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crampy girl

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About crampy girl

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  1. Hi there. Yip. Same boat here. I don't get a consistent reaction. I broke down and are 2 pieces of the yummiest pizza ever and for horrible reflux and gas and now I'm C. It's not consistently a bad enough reaction to keep me off of it. It sometimes has to build up for a while before my body will cave into an episode of complete D, cramping, out of commission and anxiety. Plus my biopsy and blood tests were neg so that makes me want to cheat even more. I love gluten and when I'm on vacation and can't find enough carbs I cheat. When I do have my bad 3 day episodes I don't cheat for weeks after. I'm still not convinced its all gluten related. I wish I knew more people with my same symptoms that could say they are 100% better w strict gluten free. I might be convinced.
  2. I have D when I am not stressed sometimes, but Once the D starts, usually around the third episode I start having that weird sensation in my gut as if I were stressed or having some kind of anxiety melt down. I get really fatigued feeling and this usually goes on for 2-3 days. I can never figure out the cause. It's as if my body just discharges some kind of anxiety attack without me being conscience aware of stress. Then I am fine again, sometimes for months. The Xanax pill idea may be worthwhile for me to try, never even thought of it until it was mentioned in the post above. But....that is usually after a week of cheating here and there. So I don't know if it's the gluten or if it's in my head,ie an anxiety disorder that results in GI symptoms. I am also sensitive to a few foods I didn't even suspect until I kept a food journal and noticed a direct correlation. A lot of Celiacs have mult food intolerances. Casein,lactose,nuts,soy are mine. All this being said, I am just as confused. But maybe aside from Celiac and food intolerances, if that's not the cause for D and cramps, there may be some kind of neural hormonal trigger kind of like a panic attack that come on out of the blue and manifests in D...?. Anyone else's input would be great!
  3. Thanks Skylark, you are always so helpful. After this challenge, once I get my scope results back, I think I am going to redo the blood tests. But, everything I am reading and seeing posted here tells me what you do. It's just so painful. I am going to resolve that I will go gluten free no matter what my scope/blood work says since I am symtomatic from gluten (just takes a larger dose of it to get it flared up) and it's probably only a matter of time before the bomb will go off. Today was a borderline day, I had cramps with several bm but no D, but my reflux, burping and gas are all back when they had disappeared off gluten. I swear it's like a drug, you try a little and get little pleasure, up the annie and taste starts to come back and before you know it, I am out of control and want to eat a box of cheese its, or pig out on bread and butter. It would be so much easier if my husband would do it with me. And if my kids had it too. I am thinking of testing them for the celiac blood profile and enterolab and if either come back positive for gliadin or Ttg auto antibodies that will make it so much easier to convert my entire house hold to meat and potatoes. Sighhhh. thanks for always being there Skylark, I mean that. Anita
  4. Thanks Jersey angel, I had some more cramps and 3 trips to the bathroom so far, no D yet, but scared. I will stay on course with 4 pieces of bread. 2 more pieces to go today.
  5. Ok, I am on day 7 of this gluten challenge. I have to admit I have not been doing the full on 4 servings, started with one, progressed to 3 due to fear of reoccurance of my horrible stomach cramps and D. I have mild cramping after I eat gluteney stuff (cheezits, triscuits, bagels, bread, cream of wheat) but no diarrhea yet. My scopes are in 3 weeks. My question is this: 1. Do I have to eat the same amount that were causing my symtoms to get the "damage" to show up on endoscopy? ( I was having daily cramps, and 2x a week dibillitating episodes) Everything I have read says 4 servings 4 weeks, I was gluten free for 12 weeks prior to the challenge. 2. Since I haven't had a major reaction, is it possible that I have a threshold and as long as I stay under it, I am ok, ie, no damage to intestines, organs,etc. and that I don't have Celiac but rather just gluten intolerance, therefore I can sneak some amount. Does this hold true for casein, soy? 3. Does Dr. Fines Enterolab results of IgA really hold true for anyone, I wonder if I am really milk protein/soy allergic and symtomatic?? Has anyone found this to be true????? I do have cramps with lactaid milk if I am overdoing it on milk products (usual consumtion is 3-4 servings of dairy daily) those are loaded questions. I don't expect a straight foward answer just wanted to see what you guys with celiac/gluten intolerance thought or have experienced...... thanks in advance. You guys have been so helpful and I really appreciate it. Crampygirl.....
  6. Hi there, I feel your pain. If I had a sibling w a biopsy or blood test proven celiac, I would not agree to the double scopes. Unless your doc is looking for how much damage there is in order to monitor your response to tx. Or is looking for something other than celiac, as in my case. If you are symptomatic on gluten, better off it, this forum overwhelmingly leans strongly on the presumed celiac diagnoses. Or if you have a pos blood test, why do the scope, unless you are malnourished, have vit def. And obvious fat malabsorption issues. Then I would advise getting scoped to see how much damage there is, stay strict and re biopsy in a year. It seems like for some reason celiacs have casein problems, corn prob/ intolerances. I'm not sure if that equates to the infamous enterolab IgA allergy to those things, but my test came back w soy and casein and gliadin igA elevation, and when I cut all thoses out, my gerd and cramps go away,but it seems to be related to a certain threshold. I am agreeing to the scopes partly because this diet is so restrictive that if I don't have villi damage, I am thinking of gluten/ casein/soy light but not complete cut out. Not sure that will be the right decision.........also I wonder if I am not having the full blown symptoms of diarrhea/ nausea/cramps with gluten light, I wonder if I am consuming enough for the tests to come back w conclusive results.... As you see, I am also confused and feel crazy.
