Understanding test results

[Golden]

Hello,

I am 57 and was diagnosed with Osteoporosis November 2018.  In April 2019, my endocrinologist did a variety of blood work to determine if there was a cause to the Osteoporosis.  The blood-work for Celiac came back high and she suggested that I go to a Gastroenterologist.  I then had an endoscopy with biopsy in May 2019. The results of the endoscopy were: Focal increase in intra-epithelial lymphocytes with preserved villous architecture (Marsh 1).

I repeated the blood work in June 2019 to see if I had possibly a false positive but it still came back high.

In August 2019, I then had the Celiac Genetics test done with Prometheus Lab and I carry both the DQ2 and DQ9 gene which puts me at a very high risk.  I did the Genetic test to see if I carry the gene so that if I didn't, I could rule out Celiac.

I have been gluten free since July and just did another retest on the blood work and my numbers went down. I have a follow up appointment with my Gastroenterologist next week.

I would like some input on questions to ask my Gastroenterologist.  I have no GI symptoms.  Should I repeat an endoscopy?  My 3rd blood test after going gluten-free for 4 months resulted in a negative ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER.   It was positive on my previous 2 tests.  Is this a normal result after going gluten-free?

Here are my blood results:

4/23/19

TISSUE TRANSGLUTAMINASE AB, IGA:  28

ENDOMYSIAL ANTIBODY TITER 1:10

IMMUNOGLOBULIN A: 179

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER - Positive

6/7/19

TISSUE TRANSGLUTAMINASE AB, IGA:  17

ENDOMYSIAL ANTIBODY TITER 1:5

IMMUNOGLOBULIN A: 201

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER - Positive

11/13/19

TISSUE TRANSGLUTAMINASE AB, IGA: 5

ENDOMYSIAL ANTIBODY TITER 1:5

IMMUNOGLOBULIN A: 205

ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER - Negative

 

[cyclinglady]

I am not a doctor, but with both the TTG and the EMA going down (or normalizing), it seems like you are in the right track.  You might have just been developing celiac disease at the time of your endoscopy or your GI missed the damage.  You could get a copy of the pathologist’s report to determine how many biopsies were taken (the more the better).  Keeping your own medical records is a very, very good habit.  Were you on a full gluten diet weeks/months before they endoscopy?  That does impact results.  If you chose to get another endoscopy, be sure you are on gluten for 2 to 4 weeks prior.  All celiac disease testing requires you to be on a full gluten diet.  

How are you handling your osteoporosis?   I am curious, because I have it too.  Had vertebrae fractures two months after my celiac disease diagnosis.  

[Golden]

18 minutes ago, cyclinglady said:

I am not a doctor, but with both the TTG and the EMA going down (or normalizing), it seems like you are in the right track.  You might have just been developing celiac disease at the time of your endoscopy or your GI missed the damage.  You could get a copy of the pathologist’s report to determine how many biopsies were taken (the more the better).  Keeping your own medical records is a very, very good habit.  Were you on a full gluten diet weeks/months before they endoscopy?  That does impact results.  If you chose to get another endoscopy, be sure you are on gluten for 2 to 4 weeks prior.  All celiac disease testing requires you to be on a full gluten diet.  

How are you handling your osteoporosis?   I am curious, because I have it too.  Had vertebrae fractures two months after my celiac disease diagnosis.  

Yes, I was on a full gluten diet before the endoscopy.  I do have a copy of the pathology report and I believe there were 3 or 4 biopsies in all. Duodenum (Second and Third Part), "Stomach, Antrum" and "Gastric, Body".  Could damage still be missed? It seems I'm on the right track but with no GI symptoms, it makes it difficult to know.

As far as the Osteoporosis, I am not taking any medications. I have not had any fractures.  If you have not read Dr. Lani Simpson's No Nonsense Bone Health Guide, I highly recommend it.  It is what lead me to going to an Endocrinologist for further testing.  My Gyn would have put me on meds right away!  Since I had the Celiac testing, I've been thrown off with figuring that out and forgetting about my Osteoporosis.  I do run and use weights to strengthen my bones. My endocrinologist recommended getting another bone density in the Spring of 2020.

Edited November 25, 2019 by Golden

[cyclinglady]

Since I was within six months of menopause, I opted for HRT for a year.  After my back healed, I made sure to focus on weights and exercise (run, bike, walk, swim).   My diet is rich in nutrients.  I take no supplements.  My last bone scan showed no worsening, which is a good thing.  

I went in for a routine colonoscopy (all my friends were getting the ?).  During my GI consult, he suggested celiac disease testing.  I had life-long anemia.  Specifically, I was iron deficient.  Why not caught sooner?  I also have Thalassemia which is a genetic anemia and doctors previously assumed my low hemoglobin was always due to Thals.  Ferritin was only periodically checked and blamed on menstruation.  I had no GI symptoms at the time.  I was shocked because my hubby had been Gluten free for 12 years.  What are the odds?  So, not all celiacs have GI issues.  Celiac disease is systemic and can affect any body system including the brain.  

