Accurate blood test with CVID

[hagedorns1018]

My IgA is low, so the Celiac Reflex was triggered to do the Celiac Disease Dual Antigen Screen. This test was negative (result 4; ref range 0-19). The problem is, I have low IgG as well. 

My understanding is that if serum IgA is low, the celiac tests involving IgA antibodies can give a false negative. My question is, does this same logic apply to low IgG?

I appreciate any input. I know you all will be more helpful than the doctor who ordered the test... this was his message after the tests were resulted: "Celiac disease testing was negative. A low IgA level is no concern. IgA level is high in celiac disease."  

[GFinDC]

Hi Hagedorns, I am not sure what the dual antigen test is.  Did they do the DGP tests?  The doctor comment on IgA doesn't make sense.  If the total IgA is low then IgA is not a valid test for celiac.  Maybe you should try a different doctor.

[cyclinglady]

An IgA deficiency (low IgA) is a big concern.  It has been actually linked to celiac disease.  That's why during a screening, if the IgA deficiency test comes back low, further testing for celiac disease is required.  Gluten Free in DC is right.  Get another opinion or insist on a complete celiac panel!  Continue to consume gluten until all testing is complete!  

Read these links regarding your situation: 

Open Original Shared Link

 Open Original Shared Link 

[hagedorns1018]

A Dual Antigen Screen includes transglutaminase and deamidated gliadin-derived peptide antibodies, IgA and IgG. The "Dual" part just means they are checking both IgA and IgG since my IgA was low and can give a false negative. But being deficient in all immunoglobulins is pretty rare, so I don't think they take low IgG into account when they rely on the tests based on IgG.

I don't think I'm going to go through with a biopsy... I think it would be more beneficial to try a gluten free diet for a good bit of time and see if there is improvement. I do think Celiac or a similar gut issue is contributing to my immunodeficiency... especially now that I've had my IgG rechecked after 4 months of IgG infusions and my level has hardly budged--I'm losing it somewhere, i.e. leaky gut??

I already TRY to avoid grains in general, but I'll have to start looking for "hidden" gluten and be conscious of cross-contamination. 

While I'm glad that this doctor considered celiac disease as a cause for my GI and malabsorption issues, I am certainly concerned about his lack of understanding of what the results mean. Unfortunately, my PCP left primary care so I'm still looking for a new one. 

Thanks for your input!  

[cyclinglady]

If you already are gluten light (not consuming grains) an intestinal biopsy would most likely be negative (at least for celiac disease).  I think you are on the right path.  Cross contamination is huge for celiacs as well as hidden sources.  Please give the diet at least six months.  It took me over a year to feel well and "normal" after two years and I do not have CVID!  

Google CVID or IVIG  within the site.  We have a few members with CVID who are not as active on the site, but their postings might be helpful.  Here's one:

 

[hagedorns1018]

Thank you so much! That is a great idea! It does seem there are a few other Zebras here, but, like you said, they haven't been active for a while. Also, great info to know to give it at least 6 months... I had 12 weeks in my head but I will definitely commit to it for at least 6 months before deciding whether or not things have improved. 

[Irene Joanne]

15 hours ago, hagedorns1018 said:

A Dual Antigen Screen includes transglutaminase and deamidated gliadin-derived peptide antibodies, IgA and IgG. The "Dual" part just means they are checking both IgA and IgG since my IgA was low and can give a false negative. But being deficient in all immunoglobulins is pretty rare, so I don't think they take low IgG into account when they rely on the tests based on IgG.

I don't think I'm going to go through with a biopsy... I think it would be more beneficial to try a gluten free diet for a good bit of time and see if there is improvement. I do think Celiac or a similar gut issue is contributing to my immunodeficiency... especially now that I've had my IgG rechecked after 4 months of IgG infusions and my level has hardly budged--I'm losing it somewhere, i.e. leaky gut??

I already TRY to avoid grains in general, but I'll have to start looking for "hidden" gluten and be conscious of cross-contamination. 

While I'm glad that this doctor considered celiac disease as a cause for my GI and malabsorption issues, I am certainly concerned about his lack of understanding of what the results mean. Unfortunately, my PCP left primary care so I'm still looking for a new one. 

Thanks for your input!  

I'm very thankful I had my biopsy- I've had to see quite a few doctors/specialists since my diagnose and 99% of them don't believe I have celiac until I tell them I had the blood work AND the biopsy. It makes it so much easier to be taken seriously. 

[hagedorns1018]

Irene, does your doctors' believing you change how they care for you? I'm just curious because since I was diagnosed with immunodeficiency last fall (which took 20 of my 29 years to finally get diagnosed!), it really hasn't changed the care I receive (other than being on IgG infusions). I'm not sure how confirming a dx of Celiac would change how they would care for me. I think if I feel better, and especially if I can get my iron level to go up instead of keep dropping, that would be enough confirmation for me. If, however, I am still having issues after 6 months gluten-free, I would definitely consider scoping and biopsy--especially because of the celiac-like issues you can have with CVID.  

