Help with blood results

[angeles99]

Hi all,

I'm new to this forum. 

Since a surgery in April 2013 I have had ongoing health issues which have led from one thing to another. I've had no specific diagnosis for anything going on which has left me feeling very helpless. I wont go into specifics in this post but I've basically ended up with extreme breathing difficulties and a neuropathic pain condition. There are countless other things going on but these are the two which have the biggest impact on my life. Should mention I'm 21 years old.

Issues with my gut started getting worse around December 2013 when everything started to go downhill. I ended up on heavy pain meds which I assumed were the cause of my gut problems. I've now been off all meds since around July 2015 and my problems persist. Between this and my complete inability to put on / maintain any weight / muscle, I thought it might be worth looking into celiac so I had some bloods done.  

 

Would be grateful if anyone could help me interpret the results...

I am having a biopsy in a couple of weeks time.

 

Thank you.

 

 

 

 

[cyclinglady]

Welcome to the forum!  I am sorry to tell you that with two positives (the middle test is to see if you have an igA deficiency which would invalidate the TTG), you most likely have celiac disease.     Do not stop eating gluten until you have had the endoscopy.  Ask that they take six biopsy samples as the small intestine is vast and the doctor could miss damage spots.  

I encourage you to check out the University of Chicago's celiac website to learn more.  After all testing is complete, you can start the gluten free diet.   The good news is that you will soon feel better!  

Questions?  We are here to help.  We are not doctors, but we have issues with gluten!  We live it everyday!  

Celiac Disease is genetic, so any first-degree relatives (parents or siblings) should be tested even if they are symptom free.  

[cyclinglady]

Oh, please get check for anemia and vitamin and mineral deficiencies.  

[angeles99]

Welcome to the forum!  I am sorry to tell you that with two positives (the middle test is to see if you have an igA deficiency which would invalidate the TTG), you most likely have celiac disease.     Do not stop eating gluten until you have had the endoscopy.  Ask that they take six biopsy samples as the small intestine is vast and the doctor could miss damage spots.  

I encourage you to check out the University of Chicago's celiac website to learn more.  After all testing is complete, you can start the gluten free diet.   The good news is that you will soon feel better!  

Questions?  We are here to help.  We are not doctors, but we have issues with gluten!  We live it everyday!  

Celiac Disease is genetic, so any first-degree relatives (parents or siblings) should be tested even if they are symptom free.  

Hi cyclinglady, thanks for your response. I am looking forward to starting the gluten free diet asap. Hopefully it will mark the beginning of recovery for me. I've had no diagnosis over the past 2 years so I'm really hoping I can see an improvement in my condition. Even the smallest change will be a huge positive.

Thanks again.

[squirmingitch]

Welcome to the club you never wanted to be a part of. 

[angeles99]

Welcome to the club you never wanted to be a part of. 

Thanks... I guess 

[angeles99]

Are my results pretty normal, high or low for someone with celiac? thanks

[cyclinglady]

I don't know if antibodies levels correlate with intestinal damage or not.  In my case,  I was barely positive yet I had moderate to severe damage.  Others here have had high antibodies but not severe damage.  Everyone presents  differently.

I can not stress this enough -- KEEP EATING GLUTEN until all testing is complete. 

 

[bartfull]

And then after all testing is done go to the coping section here and read the Newbie 101 thread that is pinned to the top. It'll teach you a lot about celiac and especially about managing the diet.

[angeles99]

Will do. Thanks all.

[nvsmom]

Are my results pretty normal, high or low for someone with celiac? thanks

The endomysial antibodies (EMA IgA) tend to show more advanced damage.  It is basically positive in response to the tTG IgA attacking your intestine, so the EMA IgA comes along to wipe out the top layer of the intestines with the misguided hopes of stopping whatever is wrong.  A positive EMA usually means the damage would be found during a biopsy.  Just make sure they take at LEAST 6 samples if a biopsy is done.

Ypor tTG IgA and EMA IgA results were in line with mine (high enough that they stopped counting) and I had the disease for at least 35 years before I was diagnosed. I skipped the biopsy because a positive EMA IgA and tTG IgA is basically a sure thing in terms of diagnosis.  I figured I could get the biopsy later if I did not improve on the gluten-free diet, but I did improve.  

As the others said, don't stop eating gluten until you are satisfied that testing is complete.  Best wishes.

[angeles99]

The endomysial antibodies (EMA IgA) tend to show more advanced damage.  It is basically positive in response to the tTG IgA attacking your intestine, so the EMA IgA comes along to wipe out the top layer of the intestines with the misguided hopes of stopping whatever is wrong.  A positive EMA usually means the damage would be found during a biopsy.  Just make sure they take at LEAST 6 samples if a biopsy is done.

