Diet confusion

Conflicting diet/nutrition information is giving me food anxiety. I've read books and internet articles, talked to my doctors, talked to a dietitian, and I just don't know what to believe anymore!

Some background:
I was diagnosed about a year ago, at age 26, with a normal A1C but two failed OGTT's and 3 diabetes autoantibodies. I started taking a tiny amount of Lantus, but I quit sweets right away and didn't ever see spikes over 150, so no rapid insulin was needed.

I kept lowering the carbs. I read Bernstein. I learned about Paleo and have adopted most of it. My blood sugars are great on a very low carb diet, and diabetes doesn't seem to be progressing. The thing is, I don't know if very low carb is the right thing to do (for me).

Will low carb slow the type 1 progression? Will it prevent future complications? I don't know. But my doctor, my endocrinologist, my dietitian, my type 1 diabetic sister and her endocrinologist all think low carb diets really harm your metabolism and are too high in fat. In fact, I haven't met a single person in real life that thinks low carb diets are good for you.

Now that I've been on this diet for about a year and my total cholesterol is about 300, my doctors are patiently telling me to eat some more carbs. Part of me wants to ignore them. I'm wondering if I am just being stubborn and have completely lost perspective.

Can anyone offer words of wisdom? Should just be listening to my doctors? How do you all decide what medical advice to adopt?

Hi there. I'm betting you'll get as many different responses as there are recommended diets. I've found that a high fiber, relatively low carb (I mean compared to a standard American diet, maybe not compared to yours), mainly vegetarian/whole foods diet works for me (it's not that high fat either--it's mostly Mediterranean I guess). It sounds like the problem with your diet is high cholesterol? I have friends (non-diabetic) who have tried the paleo diet and swear by it--but it sounds like it might not be the right thing for your body. I'm LADA also (I still produce some insulin--not as much as it sounds like you do--but it's stayed the same for the 15 years since my diagnosis at 33). Congrats on quitting sweets. And congrats on committing yourself to something you want to try even though others are telling you not to. If there's one thing I've learned from diabetes it's that it really is your own project. Maybe it's worth trying something else for a bit. I don't think anyone has easy answers, alas. It sounds to me like you have to continue to do your own R & D. (And accept that you may or may not have control over whether or not diabetes progresses--)I say listen to everyone but listen to yourself too. Doctors don't always have all the answers...

This is going to sound really bizarre, but I have four daughters. Years ago, the eldest tested with these wild cholesterol numbers in the 400s. Everyone was up in arms, but when they found out that she was on birth control pills, suddenly no one cared about the high cholesterol. I was told, "You didn't tell me she was on the Pill." I can't explain cause and effect - It was too many years ago.
I have followed Dr. Bernstein for over 4 years. I am still not on insulin. My C-Peptide is down to 1.00, but it was 1.25 4 years ago. I am technically within normal range and don't have to worry about dangerous lows. I love to exercise, and I do so in combination with the low carbs. My A1c went from 4.9 to 5.3 only because I was getting false data because of Raynaud's. I was eating more during cold attacks thinking I was dropping. So, this is working for me. My Endo is happy with me.
I am very careful to make every carb a healthy choice. The only problem I have is getting enough Vit. C because I am allergic to Corn and have to take Corn free Vit C which contains calcium, so can't be taken near my thyroid meds.
They tell me I'm healthy. My good cholesterol is sky high, and my triglycerides are very low.
One more thing - has anyone checked you for Hashimoto's thyroiditis? It's another autoimmune thing that pops up in many of us that are autoimmune. If your thyroid is not working optimally, your cholesterol can go up.
Do you exercise?
I cook all my own food. I do consume a lot of olive oil, but I eat a lot of butter and mayo. I am religious about low-carb. The worst that I do is too many peanuts. Gosh, I have pork rinds sitting next to me, and I'm 60yo. Hmmmmmm...I really do exercise almost every day. I'm doing circuits in the am.

