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Type 1 Diabetes: Update And PROGRESS!!

45 Comments

Just got this update from Joanne aka “MomOFType1″:

Robb –

Just checking in to let you know our little girl is still going strong! We visited with the new endo on Friday. He reviewed her last few weeks of blood sugar readings from her glucose meter on his computer (very cool how he jacked it in with a USB connection. I need that cable and software!).

He saw that she was almost completely in optimal range (70-140) with only a couple of outliers (a couple lower, a couple higher) and a mean of 96. He concurs that she needs NO insulin at this time. I was happy to have a Doc say that to me!

He did a blood draw in order to do the 4 antibody tests that the first doc did not do. He wants her back in two months but will call us when the results of the tests are back from the lab.

I don’t think the lab results will change anything we are doing, but it will be nice to know a little more about what we are dealing with here.

Thanks for the support everyone! Most regular people think grains and dairy are a MUST, especially where young kids are concerned. I know I am considered somewhat of a heretic in many circles.

-Mom

First, a HUGE thank-you to Joanne for sharing these experiences. All of this would just be theory if we did not have folks share what they are trying and what the results are.

Under ideal circumstances Joanne’s daughter shows no antibodies in the followup blood work. This would mean the immune system has really stepped down it’s attack on the pancreas and her daughter may have dodged a disease she would likely have contended with for life. Short of this, they have found a management strategy that keeps her numbers within normal values. To some degree the long term management is the same: gluten free, dairy free, low-ish carb paleo diet.  This may seem an austere solution to some people but I think most folks who have wrestled with the complications inherent in this disease would argue to the contrary.

I’m sorry if I beat this into the dirt, but I’ve just got to point a few things out here:

1- This REVERSAL of a life-threatening autoimmune disease is being mediated by a focus on food quality (paleo).

2-For the folks for whom the paleo diet does not reverse their condition (due likely to the complete destruction of ALL pancreatic beta cells) it does confer the BEST blood sugar control and best insulin management strategy of anything they have tried. This is likely due to the effects grains have on insulin signaling via leptin.

3-We can not proportion crap foods in any way and see the results reported above. This is trying to marry food to numerology.

4-The same mechanisms which underlie the reversal of Type 1 diabetes underlie ALL autoimmune disease. In the case of these other autoimmune conditions however, we do not see the confounding issue of pancreatic dysfunction. If we can just get folks to try a paleo diet for about a month they typically see a remarkable improvement in symptoms.

Immune attack of Pancreatic Beta Cells

Immune attack of Pancreatic Beta Cells

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  1. The Godfather of Fit
    October 20, 2009 at 12:57 am

    Hey Robb,

    I have a similar story going on right now with an older (not that much older, I would say late 40’s early 50’s) who is participating in our Paleo Challenge as a Type 1. I have asked him to track his insulin usage and so far he is seeing some pretty substantial initial feedback to support the same story. I will report more at the end when we get his blood panels back, but so far we are talking about a 30-40% decrease in daily insulin dosing… I know that you don’t NEED any more fodder, but I will have it all for you to pick apart anyway.

    The Godfather of Fitness

    • robbwolf
      October 21, 2009 at 8:30 pm

      GodFather!
      Never enough info on this please do send it in as you get it.

  2. Alex
    October 20, 2009 at 3:21 am

    Congratulations! Whenever I tell people about this “paleo” business, I tell them about these kind of stories. (We should write a book “Chicken Soup for the Paleo Follower’s Soul”). Most people just kind of write these stories off. I’d guess it’s because they’re scared of altering their lifestyles to advance their health – people fear change. I myself am getting closer with compliance – just have to cut ties with the cheese in the morning omelet. But I digress. Awesome work on changing your life, and thank you for being an inspiration for all of us.

    Thanks for sharing Rob.

  3. EricG
    October 20, 2009 at 12:03 pm

    I love all of the type 1 stuff that you have posted lately, being a type 1 myself it is very encouraging to hear success stories and some approaches that work that does not include pumping more meds into the body. Now I just need to put this all into motion and shock my Drs!

    Thanks for the great work Rob, and the same for all those that have prompted a response and shared their wonderful stories.

