Doctor Refuses To Test 6 Year Old - What Would You Do?

[torontomom]

Hello!

I've been browsing your forum and I've found a lot of the other discussions very helpful. My situation is that I have a 6 year old daughter who I think has food allergies or intolerances, but her doctor isn't concerned with the symptoms she has and doesn't want to refer us for further testing. I specifically wonder about celiac disease, but also about food allergies. 

I'll try to keep this brief! The symptoms she has that worry me are frequent abdominal pain, bloating, frequent very smelly gas, weak tooth enamel, rashes and general itchy skin, and bad body odour. She also sometimes throws up when she has tummy aches, but her bowel movements are pretty normal. 

 

The pain is in the centre of her stomach just above the belly button and sometimes to the left of that area. Just today she told me at breakfast time that she had a tummy ache, but didn't seem upset by it so I sent her to school as normal. When I picked her up in the afternoon she was crouched on the ground crying and her teacher said that she'd complained of a tummy ache after lunch, then it had seemed to go away, but got worse late in the afternoon just before the end of school. I don't think she was constipated (which is what our doctor always suggests when I ask about stomach pain, even though Sofie has BMs every day). She often has a rounded tummy. 

Sometimes the tummy aches are accompanied by vomiting, but not very often. She did have an episode like that last weekend. We've never been able to tie it to a specific food that she has eaten. When I took Sofie to the doctor about pain + vomiting, she said it was likely a virus, but none of the rest of us got sick (and stomach flu almost always ends up getting passed around our family when we do get it). 

Sofie has had a lot of dental work, including several root canals and crowns and many cavities. I have 2 other children (one older, one younger) and neither has had any dental problems. I actually started wondering about celiac when I was trying to figure out why her tooth enamel was so weak. I looked it up online and one of the first things that came up was celiac disease. 

She sometimes complains about itchy skin and used to get bouts of hives for no apparent reason though that hasn't happened much in the last year. She gets a red, bumpy rash on her cheeks sometimes which the doctor thought was eczema, but I'm not convinced because my 8 year old has eczema all over his legs and it looks very different. 

What else was there? Oh, the body odour. Last year Sofie suddenly started to smell like a teenager. She was only 5 though. It is mostly under her arms and it's a really strong smell. I eventually had to start using a natural deodorant, which does help, but isn't she just too young for this? Her doctor said it's normal in a minority of kids. The only thing she was concerned about was premature puberty, but she has no other signs of that. She also has bad breath quite a lot despite always brushing and flossing (we're very careful about that because of her dental problems). 

What Sofie DOESN'T have is any problems with growth (height and weight are both 85th percentile right now), only occasionally gets diarrhea, doesn't seem constipated... 

I have an autoimmune disease myself (I have something similar to lupus called UCTD and also Psoriatic Arthritis, which are both autoimmune). We have Hashimoto's and type 1 diabetes in our family too, but no one with celiac. I had the blood test for celiac run because many of my AI disease symptoms could be celiac symptoms as well: neuropathy, muscle and joint pain, GERD, diarrhea, migraines, other bowel issues (like fissures), fatigue, low ferritin, etc. But the test was negative. 

Sorry this is so long! What I really wanted to ask was: Do you think I should push harder for a GI referral and an allergist referral? Could my daughter's symptoms be consistent with celiac? I know that there are other allergies/intolerances that could account for them too. I was interested in doing a trial of an anti-inflammatory diet for myself to see if it improved my own disease symptoms. I would remove dairy, gluten, and refined sugar. I thought maybe the whole family would do it together as Sofie has these issues and my 8 year old has eczema and frequent ear infections which I've heard may improve on a gluten and dairy free diet. He also has Asperger's and I know that it's quite common for parents to say that some of the issues that come along with that improve when gluten and casein are removed. My husband and youngest child have no medical issues, but they're willing to come along for the ride because it would be easier for the rest of us. 

I do know that testing wouldn't be accurate if gluten was already out of our diets, so I'm just wondering whether to push for testing first. 

