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newjoy82

What do my test results mean??

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A while back I had a celiac panel done and one came back slightly elevated and I had the gene test done and it was negative. Fast forward and I just had some other blood work done and celiac testing was included. I attached a picture, but total IgA was 65 considered high risk. The four other sub test were normal. Can someone please help me understand what it means? I read about that referring to immune system issues, but I don't understand what it has to do with Celiac if the other ones are negative. In addition to this CRP is elevated. Hormones are out of whack. Iron and transferrin saturation are high. Cortisol is high. Carbon Monoxide is low. Don't know if any of that has anything to do with the IgA or not. Any comments or ideas would be greatly appreciated. Thank you

Test.JPG

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The IGA deficiency test is used in celiac disease testing as a control test.  It validates all the iga celiac tests (like Ttg iga).  The rest of your panel is negative (IGG) (assuming you were consuming gluten daily) and your gene test was negative making celiac disease unlikely, but I am not a doctor that's for sure.  

Now, having an IGa deficiency also can be a flag for celiac disease as many of them are, but many also have Type 1 diabetes and Hashimoto's Thyroiditis which are also flags.  This just alerts the doctor that pursuing a celiac disease diagnosis might be prudent. It seems like you doctor did just that.  Many people have no issues with being IGA deficient.  JMG provided a nice link explaining it.  

Is your doctor concerned about your other lab test results (not related to celiac disease)? 

 

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Hi, thank you for the responses. The blood work was done by my neurologist/headache specialist. I go back for a follow up on the 30th. His notes said to follow up with PCP about all of the items I mentioned in the original post. Most of the things seem sort of non-specific... so I don't really know how they related to each other or my overall health/current conditions. I have hemicrania continua and fibromyalgia diagnosed. So, symptoms are headache (not really a accurate description) FMS stuff...muscle/joint pain, stomach stuff, fatigue, sleep issues, etc.

The Ttg IgG came back slightly elevated in the past but wasn't this time and I was negative on the gene, so I assume I don't have a gluten sensitivity, but I wanted to be sure that I don't need to be avoiding it.

So, I understand what the low IgA means...I tend to get sinus infections frequently. My allergy dr mentioned low IgA and gave me pneumonia shot and allergy shots which has helped a little. I don't totally understand why it's part of the celiac panel. Is it just because if it's low the others could test low giving a false negative? If that's the case, how do you figure out if you need to avoid gluten?

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17 minutes ago, newjoy82 said:

Hi, thank you for the responses. The blood work was done by my neurologist/headache specialist. I go back for a follow up on the 30th. His notes said to follow up with PCP about all of the items I mentioned in the original post. Most of the things seem sort of non-specific... so I don't really know how they related to each other or my overall health/current conditions. I have hemicrania continua and fibromyalgia diagnosed. So, symptoms are headache (not really a accurate description) FMS stuff...muscle/joint pain, stomach stuff, fatigue, sleep issues, etc.

The Ttg IgG came back slightly elevated in the past but wasn't this time and I was negative on the gene, so I assume I don't have a gluten sensitivity, but I wanted to be sure that I don't need to be avoiding it.

So, I understand what the low IgA means...I tend to get sinus infections frequently. My allergy dr mentioned low IgA and gave me pneumonia shot and allergy shots which has helped a little. I don't totally understand why it's part of the celiac panel. Is it just because if it's low the others could test low giving a false negative? If that's the case, how do you figure out if you need to avoid gluten?

Again, in the case of celiac disease testing the iga deficiency test is just used as a control test.  It tells you if the other celiac disease iga tests are actually working.  If you are low on the iga deficiency test when being tested for celiac disease, then the doctor needs to Run the entire panel and look only at the IGG test results.  Your doctor did this.  

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43 minutes ago, newjoy82 said:

 

The Ttg IgG came back slightly elevated in the past but wasn't this time and I was negative on the gene, so I assume I don't have a gluten sensitivity, but I wanted to be sure that I don't need to be avoiding it.

 

I would strongly urge you not to discount gluten as a potential cause on the basis of negative celiac tests. I tested negative for celiac blood markers and on a subsequent endoscopy, but believe you me I react extremely strongly to any gluten. Negative tests may mean you have non celiac gluten intolerance, basically a diagnosis for those who react favourably to the gluten free diet, but don't test positive for celiac:

Quote

individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. 

I suggest discussing with your PCP and if they exclude celiac and don't plan any further tests, go ahead and give a gluten free diet a try. Keep a food diary and see if it has any impact. It costs nothing to try it and for me after just 3 days I knew a massive change was taking place.   

Best of luck :) 

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5 minutes ago, Jmg said:

I would strongly urge you not to discount gluten as a potential cause on the basis of negative celiac tests. I tested negative for celiac blood markers and on a subsequent endoscopy, but believe you me I react extremely strongly to any gluten. Negative tests may mean you have non celiac gluten intolerance, basically a diagnosis for those who react favourably to the gluten free diet, but don't test positive for celiac:

I suggest discussing with your PCP and if they exclude celiac and don't plan any further tests, go ahead and give a gluten free diet a try. Keep a food diary and see if it has any impact. It costs nothing to try it and for me after just 3 days I knew a massive change was taking place.   

Best of luck :) 

I agree!  celiac disease can be ruled out, but that doesn't mean that you do not have a gluten issue.  Science still does not know much about gluten sensitivities.  They barely understand celiac disease!  Someday there might be a test, but for now,  use a food journal.  

My hubby went gluten-free 12 years before my diagnosis per the poor advice of his GP and my allergist.  I say this because it would have been nice to rule out celiac disease for sure.   The diet worked.  Gluten makes him sick. 

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Thanks so much for all your responses. Some of this stuff is a bit confusing so I appreciate the feedback. I'll be talking to the dr to see what I need to do. I tried gluten free for a few weeks a while back, but didn't notice anything major. What should I notice and how long should it be before I notice a change? I had someone tell me it takes 6 months. Other people have mentioned a few days.

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1 hour ago, newjoy82 said:

 I tried gluten free for a few weeks a while back, but didn't notice anything major.

Was this before or after he blood test? If you were gluten free that could have affected the result?

Quote

What should I notice and how long should it be before I notice a change? I had someone tell me it takes 6 months. Other people have mentioned a few days

I can only say in my case within 3 days I could read in my food diary how I was improving. At the time I felt absolutely dreadful and the immediate effect was a lifting brain fog and depression. The full extent of recovery however took a lot longer.  Did you keep a food diary when you went gluten-free? 

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The gluten free was after the first blood test probably a year and a half ago to see if there would be any improvement. I just cut out all gluten and focused of fruits/veggies/meats...anything else I ate was specifically gluten free.

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