Dr Says Not Celiac, I'm Not Sure

[mama.liz07]

Hi everyone, I'm new here and am hoping to get a bit of help.

My son is 26 months old. He's always had a sensitive tummy which has disrupted his sleep and makes him fussy/clingy off and on during the day. He has gas pains and really bad smelling gas, plus his stools are never formed and also smell awful. They're not usually watery, just messy and disgusting and often have undigested food in them. When we took him off lactose, his symptoms improved some, but not completely. We're doing a lactose free diet now and haven't tried any other elimination diets yet.

My sister has celiacs but I tested negative for it...and the dr does not think my son has celiacs b/c he is growing well. Dr says my son probably has a sensitive digestion system and will outgrow his problems in time. So for a while I've just been waiting, but I hate how uncomfortable he is (and how much it disrupts our sleep) and the unformed stools three and four times a day concern me.

I'm just kind of at a loss what I should do next. I read about all these different food allergies and how, even if you eliminate gluten, if they have other allergies it might not help his symptoms. But they say testing isn't accurate for toddlers either.

So what do you think? Could this be celiacs? Any suggestions for what I should do next?

Thanks so much, I appreciate any help and advice.

[GottaSki]

Welcome!

I highly suggest removing all gluten from his diet for at least three months - this is often the best test with small children. I can tell you from experience. When I was finally diagnosed at age 43, I had very little improvement during the first weeks. My grandson at the time was 18 months old and had never had a solid stool - his mother and doctor had already removed dairy and corn to see if these were the problem, so when we learned that I had Celiac Disease our little guy was the first after me to trial gluten-free. He had solid stool within days for the first time in his life. He has not had this problem in the past three year.

I would like to add that you should have a full celiac blood panel before you remove gluten, because if your son improves you may not wish to have him undergo a gluten challenge. My grandson's blood was negative when he had it about a month gluten-free, but his mother has never had him do a gluten challenge, because as time passed it became obvious with accidental glutenings that he has a serious problem with gluten.

It is a shame that many doctors still believe Celiac Disease can not be possible in children unless they are failing to grow - simply shameful. Many are good doctors, but their education and practical experience is lacking with regard to Celiac Disease.

Your son's blood could confirm Celiac Disease so I'd hate for you to lose that data by starting the diet before blood testing. Place another request for the doctor to order a Full Celiac Panel to rule out Celiac Disease because of your son's symptoms along with a family history. If the doctor flat out refuses, find a different doctor or pay for a celiac panel on your own?

Good luck to you...sure hope this is the answer it was in our family.

[Marilyn R]

I need to preface by saying I'm not a mother. Not all people with celiac disease or gluten intolerance present with classical symptoms. And not all pediatricians and doctors are all very knowledgeable about the condition, IMO.

Did he improve at all with avoiding dairy products?

I'd attempt a gluten-free diet with him, but it would be good to get the blood tests first. Since you have a 1st degree relative with celiac disease, you are not at all out of line requesting (demanding if need be) the celiac panel.

Even if the panel turns up negative, I'd try a gluten-free diet.

If that doesn't work, I'd look at soy. Soy can be tricky, it seems to be in almost everything.

Good luck with the little guy, wish you and him well. Please let us know what happens.

[eatmeat4good]

Your baby doesn't feel well at all every single day and he is having Celiac symptoms and there is a family history of Celiac and still the Dr. thinks this is a coincidence? I'm speechless.

Do yourself, your family and your baby a favor and take the baby off of gluten. That will be your test. I would guess that you will be changing less diapers and sleeping more soundly in a very short time. Not to mention your baby will feel better, happier, and less clingy, fussy, and irritable. These are classic Celiac baby symptoms. The messy diapers are too and the Dr. should listen to you. But since he doesn't, you get to make the decision about what your baby eats. You have nothing to lose except sleepless nights, messy diapers, and you might turn a miserable baby into a healthy and happy little boy all by yourself without the Dr.'s help.

Many people do this without the Dr.

You have great reason to try gluten free.

You are a good mom to keep asking questions when your baby doesn't feel good. I wish you the best of luck and hope your baby feels better soon.

[Mom-of-Two]

When I discovered I had celiac 8 months ago, my primary dr (who ran the labs) said I did NOT need to have my kids tested unless they had symptoms. I then went to my specialist for celiac, and she had a whole other story- suggesting both kids be tested, due to the genetics. She also said we should test them every few years, and that it is not true that all children with celiac are sick and failure to thrive- many kids are silent celiacs, with no symptoms at all. On her advice, we had our kids tested, our oldest came back positive on blood work, had a biopsy that was normal but we suspect there was patchy damage- she was also positive for the endomysial antibody which led us to go forward with the gluten free diet. I will add that my 8 year old is also healthy, and average size, always has been.

Have him tested, BEFORE you remove gluten. And if he comes back negative, trial it for a few months, maybe he is intolerant. Also remember that in young children, blood testing is many times inaccurate, they just don't build up the antibodies yet. Get him a full panel.

