? Advice Needed About 4-Year Old?

[rmack]

Good Morning,

I am trying to determine if my 4-year old son is gluten intolerant or may have Celiac Disease. Both of my parents have had genetic testing done and have the genes. My mother has Celiac (almost died from it), and my father is also on the gluten free diet. My father determined his need for the diet by doing the test offered by Dr. Fine (stool) and having a good result from the diet. I am not quite convinced of the accuracy of this test.

I do not have any symptoms, and have the blood test every two years. My husband is very skeptical of the entire issue and doesn't think we need to worry about anyone in our immediate family unless there are drastic symptoms. My mother has provided me with quite a bit of information, but it's hard to sort through and seems to be constantly changing.

The 'symptoms' that I see in my son are:

*Dropping down on the growth chart (he started out at 75% and now he's dropped below 50%). He seems to be turning into skin and bones to me, but the Dr.s all say, "kids are skinny!". My daughter--who is 14 months younger--outweighs him by 5 lbs. She was also 10.5 lbs when she was born and always been off the charts.

*Floating stool. I have been keeping track of this for about three months, and it's every time. My daughter does not have this. Is this a real symptom? If it is, the skeptics would see this as the only 'real' symptom.

*Crazy temper tantrums about nothing. I don't know if this is a symptom or if he is just a normal 4-year old? He will scream for an hour about seemingly nothing. It is driving me and my husband crazy.

*He constantly says that he has a tummy ache. This has been going on for months. I don't know if it's true or for attention, or become a game? He doesn't nail down anything that makes it better or worse.

I have read mixed information about the accuracy of the blood tests; many false negatives. There is so much conflicting information out there about this. I could try a gluten free diet for a while, but how long would be a good test? If there is a bit of contamination will I have to start over? It will be a huge challenge to have my husband agree to this. I would just do the blood test (he would believe that) but if it comes back with a false negative I will have a problem convincing him that we should do the test diet.

I would appreciate any insight you have to my situation.

Thanks!

[Leah's Mom]

The only conclusive test I know of is an endoscopy, and that would require anesthesia. However, it sounds as though you and your husband are skeptical, and may need a test with 100% accuracy. My husband and I were also skeptical (and we don't even have a history of Celiac Disease or a gluten allergies in either of our families), but our daughter's tantrums were so extreme as a preschooler and early gradeschooler that we were desperate for answers. The endoscopy proved her villi were almost non-existant, so she wasn't absorbing any nutrients and her tantrums were most likely due to the pain she was in from the gluten reaction. Yes, it's a tough diet to follow . . . you've got to read labels on everything (even shampoos and meds). Ingredients are sometimes disguised with unlikely words like "natural flavors" or "modified food starch", etc...to be certain of gluten absence many times you'll have to call the manufacturer.

BUT IT IS SO WORTH IT! Our daughter was diagnosed as a 2nd grader, and is now a different child since going on a gluten free diet. Her immune system is so much stronger now, no tantrums, no stomach aches (except with contaminations), and she no longer looks like she's starved and from a 3rd world country. I would recommend seeing a pediatric gastrointerologist, (I wouldn't bother with a blood test since they aren't always accurate). They'll probably recommend the endoscopy. If that's too scary for you, just try the diet (no cheating) for 6 months. If your 4 year old has it, you will see a change in behavior by the end of that 6 months (if not before).

Good luck and remember there is a huge support group of parents just like you! Your child is worth the effort!

-Marcie

Good Morning,

I am trying to determine if my 4-year old son is gluten intolerant or may have Celiac Disease. Both of my parents have had genetic testing done and have the genes. My mother has Celiac (almost died from it), and my father is also on the gluten free diet. My father determined his need for the diet by doing the test offered by Dr. Fine (stool) and having a good result from the diet. I am not quite convinced of the accuracy of this test.

I do not have any symptoms, and have the blood test every two years. My husband is very skeptical of the entire issue and doesn't think we need to worry about anyone in our immediate family unless there are drastic symptoms. My mother has provided me with quite a bit of information, but it's hard to sort through and seems to be constantly changing.

The 'symptoms' that I see in my son are:

*Dropping down on the growth chart (he started out at 75% and now he's dropped below 50%). He seems to be turning into skin and bones to me, but the Dr.s all say, "kids are skinny!". My daughter--who is 14 months younger--outweighs him by 5 lbs. She was also 10.5 lbs when she was born and always been off the charts.