Thanks so much for any feedback or thoughts!

Torontomom

 

[LauraTX]

Time to change doctors.  Also, if your insurance does not require formal referrals to specialists, you can make an appointment yourself with a pedi GI and allergist.  If your insurance requires referrals you can still do this, but they will not pay for those visits.  However, probably the best route is to change her primary care doctor ASAP, because if a doctor won't listen to you on this, what else will they ignore?  Not worth messing with them for another 12+ years.   

 

I think you are correct about getting her tested.  Any kid who still has GI issues after following the primary care doctors recommendations should certainly see a specialist.

[torontomom]

Time to change doctors.  Also, if your insurance does not require formal referrals to specialists, you can make an appointment yourself with a pedi GI and allergist.  If your insurance requires referrals you can still do this, but they will not pay for those visits.  However, probably the best route is to change her primary care doctor ASAP, because if a doctor won't listen to you on this, what else will they ignore?  Not worth messing with them for another 12+ years.   

 

I think you are correct about getting her tested.  Any kid who still has GI issues after following the primary care doctors recommendations should certainly see a specialist.

Thank you! We live in Canada so our medical system is a bit different. All primary dr. and specialist appointments, as well as testing is covered by government health insurance. I would need a referral to a GI doctor and allergist. 

I agree that I need to find her a new doctor. She currently sees the same family doctor that all of us have. I'm going to ask friends and other parents at school to see if anyone has a ped. they really like who is taking new patients. I also went through a long and frustrating ordeal with this doctor trying to get my own autoimmune disease diagnosed. Maybe it's time that we all move on. 

[greenbeanie]

Change doctors, change doctors! We were in a very similar situation with my daughter. She had problems consistent with celiac essentially since birth (born early and had a traumatic birth, and was on four IV antibiotics for her first week of life, which was necessary at the time but surely messed up her GI tract). Her main symptoms are listed in my signature below, and you can click on my name and select "find content" to see past posts I've made with more details, but here are the highlights:

My daughter was average size at birth despite being born early, and she was in the 90th-95th percentile for height for most of her first three years. We took her to the doctor over and over and over again with projectile vomiting, screaming and twitching in her sleep, oozing diaper rashes that took weeks to go away, other skin rashes, excessive spitting up and gagging on baby food, muscle tension and delayed reflexes (fists clenched tightly until she was almost one), excessive startling and extreme sound sensitivity, and daily complains about tummy aches starting as soon as she could talk. Fortunately, her teeth are fine. She did have loose stools sometimes, but that really wasn't a prominent issue.

Her doctor checked for some basic things like pyloric stenosis and hearing problems, but when those tests were normal the doctor simply insisted that I was worried about nothing and treated me like an overanxious parent who was an idiot. The more I brought my daughter back and insisted something was wrong, the more determined she became to convince me that I was overreacting. Her biggest argument? That my daughter couldn't possibly have anything really wrong because she's tall for her age!! At one point she even recommended that if I just "have a cup of tea and a nice hot bath" I'll relax and see that my daughter is "fit as a fiddle"! We lived in a rural area with few options, but at one point I said we were going to find a different doctor immediately if she wouldn't refer us to specialists. I am a quiet and fairly non-confrontational person by nature, and it very much went against my personality to make a threat that way, but I was desperate. We got referrals to an allergist and a neurologist, but then her food allergy tests came back negative and that further reinforced the pediatrician's belief that there was nothing really wrong. The neurologist did find a bunch of delays and thought she had CP for a while, but her symptoms kept changing (as her nursing/eating habits changed!) and we didn't get any clear answers there either. Anyhow, it took several more years until I learned about celiac on my own and decided to keep switching doctors until one took us seriously - and we did have to switch twice to find one. But he agreed to order the celiac tests and she had very strong positives on the whole panel he ran, then had celiac confirmed by endoscopy. I am still so angry about how condescending the previous doctors were and the fact that she would have been diagnosed much sooner if they had just taken my concerns seriously - but our lives have improved so tremendously since my daughter's diagnosis that I try not to dwell on the past too much.

