Should Nutrient Levels Be Tested After Diagnosis?

[Sharon C.]

Hi-

I need to help my child gain weight. He is 8 years old and has just been diagnosed with celiac. He is extremely thin and his bone age is 4 1/2 even though he is now turning 8 next week.

After the celiac diagnosis, shouldn't they test his blood to see if he is deficient in certain nutrients? Or maybe they did and just haven't given me those results? I will check. They knew he was not anemic. They felt safe doing the endoscopy. Did your doctors test nutrient levels in your children after diagnosis?

Also, I read there is a bacterial virus that can cause villi atrophy. Why isn't a child tested for this as well, instead of putting them on the gluten free diet and waiting to see weight gain? Doesn't it makes sense to rule that out rather than wasting another few months? Is that done by biopsy or is a blood test enough?

My son's not a big eater. What are you feeding your kids to help them bulk up?

Also, I am terrified about the diabetes link to celiac. Diabetes runs in my family. Do celiacs generally avoid sugar when possible to avert developing diabetes? Are any of your children diabetic and celiac as well? Thanks-

Sharon

[lovegrov]

Yes, they should check for nutritional deficiencies.

You say he's been diagnosed but then you sound skeptical. How was he diagnosed?

As far as gaining weight, I recommend as much protein as you can get him to eat. You say he isn't a big eater but assuming he does have celiac, that might be because eating hurts. His appetite might improve on the diet.

richard

[Sharon C.]

Hi Richard-

I am only skeptical after reading that other conditions mimic celiac. It took me 4 years to convince doctors that my son was too thin after being brushed off by them repeatedly and being told my son was fine. A specialist, not his pediatrician, suggested the celiac blood screen. After that, he underwent the biopsy and it was positive.

Then, last night on CSA website, I read that other conditions can cause villi atrophy and if the person's condition does not improve, other causes need to be looked at. That's why I'm asking why not look at them now. Why not rule out some bacterial infection that mimics celiac. Why make my son wait another 6 months.

His gastro did not suggest a nutrient test, which bothers me. I have a feeling the doctors the United States are not all what they are cracked up to be. That's why this condition is grossly under-diasgnosed in this country, but not in others.

Even after the diagnosis, my son's pediatrician still insisted his weight was normal because he had always been thin. His height is average, his weight in the low 5%! He ignored the fact that my son hasn't gained a pound in two years. I had to point it out to him, then he agreed with the diagnosis.

When I had my own endoscopy 3 years ago, celiac was never mentioned, nor was I tested for it. They labeled me "irritable bowel" although I have no irritable bowel symptoms. My brother-in-law underwent an endoscopy, and they simply told him they couldn't find anything wrong, although his intestines were strangely smooth. Celiac was never mentioned.

Would you trust these people? Why shouldn't I sound skeptical. If there's a virus that mimics celiac, shouldn't he be tested? Thanks.