Relatively Symtom Free

[Roo]

My son just had a positive blood test for celiac disease, we are going next week for an Endoscopy. My question is: He has no symtoms as far as discomfort, never a stomach ache, not particularly gassy, not diarrea non of the symptoms that are so frequently mentioned on the board. He is just a little on the shorter side and thin. But I myself am short 5' and thin with a naturally fast metabolism. Finally the question, after going on the gluten free diet did any of you or your children have a growth spirt or weight gain...or maybe start having the stomach symptoms that you never had before if you have a slip up on your diet accidental or otherwise? We are almost afraid to put him on the diet and create problems that he never had before.

We are so confused, any comments?

[celiac3270]

A few quick facts:

- The majority of celiacs have no symptoms. This is one of the main reasons 1 in 150 have it, but most people don't know it and never find out. It takes awhile for doctors to diagnose celiac in people with symptoms, which is why there seem to be so fewer celiacs without symptoms on this board. Now, probably the majority of DIAGNOSED celiacs have some symptoms. Asymptomatic celiacs are very common, however. Therefore, your son could very well have celiac.

- Putting him on the diet should not affect him negatively at all. After all, if you don't have a peanut allergy and you cut nuts out of your diet anyway, you don't suddenly develop problems with peanuts. That's the wonderful thing about this diet: you can just try it and see if it helps any and if it doesn't and you've run conclusive tests that determine he doesn't have celiac, you just return to the old diet.

- Low height or weight is a sign of celiac. Celiac results in the destruction of the villi that line the small intestine when wheat, rye, barley, or any other forms of these products are consumed. The villi are very, very tiny finger-shaped things that increase the surface area of the intestine because they protrude out of the walls of the intestine. The villi absorb nutrients. Thus, when the villi are destroyed, the intestine is only absorbing nutrients through the walls themselves, which can result in malabsorption. That's why some celiacs are thin and many don't grow very much. I'm a 14 year-old male and when I started the diet almost a year ago, I was 5'1 tall and straddling the 70 pound mark. No matter how much I would eat, I wouldn't gain much weight. I also had the symptoms of stomach pains and vomiting, which meant that everytime I got a bout, which was about every 1-3 weeks, I would drop 3-5 pounds. I would slowly get back up to around 72 pounds and then get sick again. The highest I ever reached on gluten was 75 pounds. A year later I still have some of the symptoms I had before, but my villi have grown back completely, thus I'm now 5'3" or 5'4" and about 85 pounds--a jump of 17-20 pounds from my lowest points in February of 2004. I have a ways to go, but I've grown a lot more on the diet--while on gluten, I gained literally 1-2 pounds every year...now I've gained about 20 in 11 months.

- Bloodwork is very reliable for testing--the endoscopy does not always come out positive, so you shouldn't dismiss celiac if you get a negative biopsy. This can be the result of which areas the doctor took samples from. Certain areas might be destroyed, others might not yet be affected, if he has developed his celiac relatively recently. If you get positive blood/biopsy, I think it's your duty to your son to try the diet. He may have no symptoms now, but some people go years without symptoms and suddenly develop them. Not only are there the short-term discomforts of stomach aches, gas, diarrhea....not only are there issues with growth.....celiac that has gone many, many years without treatment can lead to ulcers, cancer, osteoporosis, malnutrition, eating disorders, etc. You must at least give the diet a try. Wait, though, until after the biopsy for the diet change as you don't want to mess up the results.

Good luck and welcome

-celiac3270

[KaitiUSA]

Yes well said....

I am 17 and I had no symptoms until I got mono and then it all went downhill. I went from 110 pounds at 5'3 to 92 pounds at 5'3. Happily now that I have been off of gluten for a little over a year I have gained it all back:)

Celiac is very easily missed. Biopsies are good but can be unreliable to an extent. If your villi haven't been damaged too much then it can show up negative. The blood test counts for a lot I think. I have never seen someone have a positive blood test that has ended up not having it. I have seen however certain blood tests miss it and then they end up having it.

I know that personally when I got off of gluten whenever I had the slightest amount I would get sick almost instantly. I feel more sensitive to gluten then I was when I was on it...except I feel soo much better.

Good luck and I hope you all figure it out. Once you get used to it , it is just a normal way of living life.