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ebrbetty

Scared And Need Support Please

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hi everyone, I'm really having a hard time lately, I'm sitting here with stomach pain again[below the belly button] and crying like a baby...so embarrassing I know, but I am hoping someone here can understand...I'm going back and forth in my head weather or not to pick up the phone, call the pizza place and just order a pizza or sub..I mean if I'm still living with this God awful pain gluten-free then why not at least eat something good? why not once and for all find out if eating gluten again after 3 months is really going to make me sicker?!

I keep thinking the blood tests are wrong [borderline positive while 90% gluten-free] maybe the positive was something other than celiac..I know I must sound crazy, but I'm scared, scared of living with this pain everyday for the rest of my life

thanks for letting me vent, sorry if I upset anyone, just hoping someone, anyone ever thought about all of this crap!

Betty

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Betty, I really feel for you. My husband went gluten-free due to celiac in 03 and every now and then even something gluten-free bothers him -- he developed sensitivities to other foods and roughage.

Are you still under doctor's care?

I wish I knew some answers for you. We're still grappling with this disease too.

Debbie

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thanks for reading and letting me vent, I'm at a loss and sick and tired of being in pain

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Dear Betty=

I have no answers but i do have emphathy for what your going through.

you know when you mentioned 3 months..that's when other things started bothering me other than guluten..

My chiro said, once my gut started to heal, my body said. "ok listen to me...I hated gluten but now I'll show you what else i don't like" :angry:

It was dairy, my second favorite thing..(cheese and milk esp) and now in the 8th month it's soy.

The only thing i know for sure...if you were feeling better before this, you do not want to give in to the 'pizza' . From the posts i've seen on here, most of us have have this happen.

please keep checking in with us ok.

hugs

Judy in Philly

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((((judy)))

thank you..your kindness made me cry more lol

somedays this is so very hard

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somedays this is so very hard

Oh Betty I know how that feels. Last week posted about another crude dr and horrid treatment and another dx on top of the 6 i have now + celiac disease....

Some days we just want to give up..when we're down..it's easier for us not to see clearly or think clearly.

Last week when so 'down' my friends on here 'boosted' me up so I could cope...helped me get through the week till the new dr..said the last one didn't know what she was talking about...

this doens't help you with your situation..I KNOW THAT --but there are so many other people on board so much more informed than i am that can give give better advice--but i can give you hope and hugs.

HOPE NOTE MORE TEARS :) Wish i could give you a laugh..

question..did you say your blood work was done WHILE BEING GLUTEN FREE.?????

JUDY IN PHILLY

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yes Judy, I was about 80-90% gluten free, I just thought I'd try the diet and it seemed to be helping, my Dr said lets take a blood test..I told him it'll come back neg. since I wasn't eating a "full" gluten diet, he agreed it would probably be negative, but said lets do it anyway..to both our surprise I was borderline positive! I wonder how high my #'s would have been if I was eating a regular Gluten diet!

thanks for the support!!

hugs

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Hi Betty,

I just want to send you hugs and tell you that we know what that feels like. Well, I know for sure I do anyway. No matter how careful I am, and my antibodies did fall to within normal range, my villi are still flat as a board and I still suffer terribly with the collagenous colitis EVERY SINGLE NIGHT through the night. Sometime, I figure, Why the heck am I putting myself through this diet when I haven't regained total health? Well, I can't take any chances - my children need me on this earth for a long as I can possibly stay here and when it is my time to go, I want to be able to look myself in the mirror and be able to say to myself that I did everything humanly possible to stay here.

I do have good days, but more bad than good. I am hoping that will change. It is a goal, it's what keeps me going when I have days like yours......

Hugs and strength vibes being sent your way......

Karen

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Sorry to hear it betty, but you have come to the best place I have seen anywhere for support. Almost everyone on this site understands how you feel and iwll try to help you out.

As for "devopling new intorences" I wonder, are we devolping htem, or did the "more powerful" reaction to gluten just hid them all along. Dont most of us suspect gluten first and formost anytime we even get a cold any more? I know I do! heh.

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Hi Betty. Hang in there. My husband has been gluten free now for about 5 1/2 consecutive months. He has many days where he feels good (for a celiac) and then he'll all of a sudden have several days to weeks where he feels like crap. I'm assuming it must just be part of the road of healing. When he gets discouraged on the days when he's feeling bad I try to remind him about how much worse he was before dx and that it just takes time to get to light at the end of this terribly long tunnel. He also like Judy mentioned developed other intolerances. First was Casein at about 3 months gluten-free, then at about 4 months soy, and now in the last few weeks peanuts. Maybe you should try and take note if you are feeling worse after dairy or soy. Have you tried anything like pepto for your stomach pains? I sure hope you are feeling better soon and maybe your body just needs more time to heal, my husband still has many symptoms regularly. (I'm not trying to minimize your pain by talking about his - I just wanted you to know you aren't alone and maybe/hopefully its all just normal and part of the process.) Hang in there and don't give in to that pizza, you'll be glad you didn't when your healed and feeling back to your old self.

Jennifer

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I can't thank you guys enough..you've all been so kind and though I hate to hear of others still having trouble, it does make me not feel so alone.

no pizza, I'll be good and have salmon

I gave up dairy, trying to stay away from rice.

thanks again, I really appreciate the kindness

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I told him it'll come back neg. since I wasn't eating a "full" gluten diet, he agreed it would probably be negative, but said lets do it anyway..to both our surprise I was borderline positive! I wonder how high my #'s would have been if I was eating a regular Gluten diet!

thanks for the support!!

I think you really answered youself :)

If you were ALMOST gluten free and you #'s were still high...that's the clincher for me.

after 8 months gluten free my #'s were HIGHER then when tested for celiac disease..no one can tell me why-even my dr

-but #'s aren't as important as how much better i am now..even tho i have set backs.

As someone said here. remember how you felt before dx. your dr seems to listen so that's a +

..All it takes is for me to take a deep breath from the pain== and remember back to when i was home bound with explosive D and couldn't leave the house for fear of an accident for 5 weeks... :ph34r:

Keep the faith --post when your feeling tempted..you'll help you and support your effort.

judy in philly

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Hi Betty,

I know where you are coming from. Today at work there was a small foil wrapped easter egg. I popped it in my mouth without thinking. Then it hit me, I did not know the ingredients ,I spit it out quickly. Then I really wanted a pizza, so I stopped and got pizza pizza crusts so I could make my own. I hate the pain and the dh and thoughts of falling off occured to me but then I remember how sick I get.

It's sometimes so hard and other times it is so easy.

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Hi Betty, I know it can be so discouraging! After three months on the gluten free diet, and feeling so much better, the horrible fibromaylgia pains started coming back. I had been able to completely stop the powerful pain medications I was taking after only two weeks on the gluten free diet. Then I realized that all lectins were a problem and stopped eating those (more info in my link on lectins in my signature, if interested) and was finally losing weight (I had been gaining weight for no reason anybody could find). But then, after three months, I was in pain again!

That's when I figured out about the salicylates (another link in my signature), and when I stopped eating those, the pain went to a level that I can ignore most of the time without painkillers.

That doesn't leave me a lot to eat, but feeling so much better is worth it to me.

From what I've read, quite a few people here cannot tolerate the nightshade family, soy is a common allergen for celiacs, so is dairy (which you already don't have any more), and rice can be a problem, too. And then there are all the many 'healthy foods' (including all fruit except for peeled pears, all herbs and spices, even honey!) I can't tolerate, but I am an exception, I think.

Have you checked all your cosmetics and things like shampoo, conditioner, toothpaste for hidden sources of gluten? Those might be a problem. Did you also get a new toaster for yourself (if you eat gluten free bread, that is essential), replace wooden cutting boards and utensils, discard any scratched non-stick pots and pans? All those are potential sources of contamination.

And then there are things like baking with regular flour (you'll breathe in the dust and get glutened) and cross-contamination. It's a jungle out there! :ph34r:

I am glad you didn't give in to the pizza.........Believe me, that kind of thought has crossed my mind many times. Just this week I had horrible diarrhea for a few days (I think it was the goats cheese I was trying), and felt like eating some bread, since 'it couldn't get any worse, anyway'. I resisted the urge, but it was hard.

So, hang in there, it will get better. And I agree, a positive result on the blood test being almost gluten free is evidence enough that you have Celiac disease.

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hi everyone, I'm really having a hard time lately, I'm sitting here with stomach pain again[below the belly button] and crying like a baby...so embarrassing I know, but I am hoping someone here can understand...I'm going back and forth in my head weather or not to pick up the phone, call the pizza place and just order a pizza or sub..I mean if I'm still living with this God awful pain gluten-free then why not at least eat something good? why not once and for all find out if eating gluten again after 3 months is really going to make me sicker?!

I keep thinking the blood tests are wrong [borderline positive while 90% gluten-free] maybe the positive was something other than celiac..I know I must sound crazy, but I'm scared, scared of living with this pain everyday for the rest of my life

thanks for letting me vent, sorry if I upset anyone, just hoping someone, anyone ever thought about all of this crap!

Betty

I can be the next person to tell you that I know exactly how you are feeling right now. After a few months of gluten-free-ness, I still felt bad off and on. The people around me had a difficult time understanding the time it takes for your body to heal. Some days you will have good days, and some days you will have bad days. But I can promise you that it will get better! My doctor told me that it can take a full year for your body to feel great again, so give it time! It could be that you have another intolerance of some sort, but it's just very likely that this is a bad day. I used to drink chocolate shakes when I felt bad, or watched a favorite t.v. show. 7th Heaven became an every day occurance at my house. And don't forget also, that gluten causes emotional issues as well, so never feel bad for crying! It's just your body detoxifying all the poison it's taken in. Do you have any gluten-free pizza? I always make me one of those when I'm feeling low. Anyways, hang in there- it will get better, and feel free to vent anytime!

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Betty,

I know how you feel. I too had borderline test results after being gluten free for two months when I had the blood drawn. I felt great for the first 4 months and then I think I felt so good that I tried oats. Those set me back big time. Then I was accidentally gluttening myself. So I was mad! I felt like crud anyway and thought, well maybe it was all IBS and I was nuts. So I decided to quit caffeine and see how I felt eating gluten. At first actually I didn't feel that bad (which was surprising, because it had made me SO sick before), then by the next day I had horrible heartburn, nausea, stomach pain, legs ached, horrible diarhea. So that was bad, but the next two weeks I had "C" and horrible indigestion and MAJOR depression for two weeks. It was AWEFUL! It did teach me a powerful lesson though, I am 99.9% sure I will never ingest gluten again. My husband is afraid for me to have any again. It was aweful. My mom was wondering what happened to me, because I was so depressed. AFter two weeks I started feeling better. It is really hard to follow this diet without a firm diagnoses. Especially when you aren't feeling well anyway. I am happy to say it has been almost a month since then and I am actually feeling great! I went off Prilosec two weeks ago and I have been fine without it, so I am not taking any medicines, which is good. I have tons of energy and my stomach is working again for me!

I am glad you came here before ingesting the pizza. It will get better and just keep telling yourself it will. I think that is the most depressing part when I feel as if I will never start feeling well again.

Just remember that you do have celiac and you need to stay gluten free!

HUGS,

Monica

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Well, Betty, let me to be someone who can say I completely understand! I have been gluten-free for 4 months. I was horribly sick for years, and it had progressively gotten worse. I finally went to my doc and asked for the testing. My tests came back inconclusive. I went gluten-free anyway, I couldn't take the pain anymore. I felt incredibly better.....Now I have good and bad days. Usually I can link the bad days back to some accidental gluten. I keep finding it in things I would never have thought of. Every time I get sick now, I start thinking of what I have eaten, what products I have used, was there a chance for CC, ect......

I have figured out that soy does not agree with me. Maybe there are some things like that, that you just can't tolerate.

Hang in there. I have faith it will get better......I know I have many better days now then I did before. And best of all I can travel again! Try to think of the positives, I know its hard when your in pain, but sometimes if you can list the good, the bad doesn't seem as bad.

Lollie

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Guest nini

I'm sorry you are feeling bad... we've ALL had days like this. Not to minimize your pain in any way at all, just trying to show you that with persistance eventually it will all be ok. When I have days like this (which are few and far between anymore) I have myself some chocolate or some gluten-free garlic cheese bread on Kinnikkinicks pizza crust... really takes those cravings away.

As far as the crying, it's to be expected. Don't be hard on yourself, you may still have a hidden gluten somewhere in your diet or personal care products... after 3 years of this, I still just recently found another hidden gluten in a generic coffee! yikes! who would have thought coffee? Not me! Just showed me that I can't assume ANYTHING!

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}

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you know something? you guys are the best :D I really can't thank you all enough, I'm just going to take it one day at a time, something set me off a few days ago, maybe the Ians fish sticks..who knows, but hopefully It will calm down soon, I feel like my insides are red and inflamed..they probably are :huh:

I'm thinking of calling my Dr on monday to set up a colonoscopy, its the only test I have not had, too scared, but I think its time...what is it they look for and what can they find out? can they see the villi?

well, with hand still rubbing belly i thank each and everyone of you, you have kept me from eating a pizza and having a panic attack!!

hugs, Betty

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Hi Betty--Been out today, and didn't see your post until now. I'm so sad that you're in so much pain! This is a tough thing to go through. For the life of me, I can't figure it out, either. I thought giving up gluten was going to be the answer to my longstanding health problems. No sooner do I master that, and the other intolerances make themselves known. It's like some kind of cruel joje--only it's not funny. We all feel for you--and you have so much support! Don't give up now--we have to think that it will get better. I read posts from "veteran Celiacs" on the board who tell their stories of getting well and cling to their words. Sending hugs and good wishes your way--contact me anytime :)

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Guest BERNESES

Hi Betty- Just wanted to add more support to your thread. It's really hard somedays. ((((Hugs)))), Beverly

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Hi Patti, thank you for the support and kind words..its "funny" when I got the positive results I was so happy, I thought it was great to finally know what was wrong with me, just stop eating gluten and I'll be pain free and good to get on with my life...easier said then done, that one of the depressing things about this diet, its not that simple.

hugs right back at ya...thank goodness for this board and all the wonderful ppl here

thanks Beverly :D

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*hugs betty*

I know how you feel, honestly, I really really know how you feel. You can read my latest post in this forum, to find out how even gluten-free products with very careful watch for contamination still is making me sick..

If I had a cure, I'd give it to the both of us!!

~lisa~

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Please add my HUGS to everyone elses'. I was like you in that I was so glad to finally have an answer. My stomach is no longer an issue, but so many other health issues keep croping up that I sometimes wonder why I try so hard. But, then my rational thinking takes hold and I just keep on going.

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To Betty, and all of us

{{{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

I wonder the exact same thing myself, but it's not stomach pains I experience while gluten-free, it's the mental stuff. Why am I STILL so depressed and FOGGY on this diet, and what is the point??? I felt this bad, no, maybe NOT this bad while on gluten, so why bother???? I guess we can only give it time. :angry:

Endurance, friend, that's what it takes I guess. :( Wish I could offer more encouragement than that.

Many hugs.

Susan

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