Monday, April 19, 2010

I'm back on insulin and I quit the paleo diet.

I'm back...
Sorry everyone for the lack of blogging, but this is probably my last one.

I'm back on insulin and I quit the paleo diet.

My sugars started increasing to the 140s-150s in March and I went back on insulin. The diet really wasn't helping. However, I stayed on the paleo diet for a few days but I couldn't take it anymore and started having dairy, grains, and legumes again.

My opinion is that the diet is too restrictive and is very difficult to follow (100%). You almost have to be obsessed with the food that goes in your mouth. I am very happy to have the freedom of my food choices.

I think the diet did something to my body, probably just put me in a honeymoon phase somehow.

Right now I take 10 units lantus and my I:C ratio is 1:20. I'm seeing my endocrinologist tomorrow. I'm eating much more carbs now, about 150g/day. It's been almost 2 years since I've been diagnosed with type 1 diabetes. Insulin therapy is honestly not that bad, for me the most horrible part about diabetes is knowing that one day I will most likely suffer from the complications of nerve damage, eye damage, heart damage, kidney damage, etc.

After following the crazy yet logical paleo diet, I still believe diet may be one of the many factors involved in TID. I think I've got it in my genes, my paternal grandfather, his sister, and my maternal great great (great?) grandmother were all type 1 diabetics.

Take care everyone, apologies for getting everyone's hopes up and lack of correspondence. On the bright side, I'm graduating this June with my BA in Spanish :) And my sugars are still pretty well under control.

-Michelle

65 comments:

  1. Thanks for the update; I was just thinking of you yesterday. Conggratulations on your upcoming graduation!

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  2. Just curious, did you catch any cold or other disease about the time the sugars went up? Any stressful situation? Why didn't you try Metformin or something else before insulin? Glad to hear you got your BA. Don't feel bad about losing it, you can try again. Paleo is really to pretentious . You can try any Ketogenic Diet combination still. Be careful with the insulin and try to oust it again. Stick around. I emailed you about that other girl that was off insulin, does she blog? Keep in touch.

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  3. Hi Michelle,

    Your story has been inspiring for me. Don't give up on achieving your optimal health yet. I think anyone who has done paleo for any significant period of time > 6 months falls into recidivism at some point... IT IS SOOO HARD!! I totally feel your frustration.

    Type 1 has many autoimmune based layers. Have you read much into 'leaky gut' and how to reverse it? There are 5 components which will also reverse modern chronic conditions as you have experienced earlier. It takes 9-12 months for auto-antibodies to go away after the offending food/lifestyle/toxin is eliminated. Don't give up yet.
    (1) remove toxins (casein/dairy; gluten; lectins/legumes/peanut)
    (2) re-inoculate with good bacteria (probiotics) and fiber (prebiotics)
    (3) replace lost vitamins (vitamin D is critical; omega-3 fish oil to reduce autoimmunity and many other benefits; vitamin A E C B-vitamins, B5 B12), minerals (zinc, magnesium, chromium, selenium, iodine), good gut flora (acidophilus, bifida, etc)
    (4) repair the gut, our inner tube of life and primary center of the immune system
    (5) revitalize digestion to absorb fats and proteins (digestive enzymes if you have gas bloating burps floating poops; taurine, curcumin, etc)

    Takes time also for the beta-islet pancreatic cells and immune cells to fix the rest...

    Don't forget solid nutritious food -- bone broth soups, organic grassfed meat, organic veggies, etc. See the below for some vitamins and gut, thyroid and adrenal support to consider. I highly concur with all the points below from my extensive research.

    http://www.drjakefratkin.com/pdf/LeakyGutHandout.pdf

    GOOD LUCK -- you are in my thoughts and prayers!

    -G

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  4. Hi Michelle, I'm sorry to learn that you're not doing well. I hope you will reconsider your decision. You may find that adding dairy, grains and legumes back into your diet will have negative consequences (especially the latter two). On the bright side, the sort of worsened setback those foods tend to produce has helped a lot of people see just how damaging those foods are.

    You may have seen what I wrote in a comment on your blog on August 30: "If in the future you find that you have any relapse of symptoms, you may find a stricter approach necessary, as I, Lex Rooker, Geoffrey Purcell and other Paleo dieters have found. At that point you may wish to read Lex Rooker's journal and his other excellent posts at a couple of different forums easily found by googling his name. The work of Dr. Stephen Phinney and Dr. Jay Wortman is also worth checking out."