*Floating stool. I have been keeping track of this for about three months, and it's every time. My daughter does not have this. Is this a real symptom? If it is, the skeptics would see this as the only 'real' symptom.

*Crazy temper tantrums about nothing. I don't know if this is a symptom or if he is just a normal 4-year old? He will scream for an hour about seemingly nothing. It is driving me and my husband crazy.

*He constantly says that he has a tummy ache. This has been going on for months. I don't know if it's true or for attention, or become a game? He doesn't nail down anything that makes it better or worse.

I have read mixed information about the accuracy of the blood tests; many false negatives. There is so much conflicting information out there about this. I could try a gluten free diet for a while, but how long would be a good test? If there is a bit of contamination will I have to start over? It will be a huge challenge to have my husband agree to this. I would just do the blood test (he would believe that) but if it comes back with a false negative I will have a problem convincing him that we should do the test diet.

I would appreciate any insight you have to my situation.

Thanks!

[tarnalberry]

Endoscopies are not 100% accurate (for a variety of reasons).

there's no reason not to ask for the blood work, and no reason not to try him on the gluten free diet for a couple weeks. think of it as an experiment - does this make him feel any better?

[Dixiebell]

You have confirmed celiac in your family, I would definately get the blood tests done along with vitamin levels. Wait until after the tests to try gluten free, then you could try it for three months and see if you notice any changes.

[srall]

Good Morning,

I am trying to determine if my 4-year old son is gluten intolerant or may have Celiac Disease. Both of my parents have had genetic testing done and have the genes. My mother has Celiac (almost died from it), and my father is also on the gluten free diet. My father determined his need for the diet by doing the test offered by Dr. Fine (stool) and having a good result from the diet. I am not quite convinced of the accuracy of this test.

I do not have any symptoms, and have the blood test every two years. My husband is very skeptical of the entire issue and doesn't think we need to worry about anyone in our immediate family unless there are drastic symptoms. My mother has provided me with quite a bit of information, but it's hard to sort through and seems to be constantly changing.

The 'symptoms' that I see in my son are:

*Dropping down on the growth chart (he started out at 75% and now he's dropped below 50%). He seems to be turning into skin and bones to me, but the Dr.s all say, "kids are skinny!". My daughter--who is 14 months younger--outweighs him by 5 lbs. She was also 10.5 lbs when she was born and always been off the charts.

*Floating stool. I have been keeping track of this for about three months, and it's every time. My daughter does not have this. Is this a real symptom? If it is, the skeptics would see this as the only 'real' symptom.

*Crazy temper tantrums about nothing. I don't know if this is a symptom or if he is just a normal 4-year old? He will scream for an hour about seemingly nothing. It is driving me and my husband crazy.

*He constantly says that he has a tummy ache. This has been going on for months. I don't know if it's true or for attention, or become a game? He doesn't nail down anything that makes it better or worse.

I have read mixed information about the accuracy of the blood tests; many false negatives. There is so much conflicting information out there about this. I could try a gluten free diet for a while, but how long would be a good test? If there is a bit of contamination will I have to start over? It will be a huge challenge to have my husband agree to this. I would just do the blood test (he would believe that) but if it comes back with a false negative I will have a problem convincing him that we should do the test diet.

I would appreciate any insight you have to my situation.

Thanks!

I just moved my second grader to a gluten free diet (and dairy free) a week ago. She is already a new child. She was mixing up letters and wasn't able to do simple math. Doing homework with her this week was completely different. At any rate, she even at age 4 exhibited many of the same symptoms as your son. This past week is honestly the first time in 3 or 4 years she's gone a full week without complaining of a severe stomach ache or a gassy stomach. I don't know if the tantrums at age 4 were normal for that age or not, but it seemed to me like my daughter was out of control at that age compared to other kids. I hope your son can get relief from a gluten free diet. Thankfully I'd been gluten free for several months, so I'd already done the research and gone through the learning curve. Good luck.

[rmack]

Is the floating stool a sure sign of celiac or gluten intolerance?

