Weight Gain/nervous Belly Help

[maridadi]

I was never officially diagnosed w celiac. I eliminated it due to what seemed to be continuing rapid weight gain regardless of caloric restriction and excessive exercise. When I got the gluten out, things did seem to improve, but there were a lot of other variables, so I've never been sure if I can chalk it up to an intolerance/celiac. I do have the gene pairs predisposing me to celiac, but have not had a biopsy and my antibodies were not elevated because I'd already eliminated gluten by the time of testing.

About a week ago, I decided to try adding back the gluten to my diet to see how it goes. It seems that for the first day or two I was ok, but then the familiar nervous butterflies came back. I'd forgotten how almost painful this nervousness is. I'm used to mental anxiety, but when I get these "butterflies" in my stomach it's very uncomfortable. It's not the normal "celiac" gut pain or indigestion feeling. It's literally that nervous feeling you'd get before walking on stage for a performance. I wonder if it's related to gluten?

Also, I have gained 1 pound every day this week, with no sign of stopping. It's weird because the first few days I wanted to try the things I havent been able to eat since eliminating gluten (in moderation, yes). But now it seems that my appetite is decreasing, nothing really sounds good, I'm eating less, but still gaining super fast. I know it's only been about a week, but I have a history of an eating disorder and I count calories and have not been eating excessively or anything so I'm shocked. I'm well within the healthy weight range, so it's not like I have weight to gain and definitely don't WANT to be gaining.

One more thing is this weird deep thirst feeling I get that I am now remembering (like the butterflies, I'd kinda forgotten about it). Like I crave water in the evening and can down big glasses and not really urinate much. Also, weird.

Not having any of the normal digestive symptoms associated with gluten problems. In fact, I'm a lot less constipated and my stool is formed. I just dont quite get what's up with the weight gain, primarily. I'm maybe a little paranoid because of how fast I was gaining weight before I eliminated gluten about a year ago. Again, lots of variables, but regardless, it seems a little uncanny.

I am just looking for a little feedback. Thanks in advance.

maridadi

[sa1937]

Sorry, I'm not going to be of much help but want to welcome you to the forum, maridadi!

I would think the "butterflies" would be very uncomfortable. Since you're drinking a lot of water in the evening, do you feel bloated?

Hopefully someone will respond who's experienced those symptoms or can give you better insight.

[eatmeat4good]

The "butterflies" were a neurological symptom of Celiac for me. It was both physical and mental. I described it as "raw fear" for no reason. It was horrible. Also I gained weight really rapidly and felt weak and fatigued. You are right it is very uncomfortable. Eventually I was unable to formulate sentences due to the brain fog. It was awful. I want to encourage you to think of it as neurological symptoms related to gluten...because I get the exact same reaction. For me it lasted for years. I thought I was losing my mind. I was. It came back when I got off of gluten. Anxiety and fear no longer rule my life. Neither does my weight. I lost from 200 down to 115 and I'm very happy as long as I get absolutely no gluten. The dehydration that is happening to you also happened to me. I was thristy, but unlike you I could not drink except for small sips. Then I could hardly urinate at all and when I did it was painful. There is quite a bit of information on the gluten effecting the bladder and giving painful symptoms that are often diagnosed as interstitial cystitis. I was on antibiotics for years. It never went away until I got rid of the gluten. I think you are better off without gluten just for the "butterfly" symptom alone. Whether or not you test postive...gluten can be devastating. I am now healthy and happy and active with good muscle tone...but it took me an entire year to recover from this nightmare that lasted 7 years. I can't believe there isn't a public service announcement telling people the dangers of gluten and to go ahead and diagnose themselves with it because Dr.'s aren't very good at it and 90% of Celiacs are undiagnosed. That is a lot of people. God I don't wish the madness of gluten on anyone. I hope you can give it up soon. But wanted you to know that I can relate to the mental/neurological symptoms you have from it. I hope you can determine that this is the problem for you. For years I just thought there was something wrong with me that I was fearful inside for no reason. But it is absolutely and totally gone.