  4. Mark
    October 20, 2009 at 1:40 pm

    Hey Robb. Quick question here on oatmeal. I know it is a staple of the bodybuilding world and when working with that group, do you think gluten free oatmeal would be ok? By the way, I don’t intend to translate this into ‘all gluten free items are good for you. I know grains have all sorts of bad stuff in them but I’m just trying to find an acceptable alternative for more carbs if I ever try to convert a bodybuilder to Paleo (outside of potatoes/yams or rice because I know some won’t eat those in the morning because of the GL and excess fruit is out because of the fructose). I know it’s seen as heresy by some, but some people just want to look good and don’t care what their Fran time is. If we can find a way to convert the bodybuilding crowd, I think that would be a huge win. Thanks

    • robbwolf
      October 21, 2009 at 8:23 pm

      Mark-
      There are no “gluten free oatmeals”. The protein in oatmeal is slightly different from that in wheat, same basic reaction. I cannot see the Yam/sweet potato being an issue vs oatmeal. Like always I;d ask them to do it for a month and see if they prefer the results. they will tend to retain less water without the grains…certainly of benefit for an aesthetics oriented individual.

  5. Pat M
    October 20, 2009 at 2:47 pm

    Robb,

    Keep this up! Your advice is making a huge difference. Sure helping someone qualify for the CF games is cool, but helping to potentially saving a little girl from a lifelong disease, in which the best case scenario is daily injections, the worse is death, is something to be very proud of.

  6. Justin C
    October 21, 2009 at 7:56 am

    Robb,

    You’ll love this piece..Leading anthropologist suggests Usain Bolt would’ve been outrun by our ancestors
    http://www.telegraph.co.uk/science/science-news/6372432/Usain-Bolt-would-have-been-outrun-by-our-ancestors-claims-anthropologist.html

    • robbwolf
      October 21, 2009 at 8:17 pm

      Justin-
      I’ve had a few folks forward that to me…good stuff!

    • robbwolf
      October 21, 2009 at 8:17 pm

      Dominic-
      Well…this is the same damn problem that has arisen for thousands of people who grab “Enter The Zone” and dig in. Nowhere is it described that one will need to dramatically increase fat to maintain normal metabolic functions once one has reached an acceptable level of leanness. One line out of “mastering the Zone” mentions this need by hard training individuals. She might be a bit over trained in addition to under-fed.

  7. Cole
    October 21, 2009 at 10:20 pm

    Thanks Robb for all the Type 1 info on diet and training. I’m not a diabetic myself but my brother, uncle, and 2 first cousins are. I got my brother to do basically a paleo diet for 5 days and it was 5 days of no insulin and blood sugars in the ‘good’ range. This is after about 20 years of Type 1 diabetes. He has recently agreed to be my guinea pig in exercise programming from the ideas you given on here. Thanks again!

  8. Mark
    October 22, 2009 at 2:48 pm

    Hey Robb. Just thought I’d tell you this personal story in support of Paleo.

    So after reading the post by Mat, I decided to go Paleo on October 11. I’ve tried Paleo before but usually caved with dairy or had a cheat meal (wheat) on the weekend. This time around though I’ve been strict no wheat and no dairy. I don’t know what it is (maybe the daily tbsp of fish oil is helping too) but I can wear my wedding ring again! Before, whenever I had it on for more than a couple of hours, I’d get a reaction on my finger that looked similar to what you get when you touch poison ivy. My wife used to say that I was just allergic to marriage. So a couple of days ago, in an effort to show that Paleo helps everything, I put my ring back on and I haven’t had to take it off since! No reaction and I can even sleep with it on, never could do that before. It’s not the low carbs either because I slammed down a bunch of sweet potatoes the other day and nothing changed! Just wanted to pass this along, thanks Robb!

    • robbwolf
      October 22, 2009 at 8:51 pm

      Mark-
      Teh reduction in inflammation and allergies on a paleo diet is nothing short of amazing. Contact dermatitis (like your ring example) is commonly avoided once one removes grains, and dairy. You will likely find you can tolerate a couple meals here and there with either corn, rice or dairy. Wheat however is something that will screw up the works, even at remarkably low dosage.