Good luck!

[mama.liz07]

Thank you so much everyone. I will email the dr right now to request blood work. He's a very nice dr so I doubt he'll fight me on it...too bad it seems he doesn't know much about this condition. Then we'll go gluten free. I guess I just needed to hear other people say they agreed with my suspicions before I got started. Really appreciate it...will keep you posted...

[Mom-of-Two]

I would not take gluten out until AFTER you get results because if his labs are positive, they will want you to biopsy him which is your call but you have to keep him on gluten to see the damage.

Good luck!!!

[nvsmom]

Everyone gave you great advice so I won't add more. I can only add that I am almost positive that I was celiac my entire life; I had stomach aches and "C" even as a baby yet doctors dismissed it... possibly because I was a tall slim kid. I was always 90th to 100th percentile for height although less for weight. Really tall. My only growth abnormality was stopping growing in grade 6 but luckily I was at a nice height already.

Good luck with your son. I hope he is well soon.

[frieze]

Thank you so much everyone. I will email the dr right now to request blood work. He's a very nice dr so I doubt he'll fight me on it...too bad it seems he doesn't know much about this condition. Then we'll go gluten free. I guess I just needed to hear other people say they agreed with my suspicions before I got started. Really appreciate it...will keep you posted...

someone has already mentioned "silent" celiac, perhaps that applies to yourself? Perhaps YOU should be tested also?

[Cara in Boston]

You are getting good advice here.

Trust your instincts. Doctors are frequently wrong.

I would also check to make sure your doctor does the RIGHT tests. Don't just assume he/she knows what those are. It is already clear your doctor does not know much about celiac disease if he has not already tested your child. (symptoms + relative with it -= get tested), so don't hesitate to speak up.

We were told our son (age 5 at the time) could not have it since he had zero GI symptoms and appeared healthy. His only symptom was behavior. By that time, I had already tested positive too, so we kept looking. He was finally diagnosed by biopsy.

Cara

[eatmeat4good]

Yes, Dr.'s are frequently wrong.

My son had severe asthma and leg aches his whole childhood. Some bad stomach aches but not always, and no BM problems. Depression set in in early adolescence and I worried it was because I was "sick" all the time. I was diagnosed with "fibromyalgia" and nothing changed in 7 years. He laid in his bed with asthma and depression, I laid in my bed with migraines and muscle pain.

I found out I was Celiac by coming here.

DH healed, migraines went away, a host of other symptoms too. The Dr. diagnosed me by everything that healed in the first year gluten free.

I took my son gluten free after 3 Dr.'s refused to test him because he didn't have the classic symptoms of Celiac and he was a healthy weight.

At 16 he started to heal. He is 18 now and happy and healthy for the first time in his life.

On a whim I asked for Celiac testing at his sports physical after having been gluten free for 2 years. This Dr. agreed and he tested postive for antibodies so apparently we have not been gluten free enough. I'm shocked because I am super careful, so now we will only eat certified, but I wanted to share another case of Dr.'s being wrong....and one being right but several years late.

We would both still be in bed and sick if it weren't for Celiac.com.

We live our lives now and we are very happy with our health.

I hope you get to find out by testing, but sometimes it's very expensive in terms of misery to wait for your Dr. to get on board with Celiac. I agree that you should be tested too if you can. Hope you will update us on what happens.

[mama.liz07]

You are getting good advice here.

I would also check to make sure your doctor does the RIGHT tests. Don't just assume he/she knows what those are. It is already clear your doctor does not know much about celiac disease if he has not already tested your child. (symptoms + relative with it -= get tested), so don't hesitate to speak up.

Cara

I was tested when my sis came back positive. I have no symptoms and my test results indicated I don't have celiacs. But, are these the right tests?

TRANSGLUTAMINASE IGG AB -- less than 3 (normal is less than 6)

ENDOMYSIAL AB IGA --- negative

And are these the tests they should do for my son?

My other son has asthma, which someone mentioned their son had. Are the two related?

So glad to have found this message board!! Will try to do more research, but being home with two little boys (age 2 and 4) I don't get a lot of computer time. Not that I'm complaining though :-D

Thanks again for all your help!

[eatmeat4good]

Yes, Asthma is related to Celiac but it is a fairly recent finding.

About a year and half ago three studies were published in Sweden about Celiac and Asthma occurring together. It definitely stopped the asthma roller coaster when my son went gluten free. He has used his inhaler only a few times. Before it was Severe asthma. I did research and a vitamin D deficiency can cause severe asthma-like symptoms. I don't know if that was his case or not but it does bear repeating in case your child's vitamin D levels are low and it is causing "asthma-like" symptoms.

Keep reading.

I gotta run off just now but you can do a search in the box on this site for asthma and Celiac and you will find many examples of allergies and asthma resolving on going gluten free.

It thrills me that maybe another child won't have to suffer for as many years as my son did if this is true and the word gets out.

