Help Diagnosing My 5 Year Old Daughter!?!?!?

[coralex]

I'm new here and have really appreciated the information I've read so far. Everyone out there seems to know a lot about this disease, we've only been researching it for about a week! Here's the situation - our 5 year old girl has been having chronic diahhrea since she started solid food. In hindsight we should have done something about it sooner but adjusted to life with her "loose bowels". Fun, huh? She would have totally explosive movements on the toilet - my Mother in law actually phoned me completely worried that something was wrong when the kids were staying with them for a few days. I didn't bother to mention it because we were just used to it. Lately it's gotten worse, to the point where kindergarten started a month ago and she's already missed 3 1/2 days because we can't leave the house. Yesterday morning she was doubled over on the toilet 8 times from 6am until when we would have had to leave for school about 8:40. It seems to come and go, but it's usual for her to have a poop every single time she goes to the bathroom, and all her BM's are loose and fall apart as soon as they hit the water, even if they're a manageable amount during the day.

We've tried taking her off all dairy for almost 3 weeks which did nothing. She had some bloodwork done last week which came back completely normal, so now I'm worried we're not going to be able to pinpoint anything and just have to deal with this. If I had read this site last week I would have photocopied the form beforehand so I knew what was on the test, but I didn't. She is on a waiting list to see the Pediatric Gut Doctor (easier to spell) but that will take a couple more months.

Does it seem like I'm rambling and not making any sense? We are just getting so frustrated. It's so hard to see your little one grab her stomach and say "tummy attack" which is her way of saying it's happening.

I guess this is what I want to know -

- all you parents who have said that it's common to get false negatives in children, how young are the kids? Is 5 too old for a false negative?

- for those of you with false negatives, how many of your doctors also requested the biopsy? Should I expect it or ask for it? Your comments reassured me that it's not that bad, and I'm willing to put her through it to get to the bottom of this. (No pun intended).

- She's thrived - off the charts for height and 49 pounds, although she lost 3 pounds in one week about 3 weeks ago because she couldn't eat anthing because of the diahhrea. She's gained some back now, thank goodness. Has anyone else's kids presented with only diahhrea and rash symptoms? She also had recurring ear infections as a baby and toddler. Other than that she's a dream child, sleeps good, has never had a tantrum which means we'll probably pay for it when she rebels as a teenager, is bright and makes friends easily.

Again, sorry to be so vague. I just don't know what to do, as you all know it's just so frustrating. I feel like all I do is talk about Alex's poop, we even have a poop journal for when we see the next doctor. And like I said I'm worried that they're not going to find anything and we'll just have to deal with chronic diahhrea, as my doctor said. So we're just trying to self-educate ourselves. I was tempted to put her on a gluten-free diet for a week to see what happened, but also thanks to your wonderful information that wouldn't do anything anyways because it'll take longer than that to improve and I don't want to mess with the next round of tests. It's not that I want her to have this, I just want an end to all of this and I would rather it was a dietary restriction than something else that required tons of side-effect inducing medications.

Thanks to all of you for reading this and any information you could give me would be so helpful. It's going to be a long wait!!!

Have a great evening,

Charmaine

[skoki-mom]

Good luck with your daughter. I have 2 girls ages 7 and 5, so I know how badly you feel when your child is ill or in pain. Because I conclusively have celiac disease, my girls were screened this past fall. False negatives are much more common in children under the age of 2. Because lab work is a little traumatic in children this age, my girls both were tested for both the anti-endomysial antibody and the tissue transglutimase. Both are quite specific for celiac disease, and a + on both would have been quite conclusive, likewise a negative on both. My own GI had previously told me he would not recommend a biopsy in this instance (if either or both of them had + bloodwork) given the high specificity of those blood tests and the positive family history (my sister and I both with celiac disease). Having said that, false negatives can happen, they will probably be tested again in 5 years, or earlier if they show symptoms, just to keep track of them. Even adults can have false negatives, so while a negative is reassuring, it really can't put the lid on it forever unless you find another reason for it.

[Guest nini]

My daughter had the chronic diarrhea since introducing solids and ear infections etc... she was also small and had a bloated belly and had the horrible temper tantrums... anyway... testing is time consuming and expensive, the diet is challenging but easy once you get the hang of it.

