Proud

Diabetes month @Six Until Me

Diabetes month @Six Until Me

So much shame. Heaps.

Woke up tiny scrap pride re analogy arrive via dream. Being told your child has celiac disease is like being told he can no longer wear clothing from Patagonia, and instead has to have everything from Ibex but Ibex doesn’t make children’s clothing so you should work on this analogy when you’re fully awake because it is

b r i l l i a n t.

Today met w. celiac nutritionist associated w. Bubs’s gastroenterologist. Really liked! Amazing person spent 2 + hours explain celiac & diet. Everything interesting. Left so confused, def. not proud.

UNDERSTOOD PARTS: Anecdotally, most T1D kids diagnosed w. celiac do not have symptoms like diarrhea/whatever the normal symptoms are. And: Five Guys Burgers and Fries fries are GF and you can bring your own (GF) bun.

RECORD SCRATCH NOISE: Bubs needs 235g CHO minimum/day. Speaking of failed needs, he also needs at least 3 glasses of milk/day*. Speaking of milk, Milky Way is not GF; Milky Way Midnight is GF.

Bigfoot not reveal depth of failure except say, Wow, he is not getting even close to that amount of carbs and he doesn’t really drink milk as a beverage except maybe in tea if he has tea.

THINGS TO TRY: Seeds of Change brown rice couscous blend; Bionaturae GF pasta; tax deductions GF food; buy GF foods in bulk from Amazon; store in spare fridge/freezer; get spare fridge/freezer.

*Milk!

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19 responses to “Proud

  1. I’m not disagreeing, but did they elaborate on why 235? Seems like such a specific number. Same for girls at his age or didn’t ask because don’t care/not applicable.

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    • Katy

      this was the minimum based on avoiding weight loss. 260 was his ideal for weight gain, which he needs to do to get back on his previous-to-celiac-interruption growth curve. the g CHO was determined with a calculator & 4 calories/gram carbohydrate & needing 1800 calories to maintain weight and 50% of calories should be from carbs…

      i felt like…have you never tasted peanut butter?

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    • Katy

      I have no idea. I think the minimum for normal living was 235, and 260 was the ideal for putting weight back on.

      Like

  2. Great video at Six Until Me!
    Curious – what kinds of symptoms do T1D kids often show with celiac?…
    Sorry you all are dealing with all sorts of craziness, but with all the resources in the area and your dry sense of humor, you’ve got great resources. 🙂

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    • Katy

      The symptom here was hearing the patient say “I have lost my zest for life” and then seeing he was too tired to have fun, even super-tantalizing fun like playing in one of those trampoline dodge ball places with trampoline floors and walls. Depression. No apparent poo problems. No complaints of stomach pain. Now that he feels better, he realizes his stomach kind of always hurt.

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  3. Dang that’s a lot of carbs! Does almond milk count towards the 3?

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    • Katy

      I didn’t ask. He mostly drinks water. He doesn’t really drink other beverages unless he’s low (juice) or is having a milkshake or smoothie or something fancy like that.

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  4. Dude! That is A LOT of carbs. Can you go back down after he gains some weight back? (not questioning whether or not he CAN have all those, but if he actually has the physical ability to eat all that)

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  5. theethanandisaacshow.blogspot.com

    Hola! I found your blog after the wonderful video on Kerri’s blog. Thanks for doing that with her. And I am sorry about the recent dx with celiac disease. We found out in July that our son has celiac disease also, however for him he did have the typical symptoms. As I just read in the Living Without magazine the typical gastrointestinal symptoms seem to decrease as children get older in their dx age. Isaac, my youngest with t1d and cd, had fallen way off of his normal growth curve and despite it “not being the scheduled time” for his bloodwork I am thankful I pushed for it. In just the few months we’ve been gluten free he’s grown over an inch (previous year was 4cm!!!) and he’s gained over 5lbs, we didn’t increase his carb intake purposefully, however with his gut healing he has had an incredibly hearty appetite. We found a lot of great GF foods that are even passing my older son’s palate! I wish you luck in this and am here to answer any questions you may have, I am still new in this, but being unable to sleep much I have done my fair share of reading cookbooks, tweaking recipes and making things work 🙂

    Like

    • Katy

      My person has gained, I think, 2 lbs in 2 weeks of GF eating. Yay, us! (Your family and mine, I mean.)

      The pollyanna in me had been thinking cd was kind of nice, because it would force us to eat only our fancy/special/homemade foods. Now I’m doing fancy/special/homemade foods + Haagen Dazs.

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  6. I don’t have kids (I have a niece and nephew though) but I’m pretty sure the consences here is that 235g of carbs is A LOT no matter who you are.
    That makes me question the legitimacy of the dog. Ask any non D person to eat 235g of carbs. I doubt they do, now add bg management.
    just…. crazy.

    Like

  7. Linda

    Fat and protein give you double the calories per gram of food, don’t they? Of COURSE peanut butter! Best to ignore some of what “They” say, when it’s ridiculous. “They” are at work, conveying to you what someone taught them in school. You and your family are bobbing down the rapids of your actual 24/7 LIFE.

    Like

  8. Ben

    He needs ice cream! Lots of ice cream. Full fat ice cream. Milk+fat+ some carbs, but fat! so less spike from carbs! Häagen-Dazs. “As a general rule, the gluten in our frozen dessert products is present only in added bakery products such as cookies, cake, or brownies.” see also: http://glutenfreeguidehq.com/haagen-dazs-gluten-free-menu/

    gross but popular high calorie food in my house: cheeseburger with no bun. In fact, skip patty stage, just cook meat, melt cheese on top. Also, chili cheese chips: corn chips, cheese, chili on top.

    Personal frustration: All diabetic/low carb cookbooks have recipes that resemble skinless chicken breast cooked with no oil and a side of non starch vegetables coming to a total of 400 calories! T1D boyfriend plays sports, eats like 2500 calories a day to maintain weight. Requires special T1D cookbook for active boys.

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  9. That is, indeed, a ridiculous amount of carbs (to someone who counts them… a 235-carb binge sounds quite attractive to my growling belly right now)

    What does Bubs think? I ask because, there was this time when I was probably 9 or 10 years old and was staying overnight at my grandmother’s house, had a 911-grade hypoglycemic reaction overnight (although they didn’t have “911” yet) and ended up in a hospital I’d never been to before and being cared for by a doctor who I didn’t know.

    My parents, who eventually showed up, told this doctor that I often have blood sugars in the three- and four-hundred range and thought it was a problem. The good doc said “that’s OK, he’s a growing boy and he needs lots of food to grow and be healthy”. I thought he was the coolest doctor ever, and referred back to that statement every time I got yelled at for cheating on my diet (as was the way CWDs were raised in the ’80s). I seriously wanted to permanently switch to this doctor because he liked high blood sugars, for a reason that made sense to me (an ignorant kid), despite his being so far from home. No success on that front, and in hindsight, I now think differently about this doctor.

    I wonder if Dr. Milkyway-235 and the guy I saw went to the same med school.

    Like

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