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Teeth!

KB.tpw

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KB.tpw Rookie
KB.tpw
Posted

I recently discovered that I have celiac disease; although I thought I had it 4 years ago and gave up on the idea after a false negative test.  I don't want to be the crazy mom looking at every tiny thing as a possible symptom, but some things just scream celiac to me.  My 8.5 year old daughter was hospitalized for severe stomach pain at 3 years old and discharged 2 days later because they couldn't find anything. By 5 years old, she was having recurrent fevers and horrible mouth ulcers and the infectious disease specialist said she may have something called PFAPA.  She still gets random low grade fevers and constantly has mouth ulcers. Her pedi tried to scare me when I asked him to test her for celiac at 6 years old. He let me know that it was an invasive and uncomfortable procedure. We have a new doctor now, but even he knows very little about the disease. She's now 8.5 and just hit 4 feet tall and 50 lbs. I realize that isn't sickly by any means, but she's a pretty tiny girl.  

 

The thing I notice most right now is her teeth. I linked a couple of pics.  Her dentist always says she looks great.  She brushes and flosses and has never missed a 6 month check up since she was 2 years old.  She did get one cavity in a baby tooth.  The dentist said it should come out before it was a problem, but she ended up having to pull it a few months ago because it wasn't budging.  A new tooth still hasn't grown into the space.  I asked at the last visit (a few weeks ago) if the marks on her teeth were normal. I explained to her that I have celiac and suspected it in my daughter.  She said, "No I see that in all kinds of kids. Sometimes it's from too much flouride." .... Just doesn't sound right to me.

 

She has an appointment at the end of the month for a consult with a pedi GI.  Hopefully we can get some answers and get this girl gluten free.

 

Has anyone else had a child with the mouth sores and teeth issues who was later diagnosed?  I just don't see how all the doctors don't even take a second look at her.

 http://www.imageurlhost.com/images/fwi5q9zhm4zz981qio0y.webp

http://www.imageurlhost.com/images/5ao19jhnii2nyg6ll8mo.webp

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cyclinglady Grand Master
cyclinglady
Posted

I am not a dentist, but those look like teeth affected by celiac based on my highly scientific research "Google Images"! Ha!

Sure an endoscopy is invasive, but why not start with a celiac blood panel? Here is a link to the University of Chicago's celiac website. Print off testing procedures and symptom list to share with the Ped Gastro.

Open Original Shared Link

Have her continue to eat gluten until all testing is complete. Do not give up!

My doc readily ordered a celiac panel for my 13 year old and she did not have a single symptom. He did check her for anemia since that was my main symptom at the time I was diagnosed.

1desperateladysaved Proficient
1desperateladysaved
Posted

My dentist actually figured I had an auto-immune disease 5 years before my diagnosis.  Your note makes me wonder if all of those kids with teeth that look like that have celiac.  Surely, they should be checked.  Keep on taking care of your children!

 

Dee

nvsmom Community Regular
nvsmom
Posted

If her tests come back negative, and you suspect celiac disease, make her gluten-free anyways. (Don't go gluten-free before testing is done.) Those tests do miss some people (kids especially) and it's more important to have them healthy than have an official diagnosis.

 

I had to do that with my boys who tested negative. Miraculously they are doing much better gluten-free in spite of what their doctor recommended.  :rolleyes:

 

Best wishes.

Cara in Boston Enthusiast
Cara in Boston
Posted

If you have been diagnosed with Celiac, all your first degree relatives (children, parents, siblings) should be tested - even if they have no symptoms at all.  Your kids should be tested every two years . . . sooner if they begin to display symptoms.  Celiac can develop at any time so a negative test a few years ago does not mean you don't have it now. 

 

Your daughter has symptoms.

 

My older son tested negative on the blood tests but our ped. GI at the Celiac Center wanted him to have an endoscopy anyway because of discolored striations on his teeth. He still tested negative - and still has no other symptoms so we just go in every other year for a blood panel.  My younger son and I have Celiac.

 

Try to find a pediatric GI who knows about Celiac and how the tests can often be wrong in children.  After all testing is complete, try the diet anyway and consider it the "final" test.

DinaZ Newbie
DinaZ
Posted

If you have been diagnosed with Celiac, all your first degree relatives (children, parents, siblings) should be tested - even if they have no symptoms at all.  Your kids should be tested every two years . . . sooner if they begin to display symptoms.  Celiac can develop at any time so a negative test a few years ago does not mean you don't have it now. 

 

Your daughter has symptoms.

 

My older son tested negative on the blood tests but our ped. GI at the Celiac Center wanted him to have an endoscopy anyway because of discolored striations on his teeth. He still tested negative - and still has no other symptoms so we just go in every other year for a blood panel.  My younger son and I have Celiac.

 

Try to find a pediatric GI who knows about Celiac and how the tests can often be wrong in children.  After all testing is complete, try the diet anyway and consider it the "final" test.

My 6 yo daughter has just been diagnosed with celiac. The blood work said yes and she just had an endoscopy, we are waiting for biopsy results coming next week. Although the doctor said it looks like celiac. They told the rest of us to get blood work done to see if we have it too. I have an identical twin sister. Does she need to be tested as well? And her family?

Georgia-guy Enthusiast
Georgia-guy
Posted

KB, not trying to take over. But Cyclinglady, the tooth pictures, that discoloration is a sign of celiac?

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cyclinglady Grand Master
cyclinglady
Posted

KB, not trying to take over. But Cyclinglady, the tooth pictures, that discoloration is a sign of celiac?

That is what I found when I googled images of celiac and teeth.

Cara in Boston Enthusiast
Cara in Boston
Posted

Just first degree relatives should be tested right away.  Your daughter could have inherited it from her father, so your twin does not necessarily need to be tested.  In our family, my younger son and I are positive, my husband and other son are negative.  It is very clear that celiac (undiagnosed) runs in my husband's family (none of them will get tested) so a kid could get it from both sides.

 

If both parents are negative, you won't really know which family it runs in so you should notify all extended family to be on the lookout for symptoms of celiac or other autoimmune disorders.

luvs2eat Collaborator
luvs2eat
Posted

This may be completely random.... but I've started "oil pulling" with organic, unprocessed coconut oil... and have suggested that my daughter, who's had dental issues all of her life, do the same. I've noticed an almost immediate improvement in my own gum (gingivitis) issues and tooth discoloration/whitening in the few times I've done it and can't believe how awesome it is. I've only been able to manage 10 min. during a shower, but the positive effects have been quite remarkable.

Georgia-guy Enthusiast
Georgia-guy
Posted

What is "oil pulling"?

  • 2 weeks later...
thepeach80 Rookie
thepeach80
Posted

Google it. The thought of it makes me gag, lol. We're talking to our ped soon about testing the kids. My 5yo has 3 crowns she had put on before her 5th birthday. Been to the dentist every 6 months since she was 2.5. Makes me wonder.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

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      By trents · Posted

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      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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