Living without type 1. so how does this work?

My daughter is not in a honeymoon phase, if she ears the foods she has tested sensitive to her blood sugar skyrockets. Kim’s daughter has not needed insulin for over 2 years, any doctor will te you a honeymoon phase doesn’t last that long.

That was her A1C at the time of dx when I initially joined the site. Her current A1C is 5.4. Also my child is a growing 2 year old her body, A1C, target ranges, etc. are set a much different expectation than that of an adult according to her Endo. I will say once again for the people on here that are posting and clearly not reading the whole thread this is not starvation my daughter eats constantly and healthily, I listed the things we eat in this post, no child or adult would starve on this diet. As I’ve said already this is not the “cure” that everyone is hopeful for but it is a way to eat a diet (only determined by proper individual testing) that will allow you to live happily and healthily on far less insulin or no insulin in some cases and hopefully avoid the long term complications of diabetes. Nothing is for sure because we’ve only had 2 adults actually try it, they have had success but if people were less cynical and more pro active about their health that may help us get more data. I understand the resistance believe me I do but there comes a point in time when you’re doing all you can to manage your diabetes from a medical standpoint and if there are things YOU can do for yourself or a loved one that will make all of that hard work less of a burden and more rewarding why not do it. I agonized over whether to do this diet for my daughter and our family because it was a huge dietary change from what I was fed as a child (junk) but it has been a blessing in so many ways. If any of you have toddlers with T1D I’m sure you can appreciate wanting to make my daughters life a little less stressful by going from 6-8 injections to 1-2 a day, our days are filled with a lot less tears and heartache that’s for sure. I wish with every fiber of my being that this disease was mine and not my baby girls, if it were me I might have never looked any further than insulin but it is my job as a parent to be her voice, her advocate and her pancreas so I’m doing that in the best way I can. My daughter is not neglected, starved, under/overweight or in danger in anyway, in fact she is in the 90th percentile in her height, weight and she is extremely intelligent functioning at a 4 year old level at the age of 2. She is happy, playful and full of energy. Frankly from most of the private and forum messages I’ve received here I don’t know how productive it is for me to keep replying. I came here to share info and get info and support and people have been extremely nasty, that’s sad. I wish you all the best and will of course still love to have productive conversations if anyone here wants that.

MaddysMom, many of us are Type 1 adults here who have spent our lives following promising leads and believable research. We understand the hope you hold and continue to post caution to you because you sound as though you’ve bought into some dangerous hype. The idea of living “without insulin” is so misguided. Living beings need insulin. The diet you’re pursuing will be a healthy one for your daughter, no doubt, but it will not change her diabetes diagnosis or the progression of the disease. It will NOT undo the autoimmune response. It will NOT regenerate her pancreas. And the best researchers in the field will tell you that you’re barking up a rotten tree. We’re just concerned.

Thanks Melissa. Your concerns are misguided. Maybe I’m not being clear. If my daughter is 80 before her meal and then eats a meal of salmon, spinach and red potatoes and after her meal is 95 the only danger would be in me then administering insulin. If 1-2 hours later she is still in normal range why would I administer insulin? I’m not holding onto any hope or believing any hype I’m speaking from my experience. How can you “scientifically” prove (as everyone here seems to rely so heavily on) that what I’m saying is wrong? Nothing about my daughters lifestyle is unhealthy or dangerous to her. My daughter has NEVER been denied insulin by anyone. She takes her insulin, A1C, and Endo visits just like everyone else here does. Kim’s daughter was never denied insulin when she needed it, insulin is only reduced or stopped when it is not needed and advised by an Endo. To have people on here send me messages saying that my daughter is unhealthy, neglected and unloved and that child services should be called is sickening to me. It makes me wonder if this is the type of “support” my daughter will get growing up, I hope not.

Kims daughter didn’t have insulin for 2 years? Surely her body MUST be making some insulin then. Why doesn’t this person post here on this website. I don’t think tudiabetes has a single T1 member that has done this. If she wants to inform people about this diet/cure or whatever you call it, this website would be the place.

I’m trying to keep an open mind but somehow I dont see how anyone can go without insulin no matter what they are eating. Either they inject it or the body produces it.

You say people are misunderstanding this but really most people here think you are misunderstanding this. Give it another year or two and you’ll see.



Like this person https://forum.tudiabetes.org/topics/insulin-dependent-to-diet?id…



and this person…

Case in point. A blog from August 2009 where a girl had been on a paleo diet for some time and had not taken any insulin in 2 months.



