Symptoms?

[mamaduck]

My son has had keratosis pilaris since infancy. I decided to cut out gluten to see if it cleared up. Instead, the next time he was exposed, he broke our in blisters under his diaper and then his face. This happened a few times before my husband and I were fully convinced it was gluten. We are not a gluten-free household at this time so exposure happens.  We have noticed some days he will have frequent stools the texture of wet sand. When he poops, even tho they are soft, he screams in pain and I have to snuggle him until he is done. He has night terrors and wakes up from naps completely inconsolable. He just cries for about an hour after waking up. Our dr is sitting on referrals so no specialists have been seen, but our gut says celiac. I don't see these listen as normal symptoms, but has anyone else noticed these in toddlers after exposure to gluten? Or should we consider looking for other possibilities? 

[trents]

Welcome to the form, mamaduck!

Thanks for joining the forum and sharing your experience with your infant son. The list of symptoms and spin off medical problems associated with celiac disease is growing continually. Twenty to twenty five years ago you could not find a doctor who did not believe that unless you had classic GI symptoms you could have celiac disease. My own diagnostic trail started with elevated liver enzymes in the early 1990s but it took me 13 years before I found a doc who thought to test me for celiac disease and by that time damage had been done to some body systems that was not reversible, like osteopenia and kyphosis. Now there are around 200 known symptoms or spin off medical conditions that have been associated with celiac disease.

One thing to keep in mind is that removing gluten from your son's diet for any length of time will prevent valid testing. At this point in time, all celiac diagnostic testing requires eating regular amounts of gluten for weeks or months. Otherwise, you cannot distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity). They share a lot of the same symptoms and NCGS is 10x more common than celiac disease. But there is presently no test for NCGS. Celiac disease must first be ruled out. What I'm saying is that you have figured out already that gluten causes him problems but you may have to live with the ambiguity of celiac vs. NCGS.

It also seems to me that you and your husband need to commit to a gluten free household environment in order to keep your son safe. The other thing that may be an eye opener for you is that your son got those "can't do gluten" genes from one or both of you. Recent, fairly large studies, (one by the Mayo clinic) found that almost half of the first degree relatives of those with celiac disease were found to have celiac disease themselves when tested. Most of them had no idea because symptoms were minimal or missing. Many or most celiacs have no symptoms for years after the onset of celiac disease. We call them "silent" celiacs. To be fair, I should add that older research put the likelihood of first degree relatives of those with active celiac disese developing it themselves at about 10%.

About 40% of the population have the genetic potential to develop celiac disease but only about 1% of the population develop active celiac disease. It takes both the genes and some kind of triggering biological stress event like a viral infection or other life trauma for the genes to be expressed. But it also seems that first degree relatives of those with celiac disease may have a significantly greater chance of developing active celiac disease than does the general population.

So, where I'm headed with this gene thing is that the genetic testing can be done without your son having to remain on gluten. If he does not have one of the genes having been found to provide potential for celiac disease then you can rule out celiac disease and conclude NCGS instead. Physicians can order the gene test or, if they are not open to this, there are third party labs that will do it for around $200 U.S. Ideally, you and your husband should be genetically tested as well to know if one or both of you either have it in the silent form or would be at risk for developing active celiac disease at some point. It woud be something to be on the lookout for if genes were there.

Edited July 27, 2023 by trents

[mamaduck]

53 minutes ago, trents said:

Welcome to the form, mamaduck!

Thanks for joining the forum and sharing your experience with your infant son. The list of symptoms and spin off medical problems associated with celiac disease is growing continually. Twenty to twenty five years ago you could not find a doctor who did not believe that unless you had classic GI symptoms you could have celiac disease. My own diagnostic trail started with elevated liver enzymes in the early 1990s but it took me 13 years before I found a doc who thought to test me for celiac disease and by that time damage had been done to some body systems that was not reversible, like osteopenia and kyphosis. Now there are around 200 known symptoms or spin off medical conditions that have been associated with celiac disease.

