Interesting Info If You're Having Trouble With Pediatrician

[cmc811]

I, for one, am having a really hard time getting my sons' pediatrician to run the complete Celiac panel. In desparation for answers I called up a pediatric GI office without a referral, explained the situation and was able to get an appt. Haven't went yet, but I've heard great things about the doctor so I am excited about the possiblity of someone actually listening this time.

 

Anyway, the dr is Dr. Jonah Essers and he has put together a presentation for General Pediatricians (since so many are clueless about Celiac!) that I stumbled across. I don't know that I agree with 100% of what he says but he talks a lot about placing patients in risk categories (high vs low) and how that first step can change how you interpret results. He talks about how in high risk patients (family history, symptomatic, associated condition, etc) you can't fully rely on negative serology. He talks about a negative tTg being a "suboptimal negative predictive value" while in a low risk patient the negative serology is more likely to accurately rule out Celiac.

 

He also talks about how this is a lifetime disease so it's VITAL to get the diagnosis right from the beginning and fully evaluate patients.

 

Anyway, it's interesting and informative. If you have 25 spare minutes you can watch it at Open Original Shared Link

And I'll let you know if I still like him after our appt on Monday

[snowmom]

This is interesting, thanks for posting.

 

I have a question about your signature. I noticed that you mentioned your 2d child has enamel issues on his baby teeth? Is that significant for celiac or autoimmune issues?

 

After my daughter was dx-ed with celiac, we had a blood panel done on her 2-year-old little brother. He had low Iga, which led to further testing, but that additional testing was negative. Around the same time, the pediatric dentist said his enamel didn't look right, that he had white spots on most of his baby teeth. Apparently that can be bad for future dental health, but the dentist didn't want to speculate on why it was happening. I specifically asked about whether that could be a symptom of celiac, and the dentist waved off my question. Do you know if there is a link between enamel issues and celiac?

[tri-gal]

Hi, just to respond to the q on dental issues: yes, enamel issues can be a sign of celiac., I have researched this as my dentist is completely clueless about celiac and every time I raise it (like this morning), he shuffles backwards out of the room and charges me some horrendous consultation fee. grrr.

 

Anyway, yes, reported effects include: discolouration, mottled or patchy (opaque cream/ white/ yellow), horizontal grooves, vertical pits, malformation, or lack of enamel all depending on severity and timing of onset vis a vis when the gene codes are turning on to grow the teeth. Observed particularly in permanent teeth, but scientific reports also indicate changes can occur in baby teeth. Malformations usually symmetrical and bilateral (occur on same teeth , other side of mouth, mirror image)

In my case, although I do not have official DX, I have two adult teeth with enamel only half way, then veneered. other teeth are rough and stain despite lack of plaque and good hygiene (tho dentist can't explain this - dah). at least two have chipped. I have also had tremendous receeding gums since my twenties, always blamed on my brushing style. I don't know if this is related, but it seems to me quite plausible.  Also, when mouth ulcers / cankers are present, these defects become more likely from celiac.

My nearly 6 year old daughter, who I hope to test soon, has two teeth with concave shapes (like an upside down u on top teeth) and already showing horizontal grooves and a cavity despite good hygiene.  Her dentist (different one) says not "diagnostic" but could be due to celiac.

 Will try to post links later if I can.

[cmc811]

This is interesting, thanks for posting.

 

I have a question about your signature. I noticed that you mentioned your 2d child has enamel issues on his baby teeth? Is that significant for celiac or autoimmune issues?

 

After my daughter was dx-ed with celiac, we had a blood panel done on her 2-year-old little brother. He had low Iga, which led to further testing, but that additional testing was negative. Around the same time, the pediatric dentist said his enamel didn't look right, that he had white spots on most of his baby teeth. Apparently that can be bad for future dental health, but the dentist didn't want to speculate on why it was happening. I specifically asked about whether that could be a symptom of celiac, and the dentist waved off my question. Do you know if there is a link between enamel issues and celiac?

Dental enamel issues can definitely be a sign but without other things it certainly isn't diagnostic. My youngest son has a few things going on that others have reported as symptoms but in his case I have very low suspicion that they are due to celiac. It's my older son that I really worry about the diagnosis being missed...

What tests did they order for your 2 year old? Having low IgA in itself is a risk factor. That combined with a sister dx'ed plus dental issues definitely puts him in a higher risk classification that Dr. Essers talked about in the video. Any other symptoms he's having?

[snowmom]

Thanks to you both for responding! This is really good information to have.

 

I have to go back and pull the 2d panel they did after the low IgA result, but I do recall that when I posted about it on this board, a few of the veteran celiac moms here said the testing sounded incomplete. As for other symptoms: last fall, around the time of sister's dx, he was having quite a bit of diarrhea and I was very concerned that we might be missing something.

 

But his system has regulated since then, and the diarrhea totally resolved about 2 months ago. Besides this enamel thing, he really doesn't have any issues of any kind at the moment -- his appetite, digestion, skin, behavior, and growth all seem perfectly normal. So, like your second child, cmc811, he seems low risk. But I did think it was weird that the dentist made such a big deal about the enamel issues but then was so dismissive of my follow-up questions.

[cmc811]

Thanks to you both for responding! This is really good information to have.

 

I have to go back and pull the 2d panel they did after the low IgA result, but I do recall that when I posted about it on this board, a few of the veteran celiac moms here said the testing sounded incomplete. As for other symptoms: last fall, around the time of sister's dx, he was having quite a bit of diarrhea and I was very concerned that we might be missing something.

