Frustrated!

[Hollymomof4]

My 4 year old DS was just test for Celiac's by our family doctor. The stool samples and blood tests are negative, but something is definitely wrong with him!

He has never had a normal stool in his life (very soft), his stomach looks like a refugee (bloated and hard as a rock), he constantly has gas which is foul smelling, and in the last 2 months the symptoms have been getting worse. He has vomited probably 10 out of the last 14 days, usually after dinner in the evening.

We've had him on a gluten free diet for the last 5 days and it has made no difference.

We have a consult scheduled for tomorrow with the doctor, but I was hoping for some sort of insight.

Thanks!

[mftnchn]

Be sure that the blood tests included all five recommended tests. If his total IgA is low, it means the tests are no good as he cannot produce enough IgA for the test to show. Also negative blood tests with positive biopsy is still very possible. I'd ask the doctor to pursue having the biopsy done. Remember that blood tests and biopsy must be completed before going gluten free. Even a short time on the diet can cause these results to be negative.

I'd recommend reading the website www.pecanbread.com The stories may be helpful to see if this might be something to try. In the section on handling difficulties, there is a protocol for constipation. This site is for the SCD which is a gluten free diet that also removes other things hard to digest and addresses the problem of carb digestion (villi damage causes problems with production of enzymes to complete carb digestion).

Constipation is the presenting symptom for many celiacs, so you are correct to pursue this.

[nora-n]

What blood tests and stool sample tests were done?

Ordinary main-stream testing for celiac involves taking samples from the beginning of the small intestine via endoscopy, and blood tests for at least ttg IgA plus total IgA.

It is better to get all the other blood tests done too, like endomysium antibody, in some it is the only positive test, the ttg.IgG.version, sometimes the only positive test, and the antigliadin IgA and IgG versions.

Stool sample test is not part of mainstream celiac testing, only enterolag which cannot diagnose celiac does that but this test is more sensitive when done by enterolab. mainstream medicine does not want to diagnose too many celiacs, because of the way they think (restricted diet is not a good way of life....whatever they mean by that)

I am in Europe a d we always try to get an official diagnosis here.

It is also often good to have some good argument re. relatives who want to sneak in some gluten treats, and what to tell the school etc, and what when teh child is old enough to have its own mind and one does not have a diagnosis...

nora

[Hollymomof4]

I haven't seen the actual blood test results, yet. Just told they were normal. But HE IS NOT CONSTIPATED. HIS STOOOLS ARE ALWAYS VERY SOFT and the diet didn't seem eleviate any of the symptoms. We only had him on it for 5 days, so far, but wouldn't there be some sort of relief?

Thanks

Be sure that the blood tests included all five recommended tests. If his total IgA is low, it means the tests are no good as he cannot produce enough IgA for the test to show. Also negative blood tests with positive biopsy is still very possible. I'd ask the doctor to pursue having the biopsy done. Remember that blood tests and biopsy must be completed before going gluten free. Even a short time on the diet can cause these results to be negative.

I'd recommend reading the website www.pecanbread.com The stories may be helpful to see if this might be something to try. In the section on handling difficulties, there is a protocol for constipation. This site is for the SCD which is a gluten free diet that also removes other things hard to digest and addresses the problem of carb digestion (villi damage causes problems with production of enzymes to complete carb digestion).

Constipation is the presenting symptom for many celiacs, so you are correct to pursue this.

[ShayFL]

5 days is NOT VERY LONG. It can take a lot longer to see results. I would stay the course and give it a few months.

Also, note a lot of people think they are gluten-free when in fact, there is cross contamination in their kitchen or they are eating things that "appear" gluten-free, but they have not actually called the company to make sure there is no gluten in the products. Skin care/toothpaste, etc. must be scrutinized to be 100% gluten-free. Old teflon pans must not be used. Old cutting boards can harbor gluten. Ditto wooden spoons. Some do not heal unless every trace of it gone.

