My 8 Year Old Symptoms, Testing, Needs Advice

[Worried mommy]

Hello all,

My daughter who is 8 has always had tummy problems. About two years ago I took her to her ped who said start using probiotics, we did and they didn't help. Then I went back he prescribed Prevacid, that wasn't her problem. Went back and he said she probably has IBS and that we should just keep an eye on it. Two weeks ago I took her back and pushed for an answer.

Her symptoms are: always needs to go to the bathroom while eating a meal, 3-4 times. During the meal complains of her stomach hurting. After eating has diareha, or very very soft bowel movement. She is always complaining that her stomach hurts and sometime feels the need to go to the bathroom but nothing. She would feel nauseated at times but never has vomited. It has gotten to the point where her hands are always folded at her waist and holding in that position all day long. She is always worried where there is a bathroom everywhere we go.

Blood work done 1/12/13 results:

IGA 208 Reference 62-236

TTG IGA <2 reference 0-3

tTG IgG <2 reference 0-5

Glia din AB, IgA 4 reference 0-19

Glia din AB, IgG 2. reference 0-19

But her sed rate,weste was 24 reference 0-10 he said maybe she is fighting a cold. Could that be right?

Endoscopes showed everything to be normal, just waiting for biopsy results next week.

She has been gluten free for 4 days and I have seen great improvement. She actually is at the dinner table with us eating instead of the bathroom. Her complaining and crying her tummy hurts her has lessened dramatically.

Since her blood work shows everything in the normal range and everything physically looks fine is there still a chance for celiac?

I would appreciate any input anyone has, just trying to figure out what is going. Thanks

[nvsmom]

Your daughter sounds like a combination of my fiveand ten year old sons. My youngest would often go go bathroom 5 to 8 times a day; I know this for a fact since he is still at an age where he requires some assistance with wiping. He didn't get stomach aches often but my 10 year old did frequently. My oldest usually got his stomach aches while eating, vomitted a fe times a year after getting treats, and he had occassional headaches, plus his growth fell from about 80th percentile to 30th percentile. He also had some behaviour issues (mild aspergers) related to controlling his emotions when they were strong. My 8 year old has no symptoms at all.

I found out I was a celiac this past summer and had my kids checked too. Like your daughter, they all had negative test results. I had them all go gluten-free anyways this fall. My youngest and oldest have had significant improvements in their symptoms within a month. My youngest only has a bm 2 or 3 times a day now, and it is much better and consistantly" formed". My oldest had some improvements and then he decided (after some suggestions from me) to go milk free as well, and he has improved in every area: behaviour is more under control and focused, way less stomach aches and headaches. I think he is growing again too, but it's hard to tell because all three of my kids have hit a growth spurt this fall... it could be a coincidence but I doubt it.

If she is anything like my boys, she could be Non-celiac gluten intolerant (NCGI). It's much more common than celiac, and has all of the same nasty symptoms as celiac but no blood tests to diagnose it; the only way you know you have it is if you react well to the gluten-free diet.

I would recommend going gluten-free. No cheats, crumbs, supplements or sauces with gluten. No hamburger if the bun touched the burger, no fries unless they are fried in a gluten-free fryer, no Smarties... Go gluten-free 100%. If she is strictly gluten-free for at least 3 months (6 is better), then you can re-evaluate how she is doing and see if she has had any improvements. It can't hurt. The only bad thing about the gluten-free diet is that it inconveniences whoever is doing the food prep, but you get used to it pretty quick, within a couple of months.

You could try the whole family on the gluten-free diet for simplicity's sake. I am a big believer that the wheat of today isn't fit for human consumption. It's been so genetically modified that it barely resembles wheat of 200 years ago. Read Wheat Belly by davis if you are interested in how wheat has changed.

Best of luck to you and your daughter. i hope she feels well soon.

[Cara in Boston]

She could very well be sensitive to gluten and still come up negative on all tests. Think of the diet as the "final" test. Stick with it for three months. You have already noticed a change . . .

It might be helpful to keep a diary of her symptoms. Sometimes a reaction can happen days after gluten was ingested. It helps to have it written down so you can track her progress better. You may need a doctor's diagnosis (even if it is simply "gluten intolerant" rather than celiac) to assist with school, summer camp, etc. Keeping a diary might help show how much she has improved without gluten. I just jot notes on a pocket calendar.

We have found that since being gluten free for so long, our reaction to it is much worse than it was before. Be prepared for that too.

Good luck - trust your instincts.

Cara

[mommida]

American Smarties are basically sugar candy. American Smarties candy is gluten free.

[nvsmom]

American Smarties are basically sugar candy. American Smarties candy is gluten free.

My 5 year old will be jealous, ours definitely have gluten, I've checked a few times since the summer. Wierd.

[Ollie's Mom]

My 5 year old will be jealous, ours definitely have gluten, I've checked a few times since the summer. Wierd.

Are you in Canada?

Smarties in the US are like Rockets candies in Canada.

[mommida]

Aren't Smarties in Canada like Hershey's M&M's (chocolate bits with colored sugar coating with a letter M on it) in the U.S.?

Little joke... Why did the blonde get fired from the M&M factory? She kept throwing out the Ws.

[Takala]

M&M's are a Mars company candy, not Hershey's. In the U.S. in 2013 January, the plain chocolate ones are gluten free. I think the Canadian ones are not, but I'm not sure, as it's just the American ones I am seeing in the stores to check the labels on. "Smarties" here in the U.S. are not the same as M&M's. They are not a chocolate candy. More like sugar that's fruit flavored- Open Original Shared Link

[mommida]

Thanks for the correction. Brain fart, I just wanted candy really bad last night, but not bad enough to go out in the cold to get some.