Same girl with another blog post from April 2010 where despite her best efforts, her glucose continued to rise so she went back on insulin.



And also as you can see the original post website link and blog is gone or under construction!



I think they disappear because they are embarrassed that it didn’t work out.
I’m trying to keep an open mind so I’ll wait a couple years and see if you still have the same results as you have now.

https://forum.tudiabetes.org/topics/length-of-honeymoon-period

Here is a link to a previous discussion of this very subject. As you will see honeymoons can vary greatly. My son is at almost 2 years since diagnosis and we are told he is still making some of his own insulin based on his basal rate dosages. He also has what I call solar flares where we have to lower his basal rate for a few days/weeks when he must make a little more inulin.
I have been quietly watching Kim’s website/blog since his diagnosis to see if there is something to it. Do you know what has happened to them?

I am sorry if you meet hostility, please continue to report results in the future. We all want a way to cure this.I’m sorry if I can’t jump on the kineseology idea. Food allergies/sensitivities are a very difficult thing to diagnose.

It’s reasonable that you would want to wait and see how things go for those doing this. Believe me I have my doubts about what may or may not happen in the future and if this will continue. I guess the difference in opinion comes down to beliefs. I’m not completely convinced that science doesn’t have things wrong. If you believe the leaky gut theory allowing food/toxins etc to cross into the blood (which causes an auto immune response) attacking a part of the body whether it appear in the form of different cancers, diabetes, etc. (possibly each person is genetically weakened determining where it is attacked) with all of the new research and data coming out about the pancreas does continue creating beta cells but that the auto immune attack is killing them before they can be any use to the body is it so far off to say that if you can heal/close the leaky gut by removing the irritant (food senitivity, heavy metals, candida/bacteria) that the attack will stop and your body can then produce and utilize these new beta cells.

I’m not here trying to change anyone’s mind or challenge beliefs I simply was sharing corrected info in support of a personal friend. As far as Kim’s blog it was removed by mistake when she deleted the attached email account. She’s working on getting it back up. You have to understand how scary and draining it is for a mother to come on here and try to spread the word to people who are extremely resistant and some very nasty. It is really up to individuals to go look for this info. There are 15-20 of us with public blogs documenting progress.

Please excuse the big run on sentences bad grammar and spelling as I’m typing this on a tiny phone screen. :slight_smile:

good points! If there are any parents reading this or considering this DO NOT STOP GIVING YOUR CHILD INSULIN!! Please continue to test and administer insulin as prescribed by your Endo. My daughter is still taking insulin. Please FEED your child a well balanced healthy diet that he/she will thrive and grow on, we do not encourage a vegan, raw or paleo diet in our household. Please do not remove healthy, nourishing carbs from your child’s diet either!

And most importantly, please don’t get me wrong, I am forever grateful for the discovery and the use of insulin it allows my daughter to live but in my opinion this process (not just a diet but a science of finding the catalyst and removing it) is a path to a cure. It is not logical in my mind to say you can cure something that you don’t know the cause of therefore really testing my faith in the medical industry to begin with.

Maddysmom,



I am sorry you have experienced some animosity and/or lack of support here. Like Melissa said, we are only concerned because most of us who have had diabetes for many years have all been promised “a cure” for quite some time. When I was diagnosed 15 years ago a cure was “5 year out”. That time came and went and yet the illusive cure was still “5 years out”. And now here we sit in 2011 and the cure is still “5 years out”. I’ve now been alive with this disease longer than I have lived without this disease. Understanding those “empty promises”, when abnormal or uncommon methods are introduced to some of us, it is hard to immediately “jump on board” and believe.



However, that’s not to say I don’t believe it’s appropriate to push the envelope occasionally. I mean, I look up to folks like Bill Carlson who was the first type 1 to complete the Ironman triathlon race in 1983 (scientists thought he would die!). Even through the 1990s many endocrinologists did not advocate any sort of endurance exercise because of the potential risk of hypos (and because of the lack of clinically proven evidence that this was even safe).



I have never been a big subscriber to more homeopathic or holistic medicines, so trying to wrap my head around the idea that by touching some foods you’ve figured out what kind of food sensitivities your daughter has so that you can avoid them is a bit of a stretch for me. Understanding on the cellular level how the GI system works and absorbs nutrients to send to the rest of the body does not help me to warm up to the idea of the “leaky gut syndrome”. However, that’s not to say it’s not true or that you’re not having success with it. It’s just hard without some sort of scientific, fact-based, reproducible evidence for me to really get behind it.



