Negative Antibodies (Type 1B)? Looking for info

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david Posted: Sat, Dec 12 2009 6:59 AM

My 7 year old daughter was recently diagnosed with Type 1 Diabetes. Her antibody's test came back with negative antibodies. We're now told she has Type 1B. This appears to be very rare in Caucasians. Her glucose levels are very low and she doesn't take much insulin. I can't find much information on this anywhere and haven't gotten much info from our doctors. Does anyone have any information on this form of Diabetes?

 

Thank you

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Debbie replied on Tue, Dec 15 2009 9:48 AM

Sorry for the delay in my reply but I wanted to speak to one of our endocrinologists about your question. A percentage of children diagnosed with type 1 diabetes will have negative antibodies at the time of diagnosis (i.e. type 1b). It is important to remember that these antibodies are markers of disease, not causing it per se--so it is still likely that your son has type 1 diabetes. Sometimes the common antibodies develop after the diagnosis is made or other newly discovered antibodies may be present--you could ask your provider if it they feel it is necessary to perform any additional testing. Many children do not require much insulin shortly after being diagnosed. This is due to the well-recognized phenomenon many call the "honeymoon period". During this time, a portion of the beta cells are still able to produce some insulin which both lowers the child's insulin needs and provides more stable blood sugars. This can last from weeks to months, but in rare circumstances over a year. Depending on your child's presentation and family history, your endocrinologist may consider the rare diagnosis of "maturity-onset diabetes in the young" (MODY). Sometimes MODY can present with negative antibodies and low insulin requirements. This is a purely genetic (as opposed to autoimmune) form of diabetes. However, in the absence of a strong family history of diabetes (including one parent), the likelihood of MODY is extremely low.

-Debbie Butler, MSW, CDE

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David,

First let me appologize for the amount of time between your post and my response.  Second please note, I am not a Dr or RN or CDE, I am just a parent, going through the same thing you are going through.  My son was diagnosed with t1 diabetes at 12 months of age, he presented with severe hyperglycemia and ketosis, bg level was over 700mg/dl.  He is currently 5 years old has been anitbody negative throughout the 4 years of his diagnosis.  He has been tested for MODY, with negative results, and PNDM also with negative results.  We have been left with the diagnosis of type 1 b.  Which in my opinion is a catch all for that of which doesnt fit nicely into the type 1 box that has been created.  Type 1 b is a very rare diagnosis where the actual cause of diabetes is unknown, well personally I think they just stopped looking for the answer too soon, there is not much being done is the way of research for those with idiopathic diabetes and there are no real tests to say for sure you have t1b so we are left plainly with no answer at all.  As you mention this diagnosis is even more rare is caucasions, usually diagnosed in African American, Hispanic and Asians, however like you my child is caucasian.  He was started on an insulin regime that sent him into a sever hypoglycemic event twice before finding a insulin regime that kept him from dropping constantly, his current insulin sensitivity is 350... meaning 1 unit of insulin will drop his blood sugar 350mg/dl which is within range of the 400 it was at diagnosis 4 years ago, meaning he has not aquired any insulin resistance which is also present with prolonged use of injected insulin.  his C-peptide is low although not negative... I know Im getting completely way off point here but Im right where you are, and have been trying to get an answer for 4 years, I wish you luck in your pursuit and would appreciate any information that you are able to find as I will do the same in the event that we come up with an answer on our part. 

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Hi David,

I read your post about your daughter being diagnosed with type 1B did you have extra tests done to get that diagnosis?my son was just diagnosed less than a motnth ago and so far the one test came back negative for antibodies which confused me we are still waiting for the other test resultsthat may or may not show antibodies ,but I have never heard of this type 1B how is your daughter ?how is treatment going ?

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Hi Elizabeth,

I read your post about your son being diagnosed with type 1B due to no antibodies in his blood work my son was just diagnosed and so far tests have shown no antibodies it is confusing me.I have never heard of this type 1B and was wondering were there additional tests you had to have done to confirm that ?also how is your son how is his treatment regimen?

any information you can give me would be extremely helpful I feel lost!

Doreen

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Has anyone on here asked their doctors to test their children for Insulin Anti-Bodies? 

I personally was diagnosed at 7, I'm 23 now. But recently, I started doing a lot of research, realizing that I NEVER tested positive for the beta cell anti-bodies. I did however, 3 months ago, test positive for insulin antibodies. It has become such a problem now, that I am becoming more and more immune to the synthetic insulin I am taking. 

I wish someone would have stood up for me as a child (although the technology wasn't there yet).

I cannot find a doctor anywhere that will hear my story. They blow me off, telling me that I am just uncontrolled. I wear a pump, and test my sugar 12-15 times/ day. Sometimes it takes 7-10 hours for my humalog to begin working. And when that happens, my sugar plummets into the 20's.

 

The more research I do, the more children I find that are Mis-Diagnosed. Insulin Auto Immume Syndrome can be often mis diagnosed as T1 diabetes. 

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amrad replied on Sun, Jan 22 2012 8:46 PM

Have you tried the animal based insulin?

I would also look to see if someone is doing a study on it, and see if you can connect with one of the Dr's.

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Jeannie replied on Sat, Mar 31 2012 12:16 PM

My 9 year old daughter was recently diagnosed with type 1. She has always been healthy. I question that she has type 1 and am looking into other things. Please go to

http://www.cancertutor.com/Diabetes/Diabetes_Type_I_2.htm

   Read what Dr. Wong has to say about type 1. I am now working with Dr. Wong and his enzymes to see if it will work for my daughter.  I believe too many children have been diagnosed with type 1 when it actually was something else.

 

 

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My daughter is a type 1 for about 10 years now, and she got her first migraine last weekend.  It was so bad, she wound up in the hospital and is still there for pain control.  And even after they give her Dilaudid, within 4 hours, the headache is back.  She has all the classic symptoms of migraines, sensitivity to light and noise, nausea, vomiting, debilitating pain, and just generally miserable, although misery hardly describes what she's been through this week.  Her regular doctor diagnosed it as a migraine, but she couldn't get in to see her endocrinologist until next week.  Her doctor gave her Imitrex, told her to take in caffeine, take aspirin and Tylenol together, etc., etc.  NOTHING has helped more than a couple of hours.  I HATE THIS DISEASE!!!  Nobody in our family has ever had diabetes, and she gets type 1???  Makes no sense.

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