My personal recommendation FWIW is to go ahead and try the diet. IMHO if she improves on the diet then you don't need further testing. Granted one week may not be enough, but then again, one week was all it took with my daughter...

Get your pediatricians support on trying the diet though. Let them know you want to try this as it's less costly and invasive then blood tests and biopsy's. From what I've learned Celiac is only the tip of the iceberg in Gluten intolerance, and if she responds to the gluten-free diet then VIOLA! She's gluten intolerant and you have your answer. You don't need to get hung up on whether it's celiac or not, because if she doesn't have it now, it could still show up later, but if she improves off of gluten then you've saved her a lifetime of discomfort from gluten containing foods. JMHO.

After reading Dangerous Grains I'm convinced that NO ONE should eat Gluten.

[coralex]

Wow, this is a fantastic site - thanks for your replies already. I'm leaning towards trying the diet for a short time, anything to find relief. I took her to school today, but am half expecting a call. She was in the bathroom with an attack at 4:00 this morning but seemed clear this morning, she's already missed so much so I thought we'd give it a try. Hope she makes it. It's only a 5 minute walk so not too bad, need the exercise anyways...

Thanks to all for taking the time to read and reply. I'm sure you all know how hard all the uncertainty is on a person, the waiting and wondering and fretting. And like I said my biggest fear is that they're not going to find anything and she's going to have this "problem" for life.

[Jnkmnky]

If you feel you need the testing or you won't be satisfied without a dx, then do not stop feeding her gluten until AFTER you have her blood drawn. The test will be inaccurate if she is on a gluten free diet when her blood is taken.

Can you imagine yourself having diarhea that many times a day? Can you imagine how your rear would feel going through that acid and wiping over and over? I don't think as an adult, I could handle it, then have to walk to school or even have to sit on a hard seat and pay attention in class. I think you're expecting too much from her because kids will do what we ask because our expectation demands it.

I'm not trying to be mean, but you yourself said you guys were getting used to it. Easy for you to do. I feel sorry for her. Waiting for months for a pediatric G I doesn't seem like a reasonable option. Please have her blood drawn asap. Have a full Celiac panel run. Put her on the gluten free diet asap. See if it helps. She needs to be a healthy, happy, active child. You know, if you can seriously live without a "proper" dx, then by all means, begin her on the diet now and see if it helps. You will have to realize you will be chosing to trust a dx made this way and will have to face off with others who think you should have had a "proper" dx. If you're strong enough to deal with those who will question you, go for it. In light of how uninformed most drs are, I am all for this kind of dx. I believe the point will be moot soon enough. Research dollars are pouring into celiac research...finally... and I believe that in less than a decade, there will be a test that can be done to confirm or rule out a dx of celiac disease withOUT needing gluten in the diet.

I will happily post all the food ideas you need to this diet off and running if that's the way you choose to go.

[Jnkmnky]

and she's going to have this "problem" for life

She will have this problem for life if it's Celiac and it goes undx for too long. It sounds horrible, and it is horrible. If you screw up your system for too long, permanent damage occurs and other more life-altering disease labels are attached. When a person, no matter how young, is having diarrhea over and over, something is terribly wrong and needs to be fixed. Most drs do not consider Celiac. They end up treating symptoms without ever really understanding the cause. If you've been reading here, you know that celiac is probably the main cause of Ibs, Crohns, Ulcerative colitis <--truely terrible, and more. I have three friends who married doctors. NONE of them know about Celiac disease. My son's newest doctor, an osteopath, is also clueless. I've NEVER had a dr who knows about celiac. My son has had...6 doctors in 7 years. It's shocking.

[coralex]

If you feel you need the testing or you won't be satisfied without a dx, then do not stop feeding her gluten until AFTER you have her blood drawn.  The test will be inaccurate if she is on a gluten free diet when her blood is taken. 

Can you imagine yourself having diarhea that many times a day?  Can you imagine how your rear would feel going through that acid and wiping over and over?  I don't think as an adult, I could handle it, then have to walk to school or even have to sit on a hard seat and pay attention in class.  I think you're expecting too much from her because kids will do what we ask because our expectation demands it. 