It sounds like you are very committed to keeping your daughter safe (testing often, giving insulin when needed, etc). I do hope that you will stick around the community and continue to post your experiences as some of us are always interested in newer, outside-the-box thinking (keeping in mind that many of us will likely continue to be skeptical at best). Thank you for sharing with us and I look forward to hearing more about you and your daughter’s journey in combatting this life-long disease.

Thanks for your reply Michele. Some people have emailed me some not so nice things but you know what at this point I’m kind of glad that I got this out there because I think its been productive, I know I’ve learned some things.

I completely understand the kineseology resistance, I went in extremely skeptical. I have also tried some local kineseologists that were complete phonies and I hate that because they give the good ones a bad name. I’m going to do my best to get all the info I can together and try to get something concrete, it takes times as you all know.

I texted Kim last night, she didn’t know her blog was gone and told me that she deleted her gmail account which must have deleted the blog since they were affiliated? I’m not sure how that works. Her daughter is still not in need of insulin and still avoiding her sensitive foods list.

There are some other Moms doing this whom have blogs, some with success, some now after a long period are needing insulin again. I’ll check in as often as I can but new baby is coming in March so if you don’t see me for a while that is why. :slight_smile:

Thank you very very much! I will say that being skeptical can be a very good thing, like I said here earlier I don’t know where this will lead but who am I to not try. Your post brought tears to my eyes because what you’ve experienced with the waiting for a cure game is exactly what I fear for my own daughter. I can’t imagine what that must feel like for you. On the other hand I feel like the people that are letting you and all of us down are scientists, doctors and organizations. They are given so much money to find a cure but instead only create new and more expensive treatments. While that can be a great thing, its not a cure and I want a cure, at the very least a cause. I have lost a lot of faith in science and doctors in general after seeing and hearing some of the things I have. I have traveled to nearly every diabetes center in the U.S. talked to the best of the best only to come home empty handed with the implications that there is indeed a reason a cure won’t ever come and its not because they can’t find it. Kim and I have both contacted the JDRF to get their assistance in our findings and try to get things better documented and understand it all, they just hang up or say ‘we already know about it but most families will never try it, its to hard’. I can understand that, it is hard to change you’re entire lifestyle but diabetes is hard too, why not help us figure out a way to give people options?

When I was crying my eyes out in the hospital while my 12 month old baby was slipping in and out of consciousness the “diabetes specialist” said “don’t worry, she can still eat cake and ice cream…” WHAT?! I mean first off that was the last thing on my mind but if you want to talk about dangerous, sending parents home with that advice a 30 minute training on what diabetes is, managing it, taking blood samples, using glucagon and injecting your child with a syringe is dangerous to me.

Anyway, all of this is what led me to keep looking and trying new things, that I won’t ever stop doing as long as it is safe for my daughter I’ll be open to it.

For anyone wanting to do a food sensitivity test and not into the kinesiology idea there is a blood test called IgG Food panel test that you can do, we did both and they came back with virtually the same results. Also a candida/bacteria test can be done through your doctor or lab if that is something you think you may have an issue with. I’m pretty sure you’ll be surprised.

Don’t lose faith in doctors and science. Doctors are the reason we (this community) are alive today. In general, doctors aren’t robots trying to make a huge profit. Before they were doctors they were little children with dreams of a career that could help people.

I think it was the phrasing that bothered a few people. We all get bombarded with “Well, have you thought about NOT eating garbage to cure your diabetes?” type comments and tend to be a bit overly sensitive to diet=fixin’ type suggestions. :slight_smile:

Earlier in the thread I had mentioned a form of diabetes called Monogenetic Diabetes (MODY); now I haven’t read a whole lot on this version of diabetes but I do wonder if maybe this could be what the children who have reacted positively to the mentioned diet changes have? A lot of people with MODY still require insulin injections every now and again, are often mistakenly labeled type 1 (or 2) and can often control the disease with diet and exercise.

Just a thought.

It looks like they took it down.

Sheesh. Some people are just…not very nice.

When I was diagnosed with melanoma I was horrified to see all the snake-oil salesmen preying on cancer victims on-line. It was shocking. I learned which websites to trust, i.e. PubMed, and which sites to avoid like the plague, i.e. anything where a “doctor” was selling supplements.

