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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. I so appreciate your input!

    You are more than welcome. I started another topic under non diagnosed to get more feedback, I think I am going to resolve to go back to gluten free casein free no matter what my test shows.....although deep down I want an answer. Its terrible having the issues, and terrible going on this diet, I felt like I was spiraling down a path of malnourishment and weight loss with the gluten and casein free diet. But, the lesser of the two evils is gluten free for sure. Lots of people on this forum seem to have gotten the hang of it and don't seem to be dying of malnourishment. Rather they are rejoicing to have their health back. I keep on getting these corner of my mouth cracks from vit def. so I have a lot to learn about gluten free, casein free. I hope your symtoms resolve on dairy free. Maybe also try probiotics? Also make sure you didn't get some GI bug/parasite. If you don't improve in 1 mo or so, see a GI doc. And... I would change GI docs if I was you. Sounds a bit unprofessional to me. I am lucky that I am an MD and trained with my GI, so he knows I am not fabricating anything. I hate when docs assume or allude to that. It is so embarrassing for us to even go see anyone about all these crazy symptoms and to put our trust in them. You deserve better than that. Good luck.


  4. 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


  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. B)


  7. WOW reading all this makes me feel less crazy and alone, yet depressed! lol

    I am supposed to go for a scope, but am thinking of canceling.

    I am positive for the gene, my older sister has been diagnosed Celiac and I have all the symptoms. I went gluten-free and felt like I was given a new lease on life! I went on a cruise and while I tried to be good, must have accidentally poisoned myself and now I seem to be having issues with DAIRY and corn!!!I have been home 8 days and cannot feel normal again, even being strict on my gluten-free diet. I want to cry! I am so frustrated. My husband is against me getting scoped again (I was scoped 7 months ago due to extreme acid reflux, before we realized my gluten issue). My acid reflux (even with my medication) is worse then EVER! I cannot keep my pants buttoned and just want to poke my abdomen with a pin in hopes it will deflate!

    Reading your post, I am more frustrated since I asked my Dr WHY scope me if I am gluten-free?? He insisted I should still have "something" for him to biopsy! He never spoke of doing a challenge. If I do bend and do the scope am I supposed to poison myself first???????

    Sorry did not mean to make this about me! I am just at my wits end.

    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) B)


  8. Good luck with it--we're here if you need us :)

    Oh--Triscuits ;)

    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. I second Triscuits and also Cream of Wheat. I used both of those for my challenge.

    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. 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.


  12. 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........


  13. Gluten is defined by a chemist as any prolamine protein from a grain source. That would include wheat and corn. Gluten as generally used by celiacs and dietitians includes only the prolamine proteins from wheat, rye and barley (oats may be included, or not).

    So, corn has gluten, but celiacs do not need to be concerned about corn gluten.

    If you are a celiac who is also intolerant to corn, then that is a different story,

    So the prolamine in gluten differs from the prolamine in wheat,barley,rye?

    Are there many celiacs that have IgA to corn? I haven't been tested for it, but I think I must judging by my reaction. I have recently been logging all my food and symptoms after I got fed up with living life in a bathroom and with constant belly aches. Do you or anyone out there know how you get checked for corn allergy or whatever it's called? I suppose I could buy some corn meal or Mesa corn flour and test it out for sure.thanks.


  14. Does anybody know if there is a connection to gluten and corn? I'm still trying to figure out my nausea and diarrhea after eating some corn products (mesa corn and corn meal) and I read something saying that corn is a gluten?...weird. www.wellsphere.com/allergies-article/corn-gluten...celiac.../964619

    I searched celiac.com and didn't come up with much.....


  15. Sorry, I'm not sure I understand. In your first post you said you have been really careful to be gluten free. Did you eat the bread before you started trying to be gluten free? I didn't have bad stomach-related reactions to regular bread before I went gluten free either. I became much more sensitive to gluten (AKA wheat, rye, barley) after I was 100% gluten free for a while. Now if I have even a little bit I get symptoms similar to food poisioning. Maybe that is what's going on with you?

