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diabetes, esp.type 1

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diabetes, esp.type 1

Posted by Mindy on November 03, 2003 at 07:43:01:

I've been reading SO much about diabetes the last 6 years. There's so much out there. Sometimes there's only a paragraph in a book that helps, and there's a lot of digging to get all the hints I need.

It occurred to me, anyone else out there who's dealing with it may have hints I haven't come across, and I'd like to hear them.

This morning, I wrote a couple of paragraphs about it under 'Fruit-young or old ' in response to Luba.

In Reversing Diabetes ( a Joslin center book) I came across 2/3 of a page devoted to vegetarians dealing with diabetes, It said they might do better with small equal sized meals instead of the big meals/small snacks paradigm- that was SO helpful for my son-it made a major difference.

In Diabetes Solution by Richard Bernstein, I learned that 'Humulin" N actually has animal protein in it and that animal protein messes with the human immune system.
Dec 1997, I went to give blood and they had added a new question- have you taken bovine insulin since 1980 ( this was under the CJD section-mad cow disease). I felt relief that my son had never been on bovine insulin, but something kept nagging at me. Finally, I remembered Bernstein's mentioning that 'N' has animal protein. I called Eli Lilly and asked what kind- they refused to tell me. I called Bernstein's practice. His people were very helpful ( I figured he had the answer in his research notes for the book). He passed along that the animal protein in 'N' varied by where it was manufactured and it could be beef, pork, or whale- you'd only know by Lilly's records of lot numbers ( and who keeps all the old insulin boxes with lot numbers over the years?).
A recent Molly Ivins political column talked about recent liability protection Congress gave Lilly and other Phar. companies, and I wonder if it's because the whole CJD thing is going to hit the fan? William Campbell Douglass, MD says that people who got growth hormone or pituatary extract) for shortness 30 and 40 years ago are just now presenting with CJD.What does that say about vaccines that have used animal protein all these years and people who took bovine insulin between 1980 and 1997, when the blood banks started asking about it. Type 1's can't give blood, but type 2's sometimes take insulin and they can give blood. Schizophrenics were treated with insulin therapy for a while and they could've given blood- so was the blood supply from 1980 to 1997 contaminated with cjd from former bovine insulin users and other drugs that haven't been mentioned at the blood bank yet- insulin can't be the only one that had beef.
Boy, have I gotten off the subject of diabetes hints. OK:
-I took my little boy off 3 big meals, 2 small snacks, to about 8 smaller meals throughout the day and protein ( tofu, nuts, fake meat) whenever he wants.
-Apples don't seem to really effect his blood sugar- he eats one whenever he want
-A warm bath seems to lower his blood sugar- have to watch out for lows during long bath- we tend to test before bath and feed if necessary.Told a type 2 friend about this and she gets good results with a bath to ower blood sugar.
= there are times he eats an entire pound of raw carrots- his blood sugar stays fine ( he enjoys grating them on a tupperware safety grater and eating the mush- I imagine chewing a whole pound could hurt your jaw.

-drinking a lot of water helps lower a ridiculous high.

-Bernstein's advice was never to use a shot of more than 7 units. Went to more frequent, smaller shots, got better control.

_ Bernstein is anti-N.He isn't vegetarian, but says animal protein in the shot messes with control. Went off N. Besides my cjd concern, it was really unpredictible- the kid would sometimes plummet 200 points in 15 minutes. On just R, we don't get that anymore.

Found the Glucose Revolution, and Eat Right for Your Type to be helpful.

It was clear that food was a problem. Finally, figured out wheat was messing him up. Doctor's office didn't offer help with that- had to test(blood allergy test) at a chiropractor, so no insurance help with cost). Doctor's office, now, years later, is starting to recognize celiac disease- problem with not only wheat, but barley,rye,oats-- it affects type 1 disproportionately to the rest of the pop. I'm now wondering- which came first?- the celiac or the type 1 diabetes- he was super skinny most of his first 7 years before diagnosis- he was a breast fed whole grain vegan. I wonder if he had celiac all along and the problem digesting nutrients led to the type 1- which has been linked to nutritional deficiencies.