If you have a doctor who won't test your daughter, please change doctors - even if it's inconvenient, embarrassing, difficult dealing with insurance, etc. It sounds like your daughter has some health issues going on that need professional evaluation, so even if it's not celiac you still need a doctor who will really investigate things seriously.

Good luck, and welcome to the forum!

Edited to add: I was in the middle of writing my post and didn't see your second comments above until I posted it, but it sounds like you've already concluded that a new doctor is in order. I hope you find a great one!

[torontomom]

Thank you greenbeanie!

 

"Have a cup of tea and nice hot bath!" Hahaha! Thank you for the laugh.  

I am also a quiet and non-confrontational person. I know I need to find someone to take this seriously, but it's just sort of daunting right now to think of approaching her doctor again. Perhaps I won't even bother and I'll switch straight away if I can find someone good. 

Parents obviously don't ALWAYS know better than doctors when it comes to their kids' health, but I think we can just sense when an issue is a serious one. My son has Aspergers (he is 8) and he had a variety of delays when he was a baby/toddler with low muscle tone, fine/gross motor skills, speech, had sensory issues (with tastes, textures, smells, movement, sound), and was an extraordinarily picky eater. He was my first and I didn't have anyone to compare him to so it took me a while to understand that his development was not normal. But when I did, the doctor was happy to refer him to speech therapy, but really did not see any other problems. I had brought in a list of things I was concerned about (written down so I wouldn't forget) and the doctor said that making a list was "kind of anal". He also assured me that "he clearly doesn't have autism!" simply because my son made eye contact and pointed at things. Argh. 

[torontomom]

Also re. symptoms, Sofie gets canker sores on her gums or tongue that really bother her. She also has very obvious ridges in her nails. 

[StephanieL]

If you are going to test, do it now. You can't be off gluten for the testing so if you push start now.

 

It doesn't sound like allergies.  Allergy symptoms appear 20 minutes to 2 hours after eating and include things like nausea, vomiting, hives, swelling, breathing issues, and so on.  Also, in the absence of a really spot on allergic reaction, Dr's shouldn't test for whatever. The current recommendation is that you only test for things there has been a know reaction to because the tests are notoriously inaccurate.

 

Intolerances aren't really testable. 

 

 

I think you best bet while trying to get into a GI would be to keep a VERY detailed food log.  Everything that passes over her lips and then another area to write any signs and symptoms she has.  Often this is the only way to really get a better idea.  

[1desperateladysaved]

http://www.mayoclinic.org/healthy-living/adult-health/multimedia/nails/sls-20076131%C2'> This is a link for pictures of various nail problems that warrant attention.  Hopefully, I can get it to work.

 

I feel you need to find someone to help you with testing.  Six is early to lose the tooth enamel, especially given the siblings teeth are well.  I had many symptoms that you listed and I have celiac.  Now (while she is young) is the time to find out.

 

Best wishes for the health of your family.

 

Dee

[mommida]

I've been here long enough to tell you these symptoms should not be ignored.

 

They can be related to Celiac, and that should be enough for the referral to a ped. GI.

 

A quick glance about my daughter's case....

infant/toddler age bracket

Celiac symptoms, blown off by ped office until I did suggest possible Celiac.  Bloated belly, occasional vomiting, "D" alternating with constipation.  diagnosed Celiac at 16 months old from blood tests (celiac panel and genetic) she was too sick for the endoscopy

 

on a strict gluten free diet

 

then she turned 6 and vomiting started to be a major issue (up to 5/6 times a day), "D" alternating with constipation, palpating done by doctors ~ always said she was severely constipated, (she could finally talk so when asked) daily headaches, and she said her *whole stomach hurt* interesting because she was diagnosed with Eosinophilic Esophagitis, you would think she would have complained of more GERD like symptoms?

