Looking for input

[Mesa]

Hi All,

Briefly, I was diagnosed with osteoporosis at age 57 which led to some tests to determine if there was a specific cause or just your garden variety osteoporosis.  One of the gluten tests came back high and I was told by an endocrinologist that i had celiac disease. Tests are as follows (and i am copying them word for word as i am not sure of all my abbreviations yet). 

Immunoglobulin A Tissue transglutaminase AB, IGA - 1 with a value of less than 4 for the cutoff

Gliadin (deamindated) AB (IGG, IGA) Gliadin (deamindated) AB (IGA)  - 6 with less than 20 as the cutoff (this looks like it should be 2 tests but there is only one result next to it)

Gliadin (deamidated AB (IGG)   33 with a cutoff of less than 20.

Today, my PCP told me that the tests have false positives and that I should have a biopsy to determine if I actually have celiac disease.  I have gone diligently gluten free since August.  I am not sure if I am getting any gluten (I do eat out at restaurants that are gluten aware, but I also I share a toaster with a gluten eater in my house)  but I have no symptoms (never have) and have not noticed any changes in my body since stopping the gluten so there is no way to know.

I feel confused and wish i had done more research on the tests before beginning the gluten free diet.  I have an appointment with a gastroenterologist in January.

My questions are these.  Should I start eating gluten again now to prepare for the presumed biopsy early next year? Should I have a biopsy?  And can you help me decipher the above numbers in terms of the likelihood of my actually having celiac disease?  I am concerned about the osteoporosis (if I do start eating gluten then I won't be absorbing the much needed calcium) but would honestly love to be able to eat gluten over the holidays!

Thank you in advance for your insight and advice.

 

[GFinDC]

Hi Mesa,

All celiac testing requires us to be on a gluten containing diet for accurate results.  The university of Chicago celiac center reccommends 12 weeks of eating gluten before the blood antibodies testing, and 2 weeks before the endoscopy testing.

***************************************************************

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

*****************************************************************

The DGP IgG test is definitely positive.  While there is a very small chance of a false positive result, it is unusual.  There are people with celiac disease who have no symptoms.  That condition is called silent celiac disease.  These people still have to follow the gluten-free diet, as internal damage can still occur.

Over time untreated celiac disease can cause many health issues and possibly death.  So it is something you certainly want to know about if you have it.  There are many gluten-free foods available now so it is not super hard to follow the gluten-free diet anymore.

Welcome to the forum and many happy returns!

 

Edited November 13, 2019 by GFinDC

[cyclinglady]

Hi!  

You do have a positive on the DGP IgG which means you have been correctly referred to a Gastroenterologist.  You might be IgA (Immunoglobulin A) deficient which could impact the DGP IgA and TTG IgA.  I guess your endo was trying to save you money by not checking to see if you are IgA deficient or he figured if you were IgA deficient, the IgG tests would catch your diagnosis.  

Why are you seeing an endo?  I ask because Type 1 diabetes (autoimmune) or autoimmune thyroiditis are often linked with celiac disease.  

A gluten challenge  is only two weeks if going straight to endoscopy.  Otherwise, the challenge is much longer for the blood tests (see GFinDC’s advice above).   Consider doing the longer challenge as your DGP IgG result is not common.  

Are you iron or b-12 deficient?  If not, that might be a clue that you might be absorbing your calcium just fine.  So do some research on calcium and other  minerals that have been promoted over the last 20 years for osteoporosis.  They may not be effective.  

https://www.sciencenews.org/article/vitamin-d-supplements-lose-luster

I have celiac disease, was iron-deficient (severe anemia) and have osteoporosis (a few vertebrae fractures doing nothing)!  I chose to focus on hormones (since I was  diagnosed within a year of menopause), sunshine and exercise.  Additional bones scans at least show I am not getting worse and I have not has any other fractures in five years.  I have healed from celiac disease, so malabsorption is not a current issue for me.   

Edited November 13, 2019 by cyclinglady

[Mesa]

Thank you both so much for all this information.  It is extremely helpful.

Cyclinglady - I saw the Endo for the osteoporosis diagnosis.  And I too am going the HRT, weight bearing exercise, better nutrition route because I was diagnosed within a year of menopause.  But, I get migraines, and have been told by a neurologist that I am putting myself at greater risk of stroke by being on it.  Sigh. 

Can you elaborate about the IGA?  I am not sure I am understanding.  If the IGA immunoglobulin is deficient it could create DGP IgA numbers that are lower than they actually are? And these actual higher numbers would be more in keeping with my high DGP IgG number?

I just had labs drawn yesterday but don't see either iron or B12 on there so will call my doctor. That is very helpful to know.

Lastly, can you explain why the blood test would be better because my IgG is not common.  Because it might signify other causes? I am all for not having an invasive procedure but was told this was the "definitive" test. 

Congrats on being fracture free for 5 years!

I don't know why at this age I am still surprised when a medical diagnosis proves to be complicated with a steep patient learning curve and many nuanced, connecting pieces.  LOL I just experienced the same thing with the OP.

Again, thank you both.  These message boards are a lifesaver when facing a new and confusing diagnosis and trying to get up and running with everything you need to know.

[cyclinglady]

The IgA test, when used in celiac disease testing,  is a control test.  If you are producing IgA, the corresponding celiac disease tests: DGP IgA, TTG IgA, EMA IgA, will be considered valid.  If you are IgA deficient, these tests are not accurate.  About 10% of celiacs are IgA deficient.  That said, the celiac antibodies tests are very good but not perfect.  Some celiacs (again around 10%) are seronegative.  Some celiacs like me, never test positive to the EMA and TTG which are the most popular celiac blood tests.  For all the above reasons, intestinal biopsies are still the gold standard in diagnosing celiac disease.  Still.  

