IgA deficiency

[Kentaro]

Do anyone of you have IgA deficiency?

[Gibbogibronx]

Can you explain what an igA defiency is ? Thank you

[EOLHPC in reply to Gibbogibronx]

Hi gibbogibronx

I wondered too that too, because although i know IgA deficiency is a Primary Immunodeficiency (because i have below normal IgA combined with IgG & M deficiency) i wasn’t aware there was a specific IgA deficiency illness... so i found this info on the PID UK website:

piduk.org/specificpidcondit...

So, now i know IgA deficiency on its own is a specific condition called “selective immunoglobulin A deficiency”....Here is the PID UK summary from the above link...this info does relate to my type of IgA deficiency because i am diagnosed with several autoimmune conditions (systemic lupus, sjogrens, small vessel vasculitis + others)

Selective immunoglobulin A deficiency (sIgAD) is the most common of the primary antibody deficiencies, affecting about 1 in 600 people. It is not usually associated with bacterial infections but may be associated with autoimmune or allergic diseases. The genetic causes of sIgAD are unclear. People affected have very low or absent levels of one type of antibody, called immunoglobulin A (IgA), but produce protective antibodies of the other types of immunoglobulin (IgG and IgM). This may be why many people with sIgAD may appear healthy.

IgA works to protect body surfaces that come into contact with outside organisms, such as the respiratory tract and gut, so if someone has infections, these are the most common sites of infection. Such individuals may have a partial IgG deficiency despite apparently normal IgG levels in the blood, and so should be investigated in an immunology clinic.

People with IgA deficiency may have allergies (e.g. allergic asthma) or an increased tendency to develop autoimmune conditions, where the immune sytem attacks itself, and this may result in conditions such as coeliac disease, which affects about 10 per cent of IgA-deficient patients. No specific treatment is required for sIgAD. Infections should be treated promptly with antibiotics.

This page was reviewed by the Medical Advisory Panel April 2013. Revised May 2015.

[Kentaro in reply to Gibbogibronx]

Hi,

Although Barnclown already answered your question. But in short, IgA deficiency is when you have low levels of IgA.

IgA is a type of antibody that protects against the mucous membranes of the mouth, airways, and digestive tract.

So if you have IgA deficiency you have great chance to have bacterial overgrowth, candida, etc ...

[Gibbogibronx in reply to Gibbogibronx]

Thank you

[EOLHPC]

Hello kentaro

my version of IgA deficiency is accompanied by IgG & M deficiencies., so my diagnosis is hypogammaglobulinaemia, which is a type of Primary Immunodeficiency (PID) called a Common Variable Immunodeficiency (CVID)

I attend immunology clinic regularly. And my treatment plan is daily antibiotics indefinitely. I will go on IVIG if i have breakthrough infections. Daily antibiotics do damped down my slow transit dysmotility bowel bacteria overflow-related gastritis (and also my chronic sinusitis + chronic respiratory and urinary tract infections)

I am sure my low Igs are involved in causing my chronic mouth to a**s gastro issues

Hope something in there is helpful

🍀🍀🍀🍀 coco

[Kentaro in reply to EOLHPC]

Hi,

Thanks for your reply.

I only have low level of IgA so I can't get IVIG.

I was just wondering how many of us has IBS issues connected to low level of IgA.

Because nobody speaks about it but this can be one of the cause of IBS.

[EOLHPC in reply to Kentaro]

You’re welcome. I’m v glad you posted. It’s good to meet you, although i wish we didn’t have low immunoglobulins

I suspect vvvvvv few people here have any sort of immunoglobulin deficiency...but this may be partly because the nhs hasn’t actually tested their immunoglobulin levels. i have mentioned my immunoglobulin deficiencies several times here but no one has ever shown any knowledge of this sort of thing. and you are the first person who has posted about this since i joined the forum a few years ago

My gastroenterology & immunology & rheumatology medics say i have IBS-like signs & symptoms caused by my underlying comorbidities including my immunoglobulin deficiency. So, they say i don’t even actually have true IBS. I also have systemic lupus + sjogrens & several other illnesses

Does gastroenterology say you have true IBS? What does immunology think?

[Kentaro in reply to EOLHPC]

I wish too but there is nothing we can do about it. I agree that most people doesn't know about this. I saw some IgA topics in ibsgroup.org just they are old ones.

