦 – and going GF is enough. Not much left for a T1d to eat. I swear, with all these possible dietary restrictions, straight up candy seems safest. Totally crazy. Well, good luck. it’s tough. Easy at home. Challenging at bday parties. Totally screwed up while traveling. (BTW if ever miss connecting flight and can’t get out of airport city till next day and have to eat out of vending machine, cheetohs and MnMs are gluten free. Gross.)


  4. Scott E · September 28, 2013

    As I said in my last comment: crap.

    Seriously. A good poop always makes a person feel a little better.


  5. drjmeade · September 28, 2013

    I have esophagitis (unknown etiology – prob the MS) – it hurts the most with cold beverages. At first I thought it was heartburn. The meds for it work amazingly well. Just a thought.


  6. fourdays22d · September 28, 2013

    gasp. tears. are you ok? i can feel your strength even if you may not sometimes. loves to you.


  7. Joanne · September 28, 2013

    Wow… Your life has been interesting lately, hasn’t it? And by interesting, I mean filled with suckitude. Sorry you’re having to deal with all this. And thanks for the shout out on your last post… It made me laugh!


  8. Pancreastic Mom · September 28, 2013

    Good grief…you and Jack with new (and possible?) diabetes and you think you at least have Bubs squared away for the moment and then, BOOM, add in the celiac. Sorry. Eating is hard enough with diabetes. Hoping fro the best for you all. Do you read CandyHearts blog? T1d and Celiac.


    • Katy · September 29, 2013

      I do read that blog sometimes! And I always think “ooh thank heavens that’s not my situation.” The whole separate toaster/freezer full of GF cupcakes thing makes me want to crawl back into bed. Wendy is fabulous.


  9. Mary M · September 28, 2013

    Step 1 in the world of celiac mom, blood tests for you three and anyone in your family you can convince. We picked up me, my Mom, and my cousin off my T1’s celiac dx. And then you won’t have to wonder about Jack. Look for a book by Peter Green about celiac, he’s the be-all end-all. And search for an article by Fasano in Scientific American from about 4 years ago. It will give you the science side, feeding your future nurse tendencies.
    If there are 10000 things to eat in the world, he can still eat 3000. It’s not awful, and I am grateful for what I can eat and cook. It’s easier not to be celiac, but you’ll get through.


  10. Robin Jingjit · September 28, 2013

    I didn’t know they could screen for it without doing the endoscopy. That’s how I found out I had it.
    I’m sorry for you, that this adds another food-related burden for you, but I’m so happy for bubs. I remember how I felt so happy and alive after I stopped eating gluten. It’s so worth it, I bet he’ll never want to cheat, since it makes us feel so crummy. At least, that’s how it was with me.
    One thing I can think of as a positive right off is that it seems like you guys already eat lots of whole foods, which are way easier to make gf than pre packaged stuff where you don’t know what’s in it.
    Also, you’re used to looking at labels so it’s not a new concept for you. And I remember that bubs likes to eat the same foods every breakfast/every lunch so that’s another plus. You can figure out what you need to make his lunch and his egg pancakes gf, and that leaves dinner which can be like meat/veggie and there you go!

    Ps I always thought heartburn was when you kind of throw up in the back of your mouth a little bit, and it’s really acidy. I didn’t think it really felt like a burning heart. Though based on the name alone, maybe I’m wrong about that.


    • Katy · September 28, 2013

      I think he will have to have an endoscopy, but it is more to confirm it than to diagnose it? I was thinking they new he had it from the blood work, and that the endoscopy was more to verify the level of damage that has been done? I know nothing. I need to read more.


      • Mary M · September 28, 2013

        The endoscopy confirms the diagnisis. It’s the “gold standard” of diagnosis.


      • Katy · September 29, 2013



    • Katy · September 28, 2013

      Robin, I am so grateful and happy to hear what you have to say! I love imagining how much better he’ll feel soon.


      • Mary M · September 28, 2013

        Went gf on a Friday, was dancing and happy, able to make it thru the day without a nap by the next Tuesday. It’s huge.


  11. Kristin · September 29, 2013

    So sorry you guys have to deal with this. Our little guy has acid reflux after every meal but tested negative for celiac – I was half-hoping for some clarity. Seems like you’ve got the baking with almond flour down – your boys are very lucky to have you as their mom!


  12. Reva · September 29, 2013

    Oh man, celiacs too! I admire you so much for still finding the positive and the humor despite what you and your children are going through right now. They are so lucky to have you as their mom. Hang in there.


  13. Pingback: Stories | Test Guess and Go
  14. Scott K. Johnson · October 10, 2013

    Wow, Katy, so much stuff going on for you guys. I know I’m behind on much of it, but I want you to know that I’m thinking of you and your family and sending all sorts of positive vibes, thoughts, prayers, and everything else I can.


Please say things:

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s