 

Now she is 11.  She went through puberty early, diagnosed precocious puberty

 

There are a few overlaps of the symptoms you describe and my daughter's case.  Some quick facts....  There is a link between Celiac and Eosinophilic Esophagitis (EoE or EE).  Once activated, eosinophils can actively damage healthy tissue for up to 12 DAYS.  (These are mostly "food allergen triggers" but evidence grows about airborne "allergen triggers".  (There is your "mystery" allergy/ intolerance and no doctor seems to have reason for EE.)

 

Keep a food log and push for some further testing.

[Fimac]

You could purchase the biocard from Rexall. A positive test should be enough to get your doctor to refer you for further testing. If you have celiac support group in your area they will be able to point you to a doctor who is more open to further testing.

[GFinDC]

Hi,

 

Can your doctor prove she is getting adequate nutrition?  Celiac can cause mal-absorption and that could cause the dental enamel problems and the fingernail ridges.  The doctor should do a test for nutirional levels and look for anything that is low.  They should not dismiss her symptoms without testing for the obvious causes.

[NatureChick]

1. Get another doctor. Get the celiac tests before trying a gluten-free diet.

2. If they come back negative, try a gluten-free diet on your own anyway in case she has non-celiac gluten intolerance. 

3. If you're still concerned about other food allergies/intolerances, look up rotation diet for a way to pair reactions with specific foods that is easier than a full-on elimination diet.

And I concur about testing for deficiencies, very common among those who have gluten issues.

When it comes to enamel on teeth, knowing she has issues I would avoid any carbonated beverages and many fruit juices, but if they can't be avoided, to drink water afterward to reduce the acidity. And you're not supposed to brush teeth for 30 minutes after eating/drinking in order to avoid abrasion to the enamel when it is at its softest.

[Shaylamarie]

Hello!

I've been browsing your forum and I've found a lot of the other discussions very helpful. My situation is that I have a 6 year old daughter who I think has food allergies or intolerances, but her doctor isn't concerned with the symptoms she has and doesn't want to refer us for further testing. I specifically wonder about celiac disease, but also about food allergies. 

I'll try to keep this brief! The symptoms she has that worry me are frequent abdominal pain, bloating, frequent very smelly gas, weak tooth enamel, rashes and general itchy skin, and bad body odour. She also sometimes throws up when she has tummy aches, but her bowel movements are pretty normal. 

 

The pain is in the centre of her stomach just above the belly button and sometimes to the left of that area. Just today she told me at breakfast time that she had a tummy ache, but didn't seem upset by it so I sent her to school as normal. When I picked her up in the afternoon she was crouched on the ground crying and her teacher said that she'd complained of a tummy ache after lunch, then it had seemed to go away, but got worse late in the afternoon just before the end of school. I don't think she was constipated (which is what our doctor always suggests when I ask about stomach pain, even though Sofie has BMs every day). She often has a rounded tummy. 

Sometimes the tummy aches are accompanied by vomiting, but not very often. She did have an episode like that last weekend. We've never been able to tie it to a specific food that she has eaten. When I took Sofie to the doctor about pain + vomiting, she said it was likely a virus, but none of the rest of us got sick (and stomach flu almost always ends up getting passed around our family when we do get it). 

Sofie has had a lot of dental work, including several root canals and crowns and many cavities. I have 2 other children (one older, one younger) and neither has had any dental problems. I actually started wondering about celiac when I was trying to figure out why her tooth enamel was so weak. I looked it up online and one of the first things that came up was celiac disease. 

She sometimes complains about itchy skin and used to get bouts of hives for no apparent reason though that hasn't happened much in the last year. She gets a red, bumpy rash on her cheeks sometimes which the doctor thought was eczema, but I'm not convinced because my 8 year old has eczema all over his legs and it looks very different. 

