Does anyone else have CVID?

Posted by runnergirl @runnergirl, May 21 8:39am

Has anyone here in the group who has idiopathic small fiber neuropathy also been diagnosed with Common Variable Immunodeficiency (CVID)?

Interested in more discussions like this? Go to the Neuropathy group.

@katrina123, @xfirerose, @ldestella, @zebraclaire97, @lkel and @lisa53 have posted in other discussions about CVID but I'm not sure if they also have neuropathy symptoms. Hopefully they can join the discussion and share their experiences.

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I was diagnosed with small fiber neuropathy.
My neurologist said either my celiac disease or the CVID can cause neuropathy. She wasn't sure which had caused it. (If you have CVID and the gene for celiac disease you are likely to have both, so I figure I was doomed either way.) My neurologist wanted me to start on IVIG (I was not so low that they could put me on IVIG for CVID yet). They have to put you on a higher dose for neuropathy than you are put on for CVID. Anyway, I decided to see if my symptoms would respond to a gluten-free diet and they did. I was entirely in remission until I was vaccinated for COVID when they flared back up in a monstrous way (I keep winning the jackpot). They are thankfully, flared back down somewhat but no booster for me.
Anyway, CVID does cause neuropathy for some, but not all. That is what the V stands for, "variable".
You may want to be tested for celiac disease while you are at it. Oddly, most doctors do not think to test for this. About 30% of us carry the gene for celiac disease and where you have CVID (which is likely to trigger it), it is worth ruling out, in my opinion.
If you do have neuropathy and celiac disease you are much more sensitive to gluten. They thought, at one point, that I had refractory celiac disease because I was not improved on a gluten-free diet. One of my doctors guessed that the gluten free pizza I was eating was likely cross-contaminated and just like that my symptoms vanished. I can have gluten free pizza but it has to be "certified gluten free".
Anyway, good luck to you. I know this is overwhelming.

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@johnbishop

@katrina123, @xfirerose, @ldestella, @zebraclaire97, @lkel and @lisa53 have posted in other discussions about CVID but I'm not sure if they also have neuropathy symptoms. Hopefully they can join the discussion and share their experiences.

Jump to this post

Thanks, John.
I'm finding bits and pieces of more recent research on CVID and SFN…

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@lisa53

I was diagnosed with small fiber neuropathy.
My neurologist said either my celiac disease or the CVID can cause neuropathy. She wasn't sure which had caused it. (If you have CVID and the gene for celiac disease you are likely to have both, so I figure I was doomed either way.) My neurologist wanted me to start on IVIG (I was not so low that they could put me on IVIG for CVID yet). They have to put you on a higher dose for neuropathy than you are put on for CVID. Anyway, I decided to see if my symptoms would respond to a gluten-free diet and they did. I was entirely in remission until I was vaccinated for COVID when they flared back up in a monstrous way (I keep winning the jackpot). They are thankfully, flared back down somewhat but no booster for me.
Anyway, CVID does cause neuropathy for some, but not all. That is what the V stands for, "variable".
You may want to be tested for celiac disease while you are at it. Oddly, most doctors do not think to test for this. About 30% of us carry the gene for celiac disease and where you have CVID (which is likely to trigger it), it is worth ruling out, in my opinion.
If you do have neuropathy and celiac disease you are much more sensitive to gluten. They thought, at one point, that I had refractory celiac disease because I was not improved on a gluten-free diet. One of my doctors guessed that the gluten free pizza I was eating was likely cross-contaminated and just like that my symptoms vanished. I can have gluten free pizza but it has to be "certified gluten free".
Anyway, good luck to you. I know this is overwhelming.

Jump to this post

Thanks, @lisa53 – seems we've been on a similar path.

I stopped gluten/dairy and many other food groups years ago, not even knowing my GI symptoms were also CVID-related. My migraines have thankfully stopped, but the SFN still continues – and, it's progressing. (I've had it for over 15+ years now.) I was tested for celiac and it was negative. I've had a lot of genetic testing done lately and nothing about celiac disease.

My docs were able to get approval for a higher dose of IVIG, but still only about half of what Dr. Oaklander recommended. I was on it for about a year. Not sure I noticed much difference. I'm at the point where I might go back on it, to see if there's any improvement.

Hoping more research comes about with the CVID condition as it seems there are many non-infectious symptoms that accompany it.

Thanks again for joining the conversation.

REPLY
@runnergirl

Thanks, @lisa53 – seems we've been on a similar path.

I stopped gluten/dairy and many other food groups years ago, not even knowing my GI symptoms were also CVID-related. My migraines have thankfully stopped, but the SFN still continues – and, it's progressing. (I've had it for over 15+ years now.) I was tested for celiac and it was negative. I've had a lot of genetic testing done lately and nothing about celiac disease.

My docs were able to get approval for a higher dose of IVIG, but still only about half of what Dr. Oaklander recommended. I was on it for about a year. Not sure I noticed much difference. I'm at the point where I might go back on it, to see if there's any improvement.

Hoping more research comes about with the CVID condition as it seems there are many non-infectious symptoms that accompany it.

Thanks again for joining the conversation.

Jump to this post

Have you been tested for diabetes? Just a thought. That runs in my family and it causes neuropathy in some patients. I think it is the most common cause of the type of neuropathy that I was diagnosed with.
Sometimes, doctors will miss common things when they know you have a rare genetic disease. That has been my experience anyway.
They missed my vitamin deficiencies, asthma, and anemia for well over a year – despite a history of those in my chart. They also thought my back problem was some rare, strange, type that usually occurs in men. Anyway, once they sorted all that out, I was much improved.
I have come to understand that my medical situation is complicated. I no longer feel angry when something gets missed. I have learned to advocate for myself. I am grateful for the doctors who view me not as their worst case scenario (patients that they can not cure -but only manage -are not what they envision, I am sure, when they go to medical school – and that some of us simply stump them, has to be ego-deflating) but as an interesting case. Those doctors become a partner and can be enormously supportive. I have learned, also, not to give up, that the next doctor or specialist may know exactly how to help you. Like my PC who "guessed" that the GF pizza was cross-contaminated. She changed my life. Or, the doctor who thought to test my immune system to begin with. I owe a great deal to those doctors who listened, who went the extra mile. I try to bear in mind that the doctors who fail me might just be a hero to someone else. So, above all else I remain kind. I try to help other patients too, when I can. I know full well that very many of us have no one left in their corner – so many friends and family just can't hang. It is a lot. It is a lot for me some days. I am glad I could help.
Anyway, good luck to you.

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I have CVID and have some symptoms of idiopathic small fiber neuropathy. I have several severe issues from CVID that my Immunologist is working on at this time, so haven't dealt with neuropathy issues yet.

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