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Toddler With Suspected Celiac

Sesara

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Roda Rising Star
Roda
Posted

I'm sorry you and your son are having a rough time. It's good that the doctor wants to rule other things out, but at the same time you don't want him/her to discount that it could very well be latent/early celiac. You don't want to wait for more damage to be done. It's too bad they didn't get the rest of the bloods when he was in for his scope. It would have been easy to do while they had him sedated. At least you seem well informed and have him gluten free now. I hate it when doctors tip toe around a celiac diagnosis. Is is great to have celiac? No, but there are a lot worse things that someone could be diagnosed with. It's manageable with diet instead of pills. I'm glad he has you as his advocate. When it comes to our kids we will do anything to make them not hurt, be well and happy.

My youngest son had so many issues as a baby(horrible reflux, constant infections, food intolerences, etc). I eliminated so much from my diet in hopes to give him relief. Upon reintroducing foods back for myself(after I stopped breastfeeding) I started having issues. It eventually took 2.5 years for me to find out I had celiac. By the time I was diagnosed my son was going on 4 years old. He had been seeing an allergist/immunologist since he wad 14 months. I had him blood tested(didn't get the full pannel either only IgA and IgA tTG) and he was negative. Aside from being small he otherwise seemed to have all his issues he had as a baby/toddler resolve so we kept him eating normal. He began complaining of reflux, fat in stool and weird behavior changes at age 5. This went on for six months. I had him retested when he was almost 6 almost two years from his first celiac test. He did get the full panel and the only test to be positive(barely, but a postitive is a positive) was his IgA tTG. I put him gluten free immediately not wanting to put him through a scope that could be inconclusive. In hindsite I regretted not doing the scope on him, so after about 4.5 months I reintroduced gluten in the hopes of doing a three month challenge. Three days is allmy son and his dad and I could tolerate. All his symptoms came back with a vengence. So suffice to say he is gluten free for life. I consider him a diagnosed celiac because of my diagnosis of celiac, his positive blood work, resolution of symptoms on a gluten free diet and return of symptoms upon gluten reintroduction.

My oldest son had many issues also. After his brother went gluten free it got me looking very serious at him. He has been blood tested several times and his blood work is always VERY negative. I did have him scoped last summer just in case he was a sero negative celiac. His scope was normal also. We decided to trial him gluten free anyway, due to his problems with constipation, daily stomach pain/gas/bloating, and stalled growth. What an amazing difference it made! All his problems resolved and he gained 6 pounds in a month and has finally started growing. He has never gained that much in a year since his first year of life. We did challenge just to see what would happen and he did get some minor symptoms. He decided that he wanted to stay gluten free because he feels better. He is now 11.

I can sympathize with you on wanting your child to be well. You are on a journey together and a healthier one. I hope you consider at least getting the full celiac blood work. If it is positive then I would consider myself celiac as well. There are doctors that will diagnose on blood work alone.

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Sesara Rookie
Sesara
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I'm sorry you and your son are having a rough time. It's good that the doctor wants to rule other things out, but at the same time you don't want him/her to discount that it could very well be latent/early celiac. You don't want to wait for more damage to be done. It's too bad they didn't get the rest of the bloods when he was in for his scope. It would have been easy to do while they had him sedated. At least you seem well informed and have him gluten free now. I hate it when doctors tip toe around a celiac diagnosis. Is is great to have celiac? No, but there are a lot worse things that someone could be diagnosed with. It's manageable with diet instead of pills. I'm glad he has you as his advocate. When it comes to our kids we will do anything to make them not hurt, be well and happy.

My youngest son had so many issues as a baby(horrible reflux, constant infections, food intolerences, etc). I eliminated so much from my diet in hopes to give him relief. Upon reintroducing foods back for myself(after I stopped breastfeeding) I started having issues. It eventually took 2.5 years for me to find out I had celiac. By the time I was diagnosed my son was going on 4 years old. He had been seeing an allergist/immunologist since he wad 14 months. I had him blood tested(didn't get the full pannel either only IgA and IgA tTG) and he was negative. Aside from being small he otherwise seemed to have all his issues he had as a baby/toddler resolve so we kept him eating normal. He began complaining of reflux, fat in stool and weird behavior changes at age 5. This went on for six months. I had him retested when he was almost 6 almost two years from his first celiac test. He did get the full panel and the only test to be positive(barely, but a postitive is a positive) was his IgA tTG. I put him gluten free immediately not wanting to put him through a scope that could be inconclusive. In hindsite I regretted not doing the scope on him, so after about 4.5 months I reintroduced gluten in the hopes of doing a three month challenge. Three days is allmy son and his dad and I could tolerate. All his symptoms came back with a vengence. So suffice to say he is gluten free for life. I consider him a diagnosed celiac because of my diagnosis of celiac, his positive blood work, resolution of symptoms on a gluten free diet and return of symptoms upon gluten reintroduction.

My oldest son had many issues also. After his brother went gluten free it got me looking very serious at him. He has been blood tested several times and his blood work is always VERY negative. I did have him scoped last summer just in case he was a sero negative celiac. His scope was normal also. We decided to trial him gluten free anyway, due to his problems with constipation, daily stomach pain/gas/bloating, and stalled growth. What an amazing difference it made! All his problems resolved and he gained 6 pounds in a month and has finally started growing. He has never gained that much in a year since his first year of life. We did challenge just to see what would happen and he did get some minor symptoms. He decided that he wanted to stay gluten free because he feels better. He is now 11.

I can sympathize with you on wanting your child to be well. You are on a journey together and a healthier one. I hope you consider at least getting the full celiac blood work. If it is positive then I would consider myself celiac as well. There are doctors that will diagnose on blood work alone.

Ok, I'm almost positive, having actually read a description of it, that I have dermatitis herpeteformis. I don't know why I didn't remember this sooner, but back in college, I broke out in a horrible rash that was itchy and oozy and they told me I had scabies, but the treatment didn't work and they re-treated with something stronger, and took skin for allergy testing. At the dermatologists, someone said something to me about maybe having a wheat allergy, but (unsurprisingly) the allergy test came back normal and then I finally cleared up. Except that ever since then, I have periodically gotten breakouts on the top of my feet of tiny, oozy pustules, and since a latex sensitivity I developed from food service gloves in culinary school, the backs of my hands also occasionally have broken out, one winter so badly that I ended up looking like a burn victim for weeks despite regular applications of hydrocortisone and aquaphor.

So yeah, I'm pretty much now just planning on getting a full blood panel for myself as soon as I get the results back for my son, which I fully expect will show genes associated with celiac. Because I might as well accept that there's a good chance I have it too if I have DH.

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