Please Help!

[lkelli]

I have a two year old. He has other developmental delays and has had feeding issues since solid food was introduced. After a period of decline (refusal for all food and somtimes liquid) we finally did an endoscopy Nov 1st. All was well except for inflamation (mild) in the lowe intestine and shortening of the villi. We then did a blood test for celiac which came back inconclusive (negative but borderline low IGA) BUT positive for genetic markers. At the suggestion of his dr, I started a gluten free diet while we has myself, husband and 4 year old tested. My motherinlaw insists that she has celiac and that my husband had it as a baby. Well, we all came back negative. I am actually upset. Bc if someone was positive it would help solidify my sons dx.

To make matters more confusing starting 2 or 3 days after starting the gluten free diet my 2 year old actually slept through the night and has been. This is a big change from the waking up in the middle of night screaming in pain. Also, I swear his eating has improved.

Could it still be celiac? What do I do now?

[Haleigh]

I have a two year old. He has other developmental delays and has had feeding issues since solid food was introduced. After a period of decline (refusal for all food and somtimes liquid) we finally did an endoscopy Nov 1st. All was well except for inflamation (mild) in the lowe intestine and shortening of the villi. We then did a blood test for celiac which came back inconclusive (negative but borderline low IGA) BUT positive for genetic markers. At the suggestion of his dr, I started a gluten free diet while we has myself, husband and 4 year old tested. My motherinlaw insists that she has celiac and that my husband had it as a baby. Well, we all came back negative. I am actually upset. Bc if someone was positive it would help solidify my sons dx.

To make matters more confusing starting 2 or 3 days after starting the gluten free diet my 2 year old actually slept through the night and has been. This is a big change from the waking up in the middle of night screaming in pain. Also, I swear his eating has improved.

Could it still be celiac? What do I do now?

[Haleigh]

My son was delayed developmentally. He couldn't sit up until 10 months old, so the Dr. would not let me feed him. Once I started him on solids food (cheerios), he developed a horrible diaper rash, which would never go away. He bleed in his diaper area all the time.

I took away his Cheerios, and gave him Otios. It got MUCH better, but never ok. Now I know that oats may not have been good for him, but maybe better than wheat. The pediatrician, alergist, and dermatolagist never mentioned celiac. I even told them that anyone who ate bread, then touched my son, would cause welts on his skin. This was before we had a computer and internet.

I had my son stick to a wheat free diet until he was potty trained. The good news, I think he was a much healthier baby than all of my friend's babies. I spoke to a holistic Dr. at a social event, and she told me that may be very true, because of the wheat-free life.

BTW, he caught up developmentally around 3 years of age.He's 13 1/2, and healthy and happy, as any teen can be.

My advise would be to go to a nutritionist, and start a wheat gluten free diet. With proper guidance, I don't think you can go wrong. It is a huge commitment, and even one cheerio, would set my son back for a few days

Good luck.

Haleigh

[Ursa Major]

I have a two year old. He has other developmental delays and has had feeding issues since solid food was introduced. After a period of decline (refusal for all food and somtimes liquid) we finally did an endoscopy Nov 1st. All was well except for inflamation (mild) in the lowe intestine and shortening of the villi. We then did a blood test for celiac which came back inconclusive (negative but borderline low IGA) BUT positive for genetic markers. At the suggestion of his dr, I started a gluten free diet while we has myself, husband and 4 year old tested. My motherinlaw insists that she has celiac and that my husband had it as a baby. Well, we all came back negative. I am actually upset. Bc if someone was positive it would help solidify my sons dx.

To make matters more confusing starting 2 or 3 days after starting the gluten free diet my 2 year old actually slept through the night and has been. This is a big change from the waking up in the middle of night screaming in pain. Also, I swear his eating has improved.

Could it still be celiac? What do I do now?

Obviously all was NOT well with his biopsy. If they find any inflammation at all in a toddler's intestine, and shortening of the villi, that means he has damage. Especially with his villi already being damaged (which would only get worse, of course), a borderline blood test, and the celiac disease genes, there is no doubt in my mind he has celiac disease. Testing on kids under five is extremely unreliable (and is only somewhat more reliable after that), and yields many false negatives.

Since the gluten-free diet works for him, and the diet is THE most valid test in young children, you really have all the evidence you need for a firm celiac disease diagnosis.

And even though your husband's blood came back negative (a false negative, no doubt, which is very common), he obviously has celiac disease. If he was diagnosed as a baby, he has it, as it is not curable. In those days they seriously thought that you can outgrow celiac disease. Now they know that isn't possible.

While kids got better being gluten-free (of course), and often seemed fine for a while when eating gluten again (it takes a while to show enough damage to test positive, sometimes many years), that doesn't mean they were cured.

Sooner or later the autoimmune diseases, depression etc. would show up, and eventually (sometimes not until decades later) the diarrhea and other gastrointestinal problems would hit. And eventually the bowel cancer would kill people ahead of their time. It's only a matter of time before your husband will get noticeably ill, unless he eliminates gluten.