Diet Changed, Symptoms Not - Any Point In Tests?

[JPSinMN]

I'm a 26 year old mom with a 14 month old son who has had chronic diarrhea for well over two months. Trips to the doctor led to trips to the gastroenterologist (70 miles to their office! Yuck!). They put him on an extremely bland diet - chicken, apples, bananas, rice. It's been over a month now, and things haven't changed a bit. The only result I've seen is that my child who was previously willing to eat anything is suddenly picky, not getting a well-rounded diet, and seems to be pretty much impossible to satisfy, along with a huge increase in his liquid intake.

The doctor we saw is the doctor who performs the endoscopy and colonoscopies for Children's Hospital. When I ask him about the fact that nothing has changed, he insists we need to test for celiac anyway. I'm sorry, but am I missing something here? If over a month of diet hasn't changed a thing, why would I have my kid put under for an unnecessary test? I'm sorry if I offend anyone here, because it certainly isn't my goal, but unless we have a good reason to suspect that the test will actually give us a celiac positive result, I don't see any point in subjecting my son to it, no matter how "safe" it is supposed to be. If it were me, I'd probably do it - it's not such a big deal for me, but for a 14 month old? It's terrifying!!!

I feel the doctor is thinking about his wallet, not what could really be wrong here. The original suspicion was that it was a simple bacterial infection, and that they would try an antibiotic if things weren't better in a week, which I was okay with. Now they refuse to give us the antibiotic without a reason as to why, and insist (no matter what my argument) that we need to do the scopes.

Can anyone help me out - give me any advice? Did anyone not have improvement with diet changes and go through the test anyway? I'm just not sure where to go from here.

Thank you all for your time. It's greatly appreciated. I'm just scared and overwhelmed, and I can't get answers to my questions from the doctor... and I need more information.

[Wolicki]

I am so sorry that you are going through this. With the bland diet, is that everything he was eating? Only those 4 things? The reason I ask is that gluten is in everything! Is it possible he was still ingesting hidden gluten? If he takes meds, did you check the ingredients?

[JPSinMN]

I am so sorry that you are going through this. With the bland diet, is that everything he was eating? Only those 4 things? The reason I ask is that gluten is in everything! Is it possible he was still ingesting hidden gluten? If he takes meds, did you check the ingredients?

The only med he has is sodium fluoride drops, and those are free of gluten. That's literally what he is living on right now, and he's so unhappy. He asks for crackers all the time, or milk, and everything we eat he walks up and points and says "please?" I HATE this!!!!

I don't know whether to continue the bland diet or not, either. I just don't see much point - he isn't worse or better either way.

[Wolicki]

So you've had him on a very strict gluten free diet for one month? If so, I am not a doctor, but I would say it's not working. Has he had the blood panel for celiac disease, or does the doc just want to go straight to the endo?

If he hasn't had the blood test, do that first. Does the doc suspect it's Celiac and that's why he wants to do the endo, or is there something else he is concerned with?

[JPSinMN]

So you've had him on a very strict gluten free diet for one month? If so, I am not a doctor, but I would say it's not working. Has he had the blood panel for celiac disease, or does the doc just want to go straight to the endo?

If he hasn't had the blood test, do that first. Does the doc suspect it's Celiac and that's why he wants to do the endo, or is there something else he is concerned with?

Had the blood panel, but apparently he doesn't produce IgA... so it was inconclusive. They say lack of IgA has nothing to do with it, but I was reading stuff on the internet about how IgA deficiency alone can cause diarrhea and chronic infections. I know that the internet can be dangerous, so I've been trying to stick to webmd, etc.

[Wolicki]

Hmmm. I think if it were me, amd I am NOT a doctor, I would skip the endo. If there's really no proof of any kind that he has celiac disease, then let the poor baby eat what he wants. Keep a very detailed food log to see if different food items cause more reaction than others. Perhaps you can get a second opinion from another PED in your area? Sounds like an intestinal bug of some kind. Has he been checked for candida? There are many threads about the topic in this forum. I would defintely start him on a probiotic right away. Iut may not fix his symptoms, but it will certainly help grow some good gut bugs.

I am sorry I can't give better advice. WE all understand the frustration and misery of not being able to get a diagnosis. Good luck in your journey and I hope your little one is well soon.

[tarnalberry]

Is he still getting breastmilk? If so, he could be getting gluten from you if you're eating it.

For that matter, what is he drinking? He must be putting something in his mouth other than chicken, apples, bananas, and rice, and sodium fluoride drops. (At least water, I suppose! ) Is there gluten in the house he could be contaminated with?

Alternatively, what if all the fructose were removed? (Vegetables ok, but no fruits.)

[JPSinMN]

Is he still getting breastmilk? If so, he could be getting gluten from you if you're eating it.

For that matter, what is he drinking? He must be putting something in his mouth other than chicken, apples, bananas, and rice, and sodium fluoride drops. (At least water, I suppose! ) Is there gluten in the house he could be contaminated with?

Alternatively, what if all the fructose were removed? (Vegetables ok, but no fruits.)

Nope, I didn't produce breastmilk, which was heartbreaking, but at least I can narrow that down!!!

They had him strictly on a special formula (Neocate? I think that's what it was) and water at first, and he would only drink when desperately thirsty. He eventually ended up totally dehydrated (stubborn kid!) and they finally allowed us to give him Silk Soy milk. So that's his option - water, or soy milk.

No other sources of gluten that I can tell.

I'm afraid if I take anything else away from him, he will form a riot. He's a big boy - 32 pounds at 14 months, and was 9 lb 7 oz at birth. He isn't overweight, just looks like a regular 2 & 1/2 year old - tall and normal. They always tell me he's perfectly proportioned when we go to the doctor for height and weight. But he does eat more than recommended for his age, and always has, and he is REALLY miserable right now. Plus he's becoming incredibly picky all of a sudden, and won't try new things, which is horrible to us - he was willing to try anything before! It just breaks my heart.

[JPSinMN]

Hmmm. I think if it were me, amd I am NOT a doctor, I would skip the endo. If there's really no proof of any kind that he has celiac disease, then let the poor baby eat what he wants. Keep a very detailed food log to see if different food items cause more reaction than others. Perhaps you can get a second opinion from another PED in your area? Sounds like an intestinal bug of some kind. Has he been checked for candida? There are many threads about the topic in this forum. I would defintely start him on a probiotic right away. Iut may not fix his symptoms, but it will certainly help grow some good gut bugs.

I am sorry I can't give better advice. WE all understand the frustration and misery of not being able to get a diagnosis. Good luck in your journey and I hope your little one is well soon.

I suspect it's some type of bug/infection, and they had told us if things didn't improve with diet they would give us an antibiotic, but now they are refusing it. (I may have mentioned that before.) I just know that about a week before he got sick we went camping, and went swimming in the lake. They tested for one common infection from lakewater (giardia?), but said there are many more that they really can't test for. With the admission that they can't determine for sure that it is or is not an infection or imbalance, I wish they would just take the cheaper, easier way and give the poor kid a week of antibiotics!!!

He's been on a probiotic for a good two weeks now. Boy, does he fart a lot lately! I read that sometimes that is a side effect - anyone that can attest to that? I'm just not sure if it's part of his problem, or just a result of the probiotic.

There are two other GI ped clinics in the state that I can try - the U of MN has one, and the Mayo, of course. Mayo is quite a ways away, but if we have to do it... so be it. I just need to check - I thought back when we got our insurance that I read that they wouldn't pay for the Mayo. (Which is stupid, since they usually are cheaper!)