I'm not trying to be mean, but you yourself said you guys were getting used to it.  Easy for you to do.  I feel sorry for her.  Waiting for months for a pediatric G I doesn't seem like a reasonable option.  Please have her blood drawn asap.  Have a full Celiac panel run.  Put her on the gluten free diet asap.  See if it helps.  She needs to be a healthy, happy, active child.  You know, if you can seriously live without a "proper" dx, then by all means, begin her on the diet now and see if it helps.  You will have to realize you will be chosing to trust a dx made this way and will have to face off with others who think you should have had a "proper" dx.  If you're strong enough to deal with those who will question you, go for it.  In light of how uninformed most drs are, I am all for this kind of dx.  I believe the point will be moot soon enough.  Research dollars are pouring into celiac research...finally... and I believe that in less than a decade, there will be a test that can be done to confirm or rule out a dx of celiac disease withOUT needing gluten in the diet. 

I will happily post all the food ideas you need to this diet off and running if that's the way you choose to go.

<{POST_SNAPBACK}>

Well, we have had her blood drawn and as I said the tests all came back negative. As far as waiting for the pediatric GI may not be reasonable, but there's no other option - there's only one in our city. Unfortunately we did get used to it, but we are now trying to do something about it and I would appreciate support, not condemnation. Believe me, I love her more than anything and I feel sorry for her too. If I could go through this for her I would!! As for the comment I made about her having this "problem" for life, I was referring to chronic diahhrea, not Celiac. I wish there had been more information available a few years ago - I only started looking into it after hearing about it from friends and then putting two and two together...

I've always cleaned her up with wipes too, so her little bottom isn't actually in bad shape. I've talked extensively with her teacher too, so as I said any sign of trouble and I can be there in 5 minutes.

Considering that she's already had the bloodwork done, you mentioned that I should put her on the diet. I'm all in favor of that, but would a short time do any good? She has the appointment coming up in December, so if I tried it for a couple of weeks would it interfere? You're right about one thing - if it works then that's good enough for me. Anything to help her. I know my mother has some intestinal issues, and she mentioned that her mom does too, but I'm not sure how that affected her during her life because she abandoned me when I was 5 and I didn't see her again until I was 25. Over the last 10 years we've been getting to know each other again, which is great but we don't see each other that often since she lives in a small town in Australia. I didn't realize until last year that she had problems. It's not something people like to talk about!!!

Why don't doctors have more information about this? It's so serious, why don't they treat it that way? It's mind boggling. Actually it's frustrating and maddening.

Have you had much luck in regular grocery stores for gluten-free items or do you have to go to specialty stores? We'll be in the city tonight or tomorrow and that's my first stop. I've heard horror stories about the bread - do you have any good recipes? Anyways, thanks so much for your offer to help with the diet and I'd appreciate your input there. This is going to be a huge learning process! But also like I mentioned I'd rather modify her diet (and ours, as much as we can to support her) than put her on horrible meds.

[Jnkmnky]

First off, I'm not condemning you. On an internet chat site you'll find many personalities, and mine is somewhat abrasive, yet always well intentioned. I read that you had bloodwork done, was it a full celiac panel? That wasn't clear to me. Also,

As for the comment I made about her having this "problem" for life, I was referring to chronic diahhrea, not Celiac.

I was referring to having chronic diarrhea as well. Celiac is for life but can be managed so that there are no symptoms. You can destroy your system if you have undx Celiac and the end results are horrific, at best. Chronic diarrhea is a distinct possiblity if celiac goes undx for too long.

If you begin her on a gluten free... that's 100%gluten free... diet today, you just might see results within a week due to her age. Many younger people who go gluten free as a result of having Celiac, show amazing improvements almost immediately. My son was near death when he began the diet and was an entirely different human being 4 days into the diet. I'm not over-stating the improvement. If anything, it's an understatement. The trick is to be vigilant...100% gluten free. I would recommend 100% dairy free for the first 6 months as well. My son was dairy free for the first 9 months as his villi took that long to regrow. I know because we gave him a few sips of milk at 6 months and the results were pretty gross.

You can find excellent sandwich bread at this site:

Open Original Shared Link

the donuts, pizza crusts, bagels, chocolate chip cookies and white tapioca bread are all great. The cinnamon raisin bagels are not that good.

Tinkyada pastas are in most health food stores. Do you have a Wholefoods, etc nearby?

