A celiac symptom or something else?

[RJR]

This is my first time in this forum. Thank you for fielding this question. I have a 17 year old son, diagnosed with celiac disease since age 13. He was diagnosed bc he complained about his height and weight, compared to other kids. Bloodwork and biopsy confirmed it. The one thing I always noticed with him, even before his diagnosis, is that he would go 8-12 weeks (or some variation of that schedule) and then have one day where he could eat nothing and slept all day. Improvement would begin at night and he would be 100% fine in the morning. Since he was (and is) able to tolerate a certain amount of gluten…he never gets “typical” symptoms if there has been an accident…I was wondering if it was building up in his system and then he crashes and starts over. Has anyone else experienced this? Anything LIKE this? It’s a continuing struggle for him and he getting ready to leave for college and I would love to figure this out. TIA.—RJR

[trents]

Welcome to the forum, RJR!

Many celiacs are of the "silent" type, meaning the "typical" GI distress symptoms were not experienced prior to diagnosis. I was one of those and what actually led to my diagnosis of celiac disease was persistently elevated liver enzymes that could not be explained otherwise. But this took years to run down. I had very minimal GI distress but the liver enzymes, falling iron stores and serum proteins (albumin and total protein) were laboratory indicators of celiac disease. But that was over 20 years ago and much less was known about the long fingers of celiac disease than there is now.

Though I cannot directly address the occasional one bad day with somnolence and no appetite that was your son's experience, it needs to be said that youth has the advantage of physical resilience such that his body was able to successfully counter the celiac disease process while consuming gluten most of the time. That's my theory.

But my concern from what you wrote comes from this: "Since he was able (and is) able to tolerate a certain amount of gluten . . .". Please be aware that celiac disease demands total abstinence from gluten. It's not good enough to just eat a lower gluten diet as that will keep the inflammation in the lining of the small bowel smoldering, even if symptoms are largely absent. This is especially important to realize since your son is not a "sensitive" celiac and doesn't seem to react to small amounts of gluten. Lack of symptoms is not a good barometer for determining whether or not you are getting "glutened". The history of his celiac experience should tell you that already. For celiacs, the ingestion of gluten damages the villi of the small bowel. This is the area of the digestive track where all of the nutrition from the food we eat gets absorbed. For the celiac, ingestion of gluten causes inflammation in the villous lining which damages it over time. This results in inefficient nutrient absorption and this was likely a major player in your son being behind the curve in height and weight.

Now, I understand how difficult it is for a 17 year-old going off the college to avoid gluten. Depending on his housing situation (whether in a dorm or off-campus) it can be very challenging. But it can be done. We have had many posts on this forum from college-age young people and from parents of college-age people with celiac disease who are trying to navigate this mine field. But you need to take this more seriously it sounds like to me and allow "0" gluten indulgence. This might help in understanding the myriad of ways gluten ingestion happens:

 

[RJR]

Appreciate your response. Thank you. All good points to consider. Also, I was unclear in my description…he is on a completely gluten free diet. My “tolerate” comment was more about any accidental cross contaminations that may occur. Sorry for the confusion. 

[Wheatwacked]

I do that. One day I'll wake up and be so tired I just go back to sleep. Wake up for a bit, have some coffee and a little food then go back to sleep. Repeat several times until the next morning. No clue why, I figure cumulative sleep deprivation catches up with me. Gluten free since 2014. It is not a gluten x-contamination issue. Not low blood sugar. At his age I was usually up most of the night.  Tired during the day nap before dinner. Hasn't changed much. I like the solitude late nights and before dawn. One of my lifelong issues that GFD doesn't seem to have affected at all. 

[RJR]

Thanks for weighing in!

[Grammy9]

I agree with TRENTS. you may think that a small occasional oops is easy to tolerate but I found out the hard way not so. It has to be totally gluten free if you are Celiac. I’m DH and a small break out here and there although not intentional was ok it just causes more bigger problems soon. Diagnosed three years ago and still learning how many things contain gluten and figuring out what was it. Not just food. Medication. Make up. Vitamins. It’s a complete change of lifestyle that has to be all inclusive and consistent. He’s lucky to have great support. Going off to college he will need your support even more. Good luck. Grammy. 

[RJR]

I appreciate your response. I explained to TRENTS that what I meant to say was accidental x-contamination. I am fully aware that his entire life must be gluten-free. He’s been diagnosed for 4 years. Was just acknowledging that accidents happen. But it’s nice to see so many people who care and are concerned. —RJR