[Fiddle-Faddle]

Hi, Holly, welcome aboard!

Most of us here had quite a bit of trouble getting the hang of the gluten-free diet. Gluten is "hidden" in more products than I ever imagined, such as:

Corn Flakes

Rice Krispies

(and most other breakfast cereals)

most brands of soy sauce

"lite" ice creams (as well as cookie dough flavors)

deli-made tuna salads (contain bread crumbs)

corn bread (more wheat flour than corn meal)

corn meal breadings (usually contain wheat)

many kinds of chips

licorice (all flavors) (contains wheat flour)

french fries (many brands coated in flour, and most fast-food places and restaurants fry them in the same fryers as the breaded items--which means they WILL have gluten by the time they get to you, even if they started out gluten-free.

Is it possible that you may have missed obvious sources of gluten, or that he might be getting gluten at a friend's house, or at preschool?

Celiac or gluten intolerance aren't the only suspects in symptoms like your son's. But they would be among the most likely. Other problems might include Lyme Disease, bacterial infection of the gut, candida or yeast overgrowth, or mercury toxicity (from vaccines--the flu shot DOES contain mercury--or you might have received a mercury-containing vaccine while pregnant with him or while breastfeeding, or you might have had a silver (mercury) dental filling while pregnant or breastfeeding).

There are also other food intolerances that could be a problem He could have more than one intolerance, or he might have an intolerance to something other than gluten, like soy (IN PRACTICALLY EVERYTHING!), dairy (very common), or corn.

You might want to post your son's typical daily diet, and see if anyone here has any insight into what might be a factor. You'll probably get lots of different suggestions, and 9 out of 10 might be way off the mark, but the 10th might be a bull's-eye.

Is your son on any medications?

[nora-n]

It took seven months gluten-free, and I woke up one day and was not so awfully fatigued anymore.

This is an autoimmune disease, and antibodies stay around for weeks, so five days is nothing.

If you do not know what tests were run, then it cannot be the enterolab tests. The reason is that one has to order them privately. Any other stool tests are useless for celiac.

The enterolab tests (stool) test for the celiac antibodies, which occur first in the gut, and fat malabsorption, and other things, like intolerance to milk and soy.

By the way, virtually all celiacs are intolerant of milk since the enzymes are made at the tip of the villi, which of course is damaged in celiac.

So one does not get better while still consuming milk, and commercial yoghurt has just as much lactose as whole milk since it is not fermented long enough, and they have added milk solids which has more lactose.

nora

[Hollymomof4]

Thanks For the welcome!

Let's see. First of all, I am very anal by nature. When something like this presents itself, I get very educated, very quickly. There was no cross contamination in anything you mentioned. He even has his own peanut butter and jelly jar!

We actually have a strictly Gluten free store here (a blessing, I know) His diet is rather limited because he's a picky eater and I've made sure everything has no gluten in it and his food is cooked separately. We have no Teflon and I haven't used wooden spoons. He hasn't been to anyone's house and he's had no candy.

I'm just thinking it must be another allergy of some kind. I am going to seek the referral to a pediatric gastroenterologist from my family doctor. I know I'm missing something!

We don't immunize, so the ingredients in vaccines isn't an issue. UGH!!!!!

Thanks for your help.

Here's pretty much what he's eaten in the last week:

-natural peanut butter

-low sugar grape jelly

-gluten free chicken nuggets

-gluten free french fries (yes, they are gluten free Orieda fries)

-gluten free oreos

-apple sauce

-gluten free chips

-gluten free pretzels

- orange juice

- banana

- gluten free spaghetti and sauce

That's about it!

Hi, Holly, welcome aboard!

