Autoimmune or not: What's Type 1b diabetes?

Autoimmune or not: What's Type 1b diabetes?

I still have diabetes. But now, it's called Idiopathic Type 1 diabetes, or Type 1b diabetes. I had never heard of this before the doctor called to give me my test results from last week. I had been wondering and wondering about it since last Friday and finally, during lunch, the doctor called to tell me that I have Type 1b diabetes.

Like everyone else in my life, you're probably asking what that means for me and if I still have to take insulin. Yes, it's practically the same thing and no, it doesn't change the way I live my life. I just know now that I have the type of Type 1 that isn't an autoimmune disease.

So what is it? It's hereditary. Yep. It's a gene that I carried around and something triggered the diabetes; an environmental factor. Interestingly enough, people with this type of diabetes are usually misdiagnosed to believe that they have Type 2 diabetes when in fact, it's Type 1.  There are even times of insulin independence, says the first article I read after Googling the terminology.

Nonetheless, what I gathered is that this type of diabetes doesn't have anything attacking it. I don't produce insulin but unlike the autoimmune Type 1a, which means that it was a person's own body attacking itself, my pancreas just doesn't want to work.

This form of type 1 diabetes is not autoimmune in nature, and tests for islet cell antibodies will come up negative. People with type 1 B have an insulin deficiency and can experience ketoacidosis (a high blood sugar emergency), but their need for insulin injections typically waxes and wanes over time.

Islet cells are those that make insulin and islet cell antibodies are those that attack them (in an autoimmune situation).

Now, why testing for this? Well, I had never been tested before. But the reason why these questions came up are very interesting. About a year ago, I decided to try the HCG diet. I can already hear people yelling at me regarding this, but nevertheless, I did it and it worked. The side affect of this diet was the fact that I cut my insulin usage by more than half while on it. It was incredible. By the end of the diet, I realized that I could go without insulin and did for about a day and a half. It was insane not to wear a pump or take injections, yet my blood sugar was maintained in the 100-120s. After looking up the side affects for HCG, I saw that one was increased insulin production.

Because it takes about 24 hours for your system to clear itself of the hormone, the next day when I checked myself without eating, my sugar had skyrocketed.

That was a year ago. Recently, my mom saw a news story about a guy who had been misdiagnosed for 15 years and only had to now take a pill to regulate his blood sugar. From my mom's insight, she said that they did not test for insulin production but only tested for sugar in the blood. What happened was that he was still able to produce insulin and it was Type 2 diabetes. She thought I might have the same issue. Obviously, it is not.

The doctor even thought I might have been misdiagnosed and said there was a possibility of having Type 2 diabetes. Pills only? I got excited thinking about the freedom that would involve. But alas, I'm still a Type 1 diabetic with more questions. I plan on continuing the search for answers.

One step at a time, right? Maybe one day I'll accidentally stumble upon a cure.


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  • Kiki, There's a Web site devoted to this type of diabetes, although the blogger hasn't been posting lately:

    And I did a blogpost about the condition a few years ago:

    Congratulations for calling attention to this form of diabetes. I suspect there are a lot of people out there who don't know they have it.

  • In reply to Gretchen:

    Sorry about that! I think it was the links that you posted. Thank you so much for reading and I will be checking out these links. The more we all learn the better. I'll be doing more research moving forward.

  • There's a Web site devoted to this type of diabetes:

    Also, I did a blogpost a few years ago,

    Jus t in case people want more resources.

  • This is a strange site. First it wouldn't use my comment, perhaps because I used URL. Then after testing, it rejected my comment because it said I was posting too often. When I tried later, it rejected it because it said I wasn't logged in, although I'd never logged out. It's as if this site doesn't want comments. I really wanted to provide information for those who wanted to know more.

    There's a blog devoted to this type of diabetes. It's called Barker's Type 2 Ketosis Prone Diabetes. Also, I did a blog on health central several years ago titled Flatbush Diabetes. Apparently can't post the URLs of either.

  • They did post above, they're just not active. You can try it again if you wish. Thank you for helping me explain this type of diabetes.

  • The comments did appear after a day or so. Sorry I got annoyed. I'm part Irish, and I have a temper.

  • I write the blog that Gretchen is referring to.

    I'm sorry to hear that you've got this but I'm very surprised to see it actually diagnosed.
    I am 1b also but I get buy strictly on diet.
    Check out the website and drop me a line.

  • In reply to Rekarb:

    Thank you. It's interesting isn't it? I'm not sorry, in fact I'm glad to know what TYPE I have. It brings more understanding and it makes it easier to deal with through it all.

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    As a person with Type 1 diabetes for the last 20 years of her life, Christina or "Kiki" for short, decided to take it upon herself to write about her findings, experiences and struggles with her disease. Her inspiration to educate people about all types of diabetes can be found communicated in this blog.

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