Looking For Answers For My 4 Year Old Son Please

[Chako]

Hello. I am new to all this so please bear with me if it is a tad long. And I apologise for the TMI as well since it may be a bit graphic.

My son was just turning 2 years old when horrid diarrhea hit and did not abate for months. Since that time his stools have always had a wretched stench to them (one would think you would get used to it in time but you do not! If you touch any of it you reek yourself for hours afterwards despite washing repeatedly). They vary from lumpy to watery, streaks of mucous are frequently evident, sometimes sticky, sandy grains of rice or sand seem to show up. They are sometimes very dark (chocolate pudding) to very light yellow or khaki or mustard yellow. Often they have green in them as well. In the begining he had loads of stools and now they are usually from one a day to one or more every few days.

We were sent to a pediatrician with an interest in GI and followed him for 15 months. I had quite a few issues with him in that during the first visit he labelled my son as a "stool holder" despite the wicked non relenting diarrhea. We followed his diet changes and he did start to eat more (he was down to eating nothing to a tablespoon of food a day back then) but the stools continued. Then we were to give him tons (and I do mean TONS) of mineral oil and that did nothing but give us lots of mineral oil leakage. He was in pain writhing around and there was nothing to console this child. Enemas, suppositories, lansoyl, and lactulose all did nothing. I got fed up as he never tested him for anything and my ped found his SED rate to be chronically elevated (even when "healthy") and he was sick so often. The illness could be part of his GERD issues as he has had recurrent pneumonia last year.

Now we have been sent to a new GI and she is wonderful and wants to scope him in September. We saw her last week and she has begun already lots of bloodwork which all seems immune and celiac heavy for testing. She did not like how pale he is nor his SED rate and spent lots of time looking at his nails (any idea why?)

We have done so many things in terms of diet for him and last January we finally did a multiple elimination diet which gave us a few almost normal poops, or at the very least less offensive. We slowly introduced foods again and found he reacts to corn, soy, milk (has a low RAST to it anyway and has an epipen for peanut and treenut allergy), citrus so some degree but we still have him on it (running out of foods!). This left wheat and he is on it.

My question is whether or not I would have time to take him off of wheat long enough to do a trial before the scopes and not muck it up to see if this is the direction we should be heading in? I am going to try him on some of the other foods again as her comment was he is off 4 main groups and is still reacting so it does not matter right now. Any suggestions?

He has always been a good height and good weight but never ever fat or even chubby. He always looks thin or slender and stalled for one year on weight. I would have to see where his height is now but I am sure he has slowed right down there but is gaining some weight again. Celiac was not something I had thought of as he is not short at all but the GI says he does not have to be to suffer from it.

I have so very many questions and although I am tempted to ask them all here I will refrain for now. I am so glad to find this board and look forward to some answers and help as we try to work through this. It has been frustrating and very overwhelming at times. 2.5 years and counting has been a wee bit unnerving!

Thank you in advance!

I am sorry I just realized I posted this in the wrong forum! Eek. I meant to put it in the other one. Apologies.

[momothree]

I'm sorry that I will probably be of no real help to you, but I had to write anyhow. My daughter (19 months old) has had "sandy" poops for about 10 months. I have spoken to my doctor and pediatrician, I have spoken to the health unit, I called (on numerous occasions) dial-a-dietician, and nobody has a clue what the cause is. As a matter of fact, the response I get is total confusion etc. I have clocked major hours on the internet and can find nothing that sounds even remotely similar. You are the first person to ever mention such a thing.

My babe's brother (12 years old) was just diagnosed with Celiac, so I am suspicious. I am looking forward to seeing if anyone on this board has heard of such a thing.

Also, when my son was at Children's Hospital, the GI doc looked at his fingernails too. He mentioned that they were slightly clubbed. I asked him what that meant, and he said that it can be genetic, or indicate possible heart or lung disease, or gastrointestinal issues. When I checked it out myself on-line, I found articles that confirmed it, but they said mostly Crohn's disease. I still don't know if his fingernails are in any way related to his Celiac or not. It is supposed to clear up in patients when they are treated for their Crohn's, so I guess we will see if things improve for him after a while of being on the Gluten Free diet.

I hope that someone more experienced with these issues (we are just new to it ourselves) will be able to shed more light on things for you. Good luck.

