Help understanding celiac panel results

[GlenY]

For the past year I’ve been battling a variety of symptoms—aches in my arm and leg bones (hands and feet especially), tingly/burning skin, facial numbness around my mouth, and anxiety. A few months ago around Christmas, I started developing abdominal pain on the left side and back pain in my kidney area and on my back ribs. The kidney pain is diffuse and dull, whereas the rib pain is tender and sharp when pressed. These latter symptoms beginning around Christmas seem to be getting worse, but the early symptoms have stayed about the same for months. 

After numerous blood tests that only revealed a slight vitamin D deficiency (which normalized on subsequent tests), a brain MRI, and an abdominal ultrasound—all of which were normal—my doctor ordered a celiac panel, the results for which were (mostly) elevated. Here are my results (the reference range listed for all four is < 15):

GLIADIN AB, DEAMID. IGG - Result: 82

GLIADIN AB, DEAMID.  IGA - Result: >250

TTG IGG - Result: 1

TTG IGA - Result: > 250

Here are my questions:

1. What is the likelihood I have celiac, given the elevated results for 3 out of 4 markers?

2. What is the difference between the tests? More specifically, are they telling me different things? Is one more accurate than another?

3. Could celiac explain my back pain in my kidney area and ribs? I cant find anything online to that effect. I’m afraid of something more serious like lung, kidney, or bone cancer. My primary care doc doesn’t want to pursue imaging until after confirming my celiac diagnosis through a biopsy, but that won’t take place for another month. 

I appreciate your help. 

[CMCM]

18 minutes ago, GlenY said:

For the past year I’ve been battling a variety of symptoms—aches in my arm and leg bones (hands and feet especially), tingly/burning skin, facial numbness around my mouth, and anxiety. A few months ago around Christmas, I started developing abdominal pain on the left side and back pain in my kidney area and on my back ribs. The kidney pain is diffuse and dull, whereas the rib pain is tender and sharp when pressed. These latter symptoms beginning around Christmas seem to be getting worse, but the early symptoms have stayed about the same for months. 

After numerous blood tests that only revealed a slight vitamin D deficiency (which normalized on subsequent tests), a brain MRI, and an abdominal ultrasound—all of which were normal—my doctor ordered a celiac panel, the results for which were (mostly) elevated. Here are my results (the reference range listed for all four is < 15):

GLIADIN AB, DEAMID. IGG - Result: 82

GLIADIN AB, DEAMID.  IGA - Result: >250

TTG IGG - Result: 1

TTG IGA - Result: > 250

Here are my questions:

1. What is the likelihood I have celiac, given the elevated results for 3 out of 4 markers?

2. What is the difference between the tests? More specifically, are they telling me different things? Is one more accurate than another?

3. Could celiac explain my back pain in my kidney area and ribs? I cant find anything online to that effect. I’m afraid of something more serious like lung, kidney, or bone cancer. My primary care doc doesn’t want to pursue imaging until after confirming my celiac diagnosis through a biopsy, but that won’t take place for another month. 

I appreciate your help. 

On a celiac panel with three out of four tests being strongly positive, you do appear to have celiac disease.  At this point you would benefit from a gene test to determine if you have a celiac gene or merely gluten sensitivity genes.  You might have both....one from each parent, of course.   A gene test isn't invasive whereas a biopsy is, and the gene test is obviously cheaper as well.  Whether it's celiac or gluten sensitivity driving your symptoms, the course of action is the same:  you must totally eliminate gluten.   If you have a celiac predisposing gene, it's your choice along with your doctor to decide if you want to undergo a biopsy to determine any level of intestinal damage at this point and the get a more solid diagnosis of celiac disease.  But again, that gives you more knowledge about what is going on, but still, your one choice to get better is to eliminate gluten.  Also, to further confuse things, the symptoms you describe could be caused by undiagnosed celiac OR gluten sensitivity....they can do similar damage over time when you've been eating gluten.  They can both open the door to other autoimmune diseases.  I used to be very concerned about getting a definitive celiac diagnosis, but could not get a positive test and therefore could not get a biopsy.  After a lot of reading and study, I've realized how both celiac and gluten sensitivity create symptoms and do damage in various ways, and I finally realized the important thing was to get better and eliminate my symptoms, and also prevent any further damage.  Celiac or gluten sensitivity, I had to stop eating gluten forever.