Good luck to you and yours.

[Aprilelayne]

My son is 26 months old. He's always had a sensitive tummy which has disrupted his sleep and makes him fussy/clingy off and on during the day. He has gas pains and really bad smelling gas, plus his stools are never formed and also smell awful. They're not usually watery, just messy and disgusting and often have undigested food in them. When we took him off lactose, his symptoms improved some, but not completely. We're doing a lactose free diet now and haven't tried any other elimination diets yet.

This is my daughter to a T. She's 18months and we are pending results right now.

Her constant weight in the 70% has been the stumbling block to get past our pediatrician, but the gastro jumped on top of all the same symptoms you've listed and immediately mentioned Celiac testing for me and her.

We've been lactose free for her entire life due to my personal issues with lactose and her accidental ingestion reaction.

I hope you can get some solid information for your little one.

[frieze]

I was tested when my sis came back positive. I have no symptoms and my test results indicated I don't have celiacs. But, are these the right tests?

TRANSGLUTAMINASE IGG AB -- less than 3 (normal is less than 6)

ENDOMYSIAL AB IGA --- negative

And are these the tests they should do for my son?

My other son has asthma, which someone mentioned their son had. Are the two related?

So glad to have found this message board!! Will try to do more research, but being home with two little boys (age 2 and 4) I don't get a lot of computer time. Not that I'm complaining though :-D

Thanks again for all your help!

semantic quible, the tests you had proved you didn't have celiac THEN. testing needs to be repeated every once and a while, or with developement of sx. This one case were gene testing MIGHT be interesting. good luck

[Roda]

Your doctor should have ran a total IgA to make sure you are not IgA deficient which if you were, then would lend any IgA testing inaccurate. For yourself, you should have had an IgA/IgG DGP(deamidated gliadin peptide) test also. So you didn't get a full celiac panel. You don't necessarily need to have "all" the tests positive to have celiac. My youngest son only had a positive IgA tTG (IgA EMA wasn't done) and negaive on the gliadin antibodies and he does have celiac. Some people never test positive on blood work also. Again here is the complete list of tests:

total IgA

IgA/IgG tTG

IgA EMA

IgA/IgG DPG

Hope you get some answers soon.

[mama.liz07]

This is my daughter to a T. She's 18months and we are pending results right now.

Her constant weight in the 70% has been the stumbling block to get past our pediatrician, but the gastro jumped on top of all the same symptoms you've listed and immediately mentioned Celiac testing for me and her.

We've been lactose free for her entire life due to my personal issues with lactose and her accidental ingestion reaction.

I hope you can get some solid information for your little one.

Sure hope you guys get some answers. My boy is in the upper % too of height/weight, but the kid eats non-stop.

[GFinDC]

Hi,

The FAQ and Newbie info thread linked below may help you get familiar with the testing and starting the gluten-free diet.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

[brigitam]

my son came back negative on all tests. all my doctors (and we have seen LOTS) has said he is not celiac and most don't believe in gluten intolerance. he has been gluten free for almost 2 years and i still doubt myself without the diagnosis. he is not growing (still under 1st percentile) and has frequent tummy problems- because of accidentally having gluten. last week he was sick a lot and i thought, it must be something else, not gluten because i could think how or when he had some. then yesterday i found out that my husband has been giving him a new vitamin c tablet. i checked with the manufacturer and they contain gluten. long story, but the point is.... trust your instincts and doctors don't always know best.

[eatmeat4good]

Good for you mom! He needs you in his corner with all that is going against him physically. So glad you trusted your instincts and investigated until you found the source of gluten ingestion. It is so hard to know. You are a great example of Mother Knows Best!

[mama.liz07]

Thanks again for all the advice and support. All his tests came back negative, so we're on to just experimenting with diet. I've started giving him a really good probiotic which seems to be helping a bit. Stools look more normal and he's sleeping a little bit better. Next step is to try gluten free...we'll see how it goes :-)

[beachbirdie]

I was tested when my sis came back positive. I have no symptoms and my test results indicated I don't have celiacs. But, are these the right tests?

TRANSGLUTAMINASE IGG AB -- less than 3 (normal is less than 6)

ENDOMYSIAL AB IGA --- negative

And are these the tests they should do for my son?

My other son has asthma, which someone mentioned their son had. Are the two related?

So glad to have found this message board!! Will try to do more research, but being home with two little boys (age 2 and 4) I don't get a lot of computer time. Not that I'm complaining though :-D

Thanks again for all your help!

You also need a total serum IgA, and you need both versions of Deamidated gliadin peptides (DGP IgG and DGP IgA). Unfortunately, getting positive tests from kids is iffy. A lot of kids test negative even if they have the disease. BUT...I wouldn't let that stop me from testing!

You should be tested periodically as well since you have a sibling with celiac.

If your doc is willing, and your insurance will cover, the genetic profile is nice too.

Good luck with your little one.