 

But his system has regulated since then, and the diarrhea totally resolved about 2 months ago. Besides this enamel thing, he really doesn't have any issues of any kind at the moment -- his appetite, digestion, skin, behavior, and growth all seem perfectly normal. So, like your second child, cmc811, he seems low risk. But I did think it was weird that the dentist made such a big deal about the enamel issues but then was so dismissive of my follow-up questions.

Does your daughter see a pediatric GI? Could you take your son's results to him/her and ask their opinion about whether or not the tests that were done completely ruled it out?

I just got the call that my 2nd son's results were negative, but I don't even know what tests were ordered - will get report in mail on Monday, but I'm sure it wasn't the full panel So I will be talking to the pedi GI about whether or not Celiac has been effectively ruled out for either of them. My guess is that his answer will be no.....

[Cara in Boston]

I think I posted this on another thread, but it seems relevant here too.

 

Younger son diagnosed with celiac by blood and endoscopy.

 

Older son tested too (no symptoms, but he is related . . .) and was negative on every blood test.  He did, however have weird striations on his teeth . . . our doctor at the celiac clinic ordered a endoscopy for him too, based on his teeth alone.  Our dentist had also never heard of the connection.

 

Older son was found to not have celiac and strangely, as he got older, his teeth seemed to fill in and we don't see the problem anymore.  His diet has changed significantly (our house is gluten free) but he still eats gluten pretty regularly out of the house.  Not sure if there was a connection or not.  I would describe his diet as "gluten lite."

[LauraTX]

In general, you usually can get in to a specialist without a formal referral from your primary care doctor.  Just call up and say you need to make an appointment.  Sometimes an insurance plan will require a referral to be in place before a specialist appointment, but usually you just call the PCP's office and tell them the appointment day and they just do some paperwork.  I wonder if the doctor looks at it at all.  If not, it would be worth pushing or going to another doctor and have them give you a referral, check with your insurance company to make sure you do all of the formalities correctly so they pay for the specialist appointment.  

 

Great job on your part, Misty, for advocating for your kiddo.  My biological mother asked the pediatrician to do testing on my little brothers after my diagnosis and the doctor just brushed it off saying something like the insurance won't pay for it if there are no symptoms.  It upsets me greatly that she won't push to get them tested for that and another inherited disorder I have.  

[cmc811]

Met Dr. Essers today and overall, I really liked him. He still didn't order all the tests to complete the panel, which I thought was odd, but he did order EMA-IgA and TSH, Lipase and CRP. Other tests like CBC and CMP had been done recently so he didn't repeat those. I specifically asked about DGP but he didn't think that would tell us anything more. Honestly though that was the only thing I left the office confused about. He spent 45 minutes with us and we talked a lot about different symptoms and what they could mean. If all tests come back negative then he wants to give it another month or two to see if symptoms continue and if so, he'll do a scope regardless of what the test results say because it could reveal a non-celiac reason for the pain/nausea or he could be in the small group of people that don't have antibodies in their blood but still show intestinal damage.

 

He was also extremely interested in our 3 yr old's dental enamel issues. We didn't have him with us but I asked a few questions about him and when I mentioned the enamel he perked right up. He said to ask the dentist more about his enamel and try to get some info about whether it's mild, moderate, severe, etc. He then said to call him with what the dentist says and most likely he'll want to scope him too, even with a negative ttg.

 

We still don't know if our 5 year old's issues are Celiac related but at least this Dr seemed to have intentions of figuring it out!

[Roda]

At the time I was diagnosed I had asked my children's pediatrician to order the tests for them.  He refused and I was mad as can be.  They both were seeing an allergist at the time so I called and explained the situation and no problem, tests ordered.  Both were negative then, but two years later my youngest son tested positive on his IgA tTg.  Oldest son has always been negative on blood work and had a negative biopsy.  He went gluten free a few years ago because of issues and they cleared up.  He is diagnosed as non celiac gluten intolerant.  Good luck in your journey. 

[torontomom]

Thanks for this post! I am having trouble with my daughter's doctor. She doesn't think ordering the blood tests or referring to a pediatric GI or allergist is necessary. 

For more info. on our situation, you can read my discussion on the board (just posted it a few hours ago), but in a nutshell: My daughter is 6 and she has abdominal pain, occasionally with vomiting (no other signs of a virus), bloating, gas, itchy skin, a red bumpy rash that comes and goes (especially on cheeks), weak dental enamel, ridged nails, canker sores, and bad body odour and bad breath (poor kid!) I really believe that food is the culprit, but we've never been able to see a direct relationship between something she's eaten and her symptoms. 

I have an autoimmune disease myself (one similar to lupus called UCTD and also psoriatic arthritis) and my symptoms are similar to what I hear about in celiac disease too: neuropathy, joint and muscle pain, fatigue, costochondritis, Raynaud's, tendonitis, diarrhea, GERD, bloating, migraines, etc. I have a high +ANA (1:640 speckled and homogenous). I had the celiac bloodwork run (not sure which specific tests though) and it was negative. 

I saw that you have keratosis pilaris listed in your list of symptoms. Is that related to celiac disease? I have that and so do 2 of my kids. But what I really noticed were your comments about dental enamel. My daughter has a whole mouthful of cavities (I think 12) by the time she was 3, plus 2 root canals and crowns. The dentist couldn't tell us why because my other 2 children have never had a cavity and they have a very similar diet and oral hygiene. My daughter actually always liked brushing her teeth and she drank water rather than milk and juice nearly all of the time. 

Anyway, our family doctor doesn't think a GI/allergy referral is necessary. I was debating trying a gluten and dairy free diet anyway for a set period of time to see whether things improve (for me as well as for my 6 year old). 

 

[Cara in Boston]

Do not change your diet until you know you are done with testing.  Even a "trial" diet can cause blood tests to be negative for months.