Thanks for the book recommendation.  I try to avoid supplements and medications because they can trigger allergic reactions for me.  

 

[Golden]

Cyclinglady,

That is good news that your last bone scan showed no worsening! How long have you been gluten free? Do you think eating gluten-free has stabilized your Osteoporosis?  Hopefully you will stay fracture free! Amazing that your hubby had been gluten-free for many years prior to your diagnosis!

Dr. Lani also has a FB group.  Do a FB search of Dr. Lani's Osteoporosis Myths and Facts.  It's recommended to read the book as the group goes by the book. Highly informative info.

[cyclinglady]

I have been gluten free for about six years.  

My iron levels are normal now.  Those improved within a few months of the diet based on lab tests.    I assume I was able to absorb the nutrients needed to build bone.   I think my bones would have been worse had I not been an active person prior to my diagnosis.  Did the HRT help?  Who knows?  Since I was low in female hormones anyway, I figured HRT would help with bone building and reduce my hot flashes.   Two for one!   I did not take calcium or other supplements besides iron as that deficiency was severe.   My Aunt ended up with kidney stones by taking calcium for her bones.  Vitamin D?  I am in the sun daily without sunscreen in California.  I took my sun cues from my Labrador.    She sunbathed daily just for a few minutes.  She was one smart dog!  

 

[Golden]

cyclinglady,

It sounds like you are doing things right if your bones have stabilized.  I hope to find the same on my next density test!

[Mesa]

Hello You two,

Golden, thank you for your post on my thread.  I am answering you here as i just finished reading this thread and am too struck by the similarities.  I  am also on HRT with the added bonus of banishing hot flashes after 4 years. 

I found Lani's book a treasure trove of info.  And Keith McCormick's as well.  If you haven't read his you might want to take a look.  It is a bit more technical with lots of info about nutrition and supplements. He also does consults and was the one who tested me for gluten intolerance/celiac.

Incidentally, my CTX has dropped significantly since starting the HRT and gluten free diet. Yay. ?

[Golden]

Hi Mesa,

Yes, many similarities.  At my GI doctor's office, they have not had a case like mine.  I suppose because most people go when they are experiencing GI issues. I have not been on HRT.  I haven't done enough research to feel comfortable with it.  I have not heard of Keith McCormick so I will check it out too.  Dr. Lani's book has a lot of information to read and can be overwhelming.   I am considering going to a nutritionist.  I haven't made too many changes in my diet except going gluten free.

I'm glad to hear your CTX dropped ( I assume you mean bone density?)  I hope to find the same for me when I get re-tested.

[Mesa]

Oops, I see that it was Cycling Lady who was on HRT. 

 

CTX stands for C telopeptide and it is one of a group of bone markers used by doctors to assess bone turnover rates (this is my understanding anyway, but I am not a doctor). It is a blood test.  But yes, mine was too high so lower is a good thing.  DEXA or DXA is the acronym I have seen for the bone density X-rays.

cheers.

[Golden]

7 hours ago, Mesa said:

Oops, I see that it was Cycling Lady who was on HRT. 

 

CTX stands for C telopeptide and it is one of a group of bone markers used by doctors to assess bone turnover rates (this is my understanding anyway, but I am not a doctor). It is a blood test.  But yes, mine was too high so lower is a good thing.  DEXA or DXA is the acronym I have seen for the bone density X-rays.

cheers.

Mesa,

I have heard of the bone marker tests. What Dr. can order it? No one ever mentioned to me about it.

[Mesa]

You mentioned that you've seen an endocrinologist.  She/He might be the one to order them although I would think any doctor could as long as they were knowledgeable about interpreting the results. Or is it possible she included it in the blood tests she originally ordered?

There is a forum like this one, but for osteoporosis on the Inspire site.  I have found it very informative and helpful and it was there that I learned about bone markers.

Happy Thanksgiving 

[Golden]

On 11/28/2019 at 7:19 AM, Mesa said:

You mentioned that you've seen an endocrinologist.  She/He might be the one to order them although I would think any doctor could as long as they were knowledgeable about interpreting the results. Or is it possible she included it in the blood tests she originally ordered?

There is a forum like this one, but for osteoporosis on the Inspire site.  I have found it very informative and helpful and it was there that I learned about bone markers.

Happy Thanksgiving 

Thank you Mesa.  It was not done in any of my blood work.  I'll take a look at the other forum. Thanks for your help!

[Mesa]

You're very welcome.  Best of luck.

[Golden]

I went to my GI yesterday to discuss the latest blood-work results which had improved. He would like me to repeat the blood-work again in 6 months and also come it to see him.

