IgA Deficiency?

[extremeelle]

Hi, I'm new to the group and am so glad to have found you! After dealing with MC symptoms for 20 yrs (since my mid 20s), I finally got a diagnosis of collagenous colitis in January 2017. As maybe only people on this forum can relate, I have been in some crazy situations (like being stuck in my drysuit on the boat or wetsuit underwater with friends or co-workers, embarrassing accidents while running marathons/trail races without bathrooms or just everyday training runs/swims with friends...and on and on). Of all the situations I continue to put myself in so that I can keep living life to its fullest, it took not being able to care for my infant without accidents or holding him in the bathroom for me to finally seek help! I'm lucky in that I got a diagnosis after my first colonoscopy (all biopsies were positive for CC), however my initial GI appointment did not go well and I couldn't find answers via my internist, GI doctor, or allergists to what I thought were basic questions relating to food intolerances. These included "could this be caused by a food intolerance and if so how do I find out which food(s) and "you prescribed budesonide (which I filled and never took), but is this really addressing the underlying problem - won't the symptoms be back as soon as I stop taking the prescription?" My internist has been most helpful and ordered IgA, IgG, and IgM tests (not sure what the IgM is for). The allergist only did skin tests (which were all negative) and when I asked him about the connection between allergic rxns to skin tests vs food intolerances in my digestive system, I hit another brick wall. Recent B12 and iron deficiency questions from my much-loved chiropractor finally put me back on track and led me to the Wayne Persky books and this forum. I have a second GI appointment coming up next week (with a different doctor) and have several specific questions to post prior to going. But for now, I have a couple of burning questions that I feel may help me better present my other questions to the group.

I would like to have the Enterolab tests done (from previous posts it looks like the A1+C1 panel is the most widely requested from forum members). It would be great if I could get insurance to cover a portion. I asked my internist if there was any way for them to order the test and run it as well through her office. She looked at the printout of the lab that I gave her and said that she wasn't familiar with them and the subject died. I'd like to bring it up next week to my GI doctor as well, but wanted input from the group regarding two things.

1. Am I one of those 1:500 that are IgA deficient? I asked my internist, but her response was confusing as she was saying my IgA levels were low as if it were a good thing, not necessarily as it being problematic for IgA testing when I know that I have intolerances. Dec 2016 IgA results:60 mg/dL (range: 81-463) This was pre-diagnosis (right before my colonoscopy) and I had a gut feeling that something I was eating like soy and/or gluten may be an instigator so I stopped eating these a couple weeks prior to doctors visit/bloodwork. I kept soy out of my diet, but I started eating gluten again right away thinking that it was a soy trigger and bc I just didn't know then what I know now. September 2018 IgA results: 70 mg/dL (same range as above, 81-463), IgG: 1,075 mg/dL (range: 694-1,618 mg/dL), and IgM results: 187 mg/dL (range: 48 - 271 mg/dL). For the 2018 bloodwork I was on a complete elimination diet for about 7 weeks prior to testing - no soy, dairy, eggs, gluten, nightshades, raw fruit/veggies, no skins, etc. following the "To the Chef" dos/don't for what I can eat near the end of Wayne Persky's book. I realize from the books and posts that blood tests aren't accurate, but I wanted perspective regarding whether or not the Enterolab panels would even be an option for me based on these IgA results. As other posts suggest, now that I've eliminated potential trigger foods for nearly two months, time is of the essence for Enterolab testing.

2. Has anyone been able to get their doctor's office to order the Enterolab tests? If so, any advice on this front would be appreciated.

Extra notes: I haven't had 23&Me work done, but I bought this kit for my dad partly bc his allergist told him that his terrible allergy issues stem from an intolerance to gluten in his gut. His sinuses were connected to his digestive tract and that until he addressed that issue, his allergies probably wouldn't go away. His 23&me results showed an increased risk of celiac disease bc presence of the HLA-DQA1 gene (HLA-DQ2.5). He is not a carrier for HLA-DQ8. My mom is not a carrier for either. He has similar symptoms as me, knows my diagnosis, and is planning to ask that the biopsies also be taken during his upcoming colonoscopy. I'm afraid he has mast cell issues per the sinus info above and would need an initial tryptase stain. He also told me last week that my grandma on his side was diagnosed with colitis when younger. Aaaah, it sure would have been nice to know these things 20 years ago - especially when I was on a nearly 15-year vegetarian or vegan diet eating all sorts of irritating, if not also intolerant, foods. My satellite issues include recurring mouth sores (averaging about monthly) suggesting that maybe I have some mast cell issues as well - a topic for another search/post.

