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Still Devistated
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I was diagnosed in October 2011 after 3 weeks of severe, intense, mind boggling, crippling abdominal pain. That along with a terrible mind fog, however, was my only symptom. Not the classic Celiac case by any means, and although my husband later confessed that he felt like he was watching me die (I was on a "bland" diet while they tried to figure out what was wrong with me bland being consistent of crackers and chicken noodle soup go figure!) and I guess in a way I was slowly poisoning myself. When I got the phone call from the DR I was so relieved that there was an answer really didn't care what was wrong I finally knew how to feel better. So here I am, almost a year later, and yesterday I called my GI specialist to see if there was ANY possibility that I was misdiagnosed! I have been CC'd a few times and the flare only lasted a day or two so I guess I should consider myself lucky but in reality I feel like a broken freak. I just want to be normal! So I guess my real question is when do I get over the emotional aspect of this disease? Technically the diet isn't difficult to follow...read your labels and know what is in your food. I think that part of my struggle is the fact that I NEVER cheat so when I flare it

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Hi Melissa...

I am not sure that I can be much help to you...but, I am going to try...

To me, it's not feeling like a freak...it's normal... And, I have a hard time relating to the feeling of "being deprived" and the urge to "cheat" that I read, so often, in here. Please, don't take that to mean that I don't empathize...I totally do! It's just that I don't feel those things. I've actually thought a lot about "why" I don't...

For me, it's simply this:

Gluten is poison...for me and many, many others... Why "feel deprived" about not being able to have "poison"? I equate it to going out to the garage and opening up a jar/can/bottle and taking a big ol' swig...

"Antifreeze" is toxic...deadly, in fact. We, humans know not to drink it...nor do we want to. But, animals think it sweet and tasty! Which is why we humans have to keep dogs/cats/etc away from it (make sure we rinse off that big puddle from the driveway, etc). I, also, know that grapes and chocolate (to name a couple) are toxic to my dogs so, I make sure they don't get access to the stuff... I don't feel sad for them, though. I know it's for the best...

"Cheating"? Same thing...it's POISON. I don't, honestly, care that others get to have "it". In fact, I feel sorry for them (I don't think gluten is "good" for anybody...just my perspective).

Perhaps if you can, really, come to the understanding of just how "deadly" (and, yes, gluten is "deadly" to the celiac/gluten intolerant) it is to you, it won't be such an emotional struggle?

I know this might sound simplistic...it's just how I feel...

Last, but very important, if you continue to feel this way, don't hesitate to get some help... Maybe a therapist could help you sort through it all?

I hope you can find peace so you can move forward...happily and in good health.

:)

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Hi,

It sounds like you had pretty severe symptoms before you were diagnosed and went on the gluten-free diet. Any negative reaction to eating gluten is a sign that you shouldn't be eating it. Your body isn't playing games or trying to fool you if it starts reacting. You may not have severe reactions right away but most likely you would develop them over time if you went back on the gluten eating way. Damage can build up and get worse and worse. And spread to other parts of the body besides the gut. People die from celiac disease. Some people have no symptoms at all and they are termed "silent celiacs". Probably most of them are not diagnosed and walk around eating gluten thinking everything is fine. Which is sad because they will certainly develop problems over time if they are unable to absorb vitamins or the inflammation causes cancer in their gut, or some other autoimmune disease develops.

You said you improved going gluten-free right? Why do you think that is? Is it because you didn't eat gluten or was your doctor wrong? I don't see how you doctor could have been wrong about celiac if you improved though.

I think it is very normal to go through a period of doubting the celiac diagnosis for a while. There is nothing wrong with that. It is a big change in our lives and takes some adjustment to get used to.

Here is one of the threads on cheating on the gluten-free diet. The only person you cheat is yourself of course. The gluten-free diet gets easier after you have gotten used to it and aren't automatically thinking of the things you used to eat when you get hungry. It's like learning anything new, it is simpler with practice. Over time you don't think of those old gluteny foods as food anymