My 3-year-old Is Supposed To Have A Biopsy.

[Guest Misalynn]

The pediatric GI has ordered a biopsy and endoscopy for my 3-year-old son. I am rather nervous about this and after reading this board more so.

At 10 months Tristan began having diarrhea with every BM. We took him to the pediatrician to find out what was going on. They told us he must be getting too much fruit juices and remove it from his diet. He was getting at most 1 oz of juice a day diluted in 3 oz of water. They also suggested increasing his fat intake. He did not get any better. They ordered allergies testing when he was 12 months. We had to take him to have blood drawn and the tests came out all negative. We were told after the fact that the allergies tests are not very accurate for a child so young. Stumped, the referred us to the pediatric GI.

At 14 months he began seeing the pediatric GI. They told us similar things as the pediatrician like adding more fat to his diet. They also had us remove milk but no other dairy products, carrots, and corn. After being tested and seen by the pediatric GI they chalked it up to “toddler tummy” or infant irritable bowel syndrome brought on by antibiotics for the chronic ear infections he had between 3 months and 10 months. At 22 months we were sent on our way with the promise that he would outgrow it before he turned 3.

Although it seemed to slowly get better the diarrhea never fully went away. He would have it at least twice a week. At 27 months, the pediatrician had us add back milk and corn with no change in his BMs. As his friend began to potty train it became a problem for Tristan because he just could not control the BMs. By 38 months the diarrhea had come back full force.

The pediatrician gave us a referral to an allergist to see if we could find answers. The allergist was not very professional immediately telling me that I should have my 3 year old tested for ADD. They declared him allergic to mulberries, cats, egg and pork and gave us several inhalers and asthma medication. We were not even there for anything breathing related.

We returned to the pediatrician and saw a different doctor in the practice. I also mentioned that Tristan does not feel when he is having a bowel movement. I was changing him and he began to go. When I talked with him about it he kept insisting that he wasn’t going. The doctor ordered blood work and stool tests. All of the blood work came back normal with no food allergies and not parasites. The celiac test also came back negative. He referred us back to the pediatric GI.

Yesterday, my son is now 41 months, we went to the pediatric GI. He really irked me to some extent. He stated that because all his tests were negative that he needed to do an endoscopy and also biopsy near his colon. I asked about eliminating gluten from his diet and we told, well it couldn’t hurt. I asked about Enterolabs and was told labs like that one and Prometheus are not worth the money. He mentioned that my son may be high on the autistic spectrum.

Tristan has the “allergy shiners” and the hyperactivity that his father had as a child. He father was raised in the UK. He was hospitalized and tested for many allergies that were not showing up in the typical manner. He came out being allergic to so many items that he cannot remember everything from the list. His main reaction to these foods was hyperactivity. Once they were eliminated from his diet he was able to calm down. I find that most doctors in the US do not believe in this. They view my son as a future Ritalin child and that just pisses me off.

Now with this procedure coming up, I am still not sure what it is actually going to do for my son. I read someone’s account on here about their son and it sounded so much like Tristan. We just do not have the money to do the Enterolabs or I would have done it a few weeks ago. I am starting to doubt myself about this whole thing. I keep thinking that maybe I am crazy and he doesn’t have diarrhea. I am worried he is going to go through this experience for no reason at all.

[chrissy]

if your son has food allergies, the biopsies will show eosinophilic cells in his esophagitis, or possibly his colon. people can have eosinophilic esophagitis, and eosinophilic colitis---both of which will show these eosinophils, or "allergy cells" in the part of the body that is being affected by them. your son could also have celiac and just be too young for the tests to be accurate. even if the tests show nothing, at least you will know that there are no obvious allergies (intolerances are a little tricker to figure out) and then can go about the business of trying an elimination diet and/or try him gluten free.

[CarlaB]

Your insurance must be better than mine! My part of the endoscopy was more expensive than Enterolab.

The thing that concerns me, hopefully you heard your doctor wrong, is that the small intestine is biopsied for celiac, not the colon. My tests, including the biopsies, all came out "normal" or "not positive". Unfortunately, the tests cannot prove you don't have it. As it ends up, I have the genes for gluten intolerance. So far, I have not met someone on the board who has a biopsy proven celiac but the gluten intolerant genes. That's no proof that these people don't exist as many who are biopsy proven, don't know what genes they have.

All I can say is what I would do. First, if at all possible, I would get the money together for Enterolab. If I couldn't, I'd still get him off gluten immediately and see what his dietary response is. If the blood work came out negative, I wouldn't bother with the biopsy. That is just my opinion of what I would do, though, so you do what you think is best. I hope others with different opinions than mine post so that you can make the most well-educated decision you can make.

[Ursa Major]

Several things come to mind. Obviously he is eating something he can't tolerate, his diarrhea is the evidence for that. Milk likely is part of the problem, as he got worse a while after it was reintroduced. That he didn't get worse immediately doesn't rule it out.

He sure sounds like celiac disease, or at the least, gluten intolerance, could be the main problem. Just forget the clueless doctors and invasive testing and start the gluten-free diet! It won't cost you an arm and a leg, and your son might just get better without gluten (and casein).

You can try to save for Enterolab while your son is eating gluten-free already, as their testing won't turn negative for a while (a few months) after you go gluten-free. If he responds well to the gluten-free diet, you'll already have an idea if it's worth the money to try testing with Enterolab.

Another thing I would strongly suggest is taking your son to a chiropractor. It sounds like he may have a pinched nerve, which could be easily fixed by realigning his vertebra. It is not normal not to be able to feel when you're going, even if it's diarrhea. How can he get toilet trained, if he can't even feel it?

My oldest daughter's one little brother-in-law kept having accidents, too, because he couldn't feel when he had to go, or even when he had the bm. His mom took him to a chiropractor to be adjusted, and he was trained from that day forward. She felt it was like a miracle. But it was just that that specific nerve was finally released, and he could feel when he had to go!

Boy, when I read garbage like 'toddler tummy' I totally see red! How is it possible for a GI to spout such garbage. It is NEVER normal or acceptable for ANYBODY to have diarrhea!

The 'allergy shiners' are a dead giveaway that your son is eating foods he is very allergic to. Hyperactivity is also often caused by food allergies/intolerances, and so is autism (in which case it wouldn't be true autism, but rather his brain reacting to foods).

Just try the gluten-free diet, NOBODY can stop you! You've tried listening to the doctors too long, it's time you ignore them and do what you know is right for your son.