Pediatrician Suggests Gfd Based On Symptoms.

[rls031]

My 19 month old (G) daughter's pediatrician today suggested it's time to see a GI specialist and to eliminate gluten until she can be seen.

 

A long story short, G started daycare full time 6 weeks ago and has been having diarrhea problems since.  Brief timeline..

 

May 19th- Daycare begins, loose BM begin shortly after.

 

May 23- Daily loose stools and personality shifts begin.  We attribute this to daycare bug.

 

Loose bm's continue.

 

June 6th- Called at work, G has bad diarrhea and needs to be picked up.

 

June 10th- Pediatrician feels diarrhea is viral.

 

June 13th- ER trip.  SEVERE abdominal pain, severe bloating, screaming holding her stomach, low grade fever.  Shaking and clenching during explosive BM's.   Rushed by ambulance to children's center for suspected intusussception.  Ultra sound ruled that out.  Diagnosis, Mesenteric Adenitis (swollen lymph nodes on the intestines).  No stool culture, no blood work.

 

Chex and banana diet for the weekend, seems to be on the mend.

 

Normal diet resumes shortly after..loose BM's on and off for two weeks.  Two follow up apt's with PCM.  Virus thought to be cause.

 

June 28th- Explosive diarrhea.  Bloating.

June 30th- Vomiting, explosive diarrhea. Low grade fever. ER trip. Stool cultures taken.  Blood work drawn, CBC comes back fine.  Celiac panel not performed.  

Chex and banana all day on the 30th..today..semi-formed stools. "Preliminary" stool test come back negative.

 

My daughter has gained 5oz since January, and lost 3oz since May.  Doc suspects food allergy and put in a referral for a GI specialist, we hope to have an appointment within a couple of weeks.  She has suggested that since her growth has been SO slow since being fully weaned in January, that we can't risk her getting any sicker and to start a GFD until we get in to see if that helps (since that has seemed to turn things around over the last several weeks.)  She's right, we need to get her healthy STAT..but my concern is that I know they can't do accurate testing if she's off gluten.  My mind is set on getting her strong and healthy in the mean time, but I am hoping to connect with other parents who have had to go this route.  I would greatly appreciate any input or experiences.

 

Thanks in advance!

[nvsmom]

(HUGS) Oh dear.

 

Get her tested. Tomorrow.  As you said. celiac tests are only accurate while eating gluten, and she has been eating gluten! If you listen to the doctors and take her off gluten before testing, she will have to resume eating gluten (about one slice of bread per day) for 2-3 months before getting tested.  From what you have said, that would be way too much for her system to handle.  Get her tested tomorrow; she has mostly been on gluten over the last 3 months, so tests will be as accurate as they can get for such a young one.

 

Get as many tests run as possible so she will NOT have to do the gluten challenge later.  These are the tests to fight for:

• tTG IgA and tTG IgG - Most common celiac test is the tTG IgA. Get bothe done as some people test positive in the IgG based tests only for some reason (even if not IgA deficient).
• DGP IgA and DGP IgG - Newest test and the best test for detecting celiac disease in children. Get both done.
• EMA IgA - Similar to the tTG IgA but tends to be positive in more advanced cases.  Not quite as accurate in all children as in adults
• AGA IgA and AGA IgG - Older and less reliable tests (have a low sensitivity and miss some celiacs). I would ask to have these done just to cover your bases.
• total serum IgA - A control test. 5% of celiacs (which is more than the regular popukation) are deficient in IgA and that will cause false negative results on all IgA based tests (like DGP IgA and tTG IgA).

The GI may want to do an endoscopic biopsy which would require a 2-4 week gluten challenge.  Because of that, I would try to contact the GI office and get her appointment pushed up - they'll often do that for youngsters who are suffering. Hopefully you can get everything done as fast as possible so she can stay gluten-free or keep her gluten challenge short.

 

Genetic testing can also be done. That will just tell you if she is part of the 30% of the population who carry the DQ2 and DQ8 genes which make her more likely to develop celiac disease (<1% of people have celiac disease).  She does not have to be eating gluten for that to be done.

 

Good luck, Mom. I hope she is well soon.