Here is what she can have from a regular store:

Oscar Mayer hot dogs and bologna

Hormel salami

Boar's head brand cold cuts- have deli clerk clean slicer first

Lays Stax potato chips

Manwich sloppy joe sauce

Post Fruity and cocoa pebbles

eggs

bacon

ham (check ingredients)

meat

veggies

fruits

nuts

fritos corn chips

Taco shells

Old el Paso taco sauce in a JAR only

refried beans

beans

rice

potatoes

fish

corn tortilla wraps

corn tortilla chips

Classico alfredo sauces- yes, even the creamy ones!

Emeril Lagassi's sausages. The chicken apple were the only ones we liked

corn starch for thickening

prego spaghetti sauce

garlic salt

marshmallow fluff

peanut butter

jelly

Hormel pepperoni

Breyers ice cream !!~ unless it says malt or barley, of course~~!

some meals to consider

Tacos

nachos

split pea with ham soup

chicken soup *wholefoods carries broth and boullion that is gluten free.

beef stew

Kinnikinnick pizza

lentil soup

stuffed green peppers

chicken, mashed potatoes, veggies ~ simple meals like that

deviled eggs

baked potatoes -forego butter and sour cream while dairy free.

Dairy free doesn't mean Casein free. My son had no problems with casein while lactose intolerant. Your's may have issues, though. I don't know.

Just read every thing for those "forbidden ingredients". If you're not sure.... Just forget it until you confirm the gluten status. It's not worth it and will negate all your efforts. A Celiac's body does NOT negotiate the amount of gluten ingested. The immune system response is full and complete no matter how SMALL the amount of gluten ingested was. Get her her own jars of stuff... peanut butter, jelly, cream cheese...etc. NEVER "contaminate" her jars with a dirty utensil. Do not stir your pot of noodles with the same spoon you stir her pot of gluten free noodles. This will negate your efforts. Seriously. Wash your hands with water and dry with a disposable paper towel before touching/preparing her foods to avoid cross contamination. Keep her foods on a plate, off of a possibly contaminated counter.

Send a lunch box to school with her "class treats" in it. That way if the class is having a treat, she can go to her box and pull out a gluten free treat and join in on the eating fun. Some treats are: snickers bars, tootsie rolls, small bags of potato chips, mini hershy bars, peppermint patties, hershey's kisses, Hunt's chocolate, non-refridge pudding cups, box of raisins <<-- actually, she might not think of that as a treat M&M's, ..... Read here about candy. SOME HAVE GLUTEN.... TWIZZLERS HAVE GLUTEN, MILKY WAYS HAVE GLUTEN~~ weird stuff has gluten. Be vigilant and ask first always. Ask here, call the company.... or just don't let her eat it. Period. I've been doing this for 41/2 years. I still check EVERYTHING.. even the things I know we've had before. Unless it's from whole foods and says GLUTEN FREE on the label, I check. These "regular" food companies are under no obligation to keep ingredients the same. They change with the wind as prices in certain ingredients change. MODIFIED food starch is ambiguous. MUST BE CHECKED with company. Unless it's Kraft. They will disclose the source of the MFS so you will know if it contains gluten. Tired yet? I am. Are there any questions you want answered? Do you plan to impement the diet rather than seek out "expert" medical advice? I hope you do. If she has celiac disease, you will be stopping her problems cold.

[Jnkmnky]

https://www.celiac.com/st_prod.html?p_prodi...-17105009343.ab

https://www.celiac.com/st_prod.html?p_prodi...-45105009343.44

Here are the safe and forbidden lists to assist you with shopping.

Open Original Shared Link

Chebe is great and versitle. Shipping is very high. But chebe is very good. Your financial means will determine if you can buy it or not. HOPEFULLY, you can find it in your local healthfood store. That would be nice.

Also, at the site where you order chebe, there's these things called Breakbars... they're gluten free kit kat bars. Yum. Good for having on hand if you go trick or treating. You can trade with her for gluten full candy. Also goes well to school in the gluten free treat box for class parties, etc.

[coralex]

Wow, thanks for all that info - I'll have to read it more in depth when I get back from the school. I can see that I'm going to have to be absolutely vigilant reading labels. I'm cupcake mom for the class birthday parties, so I can just make a special one for Alex.

This afternoon there's a special assembly that I'm going to go to because I think her 7 year old sister is going to get a reading award. Plus then I can take Alex to the bathroom if she needs it, so her teacher doesn't have to and I can also monitor the contents if they happen. Unless she doesn't feel well when I pick her up, then I guess I'll make her a bed on the couch and stay home!!