Ypor tTG IgA and EMA IgA results were in line with mine (high enough that they stopped counting) and I had the disease for at least 35 years before I was diagnosed. I skipped the biopsy because a positive EMA IgA and tTG IgA is basically a sure thing in terms of diagnosis.  I figured I could get the biopsy later if I did not improve on the gluten-free diet, but I did improve.  

As the others said, don't stop eating gluten until you are satisfied that testing is complete.  Best wishes.

Thanks so much nvsmom - really helpful answer  How long were you gluten free before you started noticing an improvement?

[nvsmom]

Thanks so much nvsmom - really helpful answer  How long were you gluten free before you started noticing an improvement?

Within a few days my bloating went down, and stomach aches decreased a bit. Within 3 days I hit a withdrawal, or withdrawal like symptoms, and felt worse for a week or so (headache, fatigue and an impressive level of crankiness).  Within a couple of months my migraines were mostly gone and my plantar faciitis disappeared, and my hair loss improved - bunches of 1"long hairs growing up out of the top of my head... attractive.  LOL  Around that time I started losing weight and my fatigue improved a bit.  

Arthritis was the worst for me. It took a LONG time to get better.  It was actually worse at about 2-6 months gluten-free than it was before. I had a terrible flare-up that made it hard to hold a toothbrush never mind carry in a grocery bag.  Eventually my flare-ups got shorter, milder, and less frequent. I would say it took about 2 years for my arthritis to get mostly better. I'm now at the point where when I get a flare-up, I am only flu-ish for a day or too, rarely get mouth sores ad hair loss with it, and the pain is mild and only lasts a few days and then it is gone for another 6 months.  Contrast that with 4 month flare-ups with only a month or two in between. SO much better.  

I think my recovery took about 2-2.5 years. I know my EMA was normal within 6 months but my ttG IgA was abnormal for at least a year even though I was gluten-free. It's impossible to get completely better if the body is still attacking itself.  Patience is definitely needed when dealing with celiac disease.    It really is worth it when you get there though.  

[angeles99]

Within a few days my bloating went down, and stomach aches decreased a bit. Within 3 days I hit a withdrawal, or withdrawal like symptoms, and felt worse for a week or so (headache, fatigue and an impressive level of crankiness).  Within a couple of months my migraines were mostly gone and my plantar faciitis disappeared, and my hair loss improved - bunches of 1"long hairs growing up out of the top of my head... attractive.  LOL  Around that time I started losing weight and my fatigue improved a bit.  

Arthritis was the worst for me. It took a LONG time to get better.  It was actually worse at about 2-6 months gluten-free than it was before. I had a terrible flare-up that made it hard to hold a toothbrush never mind carry in a grocery bag.  Eventually my flare-ups got shorter, milder, and less frequent. I would say it took about 2 years for my arthritis to get mostly better. I'm now at the point where when I get a flare-up, I am only flu-ish for a day or too, rarely get mouth sores ad hair loss with it, and the pain is mild and only lasts a few days and then it is gone for another 6 months.  Contrast that with 4 month flare-ups with only a month or two in between. SO much better.  

I think my recovery took about 2-2.5 years. I know my EMA was normal within 6 months but my ttG IgA was abnormal for at least a year even though I was gluten-free. It's impossible to get completely better if the body is still attacking itself.  Patience is definitely needed when dealing with celiac disease.    It really is worth it when you get there though.  

Thanks nvsmom. Great to hear that you've had such an improvement. There is hope...

[nvsmom]

Thanks nvsmom. Great to hear that you've had such an improvement. There is hope...

There is hope. Up to about 3 or so years, I would definitely say that there is always hope for improvements.  After that, chances are that the problem is caused by something else, or if it was celiac caused it has become a permanent issue which may not improve much more.

Hang in there.

[manasota]

For people reading this who are older at diagnosis (I was 60yo), even at 5 1/2 years gluten free...I still see improvement along many lines.  I believe where there is life, there is hope for improvement.  The improvement is slow and gradual.  But it's still improvement.  I plan to keep trying everything I can think of and to eventually get well.  There is no documented evidence that I know of to prove me wrong.  Besides, nobody knows me better than me.  ;-)

I'll either get well or die trying. ;-)

[nvsmom]

Well said.

[angeles99]

Very true... Wise words. Just thought I'd give a quick update - had my endoscopy a couple of days ago where they took the biopsies. Will get my results in a week, however the doc who took the biopsies said I definitely have celiac. Started gluten free diet yesterday. Looking forward to regaining a part of my life  Thanks all.

[squirmingitch]

Welcome to the club. 

[nvsmom]

Ditto.