Confused By Results-Help Is Greatly Appreciated

[jjenjj]

Hello. I will TRY to be brief. My 11 year old daughter had the flu in May of 2009. She had a bad cough for a few weeks and then just became a chronic throat clearing. She would describe it as a tickle in her neck or something being in there. I took her to the pediatrician and they referred us the the ENT. She did a trial of Prevacid for suspected reflux but it made the cough worse. The ENT cleared her from his care and sent her to the allergist. The allergist, based on the symptoms, referred us to the Gastroenterologist for suspected Eosiniphilic Esophagitis. She had an endoscopy in November that showed no problems in her esophagus but several inflammation patches in her duodenum. The gastro called me with the biopsy results (from the report) "The duodenal bulb shows marked villous blunting and moderate active inflammation. Infectious agents are not identified. celiac disease is considered in the differential; however, the presence of large numbers of neutrophils would be uncommon for celiac disease."

The doctor said she was pretty sure she has celiac disease but wanted to run the bloodwork to confirm. The results from Prometheus are as follows:

AGA IgG.....26.3 reference <10

AGA IgA.....<1.2 reference <5

TTG IgA.....2.3 reference <4

EMA IgA.....NEG NEG

Total serum IgA 100 normal is 41-395

The Gastro doc then sent us back to allergy saying it might be a food allergy. The allergist doubted it but agreed to for "completeness of the file." She has skin testing and came back positive to Chicken, Beef, Milk, and Corn. It should be noted that she had skin testing at 5 years old and was negative for all of those things so I know this is not something she has always had.

Constipation is her only gastro complaint. She has been this way since she was an exclusively breastfed infant.

Any thoughts on her situation would be greatly appreciated. We are waiting for the results of DQ2/DQ8 testing. I think we will have the results next week.

Someone I know with celiac mentioned leaky gut syndrome causing food allergies so any thoughts on that would be welcomed as well. I am just tired of the run around from doctors. I want her to get better.

Thanks.

[Mtndog]

  On 1/21/2010 at 10:30 PM, jjenjj said:

She had an endoscopy in November that showed no problems in her esophagus but several inflammation patches in her duodenum.

The gastro called me with the biopsy results (from the report) "The duodenal bulb shows marked villous blunting and moderate active inflammation.

This was what spoke most loudly to me- if she has blunted villi I would not hesitate to have her go gluten-free. Many people don't even have a positive biopsy. As far as I know, the biopsy is pretty definitive (they call it the "gold standard") and the bloodwork less so.

IMHO, if you want a definitive diagnosis, you may want a 2nd opinion since I'm not sure this GI knows a lot about celiac. Otherwise I would say her biopsy is more than enough evidence to support going gluten-free.

[Lisa]

Open Original Shared Link (this link will not open for non members, but I have included the section I want to reference.)

Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data.

[ravenwoodglass]

Between the villi blunting and 'AGA IgG.....26.3 reference <10' I would think that would be enough for a diagnosis. I would consult with a doctor who actually knows something about celiac for a second opinion. Or you could just start the diet.

[Lisa]

  On 1/21/2010 at 10:30 PM, jjenjj said:

Hello. I will TRY to be brief. My 11 year old daughter had the flu in May of 2009. She had a bad cough for a few weeks and then just became a chronic throat clearing. She would describe it as a tickle in her neck or something being in there. I took her to the pediatrician and they referred us the the ENT. She did a trial of Prevacid for suspected reflux but it made the cough worse. The ENT cleared her from his care and sent her to the allergist. The allergist, based on the symptoms, referred us to the Gastroenterologist for suspected Eosiniphilic Esophagitis. She had an endoscopy in November that showed no problems in her esophagus but several inflammation patches in her duodenum. The gastro called me with the biopsy results (from the report) "The duodenal bulb shows marked villous blunting and moderate active inflammation. Infectious agents are not identified. celiac disease is considered in the differential; however, the presence of large numbers of neutrophils would be uncommon for celiac disease."

The doctor said she was pretty sure she has celiac disease but wanted to run the bloodwork to confirm. The results from Prometheus are as follows:

AGA IgG.....26.3 reference <10

AGA IgA.....<1.2 reference <5

TTG IgA.....2.3 reference <4

EMA IgA.....NEG NEG

Total serum IgA 100 normal is 41-395

The Gastro doc then sent us back to allergy saying it might be a food allergy. The allergist doubted it but agreed to for "completeness of the file." She has skin testing and came back positive to Chicken, Beef, Milk, and Corn. It should be noted that she had skin testing at 5 years old and was negative for all of those things so I know this is not something she has always had.

Constipation is her only gastro complaint. She has been this way since she was an exclusively breastfed infant.

Any thoughts on her situation would be greatly appreciated. We are waiting for the results of DQ2/DQ8 testing. I think we will have the results next week.

Someone I know with celiac mentioned leaky gut syndrome causing food allergies so any thoughts on that would be welcomed as well. I am just tired of the run around from doctors. I want her to get better.

Thanks.

I would continue to seek qualified medical opinions.

[jjenjj]

  On 1/22/2010 at 2:39 AM, Lisa said:

I would continue to seek qualified medical opinions.

I just wanted to say thank-you for the responses and let you know that the doctor called with her genetic results today. She has DQ2/DQ2. She is referring us the the celiac disease clinic so they can follow her and put us in touch with a dietician. Thanks for your help. I will move my new questions to the post diagnosis board

[ravenwoodglass]

  On 1/23/2010 at 2:50 AM, jjenjj said:

I just wanted to say thank-you for the responses and let you know that the doctor called with her genetic results today. She has DQ2/DQ2. She is referring us the the celiac disease clinic so they can follow her and put us in touch with a dietician. Thanks for your help. I will move my new questions to the post diagnosis board

It's good that now you know. With her having a double dose of the same gene it is important that family members on both sides be tested whether they think they have symptoms or not. They may not do it but they should know that it is something that should be done. I hope things improve quickly.

[sandsurfgirl]

It's not a diagnosis that you want to have for your child, but thank God you have answers now and she doesn't have to endure a lifetime of suffering like many of us have had.

I will be going through this with my 5 year old son soon. I'm pretty sure he has it, or at least he's got intolerance that will end up as celiac eventually. I just got diagnosed recently so I'm processing my own and trying to heal some before I start down this path.

I wish so badly I could have been diagnosed as a kid. I have had so many health problems my entire life and got diagnosed at 40.

[nora-n]

This is intersting, it shows the importance of running all the tests.

Here where I live they only do the tissue transglutaminase IgA test usually donot do the antigliadin test. If total IgA is very low they do the ttg IgG.

About the esophagus problems: I have seenseveral postings about children presenting with celiac with ee or esophagus problems.

I had pains in my esophagus too but they did not diagnose ee.