Most of us here had quite a bit of trouble getting the hang of the gluten-free diet. Gluten is "hidden" in more products than I ever imagined, such as:

Corn Flakes

Rice Krispies

(and most other breakfast cereals)

most brands of soy sauce

"lite" ice creams (as well as cookie dough flavors)

deli-made tuna salads (contain bread crumbs)

corn bread (more wheat flour than corn meal)

corn meal breadings (usually contain wheat)

many kinds of chips

licorice (all flavors) (contains wheat flour)

french fries (many brands coated in flour, and most fast-food places and restaurants fry them in the same fryers as the breaded items--which means they WILL have gluten by the time they get to you, even if they started out gluten-free.

Is it possible that you may have missed obvious sources of gluten, or that he might be getting gluten at a friend's house, or at preschool?

Celiac or gluten intolerance aren't the only suspects in symptoms like your son's. But they would be among the most likely. Other problems might include Lyme Disease, bacterial infection of the gut, candida or yeast overgrowth, or mercury toxicity (from vaccines--the flu shot DOES contain mercury--or you might have received a mercury-containing vaccine while pregnant with him or while breastfeeding, or you might have had a silver (mercury) dental filling while pregnant or breastfeeding).

There are also other food intolerances that could be a problem He could have more than one intolerance, or he might have an intolerance to something other than gluten, like soy (IN PRACTICALLY EVERYTHING!), dairy (very common), or corn.

You might want to post your son's typical daily diet, and see if anyone here has any insight into what might be a factor. You'll probably get lots of different suggestions, and 9 out of 10 might be way off the mark, but the 10th might be a bull's-eye.

Is your son on any medications?

[Fiddle-Faddle]

I agree with Nora about the lactose issue.

However, I disagree about the time issue. Five days for a 4-year-old is vastly different from 5 days for an adult who has decades of damage. I do not recall seeing any posts from parents who say that their children didn't respond to the gluten-free diet for several months. On the contrary, all the posts I have seen are from parents whose children responded within days. And, if something other than celiac is going on, it would be very unwise, IMHO, to give the gluten-free diet several months before ruling it in or out and looking for other answers.

This doesn't mean that it can't take a long time to see a response to the diet, just that I haven't seen posts from parents whose celiac children took that long. And celiac could very well be a problem even if you have multiple issues--and in that case, you might think that gluten is not an issue, because the OTHER issues are keeping your child's symptoms going. It can be very frustrating.

Elimination diets are a good way to figure it out, but very difficult with a picky 4-year-old. Enterolab tests the poop for various food intolerances--it does not diagnose celiac (the amount of damage),it just tells you what foods are being reacted to). That might be an avenue you'd like to pursue.

At any rate, I think you need answers NOW. But I wouldn't rule out gluten just yet for the reasons I wrote earlier.

[mftnchn]

But HE IS NOT CONSTIPATED. HIS STOOOLS ARE ALWAYS VERY SOFT and the diet didn't seem eleviate any of the symptoms. We only had him on it for 5 days, so far, but wouldn't there be some sort of relief?

Sorry, I misread your post. I agree with other poster here that it may take quite a bit more time than 5 days, I hope you see some relief soon.

If you don't, you might want to check out the website I mentioned, read some of the stories at least.

His diet contains a lot of carbohydrates and he may not have the enzymes to break most of those down.

[Fiddle-Faddle]

His diet does look carb-heavy, as well as fiber-light. (I don't count gluten-free cookies, chips, and pretzels as fiber). Can you give him brown rice? And I didn't see any veggies at all on your list, but maybe you forgot to list them? Steamed broccoli, raw carrot sticks, raw red peppers (sweet, not spicy), and you can have him dunk them in hummous (a dip made from canned chickpeas, sesame, garlic, olive oil, lemon, and salt, all whirled in the food processor). I told my oldest that hummous was white ketchup, and he ate it without question. Yours might be a little more alert.

[Fiddle-Faddle]

I was thinking that the vomiting might be reflux? That is also a common presentation amongst celiacs, but for the life of me, I don't know what the mechanism is. If anyone knows why celiac causes reflux, please post!