I get that! I don’t believe I personally phrased anything that way, at least I hope not. Having a daughter that is most definitely a Type 1 diabetic I get more than annoyed with all of the “chinese” “natural” cures or people saying things like “she must eat a lot of sugar” or “she’ll grow out of it”. This is not that. This food elimination diet can only be designed on an individual basis after proper testing and identifying of trigger foods. If you look at my previous posts or the pdf on my blog www.maddyshope.blogspot.com you will see that (depending on what your beliefs are) this is common sense, its about stopping the auto immune reaction by finding what is triggering it in your body and healing the gut to prevent “leaking” into the blood. It is medically proven that food/toxins crossing into the blood stream cause an auto immune response/attack. When an Endo/Dr says “we don’t know what causes T1D but it could be environmental…” that includes food! Food is part of our environment. I believe it was cow’s milk that triggered my daughters diabetes.

My daughter is most definitely Type 1, she is not overweight, insulin resistant and she is only 2. She was 12 months at dx. She uses insulin daily like everyone else but doesn’t need much we eliminate the “trigger foods” she tested badly too. I believe that she hasn’t had the same results as some of the other kids doing this that are completely off of insulin because there is still something causing a reaction in her body therefore not allowing her gut to heal/close to stop the response. Until we pinpoint what that is via her testing she requires insulin, although only a small amount. That’s my theory anyway, based on what I’ve seen with these other kids but who knows I could be wrong and she will need insulin forever but from what I’ve seen she can eat red potatoes (not white), carrots, apples with no need for insulin but she eats one grape, anything with cow dairy and her blood sugar skyrockets (two trigger foods) so I don’t feel that its likely I’m wrong here.

What happens when you have a Leaky Gut Syndrome?

A leaky gut results in many problems that affect the whole body:

Large food particles can pass into the bloodstream - The immune system assumes these particles are dangerous foreign material and creates antibodies against them. This leads to the situation where large numbers of different foods set of an immune reaction every time they are eaten. These antibodies may also attack the bodies own cells that are structurally similar to the large food molecules. This leads to auto-immune disease.
http://www.ei-resource.org/illness-information/environmental-illnesses/leaky-gut-syndrome-(lgs)/

In that case my diet would consist of nips of lettuce and water. Meat (with no sauce), veggies, stevia/splenda (omg stevia), tofu, gourds, wheat, rice, cheese, etc tend to bring my blood sugar up. Certain times of the month bring my blood sugar up, impending colds, the fact that it is a Tuesday and overcast can bring up my blood sugar. :slight_smile: I’m pressed to think of one thing that doesn’t bring me up, and I’ve tried a lot of food in my 16+ years of type one!

What had caught my eye in my (brief) readings on the MODY for the children that this type of diet had worked on was “Absence of positive antibodies or other autoimmunity (e.g., thyroiditis) in patient and family”. Did they test for the antibodies that type ones carry (but type twos do not)?

Also, from the diabetes monitor:
“Might I have MODY?
You might have MODY if you have a strong history of diabetes in your family, and you developed diabetes before middle age, you are not overweight, and you are treated on meal planning alone, diabetes pills or on low doses of insulin (less than 0.5 units of insulin per Kg of body weight) more than 18 months after you were diagnosed with diabetes.

Testing isn’t usually done for MODY, so a lot of people are diagnosed at first as having type one if only because insurance companies don’t want to pay for the additional test. It’s not that I don’t necessarily believe that the method that was brought up here couldn’t work for a type one…it is more that I’ve been working with what effects my body and how in regards to food vs. insulin amounts and I have yet to find a food the minimally effects my blood sugar that isn’t plain old lettuce. The only time that I could have gotten away with eating like that was when I was still in my honeymoon period.

Though, as a side note, your recipes look absolutely delicious and I think I’ll be trying some at home. I’m all for healthy eating! :slight_smile:

We know that autoimmune T1 diabetes often occurs with other clusters of autoimmune conditions, which includes problems with foods like gluten. And it is known that the inflammation caused by these foods causes inflammation and elevated blood sugars. In fact, food allergies also cause inflammation reactions and elevated blood sugars.

So I believe you when you say your daughter is doing better with these foods eliminated. In fact, if your daughters has autoimmunity against these foods or allergies I would “expect” she would do better, have better blood sugars and require less insulin.

But the leap that you make is suggesting autoimmune diabetes is caused by these food issues and the autoimmune reaction can be “fixed” by removing those foods. Research has not shown a causal relationship. Dan Hurley discusses the correlation but he did not find anything suggesting a causal relationship.