[e&j0304]

I just wanted to say that my gluten intolerant dd used to have sandy, grainy stools and NO dr could ever say what caused that. Now that she's gluten free it cleared up. I don't know if that would have cleared up on its own or not...

I wish you the best of luck. I hope you find the answers you're looking for.

[JodiC]

I'm sorry to hear about all the problems your son is having. First of all don't take him off of wheat before the scopes. Gluten has to be present when the scope is done. You seem to know some of the allergies he has, but I was curious if he ever had the ELISA test done? This will show all the allergies for sure. The reason they are looking at his nails are for the color of the skin under them, the condition they are in, and the shape and texture of them. If they are pale, you assume anemia. If they are purple or blue you assume lack of oxygen. etc... Another thing I would ask if they can schedule the scope sooner. I don't think it is fair to put him through 4 months of pain and torment. If he truly has celiac, the damage being done is not worth the wait. If your GI won't listen find another one. (make sure they are very knowledgable regarding the disease). You should be able to find alot of answers on these sites. Good Luck!!!

[tammy]

Please know that I do think you are on the right track with your new doctor. I am not an expert nor do I have children however, I do not think that you should refrain from wheat at this time since that could botch up the whole works however, ENTEROLAB offers several non-invasive tests such as stool samples and gene tests which can be performed without a gluten challenge.

I suggest that you start there for your peace of mind. Although no mainstream doctor would recognize these tests they should springboard you into the right direction. I used them and they agreed with the clinical suspicions of my nutritionist. So I do believe they have weight. Without the diagnosis it is very hard to know which treatment is best for your son BUT the good news is you found this site! More good news, he is very young and will recover. I suspect that he does have a gluten sensitivity which I think (in my personal experience) is a deviation from celiac and may NOT be picked up by an intestinal biopsy.

I am not completely opposed to your son having a scope but what is she looking for?

But in the meantime you and your son need to see more normal stool right? And does he have any discomfort?

Keeping your options open and moving forward keeps you going...

Best Wishes to you and your boy

[Ursa Major]

Why is your GI waiting until September before doing the biopsy? In my opinion, he should be tested immediately. And then, even if it is negative (there are MANY false negatives in children under five, even if they have celiac disease), you should definitely try the gluten free diet (and that means to take him off rye, barley and oats in addition to wheat). Your story sounds very familiar, many people here have gone through the same thing.

If the blood tests show that he is gluten intolerant, he has celiac disease, no doubt. There can be false negatives, but not false positives. It isn't fair to you or your son to keep him ill all summer, if he could possibly be well on the gluten free diet.

[kenyonsmommy]

Hi.

Although my saga certainly has not been as long as yours, i understand some of it. My son, who is 2 1/2, was just diagnosed two weeks ago after about 5 months of vomiting, severe weight loss, anemia(he was pale, lethargic, miserable), and the worst stool i have ever smelled. It was just as you decribed, it varied in color, was mostly watery, sometimes lumpy and was seedy. It reminded me of breastfed baby poop sometimes, except for the horrible smell. They put him on prevacid and reglan, which seemed to help for a little while, not long. He had a positive blood test and a positive biopsy not long after. i would not change his diet before the scope. they told me that it only takes about 5 days for their intestines to heal at their age, but it is unknown how long it takes for the damage to get to the severe point once you start eating gluten again. Also, my son is not short, he is tall and skinny for his age, even though he has not been growing much over the last few months. I am hoping he will gain it back now that he is on the mend.

Good luck with everything

Tricia

[Chako]

First of all THANK YOU for all your responses! It is wonderful to know we are not alone with this. We did not get diagnosis of GERD for my kids until my youngest hit the complications and was 14 months old. The one with the bowel problems is my middle son and I find things move way too slowly here for diagnosing at the best of times. I am in Canada and the average wait time for GI at the hospital is 10 to 12 months. Once I asked to leave the quack I was with we waited just under 4 months to see this new one at the hospital. Although our scopes are in September it is 3.5 months of waiting again and I have to tell you that the lady who came after me for booking was put in the end of December so I count ourselves as fortunate.

The sandy stools are such a mystery to me. No one has been able to tell me what they are either and I did not get a chance to ask the GI unfortunately as I would really like to know. Tonight he blew out again and the mucous is everywhere and lumpy. I am now taking pics for the GI (her request) and wonder how this kid can function at all with this stuff in his gut.