[mom2kae]

My daughter is now 4 1/2 & weighs a little less than 30 lbs. We FINALLY got her diagnosed w/gluten intolerance & went gluten free a few months ago. What a difference!!

She too had floating stools (oily residue), complained about tummy aches, bone aches, head aches, tantrums out of nowhere, falling off the growth chart starting at 9 mos., not gaining, & then gaining-then loosing, loss of tooth enamel, etc.

We fought with the peds & asked 2x for a blood test for Celiac. 1st blood test came back normal, 2nd test a year ago came back with higher #'s & positive for intolerance. We weren't notified about the results until last spring & started on the gluten-free diet a few months ago. We slipped once & she had major stomach pain & diarrhea for about a day & a 1/2. We haven't slipped again.

We went to a gastro in Spring & was given a bunch of other tests (cystic fibrosis being the major test) & everything came back fine. He told us that "everyone has some sort of gluten intolerant--same thing our ped said). He told us not to worry about going gluten-free ("it's expensive & not necessary"). We ended up going gluten-free & have seen a bit of light at the end of the tunnel. We haven't gotten the endoscopy done & probably won't, because we see that the gluten-free diet works for her & that's all we needed to see. & it's not expensive if you learn to bake/cook yourself!!

Jenn

[mom2kae]

Is the floating stool a sure sign of celiac or gluten intolerance?

I would say both!

[srall]

My daughter is now 4 1/2 & weighs a little less than 30 lbs. We FINALLY got her diagnosed w/gluten intolerance & went gluten free a few months ago. What a difference!!

She too had floating stools (oily residue), complained about tummy aches, bone aches, head aches, tantrums out of nowhere, falling off the growth chart starting at 9 mos., not gaining, & then gaining-then loosing, loss of tooth enamel, etc.

We fought with the peds & asked 2x for a blood test for Celiac. 1st blood test came back normal, 2nd test a year ago came back with higher #'s & positive for intolerance. We weren't notified about the results until last spring & started on the gluten-free diet a few months ago. We slipped once & she had major stomach pain & diarrhea for about a day & a 1/2. We haven't slipped again.

We went to a gastro in Spring & was given a bunch of other tests (cystic fibrosis being the major test) & everything came back fine. He told us that "everyone has some sort of gluten intolerant--same thing our ped said). He told us not to worry about going gluten-free ("it's expensive & not necessary"). We ended up going gluten-free & have seen a bit of light at the end of the tunnel. We haven't gotten the endoscopy done & probably won't, because we see that the gluten-free diet works for her & that's all we needed to see. & it's not expensive if you learn to bake/cook yourself!!

Jenn

Taking the family organic and gluten free has meant more money spent at the grocery store, but far less spent eating out.

[mom2kae]

Taking the family organic and gluten free has meant more money spent at the grocery store, but far less spent eating out.

To start, yes. We don't always eat everything organic but try to. When you first buy all of the different flours & get all of your necessities to start is is a bit of money at the beginning. Now that we have our staples, our flours & because I bake & cook 95% of our meals it hasn't been more than normal, if not less. We don't buy a lot of prepackaged items for snacks, I bake or if my kids do need to have certain crackers or pretzels, I buy them in bulk on Amazon.

Jenn

[T.H.]

Is the floating stool a sure sign of celiac or gluten intolerance?

It's a sure sign that his body is not digesting fats properly, from what I understand. The fats are just going right through him and ending up in the poop, hence the floating. So that is definitely a problem indicating something that needs to be taken care of, especially if he's had it for quite a while now.

Could be another type of intolerance - like lactose intolerance or fructose malabsorption, to name a couple - but it definitely could be celiacs.

Re: the temper issue? Oh dear lord that was my son to a T. Crazy awful tantrums. I have rarely met a doctor who will call this an issue of celiac disease, but I've met plenty of parents who have noticed this in their kids. Which makes sense to me. I mean, if a child isn't absorbing nutrients, how is he going to be absorbing what his brain needs to function properly, and to control his emotions, and everything else, right?

With my son, we got the blood test (because of myself getting diagnosed), and it came back negative for celiacs. My daughter came back positive. Because we had two celiacs in the family, I just put us all gluten free, and lo and behold, my son's tantrums died WAY down. It's been a year now and we just did a 'gluten trial' to see how he did on it, and he started getting bloated and gassy, tantrums started up again and all so I'm perfectly happy to keep him off of gluten. I don't know if it's celiacs or an intolerance or what, but it makes him miserable, and US miserable, so out it goes.

