Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Weight Gain/nervous Belly Help

maridadi

Recommended Posts

maridadi Newbie
maridadi
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

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 Enthusiast
eatmeat4good
Posted

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 Newbie
maridadi
Posted
  • Author

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 Collaborator
domesticactivist
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...