You say you are being careful about your daughters insulin use and I think it is fine to remove foods from her diets that cause problems. I think you are doing a fine job. But as a parent with a child who has been diagnosed with T1, you know how desparate you are to help “cure” your daughter and other parents feel the same way. The concern is that some parents who may not be fully informed will see what you are saying and blindly remove the same foods from their child’s diet and stop insulin in the belief that it will “cure” their child. I know that is not what you are saying, but your words suggest that you believe it.

Okay… Here’s how it works. Regardless of the amount of carbs eaten, if a child is not getting her hourly basal rate of insulin either through Lantus or the pump, that child would die, and quickly. If disconnected from the pump accidentally, in the absence of any food or drink, we have seen numbers in the 400s after two and a half or three hours (which is the most time she has been accidentally disconnected; it happened twice in five years). She is on a pump so no Lantus which lasts 20 hours or more. Once a child has been diagnosed and is past the honeymoon stage, if basal insulin is not supplied by an external source (because they are not getting what they need since their beta cells have died), they will be in trouble fast. I believe, after about eight hours if on a pump, you would have an emergency situation and go into DKA. You have 24 hours plus another four or eight if you are on Lantus. No insulin equals death. With or without a no carb diet.

It does not work for one or two kis, if the child in question has Type 1 diabetes. It could work as long as they are in the honeymoon stage. There are some children who do experience long honeymoons, though it is very rare. You must supply the hourly basal needof insulin your body would give you if your beta cells were still functioning. Plain and simple. It is approximately .70 to 1 unit an hour for each 100 pounds of weight for most adults, I believe. If you are drinking nothing but water and you don’t get this basal need met, you will die. I don’t know why there is so much confusion about this issue.

I wanted to respond to your post because I know Kim personally and have witnessed what she has discovered. I actually just found this thread when I was searching for a recipe on her website and I need to respond. I have been a Type 1 Diabetic for 12 years and spend a lot of time counseling to Type 1 and 2 diabetics as well as creating meal plans. When I first heard what Kim was doing I was just a skeptical as everyone else here and bombarded her with questions, stating over again that I wouldn’t last 1 hour without insulin, how can this be possible for her daughter? She graciously invited me to begin attending their meetings (trust me, she is an excellent mother) and I got to know all of these young children that have Type 1 Diabetes who had gone from pump users to no insulin at all. This kept me up many sleepless nights in wonder of how it is possible. The difference between standard western medicine and Kim’s idea is she is getting to the root of the problem as it begins, instead of masking it with drugs. Over time, after needing all the evidence everyone else wanted, I really feel like 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. If they chose to live this way forever, they can have a relatively normal life. I’m 28 and recently married and my husband and I want to have children. I think everyday about how I need to prepare for this high risk pregnancy, and even worse, how life will be if my child gets Diabetes. I am very knowledgable about Diabetes and I would practice Kim’s plan on my children! The difference is, I had no choice when I got Diabetes. I started injections that day and suffered horrible control for many years. Who knows if I would have chosen to stick to such a diet in my teens, but I would bet that I would have. The difference is, families can have a choice. I was not given a choice. Please do not disregard this but take the time to research. Why is Diabetes so prevelant and getting worse? Why are more and more people getting Type 1? I know it is the genetically modified foods we eat. Toxins create disease. I used to read stories of poeple that reversed Type 1 by eating a plant based, organic, clean diet. It angered me that they would make such impossible claims! But now I’m a believer. But keep in mind, if you have had Diabetes for more than a year or two, your beta cell production is gone and this plan is impossible. The idea is to rest the pancreas while 20% of insulin production may be available (the honeymoon period) and let the body heal and rebuild itself, which it will do! But I know this could not work for me and I am on an insulin pump, continuous glucose monitor, and of course many glucose tests each day. But I guarantee if you tried the plan even at a later stage, you will notice much better clontrol with low glycemic increases and more energy. I have not talked to Kim in years and it would break my heart if she saw this thread and what people have accused her of. She was a mother that insisted on finding a cure. I’m reading the book right now of the family that first had their daughter use insulin. What if that family had not insisted there was more? Ok…I’m ready to face the firing squad. Feel free to contact me with questions or my personal story. I have run marathons, been a professional dancer and traveled the world with Type 1 so I’d be happy to lend support to anyone who needs it.