Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Northernelf 09/27/2013

On a posting roll...
I was curious how may of us have an issue with gluten. The article I posted and others mentioned celiac like symptoms and even intestinal damage in CVID folks...not calling it celiac. I read something this morning saying that maybe 20% of CVID folks in a study had any improvement with going gluten free.

My story - 12 years ago I had a WICKED stomach virus. For a week I couldn't keep a thing in, lost five pounds I didn't have to lose & ended up in the hospital getting IV fluids and a shot to stop my stomach from spasming. Sounds dramatic, but I wanted to die - a couple of days of flu like symptoms is one thing but a week...I remember lying in bed in the dark my empty stomach churning...brutal. It took me a year to figure out I needed to avoid gluten & I do so religiously. My family has it's bread products on a cart in the kitchen - the rest of it is gluten free. I have my own bakeware, condiments, etc. A little gluten makes me quite sick.

FWIW, I was tested with bloodwork as I cut it out (negative though false negatives are common) and by the time I had a endoscope I had been strictly gluten free for 3 months (mostly gluten free before that) - which makes the test pretty usesless. Top it off that we don't make antibodies the same as everybody else - I don't have a celiac diagnosis but at this point, it makes me so sick, whatever !

I know autoimmune stuff & CVID can be related...so do tell - anyone else there living like a celiac ? Anyone actually have a celiac diagnosis?

zenaby 09/27/2013

I was diagnosed with Celiac disease. I know what you mean about wanting to die. In May I was hospitalized and given antibiotics, fluids and had endoscopy where multiple biopsies were done. I've been hospitalized before and have had multiple bouts of that kind of hell a few times too many. Now some people I talk with about CVID in another place tell me I am not Celiac because they say its rare with CVID. Regardless, I have been gluten free since then. Not one bit of gluten and everything has settled down. Still following up on it. Both my immunologist and gastrointerologist are communicating about the CVID and Celiac so that works for me.

countr 09/27/2013

Yes, was diagnosed with celiac disease and going gluten free has helped me greatly. My daughter, two grandchildren, my brother, neice and nephew have now also been diagnosed with celiac. I did a genetic test after my diagnosis, that showed both of my parents have the active gene. That led many in my family also going thru tests and being diagnosed. Every family member that has went gluten free has also felt better. I did read recently that possibly one in every ten people that have cvid may have celiac, or a gluten sensitivity. I follow a strict gluten free diet. I have went thru further testing and eliminated all dairy, corn, soy, and eggs. My immuno and gi Dr were amazed at the difference in my health after going gluten free. My gi Dr was so amazed he went on a gluten free diet himself.

deleted_user 09/27/2013

Hey All :)

Before I got DX'd with CVID I had C-Diff for a year, and now have some permanent damage-prior to DX I had labs and Biopsies that tested negative for Clieac Disease.

I went gluten free for a long time, but noticed no difference. Today, I do not eat processed food, there is very little gluten in my diet, and there are very few foods I can digest. I RARELY can make my own bread using wheat flour, ground flax, and oats, and eat that with no problems, but I have been recently introduced to pecan flour which is great..

There is no doubt in the CVID scientific community that GI problems are more common in CVID patients than once thought, but there is some debate on if a disease that mimics Celiac Disease is being mistakenly DX as Celiacs. Here's an abstract from PubMed that also mentions some of the genetic testing Countr mentioned.

http://www.ncbi.nlm.nih.gov/pubmed/23609110

In my opinion, I don't really care what they call my stomach problem if they call it Celiacs and going Gluten Free does the trick than so be it! I think the only main concern in this abstract and some others I read is that once Dx'd Dr's may stop looking for GI issues, especially since you are feeling better. So, diseases that mimic Celiacs may still be lurking in the battleground going un diagnosed and in the long run, that could do some harm.

CVID...emphasis on the V
Goodness!

Cheers to good health and pain free stomachs :)

deleted_user 09/30/2013

I asked my husband 3 yearsago if I had ever felt good? He said you felt pretty good that year ( 20 yrs before) that you were wheat free. That was the last day I ate any gluten except for 2 cheat meals that made me sooooo sick with flulike symptoms for 7-10 days that I am extrememly strict and convinced that gluten is a HUGE issue for me. The only way to prove celiac is to eat it again for weeks.....so NO WAY! I don't need a diagnosis to tell me what I already know.

VTLight 09/30/2013

Some of my first symptoms that something was wrong were random bouts of stomach issues often taking a week to keep food in. I've had chronic pain/inflammation of my small intestine/abdomen for a couple years. I went strictly gf two years ago and that helped considerably. Last year I had gi biopsy and ate wheat 3 weeks prior (and become progressively sicker and in more pain. I was later told months on a gluten diet would be required to be conclusive), my results should an infiltration of lymphocytes and changes that could be associated with celiacs. My blood test had been negative and recent genetic test was negative. Since then I have also developed sensitivity to other foods including dairy and fish/seafood. Any of these cause belly pain and bloating, fatigue, headaches and lymph node pain. Following a strict diet free from my triggers as well as avoiding food that may be a bacteria breeding ground has decreased the number of times I'm out of commission.

MissSophie 10/03/2013

LuLu,
Good article....

Like you the c-diff really has mess the GI track something miserable. I am still on the vanco and will be on it they say the rest of my life since the vanco keeps it bay, it doesn't kill all of the darn c-diff cells in me..

Was on gluten free diet for over a year felt pretty good, but since the start of c-diff all I am able to really stomach is starchy foods...Hope to get back to eating vegetables again in the near future. Had a bite of tomato on the weekend and ended up having horrible stomach spasms, so guess I'm not there yet..I can eat vegetables like mashed potatoes & pureed yams or butternut squash, pureed pumpkin and mashed bananas but thats it... Wonder if I just cook & puree everything....Oh well I might just try that, it is getting to be soup season..

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