I'd say it wouldn't hurt to get the test, and if it's negative, it also wouldn't hurt to take him off gluten for a few weeks to see how that goes. Children are so difficult to diagnose with this disease, and frankly, they are still learning about it more every day. Just because their current tests have to wait for our bodies to be visibly damaged before they can make the diagnosis doesn't mean we parents have to wait for that. If we're seeing stuff going wrong BEFORE there is damage showing, we can help, yeah?

[rmack]

Thank you all for your input. The issue is so volatile in my family because of my mother's near-death experience; my siblings, Doctor, and husband is very negative about it all and think it's been blown way out of proportion. I only wish there was a 100% positive test available. Any advice about negotiating family relationships through this?

[tarnalberry]

Just my opinion, but there's no negotiating needed on anything regarding your child with anyone except your husband. Your child, your rules. Period. They don't have to like it; they only have to accept that it's what is going to happen. (No one likes a broken leg, but there's no choice but to accept it.) This may mean completely ignoring someone berating you for your choices, but you have the ability to do that.

[Dixiebell]

Thank you all for your input. The issue is so volatile in my family because of my mother's near-death experience; my siblings, Doctor, and husband is very negative about it all and think it's been blown way out of proportion.I only wish there was a 100% positive test available. Any advice about negotiating family relationships through this?

You would think with the problems that your mother has had and considering celiac is hereditary, that your family would be somewhat supportive. You know what, they probably have a fear of change and they may also be fearful that they could have it too.

I would try to find a new Dr. that knows about celiac and gluten intolerance.

Your husband. I fought with mine in the begining. He did not want his son to be 'different'. Well he is seeing that other children have other allergies etc. and has met other adults who also eat gluten free. And our son has embraced the lifestyle and is doing good.

Also, my husband didn't have much of a choice at home because I do the shopping and cooking.

Maybe just don't talk about it unless someone asks a question or brings up the subject and then keep it short and sweet.

[Noni]

Hi!

I've been a member of this site for a few months now and

love it. I have a question that I pray someone will answer

very quickly, please. My 4 yr/old niece just had blood work

done that came back highly abnormal, indicating Celiac Disease. The doctor stated the blood work left no room for doubt. I'm unfamiliar with this blood test. I would like for my sister to join this website for help and advice from all the wonderful people on here. Can someone please tell me how to send her a link to this site?

Also, if my niece's blood test was so definate, why should she have to go through an endoscope? Would appreciate feedback on this please.

Thanks so much. Noni

[rmack]

Thank you all for your input. The issue is so volatile in my family because of my mother's near-death experience; my siblings, Doctor, and husband is very negative about it all and think it's been blown way out of proportion.I only wish there was a 100% positive test available. Any advice about negotiating family relationships through this?

You would think with the problems that your mother has had and considering celiac is hereditary, that your family would be somewhat supportive. You know what, they probably have a fear of change and they may also be fearful that they could have it too.

I would try to find a new Dr. that knows about celiac and gluten intolerance.

Your husband. I fought with mine in the begining. He did not want his son to be 'different'. Well he is seeing that other children have other allergies etc. and has met other adults who also eat gluten free. And our son has embraced the lifestyle and is doing good.

Also, my husband didn't have much of a choice at home because I do the shopping and cooking.

Maybe just don't talk about it unless someone asks a question or brings up the subject and then keep it short and sweet.

[rmack]

That is sage advice and a great insight about my family. My husband does not want our son to be different. He thinks that if something is really wrong than we will see bigger symptoms and then take action. I do not know of any good doctors around here (northern Vermont). My mother had a horrible time getting diagnosed with our local doctors; none of them are up to speed. How was your son diagnosed? My mother tells me that now the blood test is only 20% accurate. I think that would be the only way my husband would recognize a diagnosis. Who are you supposed to believe about test accuracy? My mother has been very supportive and said that I should just let it go for now (instead of driving a wedge in my marriage) and see what happens.