Often he literally writhes in pain, screeching his tummy hurts (and he refluxes too). It is so awful to feel so very helpless to comfort him as he can be blinded by the pain and completely inconsolable and this has been the "norm" for 2.5 years. If he is given a clear trigger like Milk we can expect a reaction within 15 to 30 minutes and the blowouts and pain continue for 5 days. Not good. Corn and soy seem to take a little less than 24 hours to create a similar problem. It is awful to say that he has a horrid stool to begin with but somehow they get worse and much more frequent with a trigger. He has had skin prick and RAST done and the peanut/ treenut showed up as did a very low RAST to milk but he had been off of it for over a year at that point anyway.

What is clubbing of the fingers? **off to look that up**

I would love to have him scoped sooner but the idea is to wait until the bloodwork and celiac testing comes back first and the latter will take 6 weeks approximately (one month of testing but possibly a 2 to 4 week stall to collect enough samples to go to the lab at once).

I am so glad that I found this site! Thank you!

[Ursa Major]

Okay, you're in Canada, too, I understand now. Good old 'free' Canadian medicine isn't so great, is it. I need to see an orthopedic surgeon for a bad foot. I got referred in May 2005, and my appointment is in August 2006! A wait of 1 1/2 years, it's outrageous. They don't care a hoot about people suffering (and often dying) as a result of those long waiting times.

Also, it sounds to me like your middle son isn't the only one with celiac disease. Are you having the other ones tested as well? Gerd for little children is not normal, and it's likely that it is caused by celiac disease.

[inquirer]

Hi, this is my first time logging on as I've been lurking for a while. My husband has been very ill the past six months with an autoimmune disease causing pulmonary fibrosis, vasculitis and other horrors. To make a long story short, I made a connection between a possible gluten sensitivity triggering at least part of his problems. I knew if we went the traditional route it could take forever and they would probably botch the testing. So, I had my husband tested by Enterolab. He tested positive for gluten sensitivity and has two gluten sensitive genes which make him more prone to having severe reactions to gluten. We got the results back in about two and a half weeks. Confronted with the results, my husband who had been halfheartedly following a gluten free diet committed 100% to gluten free. (My husband did have his primary doctor do the celiac panel but the first part of the panel came back negative and the rest of the test was cancelled-they botched it like I knew they would).

I work as a medical interpreter and spend a lot of time with doctors and I have learned a few things. They do not know everything! It's very hard to see someone you care about suffering and you want to put all of your trust in this professional. But they make mistakes, their staff makes mistakes, the lab makes mistakes. Doctors often seem to work in little tiny niches and often don't see the big picture. If something doesn't feel right to you, you have to trust your instinct and find another doctor and another one until you get the help you need. Maybe you have to leave the safety of your HMO and pay out of pocket. Maybe you have to go to another country or state to get help. Maybe you have to take a mortgage out on your house to pay for it. Maybe that doesn't seem fair. However, if you get the right help, you might actually save money in the long run.

In reference to your comment about your son being allergic to everything. There is a very good book by Richard Firshein, D.O. called the Nutraceutical Revolution. He talks about how if the gut becomes irritated by something (gluten maybe!), the gut becomes permeable letting food particles cross through. This is called a leaky gut. Often times, you then develop all sorts of allergies due to this. This may be one of the reasons why your son is reacting to so many foods. You might look into the Special Carbohydrate Diet website. They have a diet for helping to restore the intestines. Also, the Nutraceutical Revolution talks about specific supplements that can be taken to help heal the gut and also the resulting inflammation throughout the body. It might be very worthwhile to step outside of the box and find a naturopath or an integrative medcine specialist (they are M.D.s that practice traditional and holistic medicine). You are taking the right step in the right direction by getting on the internet and getting your own information (always taken with a grain of salt). Trust your instincts and I'm sure you will be able to help your son get better!

[inquirer]

Sorry the diet was the Specific Carbohydrate Diet not Special Carbohydrate. Check out Breaking the Vicious Cycle. I know there is a group here that is following it.