He has not had any cases like mine where there aren't any GI symptoms (even though I feel Osteoporosis is a symptom), positive blood-work and only Marsh I with a biopsy.  He said that everything seems to indicate Celiac (except for the biopsy). He also seemed to say that if at some point that if I would want to eat gluten again and have another endoscopy.  I'm not sure he's totally convinced that I should be gluten free even though there is evidence that going gluten free is bringing my blood work to near normal.  This alone seems to indicate to me that I'm doing the correct thing by being gluten free.

I'm not sure what to think since he does not have experience with my situation.

 Do most people that are asymptomatic still have damage to the villi?

[cyclinglady]

To answer your question, yes.  Asymptomatic celiacs can have small intestinal damage.  

In your case, maybe your damage was not caught (or was just starting).  The small intestine when stretched out is bigger than a tennis court.  Easy to miss damage.  You need to get the pathologist’s report.  How many samples were submitted to the lab and from what locations?  

What if your celiac disease was just turning on?  Were you gluten light when you had the first endoscopy?  Did your doctor tell you to go on a gluten free diet after you first positives in your TTG and EMA?  Or did you just avoid gluten?   Lots of doctors and patients do not realize that all celiacs need to be on a full gluten diet.  Like two pieces of bread per day.  I can only imagine all these Keto and Paleo dieters will never get an accurate celiac disease test.  But I digress......

Two positives on the blood test panel?  It strongly indicates that you have celiac disease.  The fact it dropped on a gluten free diet is another encouraging sign.  

Some doctors and most people think that a gluten free diet is some horrible life-long sentence.  It is not.  Everyone needs to rethink the sugary Standard American Diet, in my opinion.  Sure eating out is tough, but based on almost twenty years of dealing with gluten avoidance, we have come a long way,  more products and dedicated gluten-free restaurants.  I expect more as more celiacs are identified (only 20% are actually diagnosed leaving 80% walking around sick or will be sick).  

I do not know if I would do another endoscopy (I can not imagine it).  Consider taking all your reports to another GI if your first is unwilling to give you a diagnosis.  

[Golden]

cyclinglady,

Yes I do have my pathology report from the endoscopy.  I believe he did 4 biopsies.  I did talk to him about this.  He said it's always possible that he could have missed the damage.  I did not go gluten free until AFTER my endoscopy results. My GI said he would call what I have Celiac based on what is happening with my blood work.  I don't have a problem with going gluten free, but I do wish the biopsies that I had were more definitive.

How often do you get your blood work repeated?  Do you go to your GI to discuss each time?

 

 

[Mesa]

cyclinglady,

when you say you cannot imagine doing another endoscopy is that because of the weeks eating gluten in preparation for it or because the procedure itself?

 

[Golden]

Hi Mesa,

I know you were asking cyclinglady, but the endoscopy is not a difficult or painful procedure. 

 

[Mesa]

LOL.  Phew. I'll sleep better tonight knowing that.  Thanks ?

[Golden]

13 minutes ago, Mesa said:

LOL.  Phew. I'll sleep better tonight knowing that.  Thanks ?

Great? 

Have you scheduled an endoscopy yet?

[cyclinglady]

Glad that Golden provided an answer.  I want you to be able to sleep.  The endoscopy is easy.    Eating gluten to purposely ramp up an autoimmune reaction after being gluten free is not!  Most people get pretty sick (and that would be me).  

My Internist handles my annual check ups now.  But I ran into a problem two years ago, so I went back to my GI.  Long story, but a repeat endoscopy revealed a healed small intestine, but found autoimmune gastritis.  I learned not every GI issue is due to reactivated celiac disease (even if my DGP IgA was very elevated) and that I was doing a great job with my diet.    I learned too that follow-up testing is not always accurate either, but it is the “only-tool-in-toolbox”, so doctors use it.  

Standard follow-up testing is 3 months, six months and then yearly.  

If I want to see my Gi,  I just have to email him and ask for tests or an appointment.  

Missing damage is possible.  The small intestine is 20 feet long!   I share a story about my niece often.    Celiac disease was firmly ruled out.  Her 4th GI decided to use a pill camera that found damage from out of the reach of both scopes.  She has Crohn’s.  Not every diagnosis is a classic textbook case.  

Edited December 5, 2019 by cyclinglady

[Mesa]

It is awful that the test needed to confirm a diagnosis is what triggers the symptoms.  I have read that most people have a tough time with the ramp up for the test and feel quite lucky that I am not having intense symptoms.  Although when  I initially went off gluten I didn't notice any changes in my body, but 4 months later when I went back on it last month I now do have some symptoms. Seems my body got used to not having to contend with it.

Cyclinglady you have been on quite a journey with your digestive tract but glad you have found solutions.  And your niece as well I hope.

Golden, I have not scheduled the endoscopy yet.  I have an appointment with a GI who specializes in Celiac disease 5 weeks from now. I am eating gluten on the assumption (hope) that he will be able to schedule the endoscopy reasonably soon after our initial meeting. And I am assuming he may want to do more  blood tests.  (hence my starting to eat gluten already)