- new onset type 1- have seen two possible cures worth researching if you are dealing with new onset. Atkins organization has clained cures with an injectible form of calcium they import from Germany ( not in common use in US, near as I can tell).
- there's research linking type 1 to pellagra- the old nutritional isorder- some researchers have cured new onset with a special type of niacin ( don't try this with regular B-3-- it RAISES blood glucose).
-Ither cures so far seem to use anti-rejection drugs which is expensive and compromises the immune system- stem cells and transplants don't look good for those reasons.

- besides hints about day-to-day management, would like to hear about work on possible cures ( including the bad parts, like if they depend on carcinogenic anti-rejection drugs).
-My son is a math/science/computer type. Most of the ones I've ever known do their work at night. My mother and sister were both night people and a huge amount of jobs are at night. After waking the kid for a couple of years to conform to an artificial schedule for diabetes, I tried 6 weeks of letting him sleep and wake naturally- major improvement in his glucose. Lack of sleep is a stress. Stress is now said to LOWER type 1 blood sugar and RAISE type 2's blood sugar ( recent finding)

-an ADA book, diabetes A to Z said virtually all amputations are in smokers. That gave me a psychological lift- one small thing less to worry about.
-interesting study reported in Prevention- kids who watch R movies are more likely to smoke and drink, even if their parents don't- so if you're setting a good example about lifestyle, be aware that R movies can't undo your example.

-for anyone who is reading this who isn't up on diabetes:
-type 1, insulin dependent diabetes, diabetes of the thin, juvenile diabetes are all names for the same thing.It used to mostly start in childhood. Now it affects people in their 30's,40's,50's.It's caused by a virus. It is commonly diagnosed in children who have NO relatives with diabetes,. The National Vaccine Information Board has some good info on a vaccine connection- esp. pertussis(whooping cough), mumps, and rubella.Type 1 MUST have insulin.

-Type 2- similar symptoms, but really a different disease, but similarr treatment too. Also called non-insulin dependent diabetes, adult-onset diabetes, diabetes of the fat. It appears to be a lifestyle caused disease. It used to affect mostly overweight people in their 40's and 50's. It now affects children as young as 12.People with it sometimes take insulin to help control it, but are not DEPENDENT on insulin- they can live without it.
Is either curable or controllable with diet, if you are able to lose enough
weight, but many doctors give poor diet advice.
People diagnosed today are only overweight about 80% of the time. Thin people are getting it more.
Type 2 happens after a long time of over- producing insulin- hypoglycemics are at risk for type 2. Either your pancreas kind of burns out from producing so much insulin for years,and/ or, if overweight. your cells have fewer insulin receptors to get the insulin into the cells. So you're insulin resistant.

Re: diabetes, esp.type 1

Posted by Marion on November 03, 2003 at 08:24:10:

In Reply to: diabetes, esp.type 1 posted by Mindy on November 03, 2003 at 07:43:01:

Hi, Mindy

My son, who is now 40+, got juvenile diabetes when he was 6 years old. He had had symptoms which we didn't recognize for about 2 months, but fortunately, we discovered it before he went into a coma. He got mumps while he was in the hospital being treated for the high blood sugar! When I read later that they believe there is a connection, I wondered whether the mumps virus had been in his body and was activated by the diabetes (or something like that).
Of course, this was before they had a vaccine for mumps.
Thought you'd be interested in knowing this, although I know it is of no help to you. Good luck!

marion-Re: diabetes, esp.type 1

Posted by mindy on November 03, 2003 at 09:26:15:

In Reply to: Re: diabetes, esp.type 1 posted by Marion on November 03, 2003 at 08:24:10:

my son was 7 when he was hospitalized. He got strep throat 10 days into his stay and his first ever course of anti-biotics. I often wondered why, upon admission, they didn't test his blood to see what he had antibodies to- he had only had a couple of slight illnesses in his life and no vaccines- seemed he'd be a good person to study. I had pertussis duriong pregnancy, so that's a possibility for cause, but will never know. Once he had antibiotics, he got sick many times in the next few months- flu,mono,ear aches, all stuff he had never had before. Took a while before I found out one should counter a course of antibiotics with acidophilus.
Anyway, Marion, you might know some things you could share about how this affects driving and work environment. Does it make it hard to get a job when you have a condition that's going to impact health insurance costs a lot. I worry about how he'll afford the $5000 a year for supplies our insurance now helps with when he's on his own. Does having this kind of expense affect college financial aid- I keep reading how much in loans college students are taking out. When I finished college I only owed $2000 and it was often a hardship to pay- how do you do it while also paying medical bills.
Any advice on costs of test supplies- can we find them cheaper in Canada or Mexico when he has to start paying for his own and is there a limit to how much you can bring back for personal use?
I'm always confused by articles on plans to help pay for prescriptions, because they talk about 'drugs'- our major expense is supplies- are those being considered in all these legislations?
Driving- how does your son handle it? Mine is third generation absent-minded scientist, oblivious to the world and brilliant. I'd be scared to see him drive without insulin reactions. With? AAGGHH!
The mom who used to joke about my son marrying her daughter stopped doing so when he was diagnosed with diabetes. Did your son encounter prejuidice from females when he sought to marry?

Re: diabetes, esp.type 1

Posted by Veronica on November 03, 2003 at 10:36:52:

In Reply to: diabetes, esp.type 1 posted by Mindy on November 03, 2003 at 07:43:01:

Very interesting research, Mindy. Thank you for sharing this. You stated that your son was (is?) vegan so the following is probably not of direct interest to you but I thought others might want to read about the link between cow's milk and diabetes. Milk is of course another way besides vaccines that bovine proteins enter our bodies. (BTW I am a vegan who rarely consumes grains. It is very possible to follow a vegan diet and avoid the grains that cause him troubles with celiac.) My source for these quotes is notmilk.com.

"Studies have suggested that bovine serum albumin is the milk protein responsible for the onset of diabetes... Patients with insulin- dependent diabetes mellitus produce antibodies to cow milk proteins that participate in the development of islet dysfunction... Taken as a whole, our findings suggest that an active response in patients with IDDM (to the bovine protein) is a feature of the autoimmune response."
-New England Journal of Medicine, July 30, 1992

"In lieu of the recent evidence that cow's milk protein may be implicated in the pathogenesis of diabetes mellitus, we believe that the Committee on Nutrition should clarify whether cow's milk is ever appropriate for children and whether or not infant formulas that are based on cow's milk protein are appropriate alternatives to breast milk."
-Pediatrics, July, 1992: 89

"Antibodies to bovine beta-casein are present in over a third of IDDM patients and relatively non-existent in healthy individuals."
-LANCET, October, 1996, 348

"Cow's milk proteins are unique in one respect: in industrialized countries they are the first foreign proteins entering the infant gut, since most formulations for babies are cow milk-based. The first pilot stage of our IDD prevention study found that oral exposure to dairy milk proteins in infancy resulted in both cellular and immune response...this suggests the possible importance of the gut immune system to the pathogenesis of IDD."
-LANCET, Dec 14, 1996

"Introduction of dairy products and high milk consumption during childhood may increase the child's risk of developing juvenile diabetes."
-Diabetologia 1994;37(4):381-387

I would say that your son is very lucky to have a mother who cares enough to do this research for him. A dear friend of mine who is diabetic will spend an entire morning eating chocolates, diet sodas and coffee with aspartame and creamer and just adjust her insulin pump. She says that her doctor has told her that it doesn't matter what she eats. He says that all carbs are the same so she eats chocolate. I can't imagine having such a health problem and not doing any bit of research. She can't be bothered. I am in class with her once a week and we don't let her drive the car pool. She comes too close to passing out too often. I worry about her to say the least.

Re: marion-Re: diabetes, esp.type 1

Posted by Marion - to Mindy on November 03, 2003 at 11:05:13:

In Reply to: marion-Re: diabetes, esp.type 1 posted by mindy on November 03, 2003 at 09:26:15:

Oh, Mindy, your post brought back so many memories!
First, how old is your son now? It seems from your first post that you mentioned that you had been reading about and studying type 1 diabetes for 6 years. Does that mean that your son is now 13? Or had you written other posts before that?
I will answer any questions you have to the best of my ability. I know how concerned and worried you are.
No, my son did not have a hard time getting a job at all.
Your son and mine could be twins the way you describe him as "absent-minded scientist" and "brilliant". My son was the smartest of my three children all along. And he had the best temperment - he accepted his diagnosis and learned to give his own shots (though not right away - we practiced with an orange and I had him give me a shot (of saline water). He seemed to have all the bad luck healthwise - had severe acne as a teenager - which was cured with Tetracycline {I know it's not recommended, but I have read that if the acne is caused by a bacteria, it helps). The acne didn't return after he stopped the tetracycline.
He has seasonal allergies, doesn't tan (the others do), got glasses at an early age. I could go on and on. But, the main thing is that now he is married to a lovely woman and they have a 7 year old son.
I do think that some parents may have discouraged their daughters from dating him, but that was because of not understanding the disease. Today it's different. Also, I know of many athletes and CEO's, etc. who certainly didn't have any problem finding wonderful wives. My son is not athletic at all - isn't at all interested. His brother played football, baseball, etc. He was more into science, filmmaking, etc. Your son will be fine - he should take his time and find a caring, compassionate girl before he commits himself, right? There are many out there.
Driving was and is no problem at all. As long as he takes care of himself (my son now has an insulin pump), and watches his blood sugar - there again, it is so much easier now because he can so easily test his blood sugar while we had to use the Clinitest tablets!. His need for insulin went up while he went through adolescence and he was more brittle because of hormonal changes. But he always was careful to take some carbohydrates with him. And he always carried mints just in case he felt a reaction coming on.
My son graduated from Boston University and easily found a job. No one ever questioned his diabetes. And all his syringes, insulin pump, insulin, etc. are paid for by his insurance. He has a very nice job (Audiologist).
Where do you live? I am assuming you live in the U.S.
WEll, I've done my best. Hope I've helped alleviate some of your fears. As I said, I know exactly how you are feeling. Write again and I'll try to help if I can.

Re: diabetes, esp.type 1

Posted by mindy on November 03, 2003 at 11:33:47:

In Reply to: Re: diabetes, esp.type 1 posted by Veronica on November 03, 2003 at 10:36:52:

the abstract of that study was one of the first things my networking brought me 6 years ago.My son never had cow's milk, but, of course, as you mention, only 1/3 of the people have antibodies to it.

Cows, of course, are given vaccines and fed a lot of chemicals and meds.Yes, my son is still vegan, thought, as my husband and I age, we're adding some butter and eggs, but still no lactose or meat.

The advice people are given by their docs and dieticians is awful, the American Dietetic Asso. won't accept the glycemic index concept, and most patients are still told a carb is a carb is a carb, so don't blame your friend too much- most public school grads don't have the reading skills or thinking abilities to really research stuff and take comfort in following 'expert' advice.

One of the things that scares me most about infant formula isn't the kind of milk, but the corn syrup. People of my generation were raised on cow's milk and karo syrup. Canned formula is the same with vitamins added.

I suspect that a lot that's wrong with animal foods is what man has done to the animals- I'm told wild game has less cholestrol than raised meat, and raw milk still has it's enzymes while pasteurized doesn't. And, of course, what genius fed sheep's brains to cows ( the most clearly vegetarian animal) and started this whole mad cow thing.The notion that we, in our stupidity, can improve on Nature is CRAZY.

My son uses grains, but mostly brown rice now. We just switched from a barley malt sweetened soymilk to a rice syrup sweetened one and it's like a fog is lifting from him brain. There are good recipes on the Arrowhead Mills Brown Rice Flour bag- cookies with brown rice flour and ground walnuts ( we just sub water for the egg), and a banana bread that we make with anything mushy- tofu sometimes, applesauce other times.I'm really concerned with quality of life which isn't just limiting complications, but enjoying life's pleasures, so we have cookies and cake and banana halves frozen with a natural chocolate coating,.

We also freeze Vruit juice for popsicles- has a better consistency than most frozen juice pops. Vruit is 3 veggie juices and 3 fruit juices mixed. 3 flavors include tropical or citrus juices which we don't use, but the berry flavor is temperate and delicious- has carrot and beet juice and is yummy.