    You may also have seen what I wrote in my January 17 comment: "Remember how I said back in August that you may start experiencing some relapse of symptoms and may need to adopt a stricter approach? My own relapsing started occurring at close to this same point--around 6 months (though it was so mild at first that I didn't notice it--except in retrospect--until about 9 months and even then didn't think my diet could be optimized further until years later). .... I don't know whether it will apply to you, but I have so far found that I have had to cut my plant carbs down to near zero to optimize my health. Of course, this has meant that I had to greatly increase my healthy fat intake (mainly grass-fed suet and marrow, pasture-fed eggs and cod liver oil)."

    In the past you wrote: "The diet is still working great with great blood sugars AS LONG AS I keep my carbs under about 90g/day." If your recent carb levels have been that high, that could be part of the problem. 90g/day sounds high to me for someone with type 1 diabetes. There are many carb sensitive people (such as myself) with much less severe health problems than you who find they have to keep their carbs below 50g/day. Dr. Kurt Harris has written on this here: "1) Eliminate sugar and refined carbohydrates like white flour," Sunday, June282009 at 12:52AM, http://www.paleonu.com/panu-weblog/month/june-2009. (Note: because of your type 1 diabetes he might recommend ghee instead of the butter and other dairy products he recommends in this post, to minimize potential antigens, and I would suggest considering instead tallow, lard and marrow). I believe he'd be willing to help if you ask.

    As I mentioned, some time ago I also relapsed while following a slightly modified version of Dr. Cordain's approach and I believe the problem was not that the diet he delineated in The Paleo Diet is too strict, but that it is not strict enough for some people and may be too high in carbs and too low in saturated and monounsaturated animal fats for those who are especially sensitive to carbs. Since that book his position on saturated fats has evolved somewhat. I have found that all plant carbs produce negative symptoms for me, even raw fruits. So I get what little carbs I eat from mostly animal sources (liver, eggs, etc.) and a small amount of green veggies and I eat plentiful animal fat (about 80% of calories) instead of carbs. So it could be that all that is needed is a modification of your approach as well.

    I highly recommend checking into Dr. BG's advice too. Plus, I believe Dr. Cordain's team would be interested in your report of not doing well on their basic approach and might have additional advice for someone with a serious autoimmune disease like IDDM.

    You're right that a strict approach is not easy, but in my experience it has been worth it. There are plenty of sharp people who I'm confident would help you if you ask and there are also dietary support forums. Also feel free to email me with questions, if you like.

    Good luck,
    Paleo Phil

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  5. Michelle,

    Thank you so much for being so strong for so long! What you did was very, very difficult! I was so glad you conducted this experiment and let us all know about it, so I don't have to! I tried to go paleo but only lasted two weeks. It's not that the diet is hard. Living with the diet in this society is what's hard. As you said, you have to be obsessed.

    It is so hard to have a diagnosis like this and have to make it your number one hobby. There are more interesting things in life! I empathize with your malaise.

    Myself, I recently got dx'ed with celiac disease as well as having had T1 for the past 17 years, and I can say that I rebelled and didn't show the kind of determination that you did. Now I'm looking at an entire lifetime of having to be obsessed with food. Before all this stuff, I didn't live to eat; I ate to live. Diabetes automatically basically gives you an eating disorder even if you didn't have one before.

    But hey! Good luck to you! Congratulations on your graduation! And thank you once again for sharing all of this with us! It was very generous of you.

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  6. P.S. I neglected to mention that for folks who for whatever reason can't stick to a Paleo-type diet, Dr. Bernstein offers another approach that does allow a little bit of grains: Dr. Bernstein's Diabetes Solution, http://www.diabetes-book.com. I have relatives with Type 1 diabetes who report doing well with it.

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  7. Hi Michelle,

    The first place I heard about 100% complete recovery of Type 1 was from Robb Wolf, our nutri/fitness guru at Crossfit. HE IS WONDERFUL. His mother has 3 autoimmune diseases -- rheumatoid arithritis, lupus and celiac. He personal experiences and desires to expand our knowledge on crossfit, optimal health and diet are generous and kind, just like YOU.

