My daughter was diagnosed a month ago, diagnosed at early stage and in honeymoon period. Is there something we should be looking into to help preserve some of her current functioning beta cells?? Or do we just let the autoimmune disease take course and continue to damage the remaining good cells? Any help is appreciated!
hi @cnagreen angela,check with your doctor to see if there are clinical trials for the preservation of insulin production. Please understand that right now, complete loss of ability to produce insulin is unavoidable.
Hi Angela @cnagreen, there currently are several studies underway about beta-cells, reviving them, preserving them, and replacing them. The JDRF [jdrf.org] is funding some of these studies and talks about these studies in its regular email messages; the scientific language lies beyond my ability to explain.
You can find information on the JDRF site. you may also be able to find a “clinical Study” on the US Department of Health site: https://www.clinicaltrials.gov/
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My daughter was diagnosed 19 months ago and is STILL in her honeymoon phase! I keep waiting for the worst, and warning her because so far it’s been very, very easy for her. She is now 19 and away at college, but not too far! She has always been a pretty healthy eater and into candy and sweets that much (until she got T1D!!) but she really just is trying to keep her carbs down to prolong her beta cells, but nothing crazy. Her average is probably about 50 a day. I think we just happened upon it verrrrrry early. She only uses the CMG freestyle libre, and doesn’t want a pump in the near future. She’s very good about counting her carbs and giving herself shots with the pen. I’ve never had to do it for her. I keep waiting for the depression to hit, (and ask her regularly, because it sure hit me for a month or two!!) but she really has a good outlook about it, doesn’t hide it from people, but doesn’t share either. Like everyone says, every T1D is different! But we’re not scared of it!
To me, Missy @mrobinson, it sounds as if your daughter is in a real good place [other than having been diagnosed with T1D] and should do well. Her positive attitude, accepting diabetes as part of her life, should carry her far; depression DOES NOT occur in all persons living with diabetes.
Some people NEVER grow out of what is currently called “honeymoon phase” and some people never experience that phenomenon. I don’t know the method used to diagnose your daughter’ diabetes, but a very common method is to access the c-Peptide level in a person’s blood; c-Peptide is produced in the pancreas along with insulin and and is used as an indicator of a person’s insulin production. An extensive study among “The Joslin Medalist Group”, persons living with diabetes for more than 50 years, has found a surprisingly high number of Medalists still producing c-Peptide and by correlation, still manufacturing their own insulin - which fits the definition of “honeymoon phase”. All my C-Peptide test results have come back as <0.01% [less than 0.01%] which the doctors interpret as meaning the lab couldn’t find any.
I wish your daughter a long, and happy life!
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There is a study called the PROTECT study. I’m not sure where the locations of the study are. I know the Barbara Davis Center in Colorado is one research site. Individuals have to begin the study within 6 weeks of diagnosis and it is an infusion study. It requires 12 days of IV infusions of a medication called tefluzimab. It focuses on preserving beta cell function in patients. It is in its final phases of research FDA approval. I’m not sure where you are located, but it is worth contacting your endocrinologist and/or searching the web for the PROTECT study for type 1 diabetes near you!
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I heard several years ago that Washington State University in Pullman, WA was doing a study. You might want to check with them.
Hi there, I was diagnosed at age 11, 19 years ago. Highly recommend this book-
“Dr. Bernstein’s Diabetes Solution” .
Written by a Type 1 Diabetic Doctor, so he has tons of firsthand experience! I wish someone told me and my parents about this book when I was first diagnosed. It’s very thorough and extremely helpful.
Here’s a fascinating video with Dr. B talking about preserving beta cells-
Dr. B as mentioned above does have some excellent things to say, but he is hard core low carb. As everyone says, every person is a little different. Finding what works best for you and what doesn’t is key. I super appreciated Adam Brown’s book Bright Spots & Landmines: The Diabetes Guide I Wish Someone Had Handed Me. It’s easier to read than DR. B’s book and super practical. You can get it new for about $6 on Amazon or free download on www.diatribe.org website.
Lots of good responses! I don’t know how old your daughter is but many people have thrived in the honeymoon stage for years with a very low carb diet. Even little children. that being said, we are all different and we need to find what works for us. All the best!
hello all,
Please, in regards to the OP and the original topic: eating low carb DOES NOT preserve insulin producing “beta” cells in any measurable way. Eating high carb does not destroy insulin producing cells and eating high carb does not induce type 1 diabetes. No amount of carbs, from zero to a million, will change the outcome of Type 1 diabetes.
When a person’s autoimmune system attacks and destroys insulin producing cells, the destruction, caused only by the autoimmune system, is what leads to Type 1 diabetes.
Connecting diet choices to beta cell mortality is not correct, and we should avoid implying that diet has any influence on the cause of this disease.
Thanks!
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The phase 1 trial of IMCY-0098 was just completed with disastrous results. They were hoping this therapy can teach the immune system to not attack the beta cells.