Sorry to hear you also have several issues apart from IBS.

My IgA problem is known since I was 2 years old so this is not new for me. Although I never really thought it can be the main reason to my gut issue until recently.

Doctors never associated my immune issues with my "IBS". So they didn't tell it's not true.

Actually doctors don't tell me I have IBS at all. They know they cannot shake me off with a diagnosis like that.

But at the moment I don't see any doctors as I was discharged from everywhere. Gastroenterology, immunology, endocrinology ... you name it.

They did every possible tests but there is no explanation to my symptoms.

What are your IBS symptoms?

[EOLHPC in reply to Kentaro]

So your IgA deficiency was identified very very early.

I hope these clinics kept you in care long enough to at least help you figure out a good plan for managing your condition.

I guess now you & your GP decide when something is so severe or persistent that you need referral to whatever clinic is appropriate

Well, i’m glad yoir medics didn’t try to tell you something like “this is plain IBS” .

My gastro issues began in childhood and have always affected my whole GI tract from mouth to a**s. The 2 main overall probs are hyperreactivity (mainly to fruit, veg, whole grain fibre + resistant starch) and slow transit dysmotility...now with pseudo obstruction intestinal insufficiency segueing into intestinal failure

I mostly lifestyle managed all my life via conscientious high fibre Low FODMAP exclusion diet...gradually i had to excluded increasing types of fruit & veg. Now i cannot eat any fruit veg except a bit of perled potatoes, white rice & pasta. But, in the past, have spent years on prescription PPIs & domperidone.

Gastroenterology now believes my condition is shifting into intestinal failure, which we must avoid because my Hyoermobile Ehlers Danlos puts me at high risk of needing parenteral/enteral feeding and my Ig deficiencies make me at high risk of the infections that tube-fed patents get

My GI signs & symptoms affect me mouth to a**s and feature inflammation all the way through. My upper GI stuff was diagnosed easily: dysphagea, oesophagiti, gastritis, duodenitis, gastroparesis. The lower GI stuff began to be diagnosed easily (eg vvvvv early inset bleeding prolapsing strangulated piles needed an early emergency haemorrhoidectomy), but the intestinal insufficiency has been harder for medics to figure out (it involves all the usual IBS-C-like symptoms: pain, bloating, distension, frequency, urgency, wind etc etc etc but colonoscopies find nothing sinister, ie no cancer, no obvious IBD).

Well, thank goodness, now we know my lower GI stuff IS inflammatory because it damps down in response to my daily lupus meds and especially responds v positively to increasing my daily prednisolone dose.

I could go on & on, but i think you’ll have had enough by now! The multidiscipline team i’m under has finally put together a 4 part daily treatment plan which is helping a lot and will hopefully keep my nutrition ok while preventing obstipation. We’re now on wait & see, while i continue to attend all my clinics regularly.

What are your GI symptoms? How old are you now? What is your “usual” IgA level?

I’m 64. My IgA is .34 at the mo, and is always the lowest of my 3 low Igs. My health history indicates low IgG,A,M became chronic very early in life

Have you joined this Facebook group: UK PID Patients? It’s a “closed group” and i think it’s really good! I haven’t noticed anyone with specific IgA deficiency, but you could post a question. They do discuss probs with various body systems...eg recently there were questions about diarrhea, eyes and the urinary tract. members are mostly on IVIG & subcut Ig, but there are patients like me who aren’t

[Kentaro in reply to EOLHPC]

I see you also could write a book. I'm sure you have more knowledge than your doctors.

No, they did not help to figure out a good plan to manage my condition. I mean I believe they did their best and they genuinely tried to help.

But end of the day I still have my symptoms and I'm still out of society. And they don't care about it until you don't lose weight or show some sign that your condition is worsening.

I'm 35 now. My IgA level generally around 0.03. It's good if it's more than 0.1. (I have never received any treatment to it.)

My main issue is the chronic diarrhea with urgency and abdominal pain. Even the diet can't control it. Just make it more bearable. I literally spend hours on the toilet every day if I want to go somewhere but it still can come anytime. (Not to mention the bloating, indigestion, fatigue, brain fog, etc...)

I haven't joined that group as I don't have PID. I have secondary IgA deficiency. But I will check it out.