[Chako]

Oh, I SO AGREE about doctors working in niches and not seeing the entire picture! It is so very frustrating. Nowdays it is up to the patient or advocate to be proactive and well versed themselves for what may be wrong. My Mother is a stroke survivor and I can not tell you how many times I have had to step in and direct the doctor to look in a direction for her health. If she were Alzheimers or such they would be managing her spectacularly but as she is post stroke and rather young yet they just give her extra pain meds and do not bother to figure out what the problem is.

Spending time on the internet and seeing how very fast people in the USA get care is astounding to us Canucks. Really Ursula, many would think you are getting seen FAST! lol Sorry, it is not funny to have to wait like that is it? There are some real quality of life issues that need to be addressed. My youngest son had an ENT appointment booked just slightly over a year ago and we received a phone call it was cancelled and moved to August. Thankfully, I do not think he is urgent though it is to follow up with his GERD and recurrent infections.

I really do not have any option other than going to the US or trying out this Enterolab I think, or wait for the scopes and bloodwork. Does Enterolab cover Canada too? I took a peek last night but did not see if they do.

The Neutraceutical Revolution is not one I have come accross yet but will take a peek for as I just figured out "leaky gut" last night too! We are using the diet found in the Doris Rapp book "Is This Your Child" but have had to tailor it over the months to attempt to keep some nutrition in him. Really I am thinking as I see so many get markedly better after a couple of weeks off gluten of trying him off for 2 weeks and play it by ear. We can go back on again for the scopes and hopefully not have it effect the scopes as they are so far away. I just see so very much of him on this site and it is frightening to me that he has gone so long in so much pain. I am learning so very much here and thank you all.

[Guest nini]

IF you are going to wait for the scope then do not take him off wheat/gluten yet, it will mess up the results.

IF you would rather get onto the business of getting your child well, try the diet and see if it helps. The diet, in my opinion (and the emerging opinion of some of the leading Celiac experts) is the most valid diagnostic tool. If it is something else besides Celiac, they can continue to look for that while your child is gluten-free.

My experience is that the testing is extremely unreliable in children under five, and unreliable in everyone else too. If positive it can only confirm a dx of celiac, it can NEVER EVER rule it out and any Dr. that tells you that it can rule it out is operation under outdated and dangerous information.

[inquirer]

Oh, I SO AGREE about doctors working in niches and not seeing the entire picture! It is so very frustrating. Nowdays it is up to the patient or advocate to be proactive and well versed themselves for what may be wrong. My Mother is a stroke survivor and I can not tell you how many times I have had to step in and direct the doctor to look in a direction for her health. If she were Alzheimers or such they would be managing her spectacularly but as she is post stroke and rather young yet they just give her extra pain meds and do not bother to figure out what the problem is.

Spending time on the internet and seeing how very fast people in the USA get care is astounding to us Canucks. Really Ursula, many would think you are getting seen FAST! lol Sorry, it is not funny to have to wait like that is it? There are some real quality of life issues that need to be addressed. My youngest son had an ENT appointment booked just slightly over a year ago and we received a phone call it was cancelled and moved to August. Thankfully, I do not think he is urgent though it is to follow up with his GERD and recurrent infections.

I really do not have any option other than going to the US or trying out this Enterolab I think, or wait for the scopes and bloodwork. Does Enterolab cover Canada too? I took a peek last night but did not see if they do.

The Neutraceutical Revolution is not one I have come accross yet but will take a peek for as I just figured out "leaky gut" last night too! We are using the diet found in the Doris Rapp book "Is This Your Child" but have had to tailor it over the months to attempt to keep some nutrition in him. Really I am thinking as I see so many get markedly better after a couple of weeks off gluten of trying him off for 2 weeks and play it by ear. We can go back on again for the scopes and hopefully not have it effect the scopes as they are so far away. I just see so very much of him on this site and it is frightening to me that he has gone so long in so much pain. I am learning so very much here and thank you all.

I don't know if Enterolab covers Canada. Worse come to worse you can plan a visit to the U.S. and have your son produce a stool sample here and send it off. Maybe they could send the box to your house and then you could travel to the U.S. I believe the delivery service only picks up on Monday through Wednesday to ensure delivery to the facility during the workweek. Another option might be having your son produce his sample, freezing it, keeping it frozen and sending it to the U.S. where it could be repackaged and sent on. Hopefully they do have a delivery service to Canada so you won't have to go through so many hoops! The $360 or so that we spend for the testing was the best money we spent.