  9. Joey
    October 22, 2009 at 6:45 pm

    Hi Robb,

    I am a type 1 diabetic, age 30. I have had diabetes since I was 11 years old. My husband and I started doing crossfit & eating paleo just over 6 months ago and we are just hooked, feeling better than we have ever felt in our lives. I only wish I knew about paleo when I was 11. But, since eating paleo, I have seen an enormous change in how easy it is to control my blood sugar. In previous years, I always had what I thought was a decent AIC (in the 6’s). My sugar often peaked after meals, but was so good at testing my sugars that it never stayed high for long. I now realize that is no need to deal with those kind of glucose fluctuations. I am on the insulin pump, and am taking less insulin right now than I ever have. I am even having some lows and may need to decrease my basal further.

    My husband and I so desperately want our friends & family to know about this healthy way of eating, and slowly they are gaining more interest, but it is definitely a challenge trying to get people to make the leap & even try it for a month. I was at the hospital this week with my dad (a random fainting spell possibly caused by dehydration), and they brought him a snack of chocolate pudding and graham crackers. I was appalled. Then, they brought him lunch which consisted of a baked pasta (there may have been some meat in the sauce), a huge, dense roll, a lemon bar, a tiny orange, and about 5 florets of broccoli. I wanted to scream.

    This is one of those life-changing things where once you try it, you feel the difference so significantly (and I get to see it directly with my blood sugars too), that it makes it easy to stay on. It is in no way a fad diet, it’s a healthy way of life. My husband turned me on to your blog, and I love it. I forwarded this most recent post to my family to try and share some more good news about eating right. Some people forward jokes and funny pictures… I forward this :) So, thank you!

    • robbwolf
      October 22, 2009 at 7:50 pm

      Joey-
      Much appreciate the information! Keep me posted on how things progress for you.

  10. Julianne
    October 22, 2009 at 11:06 pm

    Marks post just reminded me of another issue that has virtually disappeared since adding Paleo to the Zone. I have had Dyshidrotic Eczema or Pompholyx on my hands and feet for about 20years. It was a lot less on the Zone diet with fish oil. But since doing the paleo eating I haven’t had my usual spring breakouts (tends to be a big seasonal issue). Just a few tiny blisters, my 6 or so, but the wierd thing is – no itch in them.

    • robbwolf
      October 26, 2009 at 1:43 pm

      Julianne-
      This is pretty typical. Even small amounts of certain foods (mainly wheat, rye, oats, barley) can keep eczema going.

  11. Tim
    October 23, 2009 at 1:24 pm

    Are there evidence that dairy by itself can cause these autoimmune problems? I suspect that grains can damage the gut so that we more easily get autoimmune reactions from for instance dairy. But is it beyond doubt that dairy with a perfect gut still can cause problems?

    • robbwolf
      October 26, 2009 at 1:41 pm

      Tim-
      Teh research is pretty compelling, but there are no guarantees with any of this stuff. Eating grains and dairy are not guarantees of developing autoimmunity, but they do appear to be the precipitating issues. if our dairy were grassfed I think the autoimmune issue would be less.

  12. Emma Julings
    January 14, 2010 at 10:24 am

    Hi Robb,

    Just wanted to say ‘thanks’ for all your interesting posts about type 1 diabetes on your site. I am T.1, for the last 26yrs (since I was 7) and have been on the Dr. Bernstein diet for about 5 yrs… bloodsugars are way better than they used to be – however I often get hungry and I have also noticed when I eat dairy I have a hot flush!! I have been considering cutting out dairy for a while, however people convince you its a food group you ‘need’. This month (January) I have been doing my yearly detox, no dairy and no caffeine – after seeing the interesting posts on here I am willing to give it a go long term. I am hoping for improved control, loss of a rumbly stomach (!) less cravings…

    Quick thing on exercise, I used to practice karate and it gave me the opportunity to do bloodsugar checks throughout the 2 hourly practices. From this I was able to work out that I need fast acting insulin before I do any exercise. However, if my sugar levels were too high to start with there was no point even starting with the training (and having insulin) as the sugarlevel would just continue to rise.
    Rather than train in karate, I now run (or use my cycle machine if the weather is bad) I still have the insulin before I start to run. Then after 40 minutes of this I need 1 glucose, and then every 20 minutes after than I have another glucose. If I start off by running too fast, my bloodsugar starts to rise and I have to stop. If I start off at my slow (snails pace!) by the 15 minute mark I am into my stride. I find that running in the morning, b4 breakfast is best. After my run, I have more insulin to cover my b/fast carbs (low anyway) If I havent run for more than a week (holiday/illness etc) I know my body will react badly… as in my sugars will rise faster than normal. I usually run slowly and only for 20 minutes. Similarly, if I have been running for a week or two, my insulin requirements will start to drop – yay!