What else was there? Oh, the body odour. Last year Sofie suddenly started to smell like a teenager. She was only 5 though. It is mostly under her arms and it's a really strong smell. I eventually had to start using a natural deodorant, which does help, but isn't she just too young for this? Her doctor said it's normal in a minority of kids. The only thing she was concerned about was premature puberty, but she has no other signs of that. She also has bad breath quite a lot despite always brushing and flossing (we're very careful about that because of her dental problems). 

What Sofie DOESN'T have is any problems with growth (height and weight are both 85th percentile right now), only occasionally gets diarrhea, doesn't seem constipated... 

I have an autoimmune disease myself (I have something similar to lupus called UCTD and also Psoriatic Arthritis, which are both autoimmune). We have Hashimoto's and type 1 diabetes in our family too, but no one with celiac. I had the blood test for celiac run because many of my AI disease symptoms could be celiac symptoms as well: neuropathy, muscle and joint pain, GERD, diarrhea, migraines, other bowel issues (like fissures), fatigue, low ferritin, etc. But the test was negative. 

Sorry this is so long! What I really wanted to ask was: Do you think I should push harder for a GI referral and an allergist referral? Could my daughter's symptoms be consistent with celiac? I know that there are other allergies/intolerances that could account for them too. I was interested in doing a trial of an anti-inflammatory diet for myself to see if it improved my own disease symptoms. I would remove dairy, gluten, and refined sugar. I thought maybe the whole family would do it together as Sofie has these issues and my 8 year old has eczema and frequent ear infections which I've heard may improve on a gluten and dairy free diet. He also has Asperger's and I know that it's quite common for parents to say that some of the issues that come along with that improve when gluten and casein are removed. My husband and youngest child have no medical issues, but they're willing to come along for the ride because it would be easier for the rest of us. 

I do know that testing wouldn't be accurate if gluten was already out of our diets, so I'm just wondering whether to push for testing first. 

Thanks so much for any feedback or thoughts!

Torontomom

 

my daughter was found to be gluten intolerant by an allergist 6 years ago.  Her main doctor still doesnt believe she is allergic to gluten.  I dont care what she thinks.  I still take her there for her yearly check ups etc.  I just have taken her off gluten.  Her symptoms were that she could barely speak because of phlegm in the throat.  she was constantly clearing her throat to the point that it would give us all headaches and she would lose her voice.  Her doctor said it was a "tick"  (nervous habit) and that we should ignore it.  After 1 week of being off gluten, the throat clearing stopped.  Still to this day the doctor doesnt believe me.  If my daughter sneaks gluten at school, her nose will bleed the next day, and the throat clearing will start.  Just do what you think is best.  Doctors dont know everything.

[DinaZ]

Hello!

I've been browsing your forum and I've found a lot of the other discussions very helpful. My situation is that I have a 6 year old daughter who I think has food allergies or intolerances, but her doctor isn't concerned with the symptoms she has and doesn't want to refer us for further testing. I specifically wonder about celiac disease, but also about food allergies. 

I'll try to keep this brief! The symptoms she has that worry me are frequent abdominal pain, bloating, frequent very smelly gas, weak tooth enamel, rashes and general itchy skin, and bad body odour. She also sometimes throws up when she has tummy aches, but her bowel movements are pretty normal. 

 

The pain is in the centre of her stomach just above the belly button and sometimes to the left of that area. Just today she told me at breakfast time that she had a tummy ache, but didn't seem upset by it so I sent her to school as normal. When I picked her up in the afternoon she was crouched on the ground crying and her teacher said that she'd complained of a tummy ache after lunch, then it had seemed to go away, but got worse late in the afternoon just before the end of school. I don't think she was constipated (which is what our doctor always suggests when I ask about stomach pain, even though Sofie has BMs every day). She often has a rounded tummy. 

Sometimes the tummy aches are accompanied by vomiting, but not very often. She did have an episode like that last weekend. We've never been able to tie it to a specific food that she has eaten. When I took Sofie to the doctor about pain + vomiting, she said it was likely a virus, but none of the rest of us got sick (and stomach flu almost always ends up getting passed around our family when we do get it). 