If you stop gluten immediately and give it at least a month or two or possibly longer, you should see a noticeable lessening of symptoms, and some of them might go away entirely in that time.  Some go away quicker than others, so you do have to be patient with the gluten free diet and allow all the time needed.  Some people have reported an improvement after a year or more, but most seem to see big improvements fairly quickly.  

Edited April 1, 2021 by CMCM

[GlenY]

25 minutes ago, CMCM said:

On a celiac panel with three out of four tests being strongly positive, you do appear to have celiac disease.  At this point you would benefit from a gene test to determine if you have a celiac gene or merely gluten sensitivity genes.  You might have both....one from each parent, of course.   A gene test isn't invasive whereas a biopsy is, and the gene test is obviously cheaper as well.  Whether it's celiac or gluten sensitivity driving your symptoms, the course of action is the same:  you must totally eliminate gluten.   If you have a celiac predisposing gene, it's your choice along with your doctor to decide if you want to undergo a biopsy to determine any level of intestinal damage at this point and the get a more solid diagnosis of celiac disease.  But again, that gives you more knowledge about what is going on, but still, your one choice to get better is to eliminate gluten.  Also, to further confuse things, the symptoms you describe could be caused by undiagnosed celiac OR gluten sensitivity....they can do similar damage over time when you've been eating gluten.  They can both open the door to other autoimmune diseases.  I used to be very concerned about getting a definitive celiac diagnosis, but could not get a positive test and therefore could not get a biopsy.  After a lot of reading and study, I've realized how both celiac and gluten sensitivity create symptoms and do damage in various ways, and I finally realized the important thing was to get better and eliminate my symptoms, and also prevent any further damage.  Celiac or gluten sensitivity, I had to stop eating gluten forever.

If you stop gluten immediately and give it at least a month or two or possibly longer, you should see a noticeable lessening of symptoms, and some of them might go away entirely in that time.  Some go away quicker than others, so you do have to be patient with the gluten free diet and allow all the time needed.  Some people have reported an improvement after a year or more, but most seem to see big improvements fairly quickly.  

Thank you for the quick response. That’s interesting to hear about the different types of genes that can be involved. I am the only person in my immediate family with likely celiac, but I have an aunt and several cousins with it. I will hold out hope that celiac is the culprit of my symptoms. It will be a long month as I continue to eat gluten in order to get an accurate biopsy result, but I look forward to the relief when I switch diets. 

[trents]

GlenY, to be able to say very much about your test results we would need to know what standard the lab used for baseline. Different labs use different standards so it's like comparing apples with oranges. Do you have access to the numbers that would constitute normal range for each of those test results?

Celiac disease and gluten sensitivity both often produce neurological problems. That is a common complaint.

The other thing is, if you are considering further testing, like an endoscopy/biopsy to check for small bowel mucosa damage, you would need to be consuming gluten on a daily basis at least two weeks before the test or it may not be valid.

[GlenY]

12 minutes ago, trents said:

GlenY, to be able to say very much about your test results we would need to know what standard the lab used for baseline. Different labs use different standards so it's like comparing apples with oranges. Do you have access to the numbers that would constitute normal range for each of those test results?

Celiac disease and gluten sensitivity both often produce neurological problems. That is a common complaint.

The other thing is, if you are considering further testing, like an endoscopy/biopsy to check for small bowel mucosa damage, you would need to be consuming gluten on a daily basis at least two weeks before the test or it may not be valid.

Thanks for your reply. The reference range (which I interpreted as meaning the normal range) was less than 15. So my values are high, except for one, which was 1. 
 

I’ll make sure to keep consuming gluten until my biopsy. I’m honestly hoping for a confirmed diagnosis because it will at least help give me a path to try moving forward. I’d eat sawdust for every meal if I could feel good again!

[trents]

Glen, if you have celiac disease, there is a 44% chance your first degree relatives will have it as well, even if they seem asymptomatic at this point in time. If people wait until they have dramatic symptoms, irreversible damage can be done to certain body systems. 

[Scott Adams]

Just so you know, in Europe they are diagnosing celiac disease without a biopsy when celiac blood antibody levels are 10x the normal range, and that is happening more in the USA as well. Your doctor may want to do a follow up biopsy, but to me having 3 very high readings should be enough to diagnose you. The final test would be to see whether a gluten-free diet helps with your symptoms.