    I was sort of gluten free when I ate the bread, only for about a mo. Because I got tired of the diet. Maybe I should test that out and eat some bagels....mmmmm I do miss em much!

    Since then I have been gluten free for about 2 mo.....


  16. I think we all thought you had Celiac or gluten intolerance. Not sure what to tell you. Could be any of the ingredients or none (virus, food poisoning, other food or medication).

    I do have gluten intol, proven by daily cramps and diarrhea remission after I stopped consuming gluten. And even better w/o dairy. I did the enterolab and it came back pos for gluten and dairy IgA elev and I have the celiac and the gluten gene. Along w some mild fat malabsorption. But perhaps it was the butter or corn flour or food poisoning? Just wondered if anyone out there had heard of a crazy reaction like that. Well my Nanny will eat the tamales and if she doesn't get sick....will have me perplexed, unless I happened to get the bacteria batch. Just everything I read on food poisoning says it starts 2-4 hrs later and lasts much longer than the 3 hr ordeal I had. <_<


  17. Not all Masa corn flour is 100% corn flour. Some brands are mixes of corn and wheat. And even if the only ingredients listed are corn, then it could have been processed on the same equipment as wheat flour. I had a bad reaction to a bag of masa flour that was just corn. When I contacted the company I found out it was processed on the same lines as wheat flour.

    Pretty sure it's not wheat, I have tolerated test of piece of bread a mo ago. Maybe it was food poisoning?? I got nauseated 30 min after I ate them.


  18. I'm picturing you in the bathroom with a computer. :ph34r:

    Food poisoning can be cramps and diarrhea. Its also possible with food poisoning that you got lucky and got the part with the bad bacteria.

    I think you should find out what exactly she put in them and possible cc issues. Feel better, soon!

    I take my iPad everywhere I go......:-) :). Except the shower. But I can't bring my work computer in there, maybe I should get a potty put in my office so I can keep working when I get the poops!


  19. I'm pretty sure that gastro responses to actual food poisoning (botulism, etc.) occur about 8 hours after you consume the offensive food. Have you been ok with regular corn and other derivatives? (Like cornstarch?)

    You may be right. Prob not food poisoning. She delivered several hundred tamales and no one reported getting sick to her. Think I'm ok with corn starch, and corn.


  20. besides the cc issue and the obvious need to know the ingredients, I have discovered that as time has gone by, accidental ingestion of foods that bother me tends to bother me more and more each time. Just another thought. I think when you feel better, having a serious one-on-one with the maid about your cooking needs is in order!

    Ingrdients were chicken,Mesa corn flour,lots of butter,potatoes,carrots. I have eaten corn before w/ o a severe reaction like this one. I'm feeling better now, about to eat some thai kitchen noodle soup. I'm thinking it can't be food poisoning, even brucilosis and staph aureus take four hours to set in, and it was one hour,lasted 3 hours and is gone now. Maybe your right, when you eliminate a food and later accidentally consume it ( many the butter since I have a caisen Iga level of 30 on enterolab test) maybe the reaction is more severe?? I haven't had dairy in 3 weeks now. All my tummy symptoms completely gone with both gluten and dairy elimination. I thought it seemed crazy when I first read that reactions get more severe with time. My hubby won't try them,so I won't have a "control" subject.


  21. First, most corn dog coating is part wheat flour part corn meal.

    What did she put in the tamales? You need to see the ingredients. Is she making them in a pan or cutting board or colander, etc that had had wheat things before? If she made them at her house, there might be cc from her kitchen. Could be something else isn't agreeing with you. Don't know what the reaction is, but could it be food poisoning?

    Soooo frustrating! They were probably really tasty, too. :)

    Thanks for your quick reply, I am in the potty right now w cramps. I feel kinda shaky too. I have tolerated sm amounts of accidental glutenning. I'm wondering if it's corn?I can't believe it would be the butter. This feels familiar so I'm not convinced food poisoning, maybe I'll test it out on my hubby when he gets home. So frustrated. I'm trying to work too!

    Crampy girl