I just remember thinking that it was the acidic tomato sauce that was giving me horrible reflux, when all along it was the nice bland (wheat) pasta. Can't think of much that's blander than pasta, so I never would have suspected it as causing reflux!

I was also thinking maybe intestinal obstruction?

I found this:

Hirschsprung's disease (congenital megacolon), which may involve meconium ileus, is a motility disorder that is responsible for 25 percent of newborn non-mechanical intestinal obstructions, though symptoms may not develop until late in infancy or in childhood, delaying diagnosis. Children diagnosed with Hirschsprung's disease lack nerve cells (ganglia) in the large intestine, severely affecting the wavelike movements that propel material through the colon. In most affected infants, the first sign is failure to pass a stool (meconium) within 24 to 48 hours after birth. Between birth and age two, these children will likely develop other symptoms, such as chronic constipation, small watery stools, a distended abdomen, vomiting, poor appetite, slow weight gain, and failure to thrive. Most children will require surgery to remove the affected part of the colon. Surgery can be performed at age six months or as soon as diagnosed in an older infant or child. Symptoms can be removed in at least 90 percent of children born with Hirschsprung's disease.

[Hollymomof4]

This child is AMAZINGLY picky. He hates all veggies....won't touch them. I can tell him he won't get anything else if he doesn't eat them and he will just pick the side of not getting anything else! STUBBORN!

He hates rice and most foods I didn't have on the list. He hates anything new (not just in the food area).

Like I said, he's a VERY picky kid. His 3 year old brother is the opposite...loves trying new things and usually likes it! UGH, again.

His diet does look carb-heavy, as well as fiber-light. (I don't count gluten-free cookies, chips, and pretzels as fiber). Can you give him brown rice? And I didn't see any veggies at all on your list, but maybe you forgot to list them? Steamed broccoli, raw carrot sticks, raw red peppers (sweet, not spicy), and you can have him dunk them in hummous (a dip made from canned chickpeas, sesame, garlic, olive oil, lemon, and salt, all whirled in the food processor). I told my oldest that hummous was white ketchup, and he ate it without question. Yours might be a little more alert.

[Hollymomof4]

I"ll mention the Hirschsprung's disease to my doctor, but he really never has been constipated.

His stools have always been very loose and messy.

I was thinking that the vomiting might be reflux? That is also a common presentation amongst celiacs, but for the life of me, I don't know what the mechanism is. If anyone knows why celiac causes reflux, please post!

I just remember thinking that it was the acidic tomato sauce that was giving me horrible reflux, when all along it was the nice bland (wheat) pasta. Can't think of much that's blander than pasta, so I never would have suspected it as causing reflux!

I was also thinking maybe intestinal obstruction?

I found this:

Hirschsprung's disease (congenital megacolon), which may involve meconium ileus, is a motility disorder that is responsible for 25 percent of newborn non-mechanical intestinal obstructions, though symptoms may not develop until late in infancy or in childhood, delaying diagnosis. Children diagnosed with Hirschsprung's disease lack nerve cells (ganglia) in the large intestine, severely affecting the wavelike movements that propel material through the colon. In most affected infants, the first sign is failure to pass a stool (meconium) within 24 to 48 hours after birth. Between birth and age two, these children will likely develop other symptoms, such as chronic constipation, small watery stools, a distended abdomen, vomiting, poor appetite, slow weight gain, and failure to thrive. Most children will require surgery to remove the affected part of the colon. Surgery can be performed at age six months or as soon as diagnosed in an older infant or child. Symptoms can be removed in at least 90 percent of children born with Hirschsprung's disease.

[nora-n]

Yes, it is known that celiacs sometimes have problems with carbs for a year, so going gluten-free actually can cause more bowel discomfort and D. I have read postings about that too.

Also, some have problems with oxalates, and there is this low oxalate website Open Original Shared Link and grains , also some gluten-free and SCD foods, may be a bit heavy on oxalates.

