For Parents Whose Kids Were Asymptomatic W/diagnosed

[linsmad]

My 7yo daughter is asymptomatic but has has two progressive blood tests with elevated EMA/iGa numbers. The ped GI is recommending she have an endoscopy to determine if she has celiac or not (my husband does). We randomly screened both kids and found slight elevations in my 7yo. I am wondering if anyone else has found out that they or their kids had celiac and were asymptomatic but noticed improvements after going gluten-free. When my husband was diagnosed at 41 we were thrilled he had celiac. He had been so sick he had lost 30 pounds and was so lethargic. He had a life changing improvement after making the dietary changes. I am just wondering if there will be some sort of improvements to anticipate for my daughter should she be diagnosed with celiac and have to maintain a gluten-free lifestyle. I hope this makes sense.

Thanks in advance for your help!

[jmjsmomma]

My 5 yo son was pretty asymptomatic. It was picked up by his endocrinologist after we exhausted all other efforts to find out why he was not growing (he is the size of a tall 3 year old) and were shocked when it came back off the charts positive. Went to the GI and the biopsy confirmed the bloodwork. He DID have a distended belly which was completely gone after 3-4 weeks of being gluten free. His arms and legs have thickened up, but we have not seen any growth or weight change yet. He does say that his belly feels better, I guess he had been sick for so long that he didn't know what it felt like to be "normal". Other than that we haven't noticed much else.

[WendyG]

Your story sounds very similar to ours. I am the one with celiac and I had all three of my children tested this past spring. My 8 year old was positive. She had no symptoms that I saw, I actually wanted my oldest tested and decided to test all three for a baseline. She is doing great on the diet. It helps that we have all our family meals gluten free anyway. I noticed she put on weight right away. She was thin but normal for her hight and age. She says she feels much better and said after we found out she had celiac that her tummy hurt a lot at night, but she didnt want to wake us.

I am so thankful I had them tested and that I am no longer hurting my baby!

Good luck!

Wendy

[cruelshoes]

I was diagnosed with all the classic celiac symptoms. At that time I only had 2 kids. They did not have any obvious symptoms, but we screened them anyway because they were my first degree relatives. My son was positive. When we were having the testing done, I was sure my daughter was going to be positive, because she had terrible problems with constipation when she was a baby, and she was quite thin. My son had always been big for his age, and a little chubby. I never would have expected it in him. But even though he did not really have symptoms that we could see, his bloodwork and biopsy were nearly as bad as mine were.

After the bloodwork and biopsy diagnosis for my son, I started reflecting more about his possible symptoms. He did not have the GI problems. But the more I thought abut it, the more I realized that he did have dark circles under his eyes, his skin was pale. And, most importantly, he did not grow at all in height and weight for the year before he was diagnosed. So even thought he did not have the symptoms I would have expected, he did have some signs, if we had only known what to look for. Fortunately (or unfortunately), now that he is gluten-free, his symptoms are quite pronounced. Pretty severe "D" and nausea that lasts many days.

My son grew 4 inches in the year after we removed gluten from his diet.

[jmjsmomma]

Your story sounds very similar to ours. I am the one with celiac and I had all three of my children tested this past spring. My 8 year old was positive. She had no symptoms that I saw, I actually wanted my oldest tested and decided to test all three for a baseline. She is doing great on the diet. It helps that we have all our family meals gluten free anyway. I noticed she put on weight right away. She was thin but normal for her hight and age. She says she feels much better and said after we found out she had celiac that her tummy hurt a lot at night, but she didnt want to wake us.

I am so thankful I had them tested and that I am no longer hurting my baby!

Good luck!

Wendy

After my son was diagnosed, the rest of us got tested. My husband and I got tested as well as testing our other two children. We are all negative. My husband went gluten free is "solidarity" with our son, and over the last three months we have gradually become gluten free out of habit and ease. My son also told us that the had belly aches at night but didn't want to bother us....it broke my heart (

[jmjsmomma]

I was diagnosed with all the classic celiac symptoms. At that time I only had 2 kids. They did not have any obvious symptoms, but we screened them anyway because they were my first degree relatives. My son was positive. When we were having the testing done, I was sure my daughter was going to be positive, because she had terrible problems with constipation when she was a baby, and she was quite thin. My son had always been big for his age, and a little chubby. I never would have expected it in him. But even though he did not really have symptoms that we could see, his bloodwork and biopsy were nearly as bad as mine were.

After the bloodwork and biopsy diagnosis for my son, I started reflecting more about his possible symptoms. He did not have the GI problems. But the more I thought abut it, the more I realized that he did have dark circles under his eyes, his skin was pale. And, most importantly, he did not grow at all in height and weight for the year before he was diagnosed. So even thought he did not have the symptoms I would have expected, he did have some signs, if we had only known what to look for. Fortunately (or unfortunately), now that he is gluten-free, his symptoms are quite pronounced. Pretty severe "D" and nausea that lasts many days.

My son grew 4 inches in the year after we removed gluten from his diet.

.

Cruelshoes that is funny....we had a similar experience. After my son tested positive (neither parent is positive- currently anyway), we had our other two kids tested. I just knew my 2 yo daughter had it. She is so like my celiac kid in so many ways....both had reflux, big bellies, etc. Ironically, she was IGA deficient so we had to do the gene test on her and she was all clear. Now my 4 yo (who tested negative) will be tested every year unless a. he becomes symptomatic or b. we can afford another $800 gene test!

[caek-is-a-lie]

or b. we can afford another $800 gene test!

I just ordered a gene test from Enterolab for $149. It's a lot more merciful on the wallet! You might check it out. enterolab.com

[linsmad]

Thank you all for your replies. It is good to know that even in "asymptomatic" cases there were improvements. We aren't going for the endoscopy for about two weeks-so I still have some time until we get actual results.

Was it hard for your kids to accept the diet given that they weren't "really sick" (for those who were old enough to understand)? We basically eat gluten-free in our home, it's just school and going out that will be a change...