maridadi
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So I've been back and forth over this gluten thing for quite awhile now. Since my last "denial" phase, which consisted of about 2 weeks of incorporating a lot of gluten back into my diet, I've pretty much come to the conclusion that I do have celiac. So, for the past week, I have eliminated gluten, this time for good. I also decided to eliminate dairy, as I've read a lot about casein being a problem. I've been eating mostly eggs, vegetables, chicken, fruit, nuts, sweet potatoes. Now as far as the gluten being gone, my anxiety/nervousness has decreased remarkably. I do miss cottage cheese, CHEESE, and yogurt a lot. I also am really not doing grains so much, as I am a gluten gainer and have read that the paleo-oriented diet has helped a lot of people lose the excess. But I'm feeling really deprived and I've felt very lethargic and have had zero energy this week. And it doesnt seem to matter how much chicken or egg whites I eat, I can't stop being hungry. I don't know if my adrenals are just getting a break or if this is withdrawal or what, but I'm used to exercising tons and at least feeling motivated to be up and about. But I have been so lazy and tired it's scaring me.
So, this afternoon, I stumbled upon a box of Rice Chex and put my face in it. After eating the cereal I finally felt a little better, but now I'm worried I've messed up this paleo thing I had going. Are grains bad if I want to lose the excess weight I've gained from the gluten business? I gain sooo easily it's freakish when I'm eating gluten.
I guess I'm just looking for a little advice. Sorry if this is an incoherent ramble. Such is the current state of my brain.
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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.
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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
Gluten-Free Carbs/grains
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
Thank you all soooo much for your responses. I am so amazed by how supportive this board is. I have not read any Paleo books, specifically. I am just trying to stick with whole, unprocessed foods at this point. I've read some threads here about how people have been negatively affected by (non-gluten) grains, so I figured I'd steer clear for awhile. Also cut out sugar (aside from fruit) and dairy and peanuts, which has been hard for me.
I think I'm getting a lot of fat because I'm eating lots of guacamole and tons of nuts, and using some coconut oil for cooking.
I don't really like red meat, never have, but maybe I'll try to incorporate some ground beef, at least.
Maybe I've made too many changes too fast, but I'm the kind of person that doesn't do anything halfway. I hate being at this weight, I sure didn't eat myself fat and I'm desperate to lose it. I know how to eat balanced and healthily, and I value the ultimate goal of moderation, but everyone speaks so highly of this Paleo lifestyle that I feel like I am doing the wrong thing by keeping grains and chocolate in my diet. I just feel like my body does better with them, or maybe I'm just addicted? Like, will I ever stop wanting cereal and cheese and chocolate and all the things I love? Do I really have to restrict all this stuff if I want to lose weight, or will getting rid of gluten alone do the trick? I also have years of metabolic damage from not eating enough and overexercising to slow the insane gains.
After I had the chex I had some chocolate too, and I felt way better. Even had the energy (sort of) to push myself to go for a bike ride. Does my body need these things or have I just not made it through the withdrawal phase yet?
Maybe I really do just need to find what works for me. I guess I'm just feeling impatient and wanting to do The Right Thing. I read about people on these elimination diets who are finally losing weight and it makes me afraid of eating anything. Part of me wants to give my digestive system a much needed break and stick to very limited foods, possibly uproot addictions (intolerances)... and part of me wants to give my brain a break and eat balanced everything aside from gluten. I have suffered and fought my body for so long because it hasn't made sense.
I wanna lose it all as fast as I've gained it, but I guess if it is inflammation it will take some time to heal.
What you said about not needing to be perfect (except for, of course, gluten) and about being patient really were exactly what I needed to hear. I'm so scared of messing up. Thank you for sharing your experience and giving me the reassurance I so desperately needed to hear.
And thanks, skylark...that recipe sounds yummy!