Best to find out what tests were done in the first place.

nora

[Hollymomof4]

I just talked with the family doctor. He contacted them Pediatric gastro. dr. and their first opening for new patients is then end of December! Hello! Patient heal thyself!

Do you know of a good web site for meal ideas for kids wirth celiac's?

Thanks

Yes, it is known that celiacs sometimes have problems with carbs for a year, so going gluten-free actually can cause more bowel discomfort and D. I have read postings about that too.

Also, some have problems with oxalates, and there is this low oxalate website Open Original Shared Link and grains , also some gluten-free and SCD foods, may be a bit heavy on oxalates.

Best to find out what tests were done in the first place.

nora

[nora-n]

You most likely cannot get a diagnosis after going gluten-free, and by december the results will most likely be unclear.

Another option is to order the Enterolab tests but they are private. They cannot diagnose celiac, just gluten sensitivity since they detect antibodies long before they show up in the blood, and before villi damage is severe.

The celiac diagnosis is not positive until the damage is severe....

One can be in some kind of grey zone for a long time, and suffering.

nora

[Fiddle-Faddle]

I"ll mention the Hirschsprung's disease to my doctor, but he really never has been constipated.

His stools have always been very loose and messy.

That's why I bolded the part about watery stools (the opposite of constipation)! That line makes it sound like you can have both constipation and watery stools, or either.

There's a wonderful website called www.lunchinabox.net. The blogger is no longer gluten-free, as her husband (who was the celiac, at least, that's what they thought) turned out to have a bacterial gut infection instead of celiac, but most of the recipes are EASILY converted to gluten-free and if you email her, she will probably give you a gluten-free version.

The site is devoted to Bento lunches, which is a Japanese-style packed lunch in special lunchboxes (inexpensive to purchase--on her site are links to places where you can order them)--AND THE LUNCHBOXES SHE MAKES ARE FOR HER 4-YEAR_OLD! The lunchboxes have little divided sections--put a couple of apple slices in one section, cubes of cheese in another, carrot sticks in another, a cut-up sandwich (you can use gluten-free bread) in another, etc., and kids seem to ADORE them.

The blogger (she goes by "Biggie") is extremely creative--and she HATES spending lots of time preparing these things, so she has tons of tips on how to "speed-bento," as well as lots of organizational advice for the kitchen. She gives her little one lots of leftovers from last-night's-dinner, and she has recipes for that, too.

She does use some gluteny convenience items, like crab cakes and veggie fritters, and I thought they looked so good, I looked up recipes for them and altered them to be gluten-free, so it CAN be done!

There are several other great websites that ARE totally gluten-free:

A Year of Crockpotting (Open Original Shared Link)

Gluten-Free Mommy (www.glutenfreemommy.com)

Gluten-Free Gobsmacked (Open Original Shared Link)

and my favorite name:

Shut Up and Eat (Open Original Shared Link)

Each of these sites has tons of links to other great gluten-free sites. Be warned--it's addictive just READING these sites! I could stay on the computer for HOURS just on gluten-free sites!

Sorry to hear that they can't get your son in until practically next year. Our whole health care industry is going to heck in a handbasket, isn't it?

But you sound like you are more intelligent than most doctors anyway, so I bet you'll get to the bottom (sorry, didn't mean a pun there) of this one way or another! If you do find something that sounds like it's likely, maybe your family doctor can at least order whatever tests are necessary without sending you on a hunt for another doctor until the test results are positive for SOMETHING. Good luck!

[Fiddle-Faddle]

You most likely cannot get a diagnosis after going gluten-free, and by december the results will most likely be unclear.

Another option is to order the Enterolab tests but they are private. They cannot diagnose celiac, just gluten sensitivity since they detect antibodies long before they show up in the blood, and before villi damage is severe.

The celiac diagnosis is not positive until the damage is severe....

One can be in some kind of grey zone for a long time, and suffering.

nora

TOTALLY true.

I'd vote for Enterolab, even though I've never gone that route myself.