11 year old boy with Celiac, vomiting clear fluid at night

[andrialil]

My 11 year old son has been diagnosed with Celiac this summer.  Most of the summer he did well but now  he is having a lot of stomach pain again and he is gluten free. As of now he has constant pain in upper abdomen for 8 days.  He also started vomiting clear fluid mostly in the evenings but he keeps his food down., He says when he vomits it taste like stomach acid and burns his mouth and hurts his throat. He is miserable and his gastro doctor's office didn't even ask to get him in right away when I told them the symptoms of pain and vomiting this week, he has an appointment next week.  I am going to try and be seen sooner but not hopeful they will come up with answers.  He has missed 6 days of school and doesn't have a normal life.  He has had a CT scan, endoscopy and colonoscopy with biopsy, upper and lower GI earlier this year with follow through and so far they diagnosed the Celiac.
The constant pain and vomiting are new, he also feels like he has something come up in this throat sometimes and feels like he can't breathe for a few seconds, that started 2 weeks ago.  I don't know if these symptoms are somehow related as they are new in the last two weeks.  I have read about Eosinophilic disease of esophagus or gastrointestinal, but wonder if that has something to do with his symptoms or is all this part of Celiac with the vomiting.  It is so mystifying and he is not getting better.  I haven't heard of vomiting clear fluid being part of Celiac.  I am so worried sick, I wonder what else the doctors should be looking at.  What can help him right away , should I get a second opinion out of the group as all the Pediatric Gastroenterologists in San Diego belong to one group.  Don't know if I should take him somewhere else for another opinion or see another doctor in the same group.  

Thank you for any guidance.

[CalGal]

Try checking out celiac.org and celiac.com - you should be able to find lists of products that are gluten-free. It's unfortunate, but people with the problem have to be VERY careful with label reading. We just had to change my husband's shampoo back to baby shampoo because the product he was using changed formulation and his head started breaking out. We didn't realize it until the blotches formed and finally put 2 and 2 together after about 5 months - a LONG 5 months!

You can also check out the clanthompson site. They have a really good newsletter that you can get via E-mail and they have a lot of other info that should be helpful.

Make sure any meds your son is taking don't have gluten in them - you'd be surprised at what they use for fillers.

I think the site for the oats is glutenfreeoats.com. I've been buying it in the HUGE size and making everything I can think of. But start out with the small size and make sure your son doesn't react to the protein that's in oats that similar to gluten. And read about the family that started the endeavor - it makes for good reading.

[andrialil]

I didn't know that soap could have gluten, what brands are gluten free?  And what is the address for the gluten fee oats?  I will have to get some.  The doctor we saw yesterday thinks this current problem is a severe acid problem and are treating him with Prevacid and Mylanta to calm his stomach.  We will have to see if they are correct, it can take awhile to see an improvement they said.  I hope they are right and he gets better this weekend, but who knows.  The doctors make educated guesses.

Thank you

[CalGal]

The lactose test isn't the same thing as testing for casein. You can do some reading on enterolab.com about testing for casein. Make sure you read each and every label and worry about gluten in soap, medications, etc. If he has a problem with casein, that's another 'hidden' component in everything imaginable. If you want to make things with gluten-free oats, there's a family business that sells gluten-free oats. You can contact them on-line. We order their product in bulk and make a lot of things my husband loves. Made a batch of oatmeal-honey muffins this weekend and oatmeal cookies are planned later this week. He's like a 'canary in the mine' when it comes to gluten, so we know the oats we order are clean. You might want to consider going that route to give it a try.

[andrialil]

Thank you for writing, he has been tested and they said he doesn't have a reaction to Lactose, would that be the same test as for casein? I make his lunches for school and have tried to keep his diet clean.  I will be finding out today if his gluten test shows he still has much gluten in his system, but I can't understand the evening vomiting of clear fluid.  I hope his doctors can figure it out when I see them today, he is still in pain and not in school.  I haven't given him oats even though he loves them as I am not sure their safe at this point.

[CalGal]

You may want to find out if he's cross-reactive to casein which is the major protein in diary. Some people with celiac do unfortunately have that problem (my husband does). Also make sure that you've pulled him off of all hidden gluten. As you know it's unfortunately hidden in a lot of different things. So if he's nibbling on anything at school that has wheat, rye, barley or oats he may unfortunately be triggering a reaction.

I mentioned oats, too. Oats can be a problem in some celiacs. Docs don't often mention it but it can be problematic.