Skeptical About Dad's Tests Results

[foodiegurl]

Since I was diagnosed, I have been trying to urge my family members to get tested. One sister has it, the other tested negative by blood. Mom neg by blood. And then my dad (who I suspected was the culprit) finally got tested. He has had a long history of reflux and digestive issues, and had his gallbladder removed in the late 90s. Also has a history of low iron.

So, my dad finally goes to get the blood work done. Positive. He does it is a second time to confirm. Positive. He gets an endoscopy. Negative.

Since the beginning of the summer my dad has been basically carb-free, lost weight and feels great, but he made sure he ate gluten for like a month before the test, daily. He told the dr he hasn't had reflux, etc... since going carb-free or carb-light, I should say.

Anyway, I was there when he had the test done, and the dr told me how he did test positive by blood, but only one of the 4 things they tested were positive the other Ttg was negative, I think that is what he said. I thought he seemed arrogant and kind of rubbed me the wrong way..especially when he told me dad just to take Prilosec...what, forever???? What kind of cure is that? He also said his villi seemed a bit "fat" which I have not heard of before.

So, today my dad goes in for his follow-up and is told he does not have celiac, yet he does have Barrett's esophagus from years of reflux. And his solution....take iron, take prilosec.

Of course, my dad is happy he "does not" have celiac. But I am very skeptical. And I hate that the dr just said to take a medicine to cover symptoms. I mean reflux come from something, so does low iron, and with the fluctuation of the testing, I just don't know what to think.

Thanks for reading. Any advice would be great!

[pain*in*my*gut]

  On 8/29/2011 at 4:54 PM, foodiegurl said:

Since I was diagnosed, I have been trying to urge my family members to get tested. One sister has it, the other tested negative by blood. Mom neg by blood. And then my dad (who I suspected was the culprit) finally got tested. He has had a long history of reflux and digestive issues, and had his gallbladder removed in the late 90s. Also has a history of low iron.

So, my dad finally goes to get the blood work done. Positive. He does it is a second time to confirm. Positive. He gets an endoscopy. Negative.

Since the beginning of the summer my dad has been basically carb-free, lost weight and feels great, but he made sure he ate gluten for like a month before the test, daily. He told the dr he hasn't had reflux, etc... since going carb-free or carb-light, I should say.

Anyway, I was there when he had the test done, and the dr told me how he did test positive by blood, but only one of the 4 things they tested were positive the other Ttg was negative, I think that is what he said. I thought he seemed arrogant and kind of rubbed me the wrong way..especially when he told me dad just to take Prilosec...what, forever???? What kind of cure is that? He also said his villi seemed a bit "fat" which I have not heard of before.

So, today my dad goes in for his follow-up and is told he does not have celiac, yet he does have Barrett's esophagus from years of reflux. And his solution....take iron, take prilosec.

Of course, my dad is happy he "does not" have celiac. But I am very skeptical. And I hate that the dr just said to take a medicine to cover symptoms. I mean reflux come from something, so does low iron, and with the fluctuation of the testing, I just don't know what to think.

Thanks for reading. Any advice would be great!

Wow....I would be very skeptical of this dx, too! Your dad has a positive family history, positive blood work, symptoms (the low iron in a man is a BIG one), abnormal looking villi (huh? fat villi? Could they have been blunted and the inexperienced pathologist says they are "fat"...WTH??) Also, one month of eating gluten before a biopsy may not have been enough to result in a positive biopsy. Most recommend 2-4 months of a gluten challenge for optimum results. So the biopsy could have been a false negative.

This is where the lack of knowledge amongst the medical community about gluten intolerance with or without Celiac disease does such a disservice to patients like your dad.

So is your dad going to resume eating gluten now since he "doesn't have Celiac" as proclaimed by The Doctor? There is probably not much you can do at this point. Just remind him if he does eat gluten again and gets symptomatic that it is the gluten making him sick. Maybe he will put two and two together and make the decision himself that he needs to completely eliminate it for good.

[JoshB]

Depends on what was "positive" some of the blood tests are very sensitive, but not specific to celiac disease. The biopsy is very specific but not very sensitive.

[foodiegurl]

  On 8/29/2011 at 6:09 PM, JoshB said:

Depends on what was "positive" some of the blood tests are very sensitive, but not specific to celiac disease. The biopsy is very specific but not very sensitive.

I did ask him to get copies of the bloodwork to keep for his reference. hopefully he does this.

[pricklypear1971]

Genetic testing. That will tell your Dad if he carries the genes...thus indicating gluten can be the culprit.

Listen, either people want to feel better or they don't. Tests for celiac come back negative all the time, yet the patient improves off gluten.

I'm hitting the same wall with my parents so I know where you're at.