Replies to This Discussion

Permalink Reply by Tom Goffe on September 17, 2009 at 9:36pm

I've moved around a bunch since I was first told about the gastroparesis. Each time I get a new Endo/PCP and show them my logbook, they always start with "you really need to get better at controlling your blood glucose." I then tell them about the stomach issues and it is almost like Roseanne Rosannadann saying "oh, well, that's different now. Never mind."

Actually, they have been quite helpful, as well as several dieticians I've seen about this. The problem is that they need to work together. The endo doesn't get how various food characteristics influence digestion rate and subsequent carbohydrate abosrbtion, while the dieticians don't quite get insulin rate of action, infusion variables, etc.

If you are a perfectionist with Type I and gastroparesis, you had better learn agner management.

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Permalink Reply by Cash Reynolds on September 17, 2009 at 9:47pm

Tom, I believe your greatest control will be through dietary changes. For this reason I've been somewhat skeptical of your claim to having tried everything, though I'm certainly interested in seeing evidence that contradicts my beliefs.

I was described as a 'brittle' diabetic and experienced wild blood sugar swings for 15-16 years. As I said, during that time I experimented with everything (or so I thought).

I switched to a Paleo diet, completely, strictly excising all sugars and starches. I eat meat in abundance, a lot of fat (my cholesterol has dropped to 145), some vegetables, nuts and seeds, a tiny bit of fruit.

It is difficult and I still crave carbs regularly. I also miss milk and legumes.

I have cheated on my diet, by drinking beer, wine and whiskey, and by drinking diet sodas (which I'm now going to quit).

I am down to consuming 29 units of insulin per day. My average blood sugar is 103. My standard deviation since switching to a strict Paleo diet is 29, which is fantastic.

And these three numbers are your most important performance metrics:
1) total daily insulin
2) average BG
3) BG standard deviation

You could try to prove me wrong by doing a 30-day switch to a Paleo diet. That's how I started.

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Permalink Reply by Tom Goffe on September 17, 2009 at 10:52pm

Pardon me for causing your skepticism when I said "I've tried everything." What I meant is that I've tried everything recommended by my medical team. They comprise a board certified PCP, my endocrinologist (MD, PhD.), cardiologist (had my first heart attack @ 43), gastroenterologist (board certified), neurologist (MD, PhD. helping with autonomic and peripheral neuropathy), dietician (PhD.), nephrologist (dual board certified MD & PhD.) and CDE (MSN). Given their vast training and experience, I feel it is an intelligent thing to keep them fully informed of my condition and to implement their best professional advice. I am unwilling to risk my health on some treatment de jour that I read on the internet given that I have neither the training or experience with which to critically evaluate the efficacy of various claims.

That said, I appreciate the spirit in which you offered your experiences. It is gratefully appreciated.

I'll confess that I am unfamiliar with the "Paleo Diet." I'm on a personalized regiment that generally follows USDA recommendations that are tailored for various conditions I have. In fact, my most familiar encounter with the term "Paleo" is that my father struggled over whether to major in Paleontology or Geology. He chose the latter, for what it is worth.

Permalink Reply by Gerri on September 17, 2009 at 10:14pm

I've given up on dieticians because none have been supportive of low carb. I do my best to control gastroparesis with small dinners that aren't high in protein or fat. Big evening meals do me in. Sometimes that works, sometimes it doesn't. I stay up way too late at night waiting for the spikes to hit when my stomach empties. I tried liquid dinners (protein shakes or soup), but that got old quickly.

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Permalink Reply by Kim Nater on September 13, 2009 at 3:53pm

I'm considered brittle also. I try as hard as I can to stay within range, but I still experience wide swings in my blood sugar levels. I'm wearing a CGM, which seems to be helping.

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Permalink Reply by Ann M Meyers on September 14, 2009 at 12:01pm

Hi Dave!

As I can remember the first person was my pediatric Endo when I was 16 yrs old.
Then again at 24 yrs when I had to be hospitalized for a mayor DKA, 900 BG due to a ER that forgot to live orders to unhook me from the dextro IV. I was transfer to another hospital by ambulance where I spent 1 week in ICU, 2 months in the hospital. At that time the Hospital policy was I needed 3 BG readings in a row to be within "the normal" range to be released. In that controlled environment with around the clock attention by nurses and doctors, diets, medication, constant bg monitoring 24 hrs a day, etc.. 5 days passed and they could not achieve the 3 bg readings. I could not stand staying there any longer; so I made the decision to check out myself. And that was the next time I was called brittle.

Have a blessed day!
-Ann

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Permalink Reply by Ann M Meyers on September 14, 2009 at 9:17pm

Tell me about it! =D

Have a good day tomorrow!
-Ann

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Permalink Reply by Domo! on September 17, 2009 at 9:00pm

i don't like the word brittle, it makes me feel like i'm broken when really i'm lazy or uncooperative. I think that if you find yourself doing everything you can and your sugar is still wacky, then you need to start a clean slate, go back to the beginning, and figure out what changes can be done. It might be something you didn't think of before.

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Permalink Reply by Unicornzzz on September 17, 2009 at 10:38pm

I am a Type 1 brittle diabetic.

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Permalink Reply by Rachel on September 18, 2009 at 7:12am

I am a type one brittle diabetic as well. I have been on the pump for 2 years and i still have lots of ups and downs but it has made my life easier and dose help.

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Permalink Reply by etta amy on October 10, 2009 at 5:42pm

Sometimes I wonder if we are always cognizent of the stress level we are experiencing at any given time. Subsequent to starting on the CGM, I have noticed incredible increases, and decreases, in my BG due to stress or relaxation/happiness. I have started to make a conscious effort to relax myself when stressing, calling up biofeedback techniques I learned years ago but haven't regularly practiced. Has anyone else worked on relaxing themselves to turn an "up arrow" into a "down arrow"?

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Permalink Reply by Cathy on December 15, 2011 at 7:34am

A friend said new in Canada might have new driving restrictions or revoking licenses on Brittle Diabetics, any one else heard of this?

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