Could you live a "normal" life with your condition?

[EOLHPC in reply to Kentaro]

i’m glad to meet you, kentaro, but very sorry about all this health stuff. It is extremely hard to endure. You’re right: i could write a book!

What helps me most to stick it all out is : a few real friends + feeling i roughly understand why i’ve had to manage all this all my life (eg mainly my version of all this is probably mainly due to my conditions being rare & unusual, so science has had to advance before it could help me, and by then my multisystem debilitation was so advanced and choronic that i was housebound & sleeping a lot (my issues are probably mainly due to familial Hypermobile Ehlers Danlos Syndrome & mast Cell Disorder + months of daily inutero exposure to the notorious endocrine disrupting artificial estrogen diethylstilboesterol (DES) the same drug the authorities gave poor Alan Turing)

Oddly enough, in 2011 i FINALLY hit a BIG turning point...now, 7 years & A LOT of work later, am in less pain and more functional than i’ve been since my teens...am less housebound + living a relatively more normal life in retirement (in 2011 a very very clever NHS prof rheumatologist at a huge university hospital took my case on and made sure i also attended immunology clinic. It was my long-time Pain Consultant who FINALLY decided i should be referred to rheumatology, but the first consultant my gp sent me to wasn’t clever enough (although he did suspect systemic lupus, which resulted in my mother revealing the infancy diagnosis secret (another long story))

After all the misguided “encouragement” i’ve had from well intentioned lay & professional folk over my decades of physical misery & depression ....i am v cynical...so i wouldn’t presume to encourage you or anyone lightly....but i can’t help remembeing how bleak things looked when i was so housebound and alienated at 35....i wish i’d known then that 2011 would be such a turning point for the better

I won’t go on, except to say that IF you’re at all curious about the multidiscipline combined therapy treatment plan that IS FINALLY helping regulate my GI issues enough to let me get out of the house a bit more, do let me know...am advised this treatment plan can be as good for IBSD patients as it is for IBSC patients (i’m happy to private message here with you, if you prefer...i CAN make this treatment plan clear & concise...you may have tried something like it already, though)

Also, for what it’s worth: there is another good closed facebook group called:

Primary & Secondary Immune Disorders

In my case immunology won’t commit to whether the hypogammaglobulinaemia is truly primary, but, for insurance purposes, they tell me to call it a CVID, so, by default, i do have a PID despite my other “primaries”...and i’ve gained quite a lot from the solidarity of other PID patients, especially that UK PID Patients facebook group

[cabigehead in reply to EOLHPC]

Interesting read. I too have CVID..low IGG and IGA. I never get "sick" . Have had IBS since age 16 (now 68). Will be seeing an immunologist. I too was wondering if there is a connection. Tried everything for IBS D. Nothing "cures" it, but Viberzi, Enteregam , and Immodium allow me to function.

[EOLHPC in reply to cabigehead]

Hello cabigehead. Do you inow your typical IgG & A levels? Are you on IVIG? Glad you’ve figured out a way to manage the gastro issues.

[cabigehead in reply to EOLHPC]

I am not on anything now as I never get sick. Going to see an immunologist next week for any suggestions or interpretations. My levels are not very low.

[EOLHPC in reply to cabigehead]

Glad you're doing so well! Good luck at immunolgy!

[Kentaro in reply to cabigehead]

Hi,

Thanks for your post. Most people doesn't have symptoms with low IgA level.

There should be a connection. But my immunologist only recommendation was to try out different probiotics. Nothing changed of course.

[Hidden]

Hi, I have IgA deficiency as well as imbalance in other Ig antibodies, in particular IgG (food intolerances). I have IBS. It's pretty bad right now as I had to take antibiotics for what was suspected to be chronic sinus infection. The antibiotics didn't help at all but I found out since that chronic inflammation often ends up causing sinus polyps preventing one from breathing properly from the nose. It's worse at night but it's starting to become difficult in the daytime as well.

I have pretty much all mucuous membranes in the body under attack, not just the GI tract. And the problem is very severe chronic inflammation that I just cannot reduce despite years of trying. Right now, I'm trying Wim Hof's breathing exercises (see on YouTube) which I find helpful to reduce pain and stress. I need to do it for a longer period to see if it produces a significant improvement.