[maridadi]

Thanks, Sylvia!

Thanks eatmeat! I can't tell you how much that helped. It's been really interesting putting all these puzzle pieces together, but frustrating without a "real" diagnosis. I've even started to look back to my childhood and wondered how much of the debilitating anxiety I felt as a kid could have had to do with gluten. I remember school lunches and not being able to eat because the nervous butterflies were so intense. It also makes me wonder if the eating disorder I developed when I was 11 may have been a result of feeling so bad from food...starving offered relief.

The neurological manifestation of symptoms is really interesting to me. You described exactly how I feel...I always use the term "raw" to describe my fear/anxiety and unexplained grief. The nervous butterflies were so familiar when they came back, but it took them coming back (and my eating gluten) for me to recognize the correlation. I wonder how many more symptoms would have reappeared had I kept eating gluten again. It seems like it builds up in my system and is kind of a downward spiral. Before I eliminated it originally, I'd hit absolute rock bottom...yes the horrible stupifying brain fog, exhaustion, depression, insane weight gain...but I'd chalked it up simply to the eating disorder recovery process.

I don't understand the weight gain. It's confusing because I'm coincidentally trying to recover from many years of anorexia. I'm no longer at all underweight, in fact I believe I am probably above where my body should fall naturally. I gained weight stupid fast in recovery. My metabolism was shot, sure, but I gained wayy over my target weight no matter how much I continued to restrict calories. Eliminating gluten was the only thing that finally seemed to calm things down. Trying to continue "recovering" from an eating disorder is tricky in this case. It perpetuates a feeling of fear of food, or somehow morphs it a little. Not to mention it's hard after so many years of restriction to accept that there are so many things I will never be able to have again. I thought recently maybe the celiac thing has just become a new way for me to continue restricting myself, but when I added back in gluten the horrible nervous feeling and rapid weight gain started coming back. I don't understand where the weight even comes from??

I find myself kind of in this cyclical denial thing. I get frustrated by having to restrict myself, so I eat gluten, I gain rapidly and feel really crazy and bad, can't deal with it anymore, so I eliminate gluten, things calm down, but I start getting frustrated and also thinking "maybe I'm creating all this in my head, let's give gluten one more shot"...and round and round we go.

The thirst thing is weird. With gluten, I find myself kind of without much of an appetite except for carbs/sugar (protein and veggies sound unappealing, ironically, because those are what I crave when I'm not eating gluten), and really can't stomach much fluid...but then there are those occasions when I find myself with this deep insatiable thirst...it's not normal. It's not even a dehydrated feeling...it's very strong and distinct.

I also find myself super paranoid when I'm not eating gluten. There are SO many potential sources of cross contamination that it sometimes makes my head spin.

So figuring this all out -- and trying to re-learn how to eat, listen to my body, and re-learn everything that years of disordered eating have confused -- is very overwhelming.

Thanks for listening to my rant.

[domesticactivist]

I get the nervous belly feeling, too. It had gotten worse and worse before I cut out gluten, and I even eventually started getting D when I had that nervous feeling. This had gotten especially bad after I got really sick about 6 years ago. I've always actually been more prone to constipation. When I first went gluten-free it got horrible. I think this was due to the processed gluten-free food like rice pasta and rice crackers that I started eating. The GAPS diet fixed my constipation for the most part, though it took some adjusting. I'm doing a gluten challenge now and am back and forth with digestive stuff. I also have intense thirst, but I have to get up and pee all night. The cravings you describe seem very typical to me.

The mental stuff is especially had. You might like the Open Original Shared Link She has a very sane approach to dieting. I also struggle with the feeling of being a hypochondriac have blog posts on my site that you might relate to. I am chronicling my current gluten challenge and have some posts about cheating ("confession") and also about the GAPS diet that we have found to be more healing that just being gluten-free. Writing out all my symptoms helps me realize it's not completely in my head, though I still struggle with that.