Mom T1 Diabetic, Toddler Has Celiac?

[KenzMom]

Hello! I want to start by saying that this is a great group of people (based on posts i read) and I am very grateful for any help and insight from you all. 

 

I am a mother of a 1.5 year old girl. I myself am a Type 1 diabetic and I have brother who is Type 1. Type 1 and Celiac are known to coincide so I have been tested before but was negative. 

 

My daughter has had tummy problems from nearly the start and I am wondering if she could also have an autoimmune disease--Celiac.... She was diagnosed with reflux at 3 months old (screaming, spitting up, arching her back). She was put on 2 reflux meds which did not help much. She went from breastfed, to formula (screaming got worse) and finally we put her on Soy Formula and that seemed to help at first. 

 

She was still having terrible bouts of gas and constipation. After she turned 1, we tried milk again-as the doctor suggested- and after a month she began to vomit every day and have painful gas. We took away all milk products and she is not throwing up, but she has 1-2 diarrhea stools EVERY day. It smells HORRIBLE!! And she has painful gas a few times a week. She tends to run a low grade fever and will have unexplained high fevers a couple times a month (102-104 degrees) with no symptoms. Her CBC is perfect, she is still chubby, and her stool tested negative for bacteria (although blood was present in the stool). 

 

I feel like her pediatrician thinks I'm just a little dramatic at this point but I feel like i should have her tested for Celiac. I have no known family history--just the Type 1 diabetes (and I don't know if that puts my child more at risk). Any advice? Does this sound similar to any one else's experience? 

[cyclinglady]

Keep in advocating for your child! Never give up!

That said, here are the tests. Make sure the panel is complete. Often they screen using the TTg but in my case I was negative. If my GI had not run the entire panel, my diagnosis would have been missed.

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

Welcome to the forum and let us know how it goes!

Oh, I was diagnosed last year with diabetes. Treatment at this time is diet and daily glucose testing regardless of type. My doc and I are monitoring for type 1 (LADA which could have up to a five year honeymoon period). I have hesitated in asking for an antibodies test since I was barely positive on the celiac disease test. So, I am in your shoes, but from a different side!

[nvsmom]

You know your stuff there, Mom.  That's good that you are getting her tested.  

 

Like Cyclinglady said, get all of the tests done.  Celiac in toddlers is easier to miss, and theses tests can miss as many as 1 in 4 celiacs, so make sure all tests are done.  The deaminated gliadin peptides tests (DGP tests) are often the best at detecting celiac disease in toddlers.

 

You might want to consider the endoscopic biopsy if the tests are negative.  Many toddlers have their celiac disease caught by biopsy.

 

If everything is negative, you could always try the diet for 6 months.  Sometimes celiac disease is missed, and other times it is non-celiac gluten sensitivity (NCGS), but either way one can benefit from the gluten-free diet.  If going gluten-free (for at least 3 months) has no benefit, then you know that isn't the problem... Do not go gluten-free before testing is complete though.

 

Also, if you get any symptoms of celiac disease you should get tested again.  It can appear at any time in someone's life so one year they may be seronegative but the next they are not.

 

Best wishes.  

[KenzMom]

Thank you for the advice!! I decided to give her coconut milk all day yesterday instead of soy- and amazing she had a firm stool! I guess if she truly has celiac, then her reactions may come in waves? Is that normal? This is all so new to me. Regardless, I will be getting her tested.

[cyclinglady]

Lots of folks here have other intolerances due to intestinal damage.

My only symptom was anemia. No tummy issues. I was shocked when my GI suggested it, but he was right. Others have no symptoms at all and got tested because they had a first-degree relative who had celiac disease.

Check out the University of Chicago's celiac website for more information and a list of 300 or so symptoms!

[nvsmom]

My symptoms did come in waves. I had good days, weeks, months and even years... On the flip side I had bad days, months, and years too.  Not every meal made me sick, but as the decades went by I started feeling sick more often than well.  If she has a gluten sensitivity (whether celiac disease or NCGS) by catching this now you will be making a huge positive impact on her future health.    Nice job.

[KenzMom]

Today is the day I take the little one to get her blood drawn to test for celiac disease! I'm a bit nervous-- especially because they have to draw blood from her little vein. She has been a gassy, cranky, clingy mess for the past several days. Neither one of us has gotten much sleep. She also has a light red rash between the bottom of her nose and her upper lip? Sometimes you can really see it and sometimes you can't. 

 

Anyways, a part of me wants a positive confirmation that what she has going on is celiac, and yet I also don't. I don't want her to be at an even higher risk for diabetes. Diabetes has been quite a trial for me.

 

I have decided that if she tests negative then I will take her to see a pediatric GI. If she tests positive for celiac disease, should I also take her to a GI? If she is going to have an intestinal biopsy, does she need to keep eating gluten? Thank you for your help! 

[nvsmom]

If you have the endoscopic biopsy done, she will need to be consuming gluten (between 1/2 to 2 slices of bread per day) in the 2-4 weeks before the procedure.  Make sure at least 6 samples are taken; then endoscopy can miss up to 20% of celiacs but upping the number of samples taken can help reduce that.  

 

Many GI's (pediatric or not) will bump ahead a young child's biopsy if she is having a hard time with the gluten challenge.  It's something to ask about.

 

Good luck!