Thanks in advance for any insight you can provide!

[tex]

Hi,

Responses are usually sparse on weekends because most members are busy with various projects, so I'll try to answer your questions. Maybe your internist is aware of something that I'm not, but as far as I know, selective IgA deficiency doesn't have any specific advantages.

Dec 2016 IgA results:60 mg/dL (range: 81-463) This was pre-diagnosis (right before my colonoscopy) and I had a gut feeling that something I was eating like soy and/or gluten may be an instigator so I stopped eating these a couple weeks prior to doctors visit/bloodwork. I kept soy out of my diet, but I started eating gluten again right away thinking that it was a soy trigger and bc I just didn't know then what I know now. September 2018 IgA results: 70 mg/dL (same range as above, 81-463), IgG: 1,075 mg/dL (range: 694-1,618 mg/dL), and IgM results: 187 mg/dL (range: 48 - 271 mg/dL).

Are you referring to your normal production level for these Immunoglobulins, or are these Immunoglobulin levels for specific antibodies? And are they from blood tests, skin tests, or something else? It appears that they are blood test results from normal testing for selective IgA deficiency. If they are, yes, your results suggest that you are slightly IgA deficient. But because they are only slightly below the normal range, it's still possible that the EnteroLab tests might give you valid results (if you have been reacting for more than a year or so, or if for any other reason you IgA production against specific antibodies is high enough to trigger a positive test result). Whether that would actually occur in an EneroLab test is debatable. Yes you might get some positive results, and all positive results would be valid. But because of your reduced IgA production capability, you might also receive some false negatives. IOW, the tests might miss flagging some foods that do cause you to react (especially if you have been avoiding these foods with your diet). But at those IgA levels, I doubt that the tests would miss many. Other factors will probably be more important, such as avoiding certain foods, use of corticosteroids, etc. You don't need to be eating gluten. It will test positive as long as you haven't been avoiding it for much more than about two years, because it's a very powerful antigen. Anti-gliadin antibodies have a half-life of 122 days, whereas antibodies from most foods have a half-life of only five or six days. All that said, no one can predict whether or not all the EnteroLab tests will be absolutely reliable, because there are too many factors involved in situations such as yours.

Yes, a few members have been successful in getting their doctor to order these test, but most have not. Enterolab was one of the first labs to offer their services directly to patients, which doctors really resented (at least back then, two decades ago) and the members of the "old guard" in the medical community know how to hold onto a grudge. Insurance coverage is much more likely/easier if your doctor will order the test for you, but the next best option is to call the lab and ask them for the insurance codes. Using the codes, you can then call your insurance company and ask if they will cover the tests specified by those codes. Many (though not all) will at least partially reimburse a policy holder for the tests. While you are asking the lab for the codes, you might get their opinion on the degree of reliability for the tests based on your normal IgA production levels. I have a hunch the A1 panel results might be more reliable than the C1 panel test results, but that's just a guess.

In general celiac disease requires the presence of either the HLA-DQ2 or HLA-DQ8 gene. But gluten sensitivity (non-celiac) is possible with any gene except HLA-DQ4 (based on Dr.Fine's earlier research). And the incidence of the HLA-DQ4 gene is relatively uncommon. The bottom line is that only a very small percentage of the general population is truly exempt from the possibility of developing gluten sensitivity. Mouth sores are very common among MC patients when the disease is active.

I hope this helps.

Tex

[extremeelle]

Thanks for taking time to respond, Tex. These results are normal production levels as detected via blood tests, not for specific antibodies. I'll inquire with Enterolab on Monday regarding insurance codes and my general IgA levels detected via recent blood tests. I wanted to speak to someone there anyhow so now I have a few good questions to start the conversation off with.