    Thanks again!
    Emma

  13. Frank Polack
    January 22, 2010 at 11:01 am

    My 14y.o. son was diagnosed Type 1 in Oct 09. My sister-in-law has been promoting paleo to me because of my Type2 and I’ve been reading as much as I can on this subject. As my son is now afflicted, and he is a huge cereal and milk fan, we are both going to try paleo over the next month and see how it goes.

    I’ve noticed several Type1s post that they have had insulin intake. I’m curious as to how you identify that. For example, my son takes a nightly dose of Lantus (slow acting) and then takes fast (Humalog) at each meal, taking addl if a correction is needed. He is already on the low side, typically measuring around 90 before each meal. How would he know that the paleo is resulting in needing less insulin? Because he’ll get more lows?

    I know he’d be taking less insulin by virtue of the diet having less carbs than he eats today. Just curious what Type1s on the Paleo are feeling, and how they adjust.

    • Robb Wolf
      January 22, 2010 at 4:11 pm

      Frank-
      In the case of a NEW type 1 we have the potential of reversing the type 1 during the “honeymoon phase”. the pancreas is not quite blown out and has recovered in some folks with a paleo diet. Short of that folks tend to need less insulin overall and have less severe highs and lows…but exercise selection and intensity can dramatically alter this. Read all fo the posts and comments on this…use the search function and let me know what you folks are up to.

  14. Frank Polack
    January 22, 2010 at 11:03 am

    oops. previous post meant to say
    “I’ve noticed several Type1s post that they have had LOWER insulin intake.”

  15. Ashley Tainton
    February 24, 2010 at 10:27 pm

    Interesting concept reversing type 1 in the honeymoon phase. I doubt ANY Endocrinologist would suggest that eating paleo would do so. As far as eating less carbs, it’s not rocket science that if you eat less carbs then you require less insulin – insulin is the key to getting carbs into your muscle. Less carbs less insulin. And Joey, HBA1c in the 6’s is good. Much lower than this you run the risk of hypos.
    I eat 250grams of carbs everyday, have low % body fat and my A1c has never been over 7 – and l feel great
    So if paleo is right, shouldn’t l be getting different outcomes, and hey, could have been cured?!

    • Robb Wolf
      February 25, 2010 at 12:34 pm

      Ashley-
      We have seen about 20 successful “recoveries” out of the honeymoon phase. Evena person who was Type 1 for 15 years. THAT was unexpected.

      When folsk adopt this way of eating we see a1c’s in the 4.5-5 range.

  16. Cheryl M
    February 25, 2010 at 4:22 pm

    @Ashley – an HbA1c of 7 equals a mean BG of 172. HbA1C of 4.5-5 equals mean BG of 83 (4.5) – 101 (5). This is what Rob means by reversal. A 7 is still high. I understand concern about lows, but this is where really diligent and detailed food logs, exercise logs and recording of long acting and quick insulin will tell you how to eat and how to lower your insulin requirements. If you’re interested in hearing how women do it who are endurance athletes and type 1 – check out http://www.teamwild.org. I’m participating again this year. or email me directly if you have Qs. I’m not taking insulin, so i’m only providing info, not advice.

  17. JanieG
    March 25, 2010 at 3:49 am

    My daughter, who is 9, was diagnosed with type 1 diabetes at 5. For the first few years we listened to Dr’s orders and let her eat what she liked. After her being on a rollercoaster ride- mostly from high to higher- I researched on the internet a better option, which is exactly what you have described as a paleo diet. Nice that it has a name and that there are others out there. She is still on insulin but instead of 20 units a day she’s down to around 10. I have been reading about vitamin supplements being of help lately and we began magnesium and potassium, among other supplements a few days ago. I’ll never give up on the belief that she can one day live insulin free. Thank-you for this website.