[GlenY]

1 hour ago, Scott Adams said:

Just so you know, in Europe they are diagnosing celiac disease without a biopsy when celiac blood antibody levels are 10x the normal range, and that is happening more in the USA as well. Your doctor may want to do a follow up biopsy, but to me having 3 very high readings should be enough to diagnose you. The final test would be to see whether a gluten-free diet helps with your symptoms.

Thanks so much, Scott. I am going to try to see if a different doctor can do the endoscopy earlier. It seems like confirming the diagnosis via biopsy is the next required step before my doc will allow me to pursue other explanations (imaging, colonoscopy), so the sooner I can get my diagnosis, the better. I appreciate your response and the service you generously offer in administering this forum.

[CMCM]

Even in 2021, diagnosing celiac disease isn't always clear cut or easy.  For example....

1.  A blood test can be negative, yet you still have celiac disease.  There are a number of reasons for this outcome, but I won't get into them now.  I've read that up to 30% of people tested can fall into this category.

2.  A blood test can be positive, yet no villi damage is apparent from a biopsy.  A major reason for this outcome is that flattened villi occurs in patches and can quite easily be missed, plus a biopsy can't sample every part of the intestine.  So taking several samples from different spots doesn't ensure there are no damaged spots elsewhere.  However, at this point, doctors have been known to say you don't have celiac disease and tell you to go on eating gluten.  And you continue to be sick.

A second outcome of a biopsy revealing  no villi damage is that you don't yet have any damage, but if you keep eating gluten the damage can occur years or even decades down the road with disastrous results.  But for the time being, you are already getting symptoms that you want to address.

3.  A gene test is useful because it reveals:

    ......if you have a celiac gene,  without which you at least don't have to worry about celiac disease as that particular autoimmune attack location (intestines) won't occur without it.

   ...OR perhaps you have a celiac gene and a gluten sensitivity gene, so either way, you are sensitive to gluten.  Researchers/doctors are increasingly referring to the whole spectrum as "gluten sensitivity", of which celiac disease is but one of many possible manifestations of gluten sensitivity and which occurs only if you have the predisposing gene. Celiac disease is one point on the greater gluten sensitivity spectrum.

    ...OR perhaps you have no celiac gene but you have two gluten sensitivity genes which are doing      damage various places and  causing your physical problems,

    ....OR finally, you learn you don't have any of the identified gluten sensitivity genes at all.  In this case you likely have other things going on not related to gluten that are causing your physical symptoms.  So a gene test narrows down the possibilities of what your root problem may be.

FINAL RESULT:  If a gene test shows at least one celiac gene, or one gluten sensitivity pattern gene, or a combination of these two, YOU MUST STOP EATING GLUTEN if you want to heal.  Ultimately, the proof will be in the diet, but the healing isn't usually instant.  You can see improvements in a few weeks, but it could and usually does take longer.

If I were starting over with myself, I would proceed like this, all WHILE EATING GLUTEN DAILY:

1.  Get a celiac panel blood test.  If positive results show up (like with you), next do #2.   In fact, if negative results show up (as with me) I would still do #2 next.

2.  Get a gene test to see if celiac is a strong possibility (or not), and to know if you also have the GS genes if not celiac.  Since I have one celiac gene and one GS gene, plus a mother who had celiac disease, I finally decided to stop at this point (no biopsy) and just go strictly gluten free.The worst of my symptoms disappeared after about 2 weeks.  Other symptoms are incredibly better after nearly 3 months.  Other symptoms (neuropathy in feet) are better but not gone yet.  

If you have a celiac gene, you may or may not want to undergo a biopsy to try to confirm that you have any villi damage, but if you get the biopsy be aware that it **might not** get the spots with villi damage and thus might not provide the solid answer you seek.  

3.  Go strictly gluten free and see if your physical problems resolve or at least get vastly better over a period of at least 6 months and possibly longer.  If you start to get better, you have the answer you need, and no doctor or procedure or test can do better than what you diet reveals. 

Edited April 1, 2021 by CMCM

[GlenY]

Thanks so much. To clarify, can a person develop celiac without having one of the celiac- or GS-related genes?

