Still Having Problems

[Ariya]

My son was diagnosed with celiac disease 2 years ago at age 15. He was 5' tall and 70 Ibs. His symptoms disappeared as soon as he went on a gluten free diet. He grew 3" and gained 20 Ibs in just 5 months. He is almost 17 now and is 5'8" tall, but he is still 90 Ibs. Also, his joint pains are back. He has been complaining of joint pain all over his body for the past couple of weeks. He has been on a gluten free diet, and I know he hasn't been cheating since he is very concerned about his weight and height. We have made an appointment with a GI again. Has anyone been having problems with joint pain and weight after going on a gluten free diet?

[Ursa Major]

Your son may also be intolerant to dairy and/or soy, which could very well be the cause for the joint and muscle pain. Other food intolerances are possible as well, especially the nightshade family, other grains, eggs or legumes.

Check out the links in my signature (especially the lectin one, as the lectins cause joint pain for me, salicylates cause muscle pain) for more information, to see if you think any of the foods that used to cause my excruciating joint and muscle pains may be a problem for your son.

There is also the possibility that he is suffering not only from celiac disease, but something else as well, like Lyme disease, which causes that type of pain, too.

[lonewolf]

Ursa gave you good advice. I get joint pain almost immediately after eating dairy or soy - and I've heard from others that it's not uncommon. Check out the information that Ursa suggested and maybe you'll discover something. It's really common for Celiacs to have other food intolerances that show up AFTER going gluten-free.

[tarnalberry]

Take a close look at all the foods and other contamination risks that could be still glutening him, and consider other food intolerances as well - as have been suggested. It may take a while to work through, but hopefully you'll get there. Don't give up on working with your doctors to figure this out as well - pursuing multiple paths at once may get you to a solution quicker.

[GFBetsy]

Another thing to look into is the possibility that he is still getting small amounts of unintentional gluten - from toothpaste, using a contaminated toaster, etc. One of the ways that a doctor can evaluate this is to re-run the celiac blood work - if his TTG levels are still high, it is an indication that gluten is somehow sneaking into his diet.

Also, ditto on everyone else's advice.

Ahhhh . . . edited to say: Darn it, Tarnalberry! You beat me to it! I'll leave my response anyway, though, just to make myself feel useful!

[rez]

Have doc test him for Lactose intolerance. IT's easy, just a Hydrogen breath test. My son was positive. Can't tolerate any milk, even in a piece of chocolate. Good luck!

[tarnalberry]

Additionally, you might want to check whether or not he's getting enough calories - he might be concerned enough about food that he's not getting as much as he needs right now. His needs might be particularly high, recovering from a number of years of malabsorption.