IgA Deficiency Support Group

Hi my son of 6 years old has been goiing through this ordeal since birth have not vanccinated him because of certain substances that I believe is to much to handle and have put him on a gluten free diet because of his atopic excema. Also allergic to peniclillin and elma and lidocaine trying to find link between all these substances and selctive IgA deficiency. because of diet has never had any respiratory problems anymore only if MSG or other preservatives are entering his system still on a discovery road so any help is welcome.
Any body come accross some good reliable tests regarding drug toxins and selective IgA deficiency disorders???

Jackie

hi--nice to find friends... this is scarey for me... i would love to know your Dr's name...also does anyone have any documentation-- from a naturopath or the like -- my Dr does not believe--i am new --and newly diagnossed and told there was nothing i can do but live with this...( if i live) ii am a believer and know there is serious help to improve this immunity...any on find that the level can be raised?? thanks ..i am going to really research!

Hi, very interesting thread. I am IgA deficient as well as (progressively, low in IgG (overall), and totally deficient in IgG4 (low in other subclasses) and IgE (serum). It looks like I am progressing to, if not there already, CVID. My question relates to your treatments and whether or not they are helpful to people (like me) that have anti-IgA antibody? I recently started seeing a naturopath and she indicated that the usual treatments to support immune function are geared toward people that are low in IgA or deficient without the anti-IgA antibody; and, that having the anti-IgA antibody requires a different approach. Does anyone else on this thread have thoughts?

Hello everyone. I've been away from this forum for a long time. I think the main reason is because I have been healthy for quite a while now and I don't have to dwell on my deficiency anymore. I've learned a lot more over the last couple years by trying new natural remedies and staying with the ones that work (or ditching those that made me feel worse). Well I can simply say that I've found what works for me and I've done a ton of research on this topic. I suggest that anyone with selective IgA deficiency try this method for a while and see how they feel. I live in Seattle so my naturopathic doctor tested me for Vitamin D deficiency. Turns out I was quite low which is not uncommon at this high latitude - especially in the winter (that is October thru May in Seattle). Anyway I started taking 1000iu of Vitamin D3 per day and it wasn't enough. So I tried 2000iu and it still wasn't up to the recommended levels. So I upped it to 5000iu per day and it got me up to the range that most medical literature said was normal. I got better but was still getting sick once in a while (needing antibiotics to get rid of sinus or chest infections) and I generally still felt congested even when not "sick." So I started taking 10,000iu (yes 10k) per day - 5000 in the morning and 5000 in the evening. I felt much better after a while so it clearly was working. I did a ton of research online (and I suggest you do the same) and found some new documents that explained that the old knowledge about Vitamin D was wrong and that it takes A LOT of Vit D for A LONG TIME to get too much. Anyway, I started to feel sick a few times even when taking 10,000iu so I bumped it to one 10,000 pill morning and night for a total of 20,000iu daily and my body fought off even a few nasty bouts of chest congestion. I never could have done that before - and I hate taking antibiotics. So most of the time in the non-sunny months I take 10,000iu per day and if I feel something coming on I will take 20,000iu per day until it goes away. In the summer and when I can get some natural Vitamin D from sun exposure I take 5000iu per day. I still keep benzonatate around to help stop chest congestion from getting worse when it starts. But overall my life is back to normal and I don't think much about getting sick anymore. The pills I'm taking now are made by Superior Source and they make instant dissolve tablets in 5,000 and 10,000iu. Everyone seems to get symptoms of IgA deficiency differently so do your own research and let us know what you find out. Keep in mind that if you ask a regular medical doctor they will tell you that much Vitamin D is too much (then they'll tell you that there is no way to treat IgA deficiency). Bottom line is that this works for me and you should consider it too.

Best,
-Bryce

Thanks Bryce, good to hear you are feeling really great!

Has anyone heard of a company from Japan that has a supplement for this condition?? I took it several years ago and it helped but lost info.
Mary

I honor you Bryce for sharing so much detailed information about your naturapathic approach to staying healthy with IgA deficiency. There are two things I strongly agree with that you said, to find natural ways to build my immune system to stave off sinus infections and to do the research on yourself to find out what works for you. I would love to see more people post about what is working for them.

For myself, I was so wasted by the sinus infections and the intense headaches that they gave me, I have not been able to do much research or testing of natural products to help me. I use a Neti Pot most every day and sometimes 2 or 3 times when I get extra congestion, I use ice packs on my face to reduce the pain and pressure, I recently started taking vitamin D3 and B12.

I was only diagnosed with selective IgA deficiency after I went to a alergist/immunologist with the treatment I came up with to help my headaches which is shaving a powder form of antibiotic off of a antibiotic capsule and snorting it into my sinuses. This treatment changed my life and brought back many more "normal" days for me. My GP doctor is working with a pharmacist to create a compounded perscription nasal spray that includes a mucus reducer and 3 types of antibiotics.

I get the feeling that IgA deficiency has not been common enough for there to be a lot of research on different ways to help us deal with it. I hope all of you keep sharing what you have come up with that works for you so it will give me and others new ideas for ways to approach our treatment. I encourage those of you who are new to this diagnosis to hang in there and not lose hope. Many of us have gotten much better after trying some new things such as Bryce has suggested.