I haven't done gene testing exclusively for celiac, but after reading your post, I reviewed my 23andMe results, and one of two celiac-related "markers" was detected, giving me a "slightly increased risk" of developing celiac. The marker detected was HLA-DQ2.5. Apparently, 15-30% of people have this or both markers, only 3% of which develop celiac disease; however, 90% of those who develop celiac disease have the marker.

Given my blood work, and given my genetic profile, I intend to go gluten-free, regardless of what the biopsy shows, though I would be shocked if it comes back negative. Hopefully that will relieve some of my symptoms and, if not, at least allow me to rule out gluten as the culprit. Thanks for your response.

 

[Scott Adams]

Because they are still discovering small nuances in genetic markers for celiac disease, this is possible, but very unlikely. Non-celiac gluten sensitivity, however, can't be ruled out, as we still don't have a good scientific understanding of this, nor how genetic makeup may influence it.

[CMCM]

3 hours ago, GlenY said:

Thanks so much. To clarify, can a person develop celiac without having one of the celiac- or GS-related genes?

I haven't done gene testing exclusively for celiac, but after reading your post, I reviewed my 23andMe results, and one of two celiac-related "markers" was detected, giving me a "slightly increased risk" of developing celiac. The marker detected was HLA-DQ2.5. Apparently, 15-30% of people have this or both markers, only 3% of which develop celiac disease; however, 90% of those who develop celiac disease have the marker.

Given my blood work, and given my genetic profile, I intend to go gluten-free, regardless of what the biopsy shows, though I would be shocked if it comes back negative. Hopefully that will relieve some of my symptoms and, if not, at least allow me to rule out gluten as the culprit. Thanks for your response.

 

I have read that many researchers think there is a great deal more to be discovered about who gets celiac disease and why, perhaps other unidentified genes or factors, but for now, it is believed that to get celiac disease you need one of the two celiac identified genes of HLA-DQ2 or DQ8.  As for 23andMe, I don't know what that test uses to claim to identify as "risk for celiac", that doesn't make sense to me unless the test were looking specifically for celiac genes.  The HLA-DQ2.5 gene is supposedly quite close to the HLADQ2 gene but it's not really identified as celiac.  However, I did read that it is closer than any of the gluten sensitivity related genes. My sister has DQ2 and DQ2.5, and she was told that the closeness of the two genes *might* give her a greater chance of celiac disease at some point.  Meanwhile, she is very gluten sensitive and avoids all gluten.

Keep us posted on the results of the biopsy.  If I were you, I would still be curious about what both genes are.  Perhaps one is the DQ2.5, but what is the other one?  If you had DQ2 I wonder if 23andMe would pinpoint that one??  Perhaps the fact that they identified 2.5 and not 2 means you don't have the celiac gene.  That said, the 2.5 is a gluten sensitivity pattern gene, so from my most recent reading on this subject, I've concluded that "mere" gluten sensitivity should be taken just as seriously as celiac disease.  Much of the damage done can be just as severe as celiac disease.  

Also....you are better off knowing if you have a celiac gene, and you'd be extra lucky to know if the biopsy is positive or not.  Many people (and this includes me!) don't take the necessity of being gluten free as seriously as they should when not specifically diagnosed with celiac.  I pushed things by being generally gluten free but not entirely, and over a period of time I paid the price with a gluten induced health crisis that I finally had to address seriously.  Gluten free means 100% gluten free, avoid every smidgen of gluten everywhere.  I didn't do that initially, and I regret that now.

[GlenY]

I’ll keep you posted on the biopsy. Fortunately, I was able to get my procedure moved up today, so now I only have to wait two weeks instead of five. Can’t come soon enough! Do you have a recommendation for a celiac gene and/or gluten sensitivity testing product?

[trents]

To put the question another way, do we really know all the genes involved across the spectrum of a population that predispose one to develop celiac disease?

[CMCM]

1 hour ago, trents said:

To put the question another way, do we really know all the genes involved across the spectrum of a population that predispose one to develop celiac disease?

I'm thinking probably not.  There is probably more to know and understand than is currently known.

[DJFL77I]

On 3/31/2021 at 10:46 PM, GlenY said:

 

1. What is the likelihood I have celiac, given the elevated results for 3 out of 4 markers?

 

100%

[DJFL77I]

your antibody levels ae over 250..  ">" this means greater than the number listed..  they just didnt record past 250.