But as for now I have to run - and thanks for the help! I'll be back on later. I just talked to another mom from Alex's class - her daughter is seeing the same specialist as Alex will be going to. I asked her for the number in Edmonton, they had been there seeing a specialist too and maybe we can cut down the wait a bit. I'll call them this avo. It's only a 5 hour drive and worth it if it's shorter. I wonder if I can ask her doctor to mail me the bloodwork results?? I'm not sure what exactly was tested for - I wish I had read up on this before so I could have copied the form!!

Anyways, I have to get the girls so I'd better scurry.

Charmaine

[Merika]

I'm cupcake mom for the class birthday parties, so I can just make a special one for Alex. 

<{POST_SNAPBACK}>

Actually, that's the perfect situation for your dd, shoud you want to have her go gluten-free. Just order a mix of gluten-free cake batter, and make *everyone's* cupcake gluten-free. They'll never know

Also, if you're going to have the 'scope done, don't go gluten-free until it's over. In the meantime, you could familiarize yourself with specialty items at your local store or online, and try some. Just keep her eating wheat every day until the test, and add in some gluten-free stuff.

Merika

[2Boys4Me]

Charmaine,

When/if you go gluten-free, just remember that most of the people here are from the states, so not all the items they say are gluten-free will be in Canada. I think that Canadian Snickers are NOT gluten-free. I can't remember, but for sure the mini Hallowe'en size are not gluten-free, I checked the other day. In fact, Effem (who make Snickers, Mars, M&Ms, etc. said when I called their Canadian info number that the only thing you can count on for sure is that the M&M's EXCEPT Crispy are all gluten-free. I asked about Mars and Snickers and she said to check the labels every time. Also, Rockets in Canada are Smarties in the states. Of your "Safe to Share" Nestle products your gluten-free child can only have Aero bars.

Here's a link to a Canadian product listing, but some of them seem a bit outdated.

Open Original Shared Link

Good luck, and where in Saskatchewan are you? I lived in Regina for about 6 1/2 years but moved away in '95.

[coralex]

Actually, that's the perfect situation for your dd, shoud you want to have her go gluten-free. Just order a mix of gluten-free cake batter, and make *everyone's* cupcake gluten-free. They'll never know 

Also, if you're going to have the 'scope done, don't go gluten-free until it's over. In the meantime, you could familiarize yourself with specialty items at your local store or online, and try some. Just keep her eating wheat every day until the test, and add in some gluten-free stuff.

Merika

<{POST_SNAPBACK}>

Thanks for writing in - I had seriously considered putting her on the diet for a couple of weeks. We went shopping today and picked up a few things, but in the back of my mind I kept worrying that we weren't doing the right thing because of the test. It really helped to have someone else point it out to me, so now we'll let her try a couple of the things we bought to see if she likes them but wait until after the test to put her on it entirely. Because I think she's only going to want to have that scope once!!

[coralex]

Charmaine,

When/if you go gluten-free, just remember that most of the people here are from the states, so not all the items they say are gluten-free will be in Canada. I think that Canadian Snickers are NOT gluten-free. I can't remember, but for sure the mini Hallowe'en size are not gluten-free, I checked the other day. In fact, Effem (who make Snickers, Mars, M&Ms, etc. said when I called their Canadian info number that the only thing you can count on for sure is that the M&M's EXCEPT Crispy are all gluten-free. I asked about Mars and Snickers and she said to check the labels every time. Also, Rockets in Canada are Smarties in the states. Of your "Safe to Share" Nestle products your gluten-free child can only have Aero bars.

Here's a link to a Canadian product listing, but some of them seem a bit outdated.

Open Original Shared Link

Good luck, and where in Saskatchewan are you? I lived in Regina for about 6 1/2 years but moved away in '95.

<{POST_SNAPBACK}>

Great - I'm going to check that site out. (Had a sneaking suspicion this was the case). I live in a small town outside Saskatoon called Martensville. I lived in Regina for a little while before moving here in 96, I lived in Calgary from December 91 until about April 95, then I spent some time in Australia before moving to Saskatchewan. Winters are nicer in Australia!! Hope you didn't have much damage earlier this year with the floods. That was incredible, not in a nice way. I was just heartbroken about Fish Creek Park - loved it there.

Have a great evening!!