Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Help with blood results

angeles99

Recommended Posts

angeles99 Rookie
angeles99
Posted

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.

 

 

 

 

Scan-151011-0001.webp

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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 Grand Master
cyclinglady
Posted

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

angeles99 Rookie
angeles99
Posted
  • Author

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 Veteran
squirmingitch
Posted

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

angeles99 Rookie
angeles99
Posted
  • Author

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

Thanks... I guess :P

angeles99 Rookie
angeles99
Posted
  • Author

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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 Rising Star
bartfull
Posted

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 Rookie
angeles99
Posted
  • Author

Will do. Thanks all.

nvsmom Community Regular
nvsmom
Posted

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 Rookie
angeles99
Posted
  • Author

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 Community Regular
nvsmom
Posted

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 Rookie
angeles99
Posted
  • Author

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 Community Regular
nvsmom
Posted

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 Explorer
manasota
Posted

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 Community Regular
nvsmom
Posted

:) Well said.

angeles99 Rookie
angeles99
Posted
  • Author

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 Veteran
squirmingitch
Posted

Welcome to the club. 

nvsmom Community Regular
nvsmom
Posted

Ditto.  :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...