I Need A Pediatric Gi Specializing In Celiac For A Modesto Teen.

[nmc]

This is our story...

My 14 year old son has always had a sensitive stomach and taken Lactaid because I thought he was lactose intolerant. I have been baking from scratch for the past year and have been noticing that my son has been experiencing more than usual stomach cramps, diarrhea, constipation, joint pain, nose bleeds, irritability and his teeth have turned yellow.

In December 2011, he told me that he could no longer have cereal for breakfast because it hurt his stomach(cramps and diarrhea).

In late January 2012, I noticed that my son was the sickest in the mornings (nausea, especially after eating) and was having daily nose bleeds. He stopped eating breakfast, eating at school, playing basketball and didn't want to go anywhere for fear of needing to use the bathroom. Our family doctor ordered $2000 in lab tests from Quest (food and animal allergies, stool samples, metabolic, cbc, urinalysis, celiac panel) and found everything to be normal except for the celiac panel (which he said was low)...

Gliadin Antibody IGA: 20 (negative <11, equivocal 11-17, postive >17)

IGA Serum: 174 (57-300 reference range)

tTG AB, IgA: <3 (negative <5, equivocal 5-8, positive >8)

In February 2012, the doctor then referred us to a pediatric GI at Children's Hospital in Madera for an endoscopy.

On March 12th, we consulted with the GI who said that my son tested negative on the tTG test which was the most important test for celiac and that he would be looking at my son's symptoms in the broad range, not just focusing on celiac disease. He also ordered a blood clotting test for the nose bleeds. The GI prescribed Zantac 150mg to be taken twice a day and told my son to stay away from caffeine, chocolate and spicy foods.

On March 15th my son had an endoscopy and colonoscopy. The GI said everything looked fine but that we would have to wait for the pathology results.

On March 17th my son had blisters at the back of his throat. The GI said to eat soft foods and take Tylenol. That night my son started having insomnia.

On March 19th, I stopped giving my son Zantac because of the insomnia. He was barely able to function during the day.

On March 23rd, I was at my wits end leaving message after message for the GI to return my call with my son's biopsy results and put my son on a gluten-free and dairy-free diet. At least the insomnia was gone but my son needed stomach relief!

On March 26th, the GI's nurse called to say that my son's biopsies were negative and that we have a follow-up appointment with the GI on April 30th. She also asked if we would be keeping this appointment. I told her yes. (Weird question)

On March 29th, my son ceased having nosebleeds and could play basketball! He still had stomach cramps, especially in the mornings but described it as "there but not as bad as before". The nausea was gone,too. I left a message with the GI's nurse regarding the Zantac and change in my son's diet. No one ever called me back.

Does anyone know of a GREAT Pediatric GI who specializes in celiac in the Central Valley or Bay Area?

Nicole

[mamaupupup]

Hi there,

We LOVE Dr. Michelle Pietzak at Children's Hospital in Los Angeles. She is a Celiac researcher and ped. GI. She does cover all GI issues. She is at 323-361-2181. I know it's a long drive from Modesto, but could be worth it.

If that doesn't work for you, try calling the City of Hope for a good lead. They are working on a Celiac study and are knowledgeable about many of the doctors in CA. 800-844-0049.

Good luck!

[mamaupupup]

P.S. One of our daughters has a false negative on ttg the first round of her Celiac bloodwork. We repeated it 3months later and it was twice as high...few false positives, but a good number of false negatives on that test, to my knowledge.

Hang in there!

[JustNana]

nmc

I am so sorry for your pain as a parent and your son's terrible time with a good diagnosis and treatment. I live very near Modesto and am lucky enough to have a GP in our tiny town who recognized my symptoms and tested me for Celiac. Unfortunately by the time that happened I have sustained some very serious deficiencies, Hashimoto's and the Dermatitis Hepetiformis. My tests were "90% conclusive" and Dr said no need for a biopsy. I will have an endoscopy in several months for followup of a long standing esophagus problem very likely caused by years of undisguised celiac. We will have my small intestine examined and biopsied at that time simply because they will be in the area.

I have only been gluten free fo about 7 weeks and have been accidentally glutened at least twice due to my own ignorance, carelessness and naivet

[mamaupupup]

nmc

I have learned more in a week of coming here than in the last nearly two months of info from my Dr and other web sites.

Agreed! Thank you all for all you contribute!

[mommida]

Get a hard copy of the test results. Keep the appointment just to make sure there is no major diagnoses at this appointment before you switch doctors.

The "blisters in the back of the throat" makes me think you should look up Eosinophilic Esophagitus. (At least take note of how many eosinophils were present during the scoping.) Do you have pictures from his scoping?