Smarties in the US are on the Parents for kids with food allergies "non-food" items. So long as the individual can tolerate sugar and food dyes, Smarties, Dum-dum suckers can be used for kids with feeding tubes to not completely forget how to eat. (Most "tubies" usually need an eating coach, when they get off the tube feeding system.)

Just trying to clear up the confusion about candy names and what they are in different countries. This came up before, and it is still confusing because the candy types are so different being gluten free or not.

[nvsmom]

Are you in Canada?

Smarties in the US are like Rockets candies in Canada.

Yes, I'm in Canada. Up here Smarties are candy coated chocolates with a hard shell of varoius colours, a lot like M&M's (I liked that joke BTW ). They have Wheat Starch on the ingredient list and Wheat is listed as an allergen at the bottom of the ingredients. (we have a law that all major allergens like soy, wheat, milk, eggs, nuts and mustard must be relisted at the end of the ingredient list so it is clear that the food has those ingredients.)

We have Rockets up here too.

[Takala]

If you want to really mystify the clerks at the American movie theatre concessions, you ask "can I please check the label on those M&M's before we buy them, to be sure they're not Canadian ?" You can see the wheels spinning as they try to figure out if Canadians eat candy or not, where does candy come from anyway, and why would that be a threat.

[mushroom]

If you want to really mystify the clerks at the American movie theatre concessions, you ask "can I please check the label on those M&M's before we buy them, to be sure they're not Canadian ?" You can see the wheels spinning as they try to figure out if Canadians eat candy or not, where does candy come from anyway, and why would that be a threat.

Maybe think you really hated Canadians??

[mommida]

I live close enough to the border to see Canadians shopping in the area. The last group of ladies in ran into were really putting together a shopping girl's weekend. They were running through Costco wearing shirts that labeled themselves as b!^ch (they did not cleverly disquise this word like I just did) numbered 1 through 6 (if I remember right). Funny ladies, great sense of humour, and having such a good time I wanted to join them, shirt and all!

It's great when countries can just get along!

[nvsmom]

I live close enough to the border to see Canadians shopping in the area. The last group of ladies in ran into were really putting together a shopping girl's weekend. They were running through Costco wearing shirts that labeled themselves as b!^ch (they did not cleverly disquise this word like I just did) numbered 1 through 6 (if I remember right). Funny ladies, great sense of humour, and having such a good time I wanted to join them, shirt and all!

It's great when countries can just get along!

I haven't had a shopping trip to Montana since the 80's! LOL I'm always so jealous of how much cheaper everything is down there; from books to food, to clothes to cars to electronics... I know many people who order stuff delivered to an American friend who then ships it up here to save a bundle. Even when our dollar is on par, we spend a good 25% more... It's a good thing you all are such good neighbours or we might... ummm...hmmm.... mutter behind your back. LOL

You have me nervous about M&M's now... I'm pretty sure that ours are gluten-free. It's my favourite movie snack.

[Worried mommy]

Ok so off the candy topic, her scope tests were negative. Now he has her on a gluten free diet for 4 weeks, which I started then add gluten after the four weeks and see what happens. He also had her do a stool test, because she still is having pain while eating. Waiting on those results.

[nvsmom]

Sorry about the candy topic....

Four weeks is not a very long time to go gluten-free. Some go through a withdrawl for the first few weeks which exasperates fatigue and moodiness, can cause stomach upset and headaches; for some, it seems to get worse before it gets better.

I personally am still noticing new relief to some symptoms after eating gluten-free for over 6 months. I mention this so you'll consider a longer trial (of a few months) so you can get a clear picture of what helps.... I don't understand why the doctor would want you to re-introduce gluten after four weeks to "see what happens". He already knows what happens because she is eating gluten now... I don't get that logic.

Anyway, it's something to consider.

Best of luck to her with her tests and with starting the gluten-free diet; I hope it goes smoothly.

[mommida]

Sorry for off topic stuff.

4 weeks is not a long time and if there is another food intolerance issue that is going to add to the confusion. Keep a food journal. I say journal because write down everything. Location of where food was consumed. (is school a source of cross cantamination, snack at a friend's house?) How long it takes to digest food depends on amount of liquid, activity level, amount of food and food's consistancy.

When my household went gluten free, I apparently had a cross-contminated bottle of vanilla. With out that journal I don't know how I would have tracked down 1 teaspoon added to various things!!?

[mommida]

Do you have a hard copy of the biopy results? Just to see what has been ruled out, and where further testing may lead.

Honestly I don't know why they didn't try allergy testing yet. (Not helpful in our medical experience, and Celiac is NOT an allergy)

[Worried mommy]

Do you have a hard copy of the biopy results? Just to see what has been ruled out, and where further testing may lead.

Honestly I don't know why they didn't try allergy testing yet. (Not helpful in our medical experience, and Celiac is NOT an allergy)

I do have a copy of her test what are you looking for its multiple pages long. Do you mean that maybe in the biopsy they weren't searching for the right things?

[mommida]

Well some things are considered "rare" and can hide in "normal" looking tissue. Like eosinophils in a case of Eosinophilic gastrointestinal disorders. Eosinophils become visible with red dye, so only if the test was ordered by the doctor will the pathologist put the dye on and count them.

A verbal description of "villi blunting" can also describe Celiac damage with out some doctors diagnosing Celiac. ("Marsh scale" results?)

So in one of my daughters endoscopy with biopsy reprts (for (Eosinophilic Esophagitus) there was no mention that moderate chronic inactive astritis was part of the written report. The duodenum mucosa with no significan histopathological alteration was not mentioned, but as a patient caregiver I want to know what's going on. The doctor was just all over the EE diagnoses.

What did the doctor look for? What was ruled out? What things are showing up that are at least part of this puzzle?