  7. Hi there, I feel your pain. If I had a sibling w a biopsy or blood test proven celiac, I would not agree to the double scopes. Unless your doc is looking for how much damage there is in order to monitor your response to tx. Or is looking for something other than celiac, as in my case. If you are symptomatic on gluten, better off it, this forum overwhelmingly leans strongly on the presumed celiac diagnoses. Or if you have a pos blood test, why do the scope, unless you are malnourished, have vit def. And obvious fat malabsorption issues. Then I would advise getting scoped to see how much damage there is, stay strict and re biopsy in a year. It seems like for some reason celiacs have casein problems, corn prob/ intolerances. I'm not sure if that equates to the infamous enterolab IgA allergy to those things, but my test came back w soy and casein and gliadin igA elevation, and when I cut all thoses out, my gerd and cramps go away,but it seems to be related to a certain threshold. I am agreeing to the scopes partly because this diet is so restrictive that if I don't have villi damage, I am thinking of gluten/ casein/soy light but not complete cut out. Not sure that will be the right decision.........also I wonder if I am not having the full blown symptoms of diarrhea/ nausea/cramps with gluten light, I wonder if I am consuming enough for the tests to come back w conclusive results.... As you see, I am also confused and feel crazy. B)
  8. The fun is starting. Stomach cramping now. It took a while though, makes me think it's more gluten intolerance rather than celiac. Also seems to be dose related, like there is some threshold for it, and the more I eat the worse the symptoms. Does that make sense to anyone? 3 weeks to go!
  9. Sounds soooo yummy, reading your story is amazing. Did your kids get better? I am wondering about my 5 yo. She has contipation issues and is very temperamental and moody.how did your kids get diagnosed?
  10. CassP, I know you are right. I am so freaked out about this diet. I am addicted to gluten,although today it tasted gross to me. Part of me thinks yeah, Ill never be fat, another is scared to death because I am just getting thinner and know I' m pushing vit deficiencies because I keep having recurring corner of mouth cracks,and don't want to be on b vit life long. I think I am going through those grievance stages,and am in the denial phase. Trying to prove that maybe I don't have gluten intol but maybe milk protien is what has had me in havoc... At the same time, what a horrible past year this has been GI wise with more frequent horrific episodes. I can feel my gut rumbling at me now,and hope tomorrow isn't going to be one of those days....thanks for your support and encouragement. Man do I want cream of wheat! Poison is so addictive...
  11. Thanks jersey angel! I think I will sit down and cry if it comes back celiac....I'll be back
  12. Hey cassP, thanks for your reply. The first cloak panel was anti gliadin, ttg,and I think antiendomysial. The second was all the above but done at promethius. No anti deaminated gliadin done. Deep down I hope I don't have celiac sprue and am scared to death, but I need to know because I have not had the motivation to Be 100%, mostly because I haven't done all the research yet, like I didn't know there could be gluten in sausage because of cleaning with bread and cc, and didn't know stuff could be cc, or about lunch meats. I felt belchy for the first time and reflux up my throat for the first time since I went gluten free. And it actually tasted GROSS!!!! I had cheerios,crackers and a bagel, all were bland tasting and hard to eat, but I can't wait to eat a pizza, that is unless I have an episode, that will be enough to make me stop poisoning my body! How long were you gluten free before your challenge? I read somewhere caisen sp? Can do damage too, but I didn't want to overwhelm my system with two poisons, so no dairy for me. If I test pos for celiac, then I will have to do alot more work to clean up my diet, but if I test neg, I guess I will stay away from most gluten so I don't have the sicknesses of the past.
  13. Forgot to ask does anyone know if there is a food that is just pure wheat/gluten or the highest level, if I'm going to poison myself I may as well do it right and not add the milk or soy or corn factor, since I am intol. of those.....
  14. Hey guys, Its crampy girl again. Well.....I went to see my GI doc at OU MED center. He has been practicing for 25+ years and three years ago when I saw him, he wanted to the the small bowel biopsy but I declined..... Now he wants to biopsy me to see what else may be lurking in there celiac sprue or mastocytosis or eosinophilia, or microscopic colitis. I get to have a scope from both ends. Joy. He talked me into it after I told him all my symptoms. He did not tell me to gluten myself, although I have been gluten free for the most part since August, with much fewer episdoes. But, I know better. 4 servings 4x per day for 4 weeks is what I'm going to do, if I get sick from it, I am going to quit. Especially with Thanksgiving coming up. Just want to see if anyone has gone through with this with celiac or gluten intolerance. Also, we had a long conversation about the whole gluten intol vs celiac. He is of the opinion that there is a spectrum and no one know but he suspects gluten intol can eventually lead to full blown celiac sprue. Wish me luck........