Celiac Screening Positive for Type 1 Diabetic

[Mommamatt24 0]

Hello and thank you in advance for any support!

I am a mother of two type 1 sons ages 5 and 2. My 5 year old has been having crazy low blood sugars that are difficult to come up, persistent belly pain that has put him in the hospital for a couple of days and sometimes will wake him up at night. He was admitted to a local hospital on March 18 because I thought he was having appendicitis attack. His pain was severe and it worried me. Once in the ER they did a CT scan and he then vomited and the next two days had diarrhea after each meal with bad belly pain. March 16 and 17 he had complained of belly pain, but nothing too severe and had crazy low blood sugars that even if I gave 100 carbs he would not come up until I disconnected his pump for HOURS. Then the severe pain happened on March 18 and he was admitted for possible appendicitis attack. The CT Scan showed inflammation of the small bowel and surrounding lymph nodes. I asked if this could be celiac as I know it goes hand in hand with Type 1 Diabetes, and was told absolutely not. Fast forward 10 days later and he was still waking up at night in severe pain and crying on the bathroom floor. Called the pediatrician who did abdominal and pelvic x rays and stated he looked a little backed up. He recommended Miralax for 7 days, but I did it for 10 and he still had pain. At the pediatric visit I asked again if this was Celiac and he said possibly, but wanted to rule out constipation first. 3 weeks later and he was still randomly waking up at night and complaining of belly pain throughout the day and would have low blood sugars...so I called our endocrine doctor and they immediately did a Celiac Screen and Thyroid.

His TTG IgA was 29.19 (0-19.99 range)

While this is a "weak positive", my question to you is are many people diagnosed with numbers as low as this? Everyone I have spoke with has numbers 90+....

He is to remain on a gluten diet until further testing is completed. He will go to a Celiac Clinic at our Children's Hospital on June 1st. While I know one test can't diagnosis, I have hope for a "false positive" ...has anyone dealt with a blood test with these low end results and came out to have Celiac? Can you catch Celiac early? and can you see the effects of Celiac Disease on a CT scan??

Thank you!

Worried Momma!

Edited May 3, 2017 by Mommamatt24

[cyclinglady 1,574]

I am sorry that your child is ill!  Thank goodness you keep on advocating for his health!  Yes, it could be the early stages of celiac disease.  TD1 and celiac often go hand-in-hand.  About 10% of TD1 patients develop celiac disease.  Both seem to share the same genes.  Both are autoimmune.  In fact, it is recommended that all TD1's get screened for celiac disease.  

When you get to the celiac clinic, ask for the complete celiac panel.  It may provide more information.  But you have a positive and further investigation is needed.  Typically, a endoscopy is ordered.  See this algorithm:

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

No, a CT scan will not catch celiac disease.  The damage is microscopic (intestinal villi).  You can catch it early. Some doctors will insist on seeing severe damage, but let's talk about that after you have seen the GI.  

We are here to help!  Keep him on gluten until all testing is complete!!!!! Great job Mom!  

Oh, you can eliminate dairy to see if this makes him more comfortable.  This will not impact celiac disease testing. Lactose Intolerance (temporary) is common for celiacs.  

[Mommamatt24 0]

Thank you so much for responding! I did look at the link you sent and tried to find more information in regards to the Mayo Clinic's positive results >10 in comparison to the ranges of my sons testing where a positive is >19.99. GI did tell me that he will have more labs drawn at the upcoming appt and I think we will definitely get the answers we need to help my little guy out even if it is Celiac.  Im reading and preparing for our life change the best I can. He is obviously oblivious to everything for now bc he has had a rough time beginning to realize that Type 1 is a "forever" thing. I don't want to overwhelm him. He has been negative on his yearly screenings in the past but his symptoms warranted a test before his next routine bloodwork. Anything though to make my little guy better I'm willing to do!!

[GFinDC 834]

Hi Mom,

Some things that might help.  He doesn't need to eat a lot of gluten for testing to work, just some every day.  A cracker or a slice of bread is fine.  Also, Pepto Bismol can help with gut pain but check if he is old enough for it.  It has aspirin in and thee say children under a certain age shouldn't have it.

Digestive enzymes and probiotics may help, and also not eating sweet things or lots of carbs.  Sometimes gut pain is increased by gas/bloating.  So avoiding gas making foods like carbs and sugars is good.   CL already told you about the diary and I second that.

Peppermint tea is good for relaxing smooth muscles and may help get gas out.  Pyure stevia is a good alternative to sugar for sweetner.

The diet we generally recommend is a whole foods diet of meats, veggies, nuts and eggs for several months to help the gut heal.  That's also a good diet for diabetes as it reduces blood glucose swings/spikes.

The ttg IgA is the usual initial screening test for celiac disease but the full celiac panel should also be done.  The full celiac panel includes tests for IgG antibodies and total serum IgA, and EMA.  There are usually tests for DGP IgA and DGP IgG antibodies too.  A positive on any antibody test along with a  positive endoscopy biopsy is diagnostic for celiac disease.  Although the DGP tests are sometimes unreliable in children.

Edited May 3, 2017 by GFinDC

[cyclinglady 1,574]

An elevated TTG has been linked to autoimmune issues.  He already has an autoimmune issue -- TD1.  So, it could be related to that, but don't get your hopes up yet.  Kids often test better to the DGP IgA.  I test positive only to the DGP IgA (I am old!) and never on the rest of the celiac panel, even on follow-up testing. Weird, but true.  

If he does have celiac disease and he avoids gluten, he will most likely be better able to manage his TD1. That is good news!  

[Mommamatt24 0]

Thank you so much for all of the advice.  I wish we didn't have to wait so long for more blood work. I'm so impatient with this "borderline" screening right now. Seriously appreciate all of the tips about lactose and peppermint tea, etc. 

 

i jist hope if he is positive that it's positive enoug to get a definitive diagnosis.