I like to add to this conservation … maybe I am totally off : I am a PWD for over 28 years …my A1C’s NOT always under 7 since the testing was done …I am living without complications , eat a relative high carb meal daily ( 160 gms ) , over 70 years of age , under 140 lbs , 5 feet 7…we are all soooo different …and lets’ give each other the space to be different !
We’ve tried. A study was in the process, over 40 families are currently doing this. Unfortunately the doctor (Baker in Arizona) passed away, he had all of the information and studies, I’m not sure who it went to. I understand skepticism, believe me I do! And I appreciate your thoughtful and rational reply here but you can’t help people who won’t take it. I have a newborn baby and a business to run I can only do so much. People have tried to get help from JDRF they stated that they already knew about it but that it was too hard for the average family to follow…dial tone. What more can be done? I’m not willing based on the resistance I’ve met to sacrifice any more of my time, money or efforts on people who don’t want it. Anyone who does can message me or read through this thread in its entirety, the info is here. The major culprit that was tested to be a problem for all the kids Baker worked with was grain and in most cases dairy and gluten went with that. Once grain was eliminated almost all of the kids reversed and began producing insulin on their own. I don’t know why you’d need an IRB to protect children from eating organic, whole, nutritious food that isn’t treated with chemicals/GMO. Grains and dairy are not good for any body really.
You’re amazing! 
Good for you, we should all be so lucky. The truth is that everyone should just do what works for them that is safe and under the care of an Endo, this lifestyle is just another option and options are a great, great thing.
MM, for the sake of all T1s, not just your baby, I hope you and others will continue to try to work through the medical community and secure scientific research. Email Bernstein. Tell him about Baker’s work. If you beat the drum loud enough, you will be heard; however, posting testimonials over the Internet is not going to get you credibility. Again, there is a right way to go about getting a study supported. There is a lot of money available to conduct credible T1 research. It won’t cost you anything.
As for the IRB, it is really a necessity these days when conducting studies with human subjects. Integrity of the study design, protection of the human subjects, and IRB oversight are often tied to funding. Unfortunately, abuses in the past (google Tuskegee Experiment) make IRB oversight a given requirement these days. However, researchers conducting the studies would set up all of that. Believe me, if your baby were involved in such a study, you would want IRB oversight.
You actually don’t need to consult an endo to find out how long a honeymoon lasts, it’s well documented in the literature. A quick scan of Frederick Allen’s documentation (1919, pre-insulin) of the diabetics he treated reveals that he treated children who could be kept alive on Allen’s starvation diet for 5 years (some may have lasted longer than that, that’s just what my quick scan revealed). In studies in adults, antibody-positive individuals could go free of insulin for up to 12 years.
Well, if you really think this is possible and working for your daughter, you shouldn’t be wasting your time on us, you should be talking to the research scientists at JDRF, DRI and ADA.
Banting was just a lowly country doctor when he started working on isolating insulin, but he proved it WORKED, and got a major pharmaceutical company to make it for all of us.
If you can demonstrate that your method works, then you need to get someone to help you write it up and submit it to the Endocrinology journals. You need measurements, documentation and FACTS. You need to do it in a scientific manner. Just SAYING it works isn’t good enough. You have to PROVE it. PLEASE do what it takes!!
Going almost 30 years with no real issues besides BS going haywire every now and then!
It doesn’t take any money to write up a scientific study and submit it to a journal. The only reason I suggested that you get someone to help you is that it is not intuitive to a non-scientist how to organize the data and present them.
If you or one of the other moms want to go to the library and read studies, and learn how they are organized and then write your own, then you can do that. No money at all. Just time, and a willingness to present your findings in ways that will have impact. You may spend a lot of time on your blogs, but they have no impact.
Dr. Bernstein, an engineer by training, found a way to control his BGs, and no one would listen to him, because he was trying the same way you’re trying – just telling people. So he went to medical school, started his own practice, and has become famous because he went about it the right way, by publishing. It has taken a lot of time, and a lot of work, but the medical field is waking up to his findings and more and more specialists and scientists are endorsing the low-carb way of eating that he originated. (He also was one of the first to advocate home BG metering).
I am NOT attacking you, but if you and your friends want credibility, you’re going to have to do a lot of work, and blogs just aren’t it.
It strikes me that you are doing a version of what many T2s do called “Eat to your Meter”. Although you do not have evidence that would constitute something that could be published in a scientific journal, you are in fact following the scientific method, which is simply the the application of logic to understand and/or ultimately solve a problem.
