IgA Deficiency Support Group
Selective immunoglobulin A (IgA) deficiency is a relatively mild genetic immunodeficiency. People with this deficiency lack immunoglobulin A (IgA), a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract. It is the most common of the primary antibody deficiencies.
Hey everyone,
Just wanted to see if anyone else has similar issues with being having selective IGA. I have been sick for a year now and in and out of hospitals and clinics, also been treated for everything under the sun and they still can't really figure out what is wrong. I am waiting on an immunologist appointment at the end of Janurary but with how bad it has become I need to find something to help.
Started out with stomach pains and they started to get pretty bad so I went to a clinic. They poked at me for a bit and because I have a higher stress job (now reduced to low stress as I was told it would help) and said I had an ulcer and gave me ulcer medication. Finished that and the pain got worse. They then thought I somehow no longer had the appropriate stomach lining and gave me more pills. Did nothing. Went to the hospotal multiple times they took blood and did tests and I was told every time "there is nothing medically wrong with you". Even though I had extreme stomach pain and was crying and writhing in tears and vomitting.
I was finally referred to a GI specialist as they thought I had Ulcerlative Colitis, Chrons, IBS, Inflammatory bowel disease, lupus, parasites, h pylori, bacteria, candia, celiac, tested for all foreign diseases since I travel and big NOTHING. Waited 6 months for an endoscopy and colonoscopy and they found nothing. Perfectly healthy... I had to wait 3 months for the test results as I was a low priority since there was no hard evidence and they took more blood. My Dr was convinced I was Celiac but the tests always came back negative. They then found that I make 5% of the required IGA and I am now a higher priority on the immunologist list. From what I have read there is no cure and very little support for this kind of thing but I suppose since most people do not react and I seem to be one of the few that have severe issues I am a little in the dark.
Here is how my day goes, nearly every day.
Wake up- feel great and think "okay today is going to be a good day"
Go to the bathroom and slowly my stomach starts cramping, then more, and more, until I am crying in the bathroom. Like if you were passing glass.
I then get waves of hot and cold flashes. Like I am freezing to death in a blizzard to someone dumping lava on me. This starts the cycle. Start getting warmer and warmer until I feel like I am going to erupt into flames and I start vomiting mucous and white foam (yup, like dish bubbles. The Dr's were all VERY confused by this as I do not vomit stomach contents) Once the vomiting has stopped I then feel like I have been dropped in the arctic and start shivering uncontrolably. It slowly starts to subside and I warm up only to have another extreme wave of heat. This continues for an undetermined amount of time. Some days it is 15 minutes, or 3 hours. my nose starts to run and I feel like I have a full on flu. Eyes watering as well.
I found sometimes that bundling myself up but sitting infront of the A/C helped stop the hot/cold but it was only a temp fix.
I was on a 2 hour flight and this started. The cycle kept going for 3 hours and they were ready to divert the Aircraft, worst day since I have been sick May 12th. I work in Aviation and was able to convince the crew that this is just how I am because I am sick.
Once my stomach decides it has had enough the pain slowly goes away and I am back to about 75% but with being drained of all energy and fine for most of the day.
I have gotten impetego (toddlers infection of the skin) and severe pneumonia for 3 months. I was given some hardcore antibiotics and I was doing well for a few weeks. But I am now slowly going back to how bad it was before. I have heard that cold climate is not good for people with IGA issues and I unfortunately live in a very cold area in Canada.
Medications: Oil of oregano, Anti-histamine, pro-biotic.
Any help is greatly appreciated.
XOXO
I have started to not consume anything after 7PM except water and trying to stick to plain easy foods to digest. Also small amounts of food throughout the day. Also taking a 12 hour time release advil at night to help with the pain in the mornings. It's been two days and so far I feel an improvement but I really don't want to rely on pain medication daily since it is so bad for you.
It's just so strange that everyone I speak with has completely different symptoms as I do. I don't get flu-y sick often but its a constant battle with my stomach. It's like waking up with food poisoning every day and it lasting 15 minutes to 3 hours. I have my medical marijuana card and it is the only thing that stops the extreme pain and cramping in my stomach since when it starts I can't even consume water without violently vomiting.
I'm not a big fan of my immunologist she is also an allergist and never listens to a damn thing I say. I have been trying to troubleshoot my issues because well I'm a mechanic and there has to be a root cause for the failure. This is what I think is actually happening.
IGA & IGG deficiency - Does not produce the antibodies for the mucous membranes. I think my issue is an overproduction of mucous in my stomach due to the IGA and IGG deficiency.
Your body produces mucous to protect your system when you are sick. I think my body is mass producing mucous to prevent me from getting sick. I feel fine when I wake up, but within 10 minutes of me moving around my insides start hurting like I ate glass. It would make sense that if I was over producing mucous and while I am asleep it has now settled in my stomach and digestive tract horizontally, food can still pass through my system but very slowly. But as the viscosity of mucous is much thicker than stomach contents when I stand up and start moving around, it feels like a slow motion avalanche of upset stomach. I think it is causing temporary blockages in my system and causing me to vomit mucous. I always have a full feeling in my stomach even though I barely eat. Once it has been cleared from my system I tend to get much better, If I do not get sick then it seems to be a few hours of random stomach pains for sometimes a moment to sometimes 10 minutes where I am in tears because it feels like someone is squeezing all of my insides. Think about when you have a chest cold and wake up you typically feel fine for the first 10 minutes but once you start coughing and get some of that stuff out. I guess this would be somewhat similar to cycstic fibrosis but that is when you have the over production in your lungs which I have no issues with. CT scan of the lungs came back fine and all other tests also no issues with the exception of IGA and IGG levels.
I found that taking a steroid inhaler called Alvesco helped as well as an extra strength Claratin for mucous relief. Oil of oregano also helped as it is an antibacterial but can cause an upset stomach. Also eating as little as possible unfortunately. The more food in my system the harder it is to deal with.
My daily food
1-2 cups of coffee
2 liters of water
1 BOOST extra protein meal replacement shake
1 small meal
1 bedtime snack
I also followed jeni patel thompson's IBS diet which helped calm the inflammation in my gut so that I could eat/drink again. It took about 6 months just to be able to eat solids. Looking back, I thought I was dying, and actually prayed for a quick death. The diet doesn't allow coffee (too acidic). I purchased her protein shakes by the case. They had too many carbs for my so I mixed 50% flavored + 50% unflavored. Don't forget the Oil of Oregano also kills good bacteria so supplement with top notch probiotics. Best of Luck.