Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


climbmtwhitney

Recommended Posts

climbmtwhitney Apprentice

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyberprof Enthusiast

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 Apprentice

Laura,

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

Sonya

cyberprof Enthusiast
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 Apprentice
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. :unsure: 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 Enthusiast

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,195
    • Most Online (within 30 mins)
      7,748

    Florentina
    Newest Member
    Florentina
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...