9 year old positive TTG but Paediatrician won’t investigate further

[Tess-G]

Hello, I’m looking for any advice...

My 9 year old had a positive TTG test 10.8 (lab range >10 is positive). She’s underweight, complains most days of stomach aches and also has very low ferritin levels. We were referred to a Paediatrician who said that unless the TTG levels were in the 100’s he wouldn’t consider Celiac disease. No other tests were offered apart from waiting 6 months to see if another TTG test shows a much higher level. Is this correct? Can we basically rule out Celiac disease as her TTG levels are only just out of the normal range? 

Any advice appreciated, thanks! 

[RMJ]

Can you take her to a pediatric gastroenterologist or would you need a referral from this unhelpful doctor?  Sounds like he is making up his own range (>100) for positive which is not appropriate.

[frieze]

what does the ped think is the problem?  the kiddo is sick, why?  was her IGA level within normal?  i would push for further testing, including DGP  A+G.  you are going to lose valuable growth time if you wait.

[Tess-G]

On 9/17/2018 at 12:03 AM, RMJ said:

Can you take her to a pediatric gastroenterologist or would you need a referral from this unhelpful doctor?  Sounds like he is making up his own range (>100) for positive which is not appropriate.

Unfortunately this is the paediatrician we were referred to by our general doctor.

[Tess-G]

On 9/17/2018 at 8:10 PM, frieze said:

what does the ped think is the problem?  the kiddo is sick, why?  was her IGA level within normal?  i would push for further testing, including DGP  A+G.  you are going to lose valuable growth time if you wait.

Thanks for your response. Yes, her IGA level was normal. He just said that with the current high level of child obesity, it’s better for her to be on the underweight side. He had no interest in her diet or what could be causing the stomach aches. As she isn’t anaemic he wasn’t concerned about her low iron levels (normal range 15-300, hers were 4). He suggested we re-test in 6 months to see if the TTG levels have increased to a level that he considers acceptable for further investigation (in the 100’s). 

We’ll look into DGP A&G testing. 

[cyclinglady]

Try to get the rest of the panel: EMA and DGP.  I am biopsy confirmed, yet I only test positive to the DGP IgA even in follow up testing.  My GIs have no explanation (neither does the internet, really).  The TTG does not catch all celiacs and some are seronegative.  They will never test positive on the blood tests.  

My own kid has always been underweight, but her head circumference and height were always on track.  

More worrisome than your dauhter’s weight is her low ferritin levels.  That was what prompted my doctor to test for celiac disease along with my having Hashimoto’s thyroiditis.  

Edited September 20, 2018 by cyclinglady

[pandapotato]

I just went through this with my 11 yr old. She was "mild" positive in the first test (they said 4 & Over as positive... she was 4). The second one must be the one you said, because they said 10 & over was positive, she was at 20. She got biopsied last week and it was positive. 

I find that in our medical system, sometimes you have to push and ask repeatedly. I've been bringing up her stomach issues at every wellness check up since she was 2 or 3.. they only FINALLY did blood work in July because she passed out twice this year and I kept bringing up whether it had anything to do with stomach issues, allergies, etc. (Seemed to have been unrelated-- one time she had the flu, the other time was after a lot of exercise.). I would keep your kid eating plenty of gluten and ask for another panel. Frankly I'm ticked off that we probably could've saved her 5++ years of discomfort. I had no idea that a blood test could so easily flag potential celiac issues until recently.

[RMJ]

Your doctor is potentially keeping her ill and underweight with celiac disease so she doesn’t join the obesity epidemic?!  Definitely need a new doctor.  Is this pediatrician a gastroenterologist?  If not, can you see a pediatric gastroenterologist?  Are you in the USA?  In most states you can order some blood tests online without a doctor - you could get the whole celiac panel.  

I just don’t understand why doctors are so hesitant to diagnose celiac disease.  

[lyfan]

"He had no interest in...what could be causing the stomach aches. "

 There are a lot of medical practices these days that are set up as factories, processing patients. It is all to rare to find a doctor who takes the time to LISTEN and treat a patient with respect. Sometimes, you just need to say outright "Doctor, can you take care of this or should I go to someone else?" and sometimes it is simpler to just find a new doctor, hard as that may be.

 I had a family member to a specialty clinic at a generally respected local hospital last year. From what I had read, the treatment was not only inappropriate but could be detrimental. When I was not allowed in with them to see the doctor, and forced to wait an additional 90 minutes before they figured out I wasn't going away and was going to see that doctor, I finally was allowed to talk to them. I asked "Why are you using a product with ---- in it?" and the doctor actually tried telling me that the key ingredient in the product wasn't in it.

 Two days later we snagged an appointment at a regional top-name clinic for a second opinion. First words out of the doctor's mouth? "That's appropriate for a third world clinic in the jungle, but we have higher standards of care in the industrialized world."

 Yes, one "really good" doctor and clinic were insisting on using a product that literally could have quadrupled healing time, causing incidental damage along the way.

 Sometimes, you need to fire the doctor. If you're off base, it is THEIR JOB to explain the situation to you, and to put you at ease. If they can't do that? Stick to your gut feeling, fire the doctor.

 

[AussieMumInUSA]

The frustrating thing is that the blood levels don’t actually give you an accurate picture of the internal damage that is present. My daughter’s TTG levels were considered mildly positive, yet her GI could see celiac related damage with her naked eye during the endoscopy. I would fight for thorough follow up, whether it is with this doctor or another one 

[Sienna2013]

TBH I would consider reporting this doc to the medical board (*after* you've found a new one and gotten your daughter properly cared for).