    Give it looky!
    http://robbwolf.com/tag/type-1-diabetes/

    He is a biochem whiz and entered med school but then (thankfully) left and shares his knowledge w/us. *haa*

    We follow paleo 80/20 and that is still 100-million-times better than anything conventional medicine or the standard american diet (SAD) offers.

    You have come a LONG WAY haaawwwt GRRRLL. Congrats on your graduation -- no doubt you will continue to have many wonderful things and blessings in your amazing life.

    I have a friend Type 1 (after a traumtic car accident that crushed his pancreas which was excised out). He originally was on the SAD and 110 units of NPH and R insulins. he went semi-paleo (some beans+white rice but otherwise no oats, grains, gluten, dairy; eats high fat per Dr. Bernstein which he carries the book around like a bible). Now 70-something yr old 'Mr. Living Dangerously' is only 12 units combo N/R and no longer experiences:
    --erectile dysfunction which plaqued him 20+years
    --debilitating muscle cramps in neck and legs from high glucoses/ dehydration
    --tingling numbness in both hands (previously dull and no sensations)
    --memory loss

    He has amazing healing, recuperative powers I've seen infrequently and takes vitamin D, fish oil, magnesium, sublingual B12 and practices martial arts and routine daily strength training and cardio.

    -Grace

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  8. Hello Michelle,
    My son, Steven, who is now 16, was diagnosed with type 1 diabetes in February 2008. After trying it according to current medical wisdom for about a month, we decided there had to be a better way. We began to research and quickly came across Dr. Bernstein and his “Diabetes Solution.” My son became a patient of Dr. Bernstein in August 2008. I continued to research and have modified the Bernstein diet to exclude all dairy and all grains. We, meaning our entire family, eat strict paleo (minus the fruit). The results, for all of us, have been spectacular. Steven’s A1cs are below 5 and he is always in his “zone.” It seems like an entirely different disease now. In addition, the last blood draw we did in March shows that his GAD65 antibodies, which were high at diagnosis, are now negative. Hope lives. Did you ever check your antibody levels after you had eliminated dairy for some time? You mentioned in one of your last posts that you had gone back on dairy.
    Also, Steven eats 30 carbs a day, all in the form of low glycemic vegetables and nuts. I think limiting carbs to 30 a day, and only low glycemic vegetables and nuts is key. Paleo man didn’t have access to fruit year round, and he certainly didn’t have access to the fruits we have today, which have all been bred to increase their sugar content. I think maintaining A1cs below 5 is also key to preserving beta cell function and to provide an environment where beta cells could potentially regenerate (assuming all the other variables can be corrected). The research and writing of Dr. Cordain has been a big inspiration to me, as well as “Good Calories, Bad Calories” by Gary Taubes, and of course, “Nutrition and Physical Degeneration” by Weston Price. When you feel beaten down by the absurdity of the high carb, junk food world we live in, read these authors. Confirmation that you are on the right path is always inspirational.
    You mentioned in your last post that you fear the complications that you will most likely suffer from in the future. That does not have to be the case. You have full control over that. Read Dr. Bernstein’s book “Diabetes Solution,” for a morale boost. His life story, relentless research and dedication to his methodology are testament to the truth that type 1 diabetes can be a ticket to a healthier life than might have been lived as a non diabetic. No doubt living paleo can be challenging, but it is a life path. There is no other way! Everyday I learn something new, a new strategy or food that makes the game interesting.
    Please consider giving the experiment another go. I think that with A1cs in the upper 5s and with increasing blood sugars you clearly needed to go back on insulin. But that doesn’t have to be the end of the experiment. You have proved yourself to be a curious scientist. You are obviously too bright to just step back on the American Diabetes Association conveyor belt and submit to the standard American diet and the inevitable parade of complications. Eating high carbs will only serve to burn out the rest of your beta cells, and life with some beta cell function is always better than life with no beta cell function. If you eat high carbs chased by high insulin levels, you will destine yourself to a life on the blood sugar roller coaster. Go back to paleo with the insulin. You mentioned that life with insulin isn’t bad...well, life with less insulin is even better.
    I have enjoyed your posts and knowing I wasn’t the only one out there with hopes of regenerating beta cell function through nutrition. I still have that hope. It has become my passion. Please reconsider. Just pick a day and get back in the game.
    Kelly

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  9. Kelly,

    Thank you for sharing awesome experience.


    Michelle,

    I was rambling I wanted to mention one more thing...