    • Robb Wolf
      March 25, 2010 at 8:10 am

      Janie-
      Thanks for the kind words. Keep tinkering, it really makes a difference for the Type 1’s. Keep me posted.

  18. JanieG
    April 6, 2010 at 4:41 am

    Update:my daughter has gone down to needing 7-8 units of insulin per day. We started on the magnesium supplements about a week ago, and we try to either ride bicycles, walk, or play basketball each day for about an hour. All three of these lower her blood sugar. A trip to her favorite park always lowers her blood sugar too, we joke about living there. On both the day we got her a beagle mix a few years ago, and this past Good Friday when we she got a baby rabbit, she had perfect blood sugar the whole day(with no additional insulin besides her normal basal rate)
    So in addition to eating the right foods, avoiding the wrong ones, and taking vitamin and mineral supplements, happiness plays a part too.

  19. Crystal
    May 10, 2010 at 10:09 am

    Okay, maybe I’m a slow learner, or stubborn – both could be accurate descriptions … I’ve had Type 1 since age 4, and I’ll be 29 in July. My A1c has been a consistent 8 for I don’t know how long. My younger brother is also a Type 1 (for almost as long) and I fought his advice for 5-6 years to get on the insulin pump. Since I’m not getting any younger and clearly cannot improve control on my own, I started on the pump in January. I’m waiting on lab results for my current A1c as I type this.

    After spending the weekend visiting my brother and his wife and seeing how he eats, how good he feels and how he has transformed his lifestyle, fitness level and body, I’m finally convinced me that I should give this Paleo thing a go. He directed me to your blog several months ago (back to that stubborn thing again), and after reading all these comments, I’ll give it a run for at least 1 month. Since most everything I’ve already eaten today is on the “absolutely not” list (oatmeal, corn, etc.), my true official start day will be tomorrow. I’m excited about it and look forward to seeing what it does for me. I hope to have a similar success story as many others who have posted here. Thanks for all the great information, Robb.

    • Robb Wolf
      May 12, 2010 at 6:30 pm

      Crystal-
      This stuff works, just give it a shot. keep us posted.

  20. Brad
    July 9, 2010 at 7:00 am

    I had a problem with reoccurring alopecia areata and adult acne. It took a high-dose cycle of oral steroids and injected steroids (so much fun) to slow the alopecia areata, but one can’t swallow those hammers for too long. Now steroid free… Paleo diet put both in remission (for lack of a better word). Robb is my paleo-hero. To travel back in time and live in his cave would be sweet. I’m talking in a homo hablis way, not a homo-homo way.

  21. Robert Walcott
    July 22, 2011 at 1:56 am

    Hi Robb,
    Love the website. I’ve been type 1 for nearly 18 years now. I started to try the paleo diet many years ago and my doctor said it was a stupid thing to do as you need the carbs. I took his advice and continued eating the recommend ‘healthy diet’ of starchy food etc. My sugars have always been up and down. I now have alopecia universals too which is also autoimmune. I am going to start the paleo diet again even though my doctor disapproves. Hopefully it will help with both my control and perhaps hair regrowth. When on the diet what do you recommend to have ready to eat when hypos occur? As my doctor always suggests something fast acting followed by some carbs.

    Anyway, I’ll give it a go as it seems to gave helped a lot of people in this forum.

    Thanks
    Robert

    • Robb Wolf
      July 22, 2011 at 7:45 am

      Robert-
      grape juice…anything that is non-grain. Ideally however the hypos are not severe and much more rare. Keep us posted,

  22. Misty
    July 7, 2012 at 5:22 pm

    I have been Type 1 diabetic for 30 years. I have had two boys and have packed on the pounds. I am up to 196 and I am 5’6″. I feel so heavy, tired, and unhealthy. I am very active and have always struggled with my weight. I have the hardest time losing weight no matter what I do. Isn’t it bad for Type 1 diabetics to go into ketoacidosis? I may be misunderstanding…..

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