Your result is not common.  I think you need to find out if you are IgA deficient.  The DGP IgG is a very good test and is pretty specific to celiac disease.  It is best used as a dietary compliance test, but heck, I never had a positive DGP IgG test.  Some members have had intestinal damage with a positive DGP IgG test, but others have not.  They might just be developing celiac disease or they might have a gluten sensitivity.  

The bottom line is that the blood tests are good at screening for celiac disease, but intestinal biopsies are best.  I wish there was a better way.  But there is not.  Researchers are looking for more non-evasive ways that are evidence based. 

Some patients do not have access to a Gastroenterologist for many reasons.  Often doctors will diagnose patients based on blood tests alone.  Usually, those patients have very high results (off the charts).  In your case, you have an odd result, like me.  You should really try to see a GI.  Find one in your network who is celiac-savvy.  

Migraines are common with celiac disease.  But then migraines accompany a large group of illnesses.  It is why getting a diagnosis is difficult.  Just diagnosing by symptoms alone is difficult.

Ask  for a ferritin test (iron stores).  My standard iron tests were always good.  I was able to process iron for a long time, but could not consume enough to store it.   I also have a genetic anemia, so when I was under range for hemoglobin my doctors blamed Thalassemia.  It was not until I was going through menopause that I became severely anemic.  

I was on a systemic HRT for about a year or so.  Actually, I had been on them on and off for 10 years leading up to my diagnosis.  Once on the gluten-free diet, all my hormones calmed down.  Even my thyroid nodules disappeared, along with the enlargement (I still take thyroid hormone replacement because damage was done to my thyroid).  But my thyroid antibodies dropped significantly indicating that my autoimmune response improved and by treating my celiac disease, I helped my other autoimmune disorders.  

If you can, get back on gluten now.  Then the GI can run the entire panel.  

[Mesa]

Hi Again,

And thank you for the in depth explanation.  Very helpful and i now have a plan for moving forward.

I have an appointment with a GI in January who specializes in celiac disease and am hoping i might be able to get in sooner if there is a cancellation.  I would be THRILLED to start eating gluten again and will be able to do so without intestinal distress so I am very thankful for that.   I'll start in the next few days so that both the blood panel and endoscopy can be done in the new year.  I also plan on having the iron and B12 tests you mentioned, once i am eating gluten again, so that i have a clearer idea of how I am absorbing nutrients with it in my system.

Amazing (and fascinating) how so many of your other issues resolved when you went gluten free.  I am so glad to hear it. 

Thanks again.  Truly.   In 24 hours you've changed my understanding of the diagnosis process.  ?

 

[Mesa]

So, I think I missed my IGA because of how the lab test results were written.  I found a different copy of them and directly above the gluten tests is one entitled Immunoglubulin A.  My result is 186 within a normal range of 81-463.  I just wanted to check with you that this was indeed the IgA test you mentioned to see if I was deficient.  Which, if it is, appears that I am not. 

Anyway, I am bringing all this info with me to the Gastro appointment.  I just want to be sure that I go in understanding the results I already have.

Thanks.

[cyclinglady]

Yep, normal IgA, so the celiac-related “IgA” tests should be valid.  But....not always for reasons I mentioned previously.  

[Mesa]

Got it.  Thanks!

[Golden]

On 11/12/2019 at 7:02 PM, Mesa said:

Hi All,

Briefly, I was diagnosed with osteoporosis at age 57 which led to some tests to determine if there was a specific cause or just your garden variety osteoporosis.  One of the gluten tests came back high and I was told by an endocrinologist that i had celiac disease. Tests are as follows (and i am copying them word for word as i am not sure of all my abbreviations yet). 

Immunoglobulin A Tissue transglutaminase AB, IGA - 1 with a value of less than 4 for the cutoff

Gliadin (deamindated) AB (IGG, IGA) Gliadin (deamindated) AB (IGA)  - 6 with less than 20 as the cutoff (this looks like it should be 2 tests but there is only one result next to it)

Gliadin (deamidated AB (IGG)   33 with a cutoff of less than 20.

Today, my PCP told me that the tests have false positives and that I should have a biopsy to determine if I actually have celiac disease.  I have gone diligently gluten free since August.  I am not sure if I am getting any gluten (I do eat out at restaurants that are gluten aware, but I also I share a toaster with a gluten eater in my house)  but I have no symptoms (never have) and have not noticed any changes in my body since stopping the gluten so there is no way to know.

I feel confused and wish i had done more research on the tests before beginning the gluten free diet.  I have an appointment with a gastroenterologist in January.

My questions are these.  Should I start eating gluten again now to prepare for the presumed biopsy early next year? Should I have a biopsy?  And can you help me decipher the above numbers in terms of the likelihood of my actually having celiac disease?  I am concerned about the osteoporosis (if I do start eating gluten then I won't be absorbing the much needed calcium) but would honestly love to be able to eat gluten over the holidays!

Thank you in advance for your insight and advice.

 

My situation is very similar to yours with the diagnosis of Osteoporosis and then my endocrinologist did a variety of blood tests and found that my blood work for Celiac was high.  I do not have any GI symptoms and would have never suspected Celiac.  I did have an endoscopy with biopsy which ended up not definitive for Celiac - Marsh 1.  I also did the genetic testing to see if I carry the genes or not.  I carry both the DQ2/DQ8 Genes which puts me at a very high risk for Celiac, but does not confirm celiac.  I have been gluten free since July and just had my blood work repeated and my numbers went down.  I go back to my Gastroenterologist in a week to discuss.