    We all have a huge potential for recuperation, healing and recovery! I see this over and over, as your initial experience with Paleo. We appear to be able to tap into this from a variety of means -- hormonal health and its optimization keeps coming up for me and what I observe. When I let go of yoga, I get injured in sports and feel more anxious/stressed. That's one example that my life has recurring themes and also many others tell me. (And I wish I could put yoga into a PILL *haa!*)

    Good luck in tapping into your hidden strengths, super powers and potential!

    Warmly,
    Grace

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  10. Hello!
    The important thing is to feel good and I fully support your desicion, however, althought I also have given up the idea not to need any insulin,and think it at times it dangerous as you need it to build new cells which are damaged after fex years of not being diagnosed with fex celiak or other constant stress/damaging factors- I strongly recomend paying attention to eating the food that build up your body and find any problem areas.You will not experience ANY damage if you do this.I am now in much better form than I have ever been after 20 years as a type one, and everything is getting better.For me that involved pulling out wisdomteeth and cutting out milk egg and gluten.However I need oats so I am no longer no grain- they are full of zink and easy to make-and I sense a much better balance with this,maybe because other diets (ketogen) are very "acidic"?.. fruit, green lentils (but not red kidney or other beans or soy) and other veg in my daily meals.It is a very complicated condition and quite individual what helps.I wish you all luck and respect! Marianne

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  11. 「不可能」這個字詞,在聰明人的字典中是找不到的。.............................................

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  12. Hi Michelle....I've been researching the Paleo diet off and on for several months now.

    My daughter has had T1d for almost 5 years. At any rate, while I admit that I am intrigued, I just don't feel it's right for our family. Right now, we're enjoying her childhood -- complete with birthday parties, traditional holiday meals, and various treats along the way.

    She wears an insulin pump, has an A1c of 6.8% and is a very well adjusted, happy, child.

    Should she ever decide that SHE wants to try this diet, we'll support her. Until then, I'm the mom and I'm letting her live the most "normal" life she can.

    Anyway, the whole reason I wanted to leave a comment was to address Paleo Phil...

    The first statement in your comment was that you are sorry Michelle isn't doing well.

    Sir, Michelle clearly stated that she's happy to have regained more freedom in her food choices AND she's about to graduate from college.

    That doesn't sound like a young woman who isn't "doing well".

    Keep up the good work, Michelle. And...if you ever decide to blog again, please leave me a comment or get in touch so I can find you.

    I think you're both "well" and awesome :)

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  13. 當一個人內心能容納兩樣相互衝突的東西,這個人便開始變得有價值了。............................................................

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  14. 來看你了~心在、愛在、牽掛在,幸福才會繁衍不息^^..................................................

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  15. 人生的「三部曲」應該是無愧的昨天,充實的今天,與充滿希望的明天。..................................................

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  16. Michelle,

    I have been a type I diabetic for 11 years now, and am currently 27 years old. I just stumbled across your blog and wanted to get an update on your decision to quit paleo. Is everything still under control? I am always trying to find the best possible ways to manage my disease and want to hear about how your trials have progressed.
    I also wanted a share an interesting website I ran across which attempts to explain the causes of Type I diabetes.
    http://www.diabetesexplained.com/causes-of-diabetes-type-1.html
    Thanks and I hope to hear more from you

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  17. 堅持是為著某種目的或目標,而持續不斷朝向既定方向努力的一種意念。..................................................

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  18. Michelle,

    I'm a 37 year old woman who has been diabetic since I was 4 years old
    I just found your story as I was researching the paleo diet. I wasn't researching the diet for a cure for diabetes. I was looking for good nutrition
    Info because I will be starting Krav Maga classes this week- with the intention of getting a black belt. I was looking to get guidance about what I should eat given I will be introducing this new activity. I know quite a bit about nutrition but Im always willing to learn-new information. Then I can devide to leave it or try it. BTW- paleo is interesting info but I will be leaving it. I am aware the obsticle to getting my black belt will not be my diabetes. It is the fact I have the coordination of big bird that will make getting that black belt a challenge.