Follow Ups:

to marionRe: marion-Re: diabetes, esp.type 1

Posted by mindy on November 03, 2003 at 14:27:22:

In Reply to: Re: marion-Re: diabetes, esp.type 1 posted by Marion - to Mindy on November 03, 2003 at 11:05:13:

thanks, yes, he's 13. We live in the US, but not near a city.

I plan to drive him to college if he goes ( same for all teen-age boys-I don't like the statisics for teen male drivers and can't afford the car insurance for an under 21 driver anyway.)

Yes, he's always been very mellow about the diabetes. I don't want it to be a major time-suck for him, so I'll take a reading while he's engrossed in a game of chess.He has no sense of time. Neither does his father- I'm not sure how you manage something like this when you don't have a clue if 5 minutes or 5 hours have gone by.

When our son takes a long bike ride with his father, they stop at the half way point for a snack before turning back. They have been known to leave the backpack of snacks at that place. I arrange to drive out to look for them if they aren't back at a set time ( in case of mechanical problems with the bikes). I've found them walking their bikes back, the kid low,the snacks left behind at the halfway point, and my husband clueless as to this being a problem.I've tried overfeeding the kid before exercise, but his body just can't utilize excess food- he winds up really high.

Once I thought I'd like to go do something on my own, I rented a movie they all wanted to see, left food in front of everyone, and took off. An hour and a half later I returned, the food was untouched in front of the kid. I mentioned to my husband that it would've been good to remind the kid to eat ( he forgets), my husband's reply- "I didn't know he was supposed to be eating"
I went to take an elderly relative to the doctor. She refused to go to the appt she made, so I got back earlier than I expected. The kid's breakfast was in the fridge. I asked my husband why ( since the kid wouldn't have put food away) and he said that the kid wasn't eating it so he put it away. My husband's own food sits out for hours uneaten as he becomes absorbed in whatever project he's in and forgets to eat.I now feed the kid before going anywhere, or take him with me if I'm going to be gone more than 2 hours.

Does your son's wife have to keep after him to eat? The kid is very co-operative, but easily distracted. This seems normal for genius and I don't want to blunt that-I think America has fallen behind in the world because of public schools drugging the kind of boys who would've developed as scientists.

One question, my son can swim, but not float- he has practically no body fat, we felt like itwas a major victory when he put on 6 pounds one year. He sinks like a stone. Are there any tricks you know to help someone so skinny float?

Re: to marionRe: marion-Re: diabetes, esp.type 1

Posted by To Mindy on November 03, 2003 at 15:41:57:

In Reply to: to marionRe: marion-Re: diabetes, esp.type 1 posted by mindy on November 03, 2003 at 14:27:22:

Hi Mindy -
It really is very important for you to get your son into taking his part in this diabetes care. Thirteen is a difficult age, I know, but do you have a good doctor-- or even a good book especially written for teenagers or a little younger about diabetes--to teach him the importance of the need to eat all the lunch or dinner you have given him whether you are or not there? Your husband sure has a problem :-) I understand, though, because my husband was the same way. It's so much easier for some partners to let the stronger one take over and not even learn how to take care of the child with a medical, or any other, problem. That way they just aren't responsible for anything! How easy! I accepted that and realize that I shouldn't have; but now that I look back on it, I probably wouldn't have trusted my husband to look after my son. We had friends who both took equal care of their diabetic child; I really envied them. But the husband and wife both had studied the disease, talked to the doctor, etc.
I sent my son to a Joslin Diabetes camp one summer; he learned a lot there. In fact, he had a consultation with the doctor at the Joslin Clinic. I don't believe in their strict methods, but my son did learn a lot. When he was 15, we started going to an endocrinologist, who said it was time that he took over his own care - testing, etc. Well, you know that didn't happen, but the doctor did make my son realize that HE was responsible for himself and must learn because soon he would be going on dates, driving a car, etc. The doctor had to give him a note saying he was in good control of his diabetes. So, my son realized that if he didn't take good care of HIMSELF, then forget about getting a driver's license or even a learner's permit.
I did have a wonderful pediatrician when he first got diabetes, and he paid lots of attention to us. As I asked above, do you have a doctor that you feel comfortable talking to, who will take the time to talk to you? Hard to find I know. My son is far from a genius, but he is very absent-minded.; however, he does remember to take his insulin (of course, as I said he now has an insulin pump and so has to change the site every few days, poor guy. But he loves the pump.) No, his wife isn't very helpful with the diet, so he has to watch it himself (another reason for you and your son to work together on all this)
He doesn't have many insulin reactions anymore, but his wife does recognize if he looks 'funny' and suggests that he drink some juice. Hope I haven't gone on too long....