One thing to keep in mind is that removing gluten from your son's diet for any length of time will prevent valid testing. At this point in time, all celiac diagnostic testing requires eating regular amounts of gluten for weeks or months. Otherwise, you cannot distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity). They share a lot of the same symptoms and NCGS is 10x more common than celiac disease. But there is presently no test for NCGS. Celiac disease must first be ruled out. What I'm saying is that you have figured out already that gluten causes him problems but you may have to live with the ambiguity of celiac vs. NCGS.

It also seems to me that you and your husband need to commit to a gluten free household environment in order to keep your son safe. The other thing that may be an eye opener for you is that your son got those "can't do gluten" genes from one or both of you. Recent, fairly large studies, (one by the Mayo clinic) found that almost half of the first degree relatives of those with celiac disease were found to have celiac disease themselves when tested. Most of them had no idea because symptoms were minimal or missing. Many or most celiacs have no symptoms for years after the onset of celiac disease. We call them "silent" celiacs. To be fair, I should add that older research put the likelihood of first degree relatives of those with active celiac disese developing it themselves at about 10%.

About 40% of the population have the genetic potential to develop celiac disease but only about 1% of the population develop active celiac disease. It takes both the genes and some kind of triggering biological stress event like a viral infection or other life trauma for the genes to be expressed. But it also seems that first degree relatives of those with celiac disease may have a significantly greater chance of developing active celiac disease than does the general population.

So, where I'm headed with this gene thing is that the genetic testing can be done without your son having to remain on gluten. If he does not have one of the genes having been found to provide potential for celiac disease then you can rule out celiac disease and conclude NCGS instead. Physicians can order the gene test or, if they are not open to this, there are third party labs that will do it for around $200 U.S. Ideally, you and your husband should be genetically tested as well to know if one or both of you either have it in the silent form or would be at risk for developing active celiac disease at some point. It woud be something to be on the lookout for if genes were there.

Thank you! I was reading some things that make me believe my MIL may have it, but I am either sensitive to gluten or yeast. I am aware that he needs to he exposed to be tested. Getting anywhere medically has been difficult, so we are avoiding until we make progress there and will then feed him foods with gluten leading up to testing and have been lenient with exposure in hopes of an accurate test when we get there. I appreciate your experience and knowledge. It makes me feel less crazy associating all these things with gluten exposure

[trents]

Although knowledge and awareness concerning gluten disorders has increased in the medical community as a whole in the last 25 years, there is still too much ignorance, especially among older physicians who have been out of medical school for some time. The veteran celiacs in this forum community will attest to that and how frustrating it can be to get taken seriously so as to get proper testing done for celiac disease. We have found that you need to go to appointments armed with information, being prepared to be appropriately assertive in order to get proper testing done. If a doc is not secure enough (or humble enough) to allow you to share what you have discovered in your research, get another doc. Even today, there are some docs who consider gluten disorders nothing more than the latest fad disease.

[Guest Neerajkirola]

7 hours ago, mamaduck said:

My son has had keratosis pilaris since infancy. I decided to cut out gluten to see if it cleared up. Instead, the next time he was exposed, he broke our in blisters under his diaper and then his face. This happened a few times before my husband and I were fully convinced it was gluten. We are not a gluten-free household at this time so exposure happens.  We have noticed some days he will have frequent stools the texture of wet sand. When he poops, even tho they are soft, he screams in pain and I have to snuggle him until he is done. He has night terrors and wakes up from naps completely inconsolable. He just cries for about an hour after waking up. Our dr is sitting on referrals so no specialists have been seen, but our gut says celiac. I don't see these listen as normal symptoms, but has anyone else noticed these in toddlers after exposure to gluten? Or should we consider looking for other possibilities? 

Consulting a healthcare professional for a proper diagnosis and guidance is essential. The symptoms you described, including frequent stools with the texture of wet sand, pain during bowel movements, night terrors, and inconsolable crying after waking up, could be related to various conditions. While celiac disease is possible, other medical issues could also contribute to these symptoms. Seek medical attention and discuss your concerns with a pediatrician or a specialist to explore all potential causes and determine the best course of action for your son's health.