    I read your blog about your positive effects with paleo. My heart sank because I knew what was to come. I have no doubt a cure (not control through diet/exercise/insulin) is close. Ive been told so since I was 4. At times didn't believe in or- or just got so used to life- I forgot about the concept of a cure. Looking back- I think I forgot about the whole cure thing because I was LIVING with the disease. It's hard, consistent work. But like everything we try hard for- we have out struggles and our success. Just like graduation- one of many successes you may bask in. I want to validate that is hard as he'll sometimes. But victories are sweet-- ironically so much sweeter for someone with diabetes. I'm no genius. Diabetes is controlled with a medical understanding and technology that did not exsist 34 years ago. I've accomplished more in my life time than most people AND I live the dream Ive had since I crossed my highschool graduation stage 20 years ago. I make a difference. While it's nice to brag :) my purpose is to encourage you. I hope you don't perceive limit: only obstacles. And you have had significant practice at a young age with obstacle. Look back only to gloat over the fact that you took the obstacle out. You fought. You win. You get to fight and win another day. I don't quite know how to leave youy info should you ever want to chat. I've heard it said that it is fascinating to hear 2 T1Ds have a conversation because it sounds like we have our own language. It's probably true. I'll watch to see if you respond. Eitherway- my prayers are with you.
    Elena- Texas

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  19. Insulin is not the enemy! Live well Michelle. You have a wonderful, rich life ahead of you!!

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  22. Hi Michelle...

    I don't know if you still get these messages or not.

    I was wondering if you're still part of the Diabetes Online Community.

    I'd love to connect if you have another blog somewhere.

    candyheartsblog@gmail.com

    Hope you're continuing to do well!

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  23. I just found your blog and I'm sorry to hear that you don't think you'll be posting much anymore. I've been type 1 for 11 years now (and counting... Dx at 16) and I've stopped holding my breath waiting for a cure. However, Paleo has instilled a new sense of health and well being in me that I think it's worth the good fight, as they say. Just because you are type 1 doesn't mean you will have complications. Exercise and eat healthy. Take care of yourself. Do things you love. The constant vigilance never goes away and that's one thing that really sucks about D. But you can do things to make it easier. As time passes you will need more insulin but for me with Paleo I need less (lantus 8units am & 7 units pm) My carb ratio is 1:15.
    I'm also part of a volunteer organization that you might be interested in www.ayudainc.net. Check it out! I have a blog too but I haven't written in awhile either... http://pancreaticallychallenged.blogspot.com/

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  24. I hope you are doing well, Michelle. I too was discouraged after trying to heal myself with diet. I tried the raw vegan diet for 6 months.
    My blog at http://healingtype1diabetes.typepad.com kind of follows my journey. Then I quit the diet and quit blogging for awhile. I am now eating primal (salads, grass-fed meat, veggies) but no longer expecting a cure. I am just expecting it to lower my insulin needs, which it has so far.

    I wanted to respond to your comment about complications - you don't have to have any. A guy recently got an award for living 85 years with Type 1 without complications. A lady came to talk at our pump support group meeting and she has lived 57 years with it. She says "You will die with diabetes, but you don't have to die from diabetes." If your blood sugars are good, you can be healthy into old age.
    I hope someday you blog again and let us know how you are doing.
    Karen

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  25. does this diet work for people who have had the disease for many years?

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  29. Michelle,
    U R an idiot. But it was your decision to lose your sight or your legs...

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  30. Let me get this straight... You weren't able to make a full commitment to the diet, and that's the diet's fault? Sorry, but that's your own choice if you would rather eat pizza and take insulin than a long and healthy life. Your post is dishonest, making it look like the diet is what made you take insulin, and discourages others who are stronger than you and would be able to commit to this diet. I think you should take it down.

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  33. Hi Michelle,

    I don't know whether you get your messages from this blog...but I'm posting just in case. I came across your blog some time back, and have often wondered how you were going with the Paleo/T1 diabetes combo. I believe you were on the right track. Please don't be apologetic for trying to spread 'hope'. And please don't be disheartened by the negative stuff that can sometimes go with T1 diabetes. Like you, I chose to do this without insulin or any type of medication/drug. My diet wasn't too bad, but I did remove bread and any refined flour products. However, I was much older when diagnosed, and already had complications such as nerve damage, eye damage, and kidney damage. But I have since reversed these. I have to admit there's been days where I think it's 'too hard', but that's only because I'm human and coping with a chronic condition. So just stay positive and hopeful. For the record, I was diagnosed T1 about 2 1/2 years ago, and that's how long I've been managing without insulin.

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  35. Why don't you follow Diabetes Miracle Cure. It worked for me and I believe it will work for you as well. Do take good care of your health.

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