Hi Thompam: It really is "your diabetes science experiment." It is so excellent that you caught the Type 1/LADA early. I wrote my top 10 tips for the newly diagnosed Type 1 that you may find useful. What WILL slow the Type 1 progression is tight control. For someone like you, with still much endogenous insulin production, tight control may be the long acting insulin and low carb (it varies person to person). Multiple studies show that tight control prolongs the honeymoon, and results in better health outcomes.

I tried very low carb, and it just wasn't for me. Normally, I have low cholesterol, but on very low carb it was the highest ever, too high, and I also was constantly hungry and had terrible headaches. But by going lower carb, not very low carb, I feel good, my cholesterol is low, and I am happy.

So I'd suggest that you do the path that is right for YOU, and ignore the naysayers. You are doing great.

Ug, I share your frustration with the confusion! Everyone wants to tell you something different. I go back and forth, but basically I still eat carbs. I like a sandwich WITH bread and I love beans and cheese and chips (occasionally). My cholesterol is good- just had it checked and it was actually better than the last time I had it checked. Keep your bs in good control- that can adversely impact your cholesterol too. I think some of the stress is probably just coming right from diagnosis. I was pretty crazy about reading everything a few years ago too- there is just SO MUCH INFORMATION to digest. Work on the little things first. And I know this isn't popular probably to say, but try listening to your doctors- treat it as a little experiment. Be upfront with them about it. Another thing- working out several times a week has changed my life. I didn't have weight to loose when I was diagnosed and I've probably gained some lbs in muscle, but it has really REALLY helped me deal with the stress of all of having diabetes and when everything feels like it's out of control going to the gym makes me feel like I am doing SOMETHING! Good luck. You will figure out your own rhythm and works for your diabetes.

Thanks ladies. Yes, the cholesterol is what tipped me off that things might not be working properly, but also it's just hard to strictly adhere to a diet. It's been especially tough at friend's houses and eating out. And those things used to be really enjoyable for me. If I knew for sure that it was the best thing for me I would stick with it. But there are people telling me its unhealthy and not helping, so what's the point in working so hard!

I think my thyroid is fine, I had my TSH checked about 6 months ago and it was normal. Also, I do exercise 3-4x/week plus a short bike commute to work. Also I haven't taken birth control pills for about a year, but that is really interesting!

I think I'll slowly increase my carb intake and see what happens.

Exactly! I actually stared at a sandwich for a few minutes yesterday trying to decide if I should eat the bread.

Yes! I've been there!! Just remember you don't have to educate yourself all in one day. I have three kids so I get so angry at having diabetes sometimes b/c I feel like it's a full-time job on top of everything else in my life. I get so frustrated and feel like I do a poor job taking care of everyone- including myself. Give yourself a little grace though.

I'm sure that one day they'll look back an be totally inspired by your strength!

Interesting. This is the only cholesterol test I've ever had, but my endocrinologist did say that genetics have a huge impact on cholesterol, more so than diet from what she's read and seen in practice.

I am a 56 year old male diagnosed 8 years ago with diabetes now on rapid insulin. With a stint deployed in my top left artery, I can tell you with certainty that high cholesterol is a real concern that can and needs to be addressed with diet and exercise. I wish I had seen the light when I was younger, like you. I agree with you that low carb is not healthy, not the way to go.
I find that diabetes is like boxing. You are going to get hit, take hits, get bloodied. But if you learn the skills you need and believe in and follow them, you win. I have had 3 years of A1C less than 7, my last was 6.3. I count carbs but don't avoid them. You are smart to avoid sweets, but carbs give you the energy to live an enjoyably, energetically. I listen to my doctors, but listen to my body also and my BG meter. I will tell you that the more I exercise, the less insulin I use and the more effective it is. I eat a very healthy mediteranean diet. I go for the vegies and fruits like a fiend. Best wishes on your health!

Eat some good carbs… Ezical breads, that are sprouted , quinoa is a great carb and protein mix, flax is a great carb filler along with beans are great also. Just remember everything in moderation amd it sounds like you monitored yourself wonderfully so if one food does not work then don’t eat it and try something different but as long as your numbers are good you are doing the right thing. I don’t think by eating carbs you are harming your body but having high cholesterol is not good so experiment and see what your body tells you. Everyone is different so what works for me may not for you but be brave and try a carb. :).