5 Yr Old Gluten Intolerant/celiac & Possible Type 1 Diabetes

[climbmtwhitney]

Hi.

We've had a really rough week. I took my 5 year old gluten-intolerant son to the ER at 4 am Sunday morning because he woke up, yet again, slightly out of it, crying and nauseous. I took his blood sugar for the first time and got a 299 (way too high). So, I called the ped advice line and they said to take him in. Before we even left he began throwing up a bunch of bile. He hadn't eaten in about 8 1/2 hours. About 1 hour later at the hospital his blood sugar was 178--still too high. So then about another hour or so later they did a full blood draw, not a finger prick, and he came back 90 (normal). They said his blood sugar spontaneously resolved and that we should follow up with his ped on Monday. He had diarrhea all that day (starting at the hospital) and continuing for about 14 hours. (He's been having episodes (2x or 3x/week for the last month or two) where he gets very nauseous and sometimes vomits, especially when he hasn't eaten for a few hours, such as skipping snack at school.)

So, Monday morning I took him to the ped who looked at all his test results (from another) and said not only does he have Celiac, not gluten intolerance as we think, but that he thinks he has type 1 diabetes too. He sent us immediately over to the children's hospital and arranged for us to meet with an endocrinologist in the ER. Basically, he FREAKED me out. So, we dropped everything and went and spent the whole day at the hospital. His blood sugar was fine. They did a hemoglobin A1C test (which shows his average blood sugar) over the last 2 or 3 months. Results were good. But, then the endo said she wouldn't rule out early onset diabetes until we got the results from 3 antibody tests which will show if his body is producing antibodies to attack his pancreas where the insulin is produced.

So, my questions are (as we await the results next week) what is the typical pattern of early onset diabetes? Is there a typical pattern? I know being thirsty and urinating a lot is common, but my son has always done that, so I haven't noticed a marked difference as of late. I'm not asking if I should be worried, I AM worried. And, frankly, nothing else can make me worry any more or less. I am just curious from those with type 1 what their discovery experience was like. And how long it was before their early symptoms manifested in full type 1 diabetes requiring insulin.

Thanks for your insight,

Sonya

P.S. We tested his blood sugar in the first place on the advice of a nutritionist. I already used the monitor on myself occasionally since (before going GFCFSF) I would sometimes get really shaky in the morning and HAD to eat immediately.

[cyberprof]

Here's some info from NIH Open Original Shared Link

The immunologic process that leads to type 1 diabetes can begin years before the symptoms of type 1 diabetes develop. Symptoms become apparent when most of the beta-cell population is destroyed and develop over a short period of time. Early symptoms, which are mainly due to hyperglycemia, include increased thirst and urination, constant hunger, weight loss, and blurred vision. Children also may feel very tired.

As insulin deficiency worsens, ketoacids (formed from the breakdown of fat) build up in the blood and are excreted in the urine and breath. They cause the feeling of shortness of breath and abdominal pain, vomiting and worsening dehydration. Elevation of blood glucose, acidosis and dehydration comprise the condition known as diabetic ketoacidosis or DKA. If diabetes is not diagnosed and treated with insulin at this point, the individual can lapse into a life-threatening diabetic coma. Often, children with vomiting are mistakenly diagnosed as having gastroenteritis. New-onset diabetes can be differentiated from a GI infection by the frequent urination that accompanies continued vomiting, as opposed to decreased urination due to dehydration if the vomiting is caused by a GI "bug."

Risk Factors. A combination of genetic and environmental factors put people at increased risk for type 1 diabetes. Researchers are working to identify these factors so that targeted treatments can be designed to stop the autoimmune process that destroys the pancreatic beta-cells.

Co-morbidities. Autoimmune diseases such as celiac disease and autoimmune thyroiditis are associated with type 1 diabetes.

Identification Children with Diabetes:

Type 1 diabetes

The rate of beta cell destruction in type 1 diabetes is quite variable -- rapid in some individuals (mainly infants and children) and slow in others (mainly older adolescents and adults). Children and adolescents may present with ketoacidosis as the first indication of type 1 diabetes. Others may have post-meal hyperglycemia, or modest fasting hyperglycemia that rapidly progresses to severe hyperglycemia and/or ketoacidosis in the presence of infection or other stress.6

As type 1 diabetes is caused by immune destruction of the insulin-producing beta cells, antibodies against proteins in the islets are found in children and adolescents months to years before the onset of diabetes. The presence of these antibodies, GAD-65, ICA, IAA and IA-2, have formed the basis for trials predicting who will develop diabetes and for recruiting high risk children and adults for prevention trials. Individuals with high titer antibodies and those with more than one antibody are more likely to develop type 1 diabetes. In addition, young age and being a first degree relative of someone with type 1 diabetes place children at high risk. In general, 70 percent of people with new-onset diabetes will have a positive antibody if only one antibody is tested, whereas 90 percent will have at least one antibody when all four are measured.

Hope this helps and I hope you get good news and good health for your son.

~Laura

[climbmtwhitney]

Laura,

That's the best info I've read. Thank you very much for sharing!

Sonya

[cyberprof]

Laura,

That's the best info I've read. Thank you very much for sharing!

Sonya

It looks like you've got some good docs and they are testing for the right things. When will you get answers?

My grandfather was Type I and my son has the gene for it but has not developed diabetes to this point.

Did you have any gene testing done?

~Laura

[climbmtwhitney]

It looks like you've got some good docs and they are testing for the right things. When will you get answers?

My grandfather was Type I and my son has the gene for it but has not developed diabetes to this point.

Did you have any gene testing done?

~Laura

Hi Laura,

We will get the results on Tuesday. I'm not sure if the doctor also tested the genes. Which ones are associated? I couldn't find an easy explanation online. We have tested him genetically for Celiac and gluten intolerance, so we do have some gene results. And I read that Celiac and Type 1 diabetes genes are on the same chromosome, but that's all I know.

I'm very sorry to hear that your son has the genes. How likely is he to develop Type 1 having the genes? And, are you doing anything different with his diet to help prevent it?

Thank again for your help! Appreciate it!

Sonya

[cyberprof]

The only thing I can find is Wikipedia, and it's a bit over my head.

Open Original Shared Link

At 15, I hope he is past the age to get diabetes, but I am in the dark about it. His doc said not to worry.

Take care and i hope your son is better son.

~Laura