Re: to marionRe: marion-Re: diabetes, esp.type 1

Posted by mindy on November 03, 2003 at 17:04:26:

In Reply to: Re: to marionRe: marion-Re: diabetes, esp.type 1 posted by To Mindy on November 03, 2003 at 15:41:57:

I read an article in Diabetes Forecast that said girls tend to be more independent in their diabetes care, but boys had better control.I gotta vote for the better control.The obituaries of people in their 30's who have died and whose survivors suggest memorials to the diabetes association are usually female- that makes an impression on me.

When he was first diagnosed, I was reading a book of inspirational essays. One was by a nineteen year old who was blind from diabetes- our dr was saying we didn't even have to worry about control before puberty- I decided otherwise. I mean, what cost followiing that kind of advice? What cost independence ( which I full expect the kid to take from me when he is ready-he's already independent in many other ways)
New research about the teen brain and about male teens suggest their brains are still growing into their 20's.

When I started raising vegan kids, I knew they might someday eat hamburgers, I fully expected it, but I figured I'd give the kids a 10-15 year start on a health heart and arteries and, even if they became meat eaters, their comfort foods would be vegan dishes and they'd eat more good stuff than kids raised on McDonalds from birth.

I read that many people with diabetes suffer from depression. One psychologist calls it 'Diabetes overwhelmus'. Eventual, care may weigh upon him, but maybe 8 or 10 years later than upon those kids who have been expected to do most of their own care from an early age. Maybe, if he gets overwhelmed, it'll be later in life, due to the shorter period of the burden.
When he was diagnosed, they said a cure might be 10-15 years away. Still is, at least, but there's a chance that this need for control won't go on his whole life- the fewer years that he has to deal with it, I think the lesser chance of depression.

Our dr is very well-respected and useless. He leaves the patients' care to nurse practitioners who are sweet, but have IQ's 30-60 points below that of the doctor. They don't have intellectual curiosity, they don't make connections, they don't understand, when a lab test is obviously wrong that they not only have to rerun it( which they do when I insist, and I've been right when I do), but that there's a good chance that a second lab test of someone else that same day in the office is probably also wrong because they leave samples lying around unlabelled.

My son's dr pokes his head in once a year and offers no advice. As far as they are concerned, my son is doing better than their other patients- why would we need advice ( I'd love some, but our NP scarcely remembers who we are. When I used to call for advice for acute sicknesses she'd tell me to give him chicken soup and 7-up. I would've liked them to actually try to find out something about vegetarians with diabetes .

Clock watching is such an alien concept .
My first year of college, I went to the library at 8 am. One thing lead to another and each bibliography took me somewhere else, and before I knew it, the lights were dimming to tell us it was 2 am and the library was closing. I had really meant to go to class that day. I decided to live a more orderly, time-based life. I soon dropped my major- a scientific field and wandered into the soft stuff ( subjects that don't take a lot of thought). I lost something in that. I don't believe I have the right to take that potential away from my son and mire him in the mundane. My father and husband both had careers as military scientists. My son was obviously going the same way as early as the age of 3 ( when he had me read him a book on super conductivity and just absorbed it). He'll never be part of the military now, but there are horizons in computers that look obtainable to him.
I want him to have the same kind of shot at the world as had Edison and Carver and the Wrights. You don't do that by clock watching.
My husband is brilliant, but can't understand the concept of an outstanding check from the bank account. I've dealt with these kinds of minds all my life, I just have to learn to make everything work together-I'm not sure how to do that yet.

Follow Ups:

Re: diabetes, esp.type 1 (Archive.

Posted by Walt Stoll on November 04, 2003 at 06:41:59:

In Reply to: diabetes, esp.type 1 posted by Mindy on November 03, 2003 at 07:43:01:

Thanks, Mindy.

It does seem that the practicing physician is the last to know anything new.


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