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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weight gain

Does anyone else with CVID have an issue with weight GAIN! Everything I see says that weight loss is a symptom, but I didn't start gaining until I began my IVIG treatment. My immunologist seems to think there is no correlation and just says "well we all struggle with our weight :-/". He's a great doc, but I have a hard time believing this is normal. Considering all the GI trouble I have, my body can't be absorbing enough of what I eat to make me gain weight!

Replies

PrincessButtercup
PrincessButtercup

Hi Aone,

I have gained a very small amount of weight (I think), but it's hard to know whether it's from the IgG therapy or from the steroids. Also, some of the antibiotics and other meds I've been on make me feel like if I don't eat about an hour after taking them with food, that I'll vomit...so I end up eating a second time. Maybe someone else here has seen a more direct correlation than I have...
deleted_user
deleted_user

i gained 50lbs on vivaglobin in a month.
i know it was from that because in 10 years i havent gained anyweight and as soon as i stopped it i didnt gain any weight i lost it.

recently i lost 40lbs in 3 weeks from the flu and pneumonia.
right now im not on any infusion medicine
PrincessButtercup
PrincessButtercup

Oh, and welcome to the group, Aone :)
TinaMichelle
TinaMichelle

For the past few years, I was not able to get my weight above 110. Since I started on subQ IG therapy, I have gained 7 pounds. I am ravenous the day after treatment, and I notice that for a few days after treatment, I do not have as much diarrhea. So I think that, and the general inflammation I am experiencing is adding weight.

Prior to diagnosis, I lost a great deal of weight.
deleted_user
deleted_user

I have noticed that I have NOT been able to lose weight like I was able to earlier in life (when I was in my 20's and 30's). But that might just be my age (I'm 46). I am dumbfounded by this ... I exercise 4 days a week, and watch what I eat ... and basically, I just stay the same. I would love to lose 20 pounds, but it's been a challenge to say the least.
deleted_user
deleted_user

over 10 yrs a have gained a lot...in part being sick altered my activity level it has decreased and in part i am 46
the last yr when i was really sick i gained again in part to lack of activity and steroids
cvid and ivig did not make me gain weight not watching has
when you feel like crap watching your weight isnt always a priority.
i posted a pix of my husband and i on our wedding day 17 yrs most of you have seen my "today" photo i have gained a lot!
i started weight watchers last wk yesterday was weigh in and i lost 3 lbs and that is on a mega steroid pack so i know it is do able.....i will have surgery friday we will see how weigh loss goes next week.
i have always been slim until 10 yrs ago when i started having a VERY big flare the flares have gotten worse over the last 10 yrs lasting longer each time....i think the weight gain came from trying to fight to feel better and get through, weigh maintance was on the back burner.....
when i was younger and was able to maintain my weight i was battling illness raising smalll children working going to school, it was a miracle i had time to put food in my mouth!
i wish i had taken the weigh gain more seriously when it started i would not be to this weight now, i know the weight doesnt help my condition
if you are concerned i would seek a weigh loss/maintaince program you can follow....i wish i had before it got so out of control....i know weigh loss will help with some of my current symptoms
good luck hopefully i will be on the lighter side in 6mths and i will be able to relate how to maintan a healthier weight living with cvid!!!
deleted_user
deleted_user

I successfully lost alot of weight doing Weight Watchers about 8 years ago. But, in retrospect, and in trying to do it again a few years back (with WW again), I find that I am CONSTANTLY thinking about food. I don't think that's a good thing. I would like it if I never thought about food, except for when I am truly hungry. Two excellent books that I have read and would recommend are "Women, Food and God: An Unexpected Path to Almost Everything" by Geneen Roth, and "Weigh Down Diet" by Gwen Shamblin. Now, having said that, I would like you to know that I am not a religious person perse ... but I do like to think I have a spiritual side. I absolutely loved Geneen Roth's book, and I waded through Gwen Shambin's book (it contained a little more religious content than I would have preferred), but the message in both books is EXCELLENT!! And both women have truly found the key to eating healthy and staying slim!
stimpy
stimpy

Hello Aone and welcome to the group: I struggle constantly with my weight. I have CVIDS and WANT to blame it on that, but I know it is not the cause. It could be, but I don't know for sure. I had a gastric bypass in 2007 and lost 80 lbs. I have gained 20 back and everyday is a MASSIVE STRUGGLE. But......I will be 55 next month, and I am going through menapause and I am on hormone replacement and also a mood stabilizer. After I had my second child is when the weight and the CVIDS appeared. I think my body was just TIRED, and that made me gain weight. Also I had a plastic surgeon tell me weight gain is all about "hormones". When my IG levels are topped off (up to par) I feel better and I FEEL like I eat less. When I am tired I eat more. I have gone to
t he gastric bypass support group and expressed my concerns why I am gaining weight, and one woman suggested that "I get my head straight" o.k. so I analyze, journal, write down everything I eat and the calorie content and I am still hungry and miserable. My therapist who is a woman with a Phd told me to quit "overanalyzing", it is what it is. People judge you and think you are weak and slovenly, they are not in your body, t hey have no clue how your body is reacting to anything. Same with illness. I have never had the gastric issues caused from CVIDS but I CAN TOTALLY see how people could have weight issues with this. I only have the respiratory problems. You said you "gained weight" did you need to gain weight. Or did you go over what you are supposed to weigh? I know its frustrating, but as long as your health is o.k. and the weight gain isn't that much, don't worry about it. But if you really start putting on the weight maybe nutritional supplements and weight watchers. Just dont beat yourself up about it. Your healthy with no infections, and as we start getting older we need more exercise (god am I one to talk), maybe walking 2 miles a day. Anyways your not alone with the weight struggle.
deleted_user
deleted_user

I can't seem to lose it. my activity level is low right now being winter but also I just don't have time w/ 2 children under age 4 and working full time.. But when I was layed off I tried an exercise routine was doing good and then got sick again.. So I think it's a toss up..
stimpy
stimpy

Briggzie: Thats a GOOD POINT: When you are overwhelmed and busy working and taking care of kids and god knows WHAT ELSE there is to do in life, your body is tired, so if you go exercise, I find that it breaks down my body even more and then i AM REALLY SUSCEPTIBLE to infections and illness.
deleted_user
deleted_user

I have been thin all my life. Before my dx I lost a lot of weight. I am 5'7' and I weighed about 110 pounds. It scared me. I did everything I could think of to not go below that weight. I obsessed about it and I was sure that I would die if I went down much further.

Once I got my dx and started IVIG I fat really fast. At first I was still trying to gain weight eating fattening things, but as I started to feel better I stopped those. I still continued to gain weight at an alarming rate. I noticed that I was eating less than others but still gaining and bloating. Now, I feel like a giant. I gained 80 pounds. It's horrifying. It effects your life in so many ways. I am starting a diet as soon as I kick my current pelvic infection and plan to lose at least 25.

Interesting side note: When both of my knees blew up to the size of footballs, I had them drained every 2 or 3 days and then went for the special injections. The first day that she drained the fluid off both knees, I lost 7 pounds. My abdomen and stomach bloat like crazy. I wonder how much I would lose if I could get rid of all that bloating.

Anyway you look at it, it SUCKS.