[mushroom]

The common wisdom seems to be the other way round, that the tests are 80% accurate, with 20% false negatives. There is about the same rate of false negative on biopsy, although the testing rates for young children produce more false negatives

[Takala]

That is sage advice and a great insight about my family. My husband does not want our son to be different. He thinks that if something is really wrong than we will see bigger symptoms and then take action. I do not know of any good doctors around here (northern Vermont). My mother had a horrible time getting diagnosed with our local doctors; none of them are up to speed. How was your son diagnosed? My mother tells me that now the blood test is only 20% accurate. I think that would be the only way my husband would recognize a diagnosis. Who are you supposed to believe about test accuracy? My mother has been very supportive and said that I should just let it go for now (instead of driving a wedge in my marriage) and see what happens.

______________

"Doesn't want your son to be different ?"

Fact: Over 30% of the population carry the genes that pre dispose or give them the ability to develop celiac disease or gluten intolerance. The triggers are not all known, but can be things like infections, surgery, or perhaps exposure to toxins. If he inherited part of those genes from Husband Dearest, then the parent could also be at risk. Try asking him how he'd feel if he were expected to have a stomach ache everyday, but at the same time he wasn't allowed to eat differently and stop the auto immune reaction, because of what other people thought it being inconvenient.

And we humans eat a LOT differently than even a hundred years ago with all the pre processed foods and wheat and soy in so many things.

Your kid's health is more important than somebody's lack of motivation to accept reality.

[momof4gf]

Thank you all for your input. The issue is so volatile in my family because of my mother's near-death experience; my siblings, Doctor, and husband is very negative about it all and think it's been blown way out of proportion. I only wish there was a 100% positive test available. Any advice about negotiating family relationships through this?

I am new to this forum but can totally relate to what you are going through. I have 4 kids all with very different issues/symptoms. My 11-yr-old son has had neurologic issues since toddlerhood - problems with balance, coordination, low muscle tone but never any real digestive issues. Has seen neurologists, orthopedics, pediatricians...all with no answers. My 8-year-old daughter has chronic stomachaches, headaches,tingling in her feet, loss of tooth enamel, major irritability and tantrums, and has now lost all her eyelashes. I tried them on a gluten free diet (though my husband, who is a doctor, insisted food has nothing to do with their issues) and the results were nothing less than amazing to me. I want to take them to a gastro doc (their pediatician said I could try the gluten free diet if I wanted to and if it helps then great, but nothing more than that) I have 2 other kids who seem pretty healthy but do have some issues such as chronic canker sores, irritability and easy fatigue who may or may not be affected so I feel like I need a diagnosis. Plus, my 13 year old daughter (with the canker sores) refuses to eat gluten free because she thinks she's fine. How do I convince her without a diagnosis? My husband said they do not need to go to the gastro and if they feel better off gluten that's fine and if they want to eat it then let them eat it. Well, I am following my gut and my mother's intuition. I restarted them on a regular diet and I made an appointment with a pediatric gastroenterologist who specializes in celiac disease. How could I live with myself if I continue to feed any of them gluten having these nagging feelings about it and then they developed other more serious autoimmune diseases in the future, or God forbid, cancer. Nothing is more important than taking care of our children. They've now been on their gluten challenge for 3 weeks and I do see some of the old issues resurfacing (headaches, irritability). Only 3 more weeks until our appt. You could try showing your husband some information to support your concern that your son's symptoms could be due to celiac. I told my husband about the appt and why I so strongly thought they needed to go and I asked him to please come with me to which he finally agreed. Maybe the information coming from another doctor will convince him there is something going on with our kids. But I still have that fear that they will test negative and I will be back at square one with him even though the kids were soooo much better off of gluten. Good luck to you!

[gorgeous6]

Hi!

I've been a member of this site for a few months now and

love it. I have a question that I pray someone will answer

very quickly, please. My 4 yr/old niece just had blood work

done that came back highly abnormal, indicating Celiac Disease. The doctor stated the blood work left no room for doubt. I'm unfamiliar with this blood test. I would like for my sister to join this website for help and advice from all the wonderful people on here. Can someone please tell me how to send her a link to this site?

Also, if my niece's blood test was so definate, why should she have to go through an endoscope? Would appreciate feedback on this please.

Thanks so much. Noni

I'm not sure about the testing, but if you want to e-mail your sister just go to the bottom of the posting page, and click on the button E-mail. You can send her the link right away.