Positive Blood Work But Negative Biopsy

[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 morning but described it as "there but not as bad as before". 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.

1. Does this seem like celiac disease?

2. Does anyone know of a GREAT Pediatric GI in the Central Valley or Bay Area?

3. Should I ask for certain tests?

4. How long does it take for the cramps to go away?

5. Are there certain foods besides gluten and dairy that can irritate my son's stomach?

[Cara in Boston]

I'm no doctor, but it looks like he DID have a positive blood test (gliadin antibody) when first tested. If he had a positive TTG also, it is likely he has celiac disease - or at the very least is gluten intolerant.

My son had negative blood tests and positive biopsy. (He had/has almost no symptoms other than behavior and mood changes)

I had all the symptoms (GI problems, headaches, joint aches, insomnia, brain fog, hair loss, etc. etc.) and a positive blood test, but negative biopsy.

My doctor "officially" diagnosed me with "gluten intolerance" - which seems weird since my son has celiac and I had a positive blood test. Doesn't matter anyway as the treatment is the same.

My son's doctor (Celiac Specialist) said that was just silly and obviously I have celiac disease. She said maybe they didn't biopsy the right spot or maybe I haven't had it long enough to show any damage.

In any case, we are both feeling better and were quickly symptom free within a few weeks of being gluten free.

It sounds like your son should not be eating gluten. Future tests (while on the gluten free diet) will all be negative, so be aware of this.

Even without a "solid" diagnosis, you need to be sure you are following the diet 100%.

The rest of the family should get the full celiac panel - even if you don't have symptoms.

Cara

[Takala]

1. Does this seem like celiac disease?

____

Yeah, that and another misdiagnosis of just heartburn-in-progress.

2. Does anyone know of a GREAT Pediatric GI in the Central Valley or Bay Area?

_____

Check the "doctors" forum and put a query there. But all you really need is a great PCP who will look at your son as a human, pay attention to the diet change results, and not as a set of lab numbers.

3. Should I ask for certain tests?

______

Diet response is going to have to be your guide.

Only if you think that having the Official Celiac Diagnosis Seal of Approval

[sharilee]

I tested positive on blood work for celiac disease in July 2011 and negative for the biopsy in August 2011. I had a second biopsy in February and it was positive then for celiac. So it still may be celiac disease. Soy could also be a problem, I can't have soy as it causes problems as well.

[nmc]

I'm no doctor, but it looks like he DID have a positive blood test (gliadin antibody) when first tested. If he had a positive TTG also, it is likely he has celiac disease - or at the very least is gluten intolerant.

My son had negative blood tests and positive biopsy. (He had/has almost no symptoms other than behavior and mood changes)

I had all the symptoms (GI problems, headaches, joint aches, insomnia, brain fog, hair loss, etc. etc.) and a positive blood test, but negative biopsy.

My doctor "officially" diagnosed me with "gluten intolerance" - which seems weird since my son has celiac and I had a positive blood test. Doesn't matter anyway as the treatment is the same.

My son's doctor (Celiac Specialist) said that was just silly and obviously I have celiac disease. She said maybe they didn't biopsy the right spot or maybe I haven't had it long enough to show any damage.

In any case, we are both feeling better and were quickly symptom free within a few weeks of being gluten free.

It sounds like your son should not be eating gluten. Future tests (while on the gluten free diet) will all be negative, so be aware of this.

Even without a "solid" diagnosis, you need to be sure you are following the diet 100%.

The rest of the family should get the full celiac panel - even if you don't have symptoms.

Cara

My son had a negative ttg but positive gliadin. Did you or your son have any gluten withdrawal symptoms?

Nicole

[nmc]

1. Does this seem like celiac disease?

____

Yeah, that and another misdiagnosis of just heartburn-in-progress.

2. Does anyone know of a GREAT Pediatric GI in the Central Valley or Bay Area?

_____

Check the "doctors" forum and put a query there. But all you really need is a great PCP who will look at your son as a human, pay attention to the diet change results, and not as a set of lab numbers.

3. Should I ask for certain tests?

______

Diet response is going to have to be your guide.

Only if you think that having the Official Celiac Diagnosis Seal of Approval

[nmc]

I tested positive on blood work for celiac disease in July 2011 and negative for the biopsy in August 2011. I had a second biopsy in February and it was positive then for celiac. So it still may be celiac disease. Soy could also be a problem, I can't have soy as it causes problems as well.

What prompted the GI doc to give you a second biopsy?

[frieze]

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 morning but described it as "there but not as bad as before". 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.

1. Does this seem like celiac disease?

2. Does anyone know of a GREAT Pediatric GI in the Central Valley or Bay Area?

3. Should I ask for certain tests?

4. How long does it take for the cramps to go away?

5. Are there certain foods besides gluten and dairy that can irritate my son's stomach?

get the written report of the biopsy, so that you can read it yourself.