Jump to content

  • 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

Mom T1 Diabetic, Toddler Has Celiac?

KenzMom

Recommended Posts

KenzMom Rookie
KenzMom
Posted

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? 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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 Community Regular
nvsmom
Posted

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 Rookie
KenzMom
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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 Community Regular
nvsmom
Posted

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 Rookie
KenzMom
Posted
  • Author

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! 

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.