[cyclinglady]

My hubby went gluten free 15 years ago per the poor advice (based on what we know today) from my allergist and his GP.  He did it.  Took about a year to really get the diet down and to have the determination to stick with it.  It worked!  But now he refuses to do a gluten challenge.  Getting "glutened" has made him very ill for at least a week.  But he'd be the first to say that I have had more support with my celiac disease diagnosis (three years ago) from medical, family and friends.  My doctors are quick to give me a bone scan, test for deficiencies, etc. as it relates to celiac disease.  If by chance I live long enough to be in a nursing home, or I get sentenced to prison, I have some protection (I hope!).  It has also allowed my family members to get tested.  Hopefully, this will prevent them for going years un-diagnosed,  since this is a genetic disorder that is triggered by some environmental factor.  

Only you can decide what is best for you.  I have no knowledge about CVID so I can not comment on it.  Heck, I don't know your full medical history and I am not a doctor.  I can only share in your frustration with the medical field.  It is a shame that the only way to get a celiac disease diagnosis is by causing severe intestinal damage.  Not sure I would want to do that (I did, but I did not do it knowingly!)  

[Irene Joanne]

20 hours ago, hagedorns1018 said:

Irene, does your doctors' believing you change how they care for you? I'm just curious because since I was diagnosed with immunodeficiency last fall (which took 20 of my 29 years to finally get diagnosed!), it really hasn't changed the care I receive (other than being on IgG infusions). I'm not sure how confirming a dx of Celiac would change how they would care for me. I think if I feel better, and especially if I can get my iron level to go up instead of keep dropping, that would be enough confirmation for me. If, however, I am still having issues after 6 months gluten-free, I would definitely consider scoping and biopsy--especially because of the celiac-like issues you can have with CVID.  

Yes, I honestly think I have received better medical care because of an official diagnose. This may depend some on where a person lives. I live in Canada and waits to see specialists are incredibly long. It seems like because of my celiac diagnose- I've gotten in a lot sooner than most people....plus I am taken seriously. In Canada you don't just choose to see a specialist- you first need to convince a family doctor to refer you....then sometimes wait a year or more for an appointment. BUT if I hadn't had the biopsy ( I almost didn't because the gastrologist said he was 90% sure I had celiac and it was up to me if I had the biopsy) I would never do the gluten challenge. I get way too sick now if I'm exposed to just a trace of gluten. 

[hagedorns1018]

19 minutes ago, Irene Joanne said:

Yes, I honestly think I have received better medical care because of an official diagnose. This may depend some on where a person lives. I live in Canada and waits to see specialists are incredibly long. It seems like because of my celiac diagnose- I've gotten in a lot sooner than most people....plus I am taken seriously. In Canada you don't just choose to see a specialist- you first need to convince a family doctor to refer you....then sometimes wait a year or more for an appointment. BUT if I hadn't had the biopsy ( I almost didn't because the gastrologist said he was 90% sure I had celiac and it was up to me if I had the biopsy) I would never do the gluten challenge. I get way too sick now if I'm exposed to just a trace of gluten. 

Ahh, that makes sense. Here (U.S.) if I tell my doctor I think I have celiac disease and this is why... and he doesn't respect my subjective diagnosis, I would go to a different doctor. I diagnosed my CVID by telling the doctor which tests to order!

I certainly do not want celiac disease... it is a VERY restrictive diet and can easily impact social activities, but I do want to feel better (not having accidents out in public would be good, too). I'm purging my house today and have bone broth simmering in a crock pot. I'm ready to start this experiment! Aside from feeling better, I am curious if there will be any positive change in my immunoglobulin levels. 

[hagedorns1018]

13 hours ago, cyclinglady said:

My hubby went gluten free 15 years ago per the poor advice (based on what we know today) from my allergist and his GP.  He did it.  Took about a year to really get the diet down and to have the determination to stick with it.  It worked!  But now he refuses to do a gluten challenge.  Getting "glutened" has made him very ill for at least a week.  But he'd be the first to say that I have had more support with my celiac disease diagnosis (three years ago) from medical, family and friends.  My doctors are quick to give me a bone scan, test for deficiencies, etc. as it relates to celiac disease.  If by chance I live long enough to be in a nursing home, or I get sentenced to prison, I have some protection (I hope!).  It has also allowed my family members to get tested.  Hopefully, this will prevent them for going years un-diagnosed,  since this is a genetic disorder that is triggered by some environmental factor.  

Only you can decide what is best for you.  I have no knowledge about CVID so I can not comment on it.  Heck, I don't know your full medical history and I am not a doctor.  I can only share in your frustration with the medical field.  It is a shame that the only way to get a celiac disease diagnosis is by causing severe intestinal damage.  Not sure I would want to do that (I did, but I did not do it knowingly!)  

It really is frustrating! It took 20 years to get a diagnosis of CVID, and now that I have it, the doctors don't want to help me be proactive with my health. Diarrhea with malabsorption affects over 50% of the people with CVID yet I can't get a doctor to address my iron deficiency. The doctor who ordered the Celiac Panel was the closest I could get but then he didn't take into account my low immunoglobulin levels. My search for a doctor will have to continue!

Best wishes!