Sofie has had a lot of dental work, including several root canals and crowns and many cavities. I have 2 other children (one older, one younger) and neither has had any dental problems. I actually started wondering about celiac when I was trying to figure out why her tooth enamel was so weak. I looked it up online and one of the first things that came up was celiac disease. 

She sometimes complains about itchy skin and used to get bouts of hives for no apparent reason though that hasn't happened much in the last year. She gets a red, bumpy rash on her cheeks sometimes which the doctor thought was eczema, but I'm not convinced because my 8 year old has eczema all over his legs and it looks very different. 

What else was there? Oh, the body odour. Last year Sofie suddenly started to smell like a teenager. She was only 5 though. It is mostly under her arms and it's a really strong smell. I eventually had to start using a natural deodorant, which does help, but isn't she just too young for this? Her doctor said it's normal in a minority of kids. The only thing she was concerned about was premature puberty, but she has no other signs of that. She also has bad breath quite a lot despite always brushing and flossing (we're very careful about that because of her dental problems). 

What Sofie DOESN'T have is any problems with growth (height and weight are both 85th percentile right now), only occasionally gets diarrhea, doesn't seem constipated... 

I have an autoimmune disease myself (I have something similar to lupus called UCTD and also Psoriatic Arthritis, which are both autoimmune). We have Hashimoto's and type 1 diabetes in our family too, but no one with celiac. I had the blood test for celiac run because many of my AI disease symptoms could be celiac symptoms as well: neuropathy, muscle and joint pain, GERD, diarrhea, migraines, other bowel issues (like fissures), fatigue, low ferritin, etc. But the test was negative. 

Sorry this is so long! What I really wanted to ask was: Do you think I should push harder for a GI referral and an allergist referral? Could my daughter's symptoms be consistent with celiac? I know that there are other allergies/intolerances that could account for them too. I was interested in doing a trial of an anti-inflammatory diet for myself to see if it improved my own disease symptoms. I would remove dairy, gluten, and refined sugar. I thought maybe the whole family would do it together as Sofie has these issues and my 8 year old has eczema and frequent ear infections which I've heard may improve on a gluten and dairy free diet. He also has Asperger's and I know that it's quite common for parents to say that some of the issues that come along with that improve when gluten and casein are removed. My husband and youngest child have no medical issues, but they're willing to come along for the ride because it would be easier for the rest of us. 

I do know that testing wouldn't be accurate if gluten was already out of our diets, so I'm just wondering whether to push for testing first. 

Thanks so much for any feedback or thoughts!

Torontomom

 

It sounds like you need a new doctor. The symptoms you describe sounds like possibly celiac to me from my recent research. Have you had her blood work done? My 6 yo was also just diagnosed although we are waiting for the biopsy results next week. I took her to her doctor a year ago after she complained day after day of a tummy ache. She never cried just complained daily but usually went about her day. The doctor could not see anything concerning. She continued to complained every now and then but in the last several months, complaints came daily and loose stool almost every morning. No other symptoms, so I took her to the doctor again for the same reason. This time he ordered blood work for her. The blood test came back very likely for celiac. So he recommended a GI doctor. That doctor said that based on the lab work and what he saw with the endoscopy, it will most likely be celiac.

[beth01]

I get everything in writing if I don't like what I hear from doctors.  I started this the last few weeks and I have seen 5 doctors in that time.  Every time I hear something from a doctor I really don't like( we don't think this fits, you don't need that out, blah, blah, blah).  You know how many signed statements I have from disagreeing doctors?  Not a one.  They don't like to put things like that in writing and then sign their names to it so when it is proven they are wrong they are opening themselves to a law suit.  It sucks that we have to be so unbelievably pro-active for ourselves but when you are constantly going to doctors for help and they don't provide it or push us off to another doctor, what are we to do?

 

Get another doctor, and then another if that's what it takes.  It isn't their health that suffers.