The OP talked of a cure and getting off insulin, I think this is the source of some of the hostility directed toward you. It is very clear from your posts that you are being responsible and are not really claiming a cure. As long as you are testing and responding appropriately to those tests, no one should have a problem with what you are doing. Your daughters decreased insulin usage is surely a good thing whether it ultimately leads to a “cure” or not.
As to what is going on, your theory that grain and dairy are causing inflammation, which is in turn causing problems with insulin metabolism, is just that, a theory, None of the evidence you have presented either proves or disproves cause and effect. The change in diet has had a positive effect but it is unknown exactly why this is happening.
As a parent, when diabetes strikes a child, you desparately want to do something. What really scares me about all this is that not people like MaddysMom. She is trying to take a well thought out and careful approach to things, carefully consulting her doctors. It is people who don’t have an endo, perhaps not much access to any medical care. They just go to a public library, search something on the internet. Perhaps they don’t have much understanding of diabetes, and they certainly don’t understand science and evidence. But their child has been struck by diabetes and they are willing to try anything to “cure” their child. When someone comes to a web site and reads:
“…this is a cure. Keep in mind, this is not an easy lifestyle! The diet is very rigid and would require a lot of home cooking. Yet the difference is, the children will not have to live their life being a slave to insulin injections.”
What do you think a desparate parent will do? And people do crazy stuff. I posted about some parents who tried to cure their child of diabetes through prayer earlier, and this sort of thing is rampant in the vegan community, here is an example of a vegan couple who killed their baby by not feeding her breast milk and instead a vegan diet, and another from 2005, and a case where luckily the child survived. I’m not accusing anyone here is these sorts of mistakes or deliberately encouraging such behavior, rather I am asking why would people believe this stuff? And then I think we all have a duty to examine our own statements and make sure that we don’t inadvertently contribute to similar behavior.
I come from a scientific background. I’ve learned that to figure out the truths in this world you need to develop evidence. Unfortunately in medicine, this can be very difficult. Take depression for example. If you give some depressed people some anti-depressents, they would all most likely get better and we might think they got better because of the anti-depressents. But in fact, most people recover from their depression anyway. So is it a mistake to conclude that anti-depressents work? Maybe not, but you can’t just look at a single case and make any conclusion about the effectiveness of anti-depressents. And such is the case with diabetes. We hear about single cases all the time. But in my view, these don’t mean squat. We need scientific evidence from carefully controlled intervention experiments. That is the only way to build the evidence that something works.
So are there foods which are associated with the onset of autoimmune T1? Sure, if you read Dan Hurley’s book “Diabetes Rising” he lists quite a few, milk, wheat, etc. All with pretty strong “associations.” Does this mean that these foods “cause” T1? No, that is not what “association” means. And if you can’t show these foods “cause” T1, then you have no basis for attempting an intervention experiment. So should these topics be studied? Sure. Is it possible that they will work? It is possible.
But should we suggest treating children with diets (with potentially harmful effects) for which there is no causal evidence? That is where I think we must not cross the line. We have a duty as a society to protect our children. These sorts of studies and intervention experiments should be done on consenting adults, not on kids and not in uncontrolled and careless ways.
Hi MaddysMom,
I was just wondering if your daughter has had a C-peptide test done and if so what were her levels?
I would be so thrilled to have a mom that worked so tirelessly to identify my trigger foods. Unfortunately, I have yet to find a single non-trigger food. Most mornings, plain old oxygen raises my blood sugar by 40-60 mg/dl. So even oxygen is a trigger food for me!
I don’t think they have reliably figured out a way to address the autoimmune aspect of T1D yet. That’s the holy grail. Personally, I’m putting my hope in things like the artificial pancreas project and smart insulins. I actually think smart insulins have the best hope (and they seem like they will be the most cost effective). The technology for the artificial pancreas project is there, but it’s going to be a long road to get approval from the FDA (and I’m not so sure I want to be so dependent on electronic devices).
Very well said. What scares me about these claims of using diets to “cure” T1D is that parents will try them in lieu of insulin, mainly out of desperation and failing to understand the severity of their child’s condition.
MaddysMom notes in one of her earlier posts that her daughter is using the Omnipod. If that’s the case, her daughter is getting basal insulin continuously. I know there are foods which I can eat where I don’t have to bolus (because my basal insulin in my pump will “cover” it adequately).
I think it’s totally fine to experiment with diet when you have T1D to find what foods cause BGs to rise. I know for me there are plenty of foods that impact my BGs more than others. And, in some cases, the foods that impact my BGs have changed over my almost 30 years of living with T1D. HOWEVER, a parent should NOT do this with a T1D child without being under the care of an endocrinologist and thinking that they are going to eliminate their child’s need for insulin. It’s just not possible.
First, if your daughter is on an Omnipod, I’m assuming she’s getting a constant basal insulin, correct? I know for me (T1D), there are plenty of foods which I can eat in small amounts that will not require a bolus, provided my basal rates are correct. Perhaps you are simply stumbling upon those foods that don’t require a bolus (???)
Given your daughter’s very young age of diagnosis, it is possible that she is MODY and not Type1. It is VERY COMMON for MODY to be mistaken as T1D. Only genetic testing will show if she is in fact MODY.
Finally, if your daughter is in fact a true T1D, she will always needs insulin to survive. It is possible that she is T1D and just going through a prolonged honeymoon period; that does happen sometimes, and some children can take years to fully complete their “honeymooning.” But if she is experiencing an autoimmune destruction of her beta cells, no diet is going to stop that process.
Also, I was diagnosed at 3 and I know that in the 2-3 years after my diagnosis, my insulin requirements varied widely. I would go through periods where it almost seemed like I didn’t need any insulin… I’ve heard this is not an uncommon experience for some young children with T1D.
I would really urge you to get a second opinion regarding your child’s diagnosis. Try and get tested for MODY because if that’s what your daughter has, she may be able to take an oral sulfonyrea and not require insulin or any restricted diet.
The label doesn’t really matter. What matters is paying close attention to what is going on and finding the best responses in terms of food and medication. MaddysMom seems to be doing an excellent job of figuring out her daughter’s diabetes and fine tuning her care, whatever type it is.
Wow,
Rant on…
There is a lot more patience here than I could ever have. I’ve read 13 pages, clicked on dead link after dead link, been told I’m close-minded, cynical, and whatever else, mostly because snake-oil salesmen can never clearly elucidate what exactly it is they are trying to sale. Absolutely pointless trying to have an intelligent conversation but I certainly do admire the Tudiabetes community for patiently entertaining the possibility.
For me, this borders on being the Best of the Internet. It started with a mysterious messiah with the life-changing hope of a “cure” that could not really be called a “cure”, with the prerequisite amount of paranoia and conspiracy theory.
Her daughter does not take insulin, she still does tests on occasion for the safety of her daughter even though she no longer has diabetes according to her Endo. There are VERY serious repercussions to claiming to have a cure, the government will come after you for making those types of claims which is why Kim's blog is worded carefully.
Classic.
From there, there’s an appropriate level of backpeddling, with an appropriate level of pseudo-science intermixed with scientific facts, to appear resonable in the face of “unreasonable” animosity.
Then, when the discussion dies and all the smoke clears, along comes another poster to rehash the same arguments in a suspiciously similar manner and writing style, while trading support and compliments for the original poster. Very appropriately cute and attractive avatars for both posters. I remember forums where this strategy was used and it was actually discovered that the two posters were, in fact, the same user.
How’s that for cynicsm?
Now, if I were back on the decidely less courteous gamer forums that I used to inhabit, I would probably have a few choice retorts to contribute. I’m pretty sure if this continues, we’ll have the classic reference to Nazis which will automatically push the iWin button for the opposite side.
Rant off…
Selling doesn’t always have to involve a tangible product, nor does it have to involve an exchange of money or goods.
Halla-freakin-looyah. Thank you for the interjection of common sense and basic logic into this discussion. People get so consumed by emotion and bias that they become unable to step back and see things for what they are.
Well, at this point, although there appear to be some squatters selling recipes and photography and other stuff, the core part of the livingwithouttype1 is “gone.” This was about a low glycemic, no-grain, no-dairy paleo diet. The web site is gone, the blog is gone. The claim that Kim is still around was made, maybe MaddysMom is still hanging with the group, but they are not public about things. And some of the most notable examples have turned out to not been cures. For instance Michelle went back on insulin in April 2010, and Jayne put her daughter back on insulin. And the poster who scraped the scab off this old wound claims to not have seen Kim in “years.”
So I think this whole thing has been beaten with a wet noodle into total submission.