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Can Someone Explaim My Test Results?


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18 replies to this topic

#16 cookiestastegood

 
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Posted 17 July 2014 - 08:51 PM

Why would he suggest I continue a gluten free diet? Probably just to see how I feel. I intimated that I thought maybe it helped improve my exercise tolerance. Also, there remains no verifiable cause for my tendency towards iron deficiency.

 

Was I eating gluten free prior to the test? On most days, yes. For training purposes, I don't consume large amounts of bread, cereal, baked goods or fried foods.

 

Did I have thyroid testing? Yes, those results were normal. A battery of blood tests were run when it was discovered I was anemic. That first appointment after those initial tests was very traumatic. The concern in my doctor's demeanor was apparent from the moment he stepped into the room. He laid out the possibilities and they were almost universally bad. It was not like a normal doctor's appointment. He was preparing me for the possibility of very bad news. When I saw he was referring me to oncology and then mentioned I was at the age they worry about lymphoma, I almost lost it. Once I got back to my car, I did lose it. I broke down in tears. It's a wonder I was able to drive myself home. I was a complete mess.


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#17 SMRI

 
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Posted 18 July 2014 - 04:13 AM

Again, the immune issues can mimic the symptoms for Celiac and can explain most of your other symptoms as well.  It's a couple more vials of blood, nothing too horrible.  I would suggest you see an infectious disease doctor or a doctor that specializes in immune deficiency and just see.  My daughter has this, and is probably Celiac as well--still getting tests done on her.  With a low IgA to start, I'm a little surprised your dr didn't do the full panel to start with.  It gets old getting poked and prodded but, it is something you want to know because there are treatments to help if your numbers are low enough.


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#18 IrishHeart

 
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Posted 18 July 2014 - 05:08 AM

Why would he suggest I continue a gluten free diet? Probably just to see how I feel. I intimated that I thought maybe it helped improve my exercise tolerance. Also, there remains no verifiable cause for my tendency towards iron deficiency.

 

Was I eating gluten free prior to the test? On most days, yes. For training purposes, I don't consume large amounts of bread, cereal, baked goods or fried foods.

 

Did I have thyroid testing? Yes, those results were normal. A battery of blood tests were run when it was discovered I was anemic. That first appointment after those initial tests was very traumatic. The concern in my doctor's demeanor was apparent from the moment he stepped into the room. He laid out the possibilities and they were almost universally bad. It was not like a normal doctor's appointment. He was preparing me for the possibility of very bad news. When I saw he was referring me to oncology and then mentioned I was at the age they worry about lymphoma, I almost lost it. Once I got back to my car, I did lose it. I broke down in tears. It's a wonder I was able to drive myself home. I was a complete mess.

 

 

Honestly. the doctor should not have made you feel like it was "worst case scenario" without all the facts. You haven't even had a consult with the hematologist yet! I will tell you this: my Dad had severe iron deficiency anemia and tanked hematocrits requiring blood transfusions. The hematologist/oncologist was the one who made him feel better. Unfortunately, he had to do this for many years and they never could figure out why,

despite testing of all kinds. Except the one that was glaringly missing when i went back to look at everything that was done. They never biopsied him

for celiac. I was not diagnosed back then yet, so of course, I had no clue what was going on with him--or me--for that matter.

 

 

Normally, men do not have blood loss or anemia, but sometimes it occurs. There are people of Meditteranean descent for example, who seem to have a higher ratio of anemia. 

 

But speculating that it may be lymphoma makes no sense to me when that would mean a low white blood cell count.

 

Iron deficiency anemia is determined by the hemoglobin in red blood cells.


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#19 nvsmom

 
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Posted 18 July 2014 - 09:18 AM

Your doctor seems a bit misinformed and is somewhat of an alarmist. :blink:

 

About 5% of all celiacs are deficient in Immunoglobulin A (IgA) which is higher than the regular population.  If you do not make normal IgA, your body will not be able to make enough (celiac) auto-antibodies (tTG IgA, AGA IgA, DGP IgA, EMA IgA) to register in the blood tests. I have only seen one celiac who was deficient in IgA who (barely) had a positive IgA based celiac test (it was the tTG IgA I believe) - normally those who have low IgA will be negative even if they are a celiac.

 

To find out if you are aceliac you need these tests (as others have said):

tTG IgG

EMA IgG

DGP IgG

AGA IgG (older and less reliable test)

 

These tests need you to be eating 1-2 slices of bread per day (or equivalent) in the 8-12 weeks prior to testing.  Almost all celiacs who eat gluten-free will have negative celiac tests once their immune system calms down.

 

The endoscopic biopsy requires only 2-4 weeks of gluten prior to testing.

 

If you are not going to test, try the gluten-free diet, 100%. No soy sauce, beer, teriyaki, or pre packaged soups.  Give it about 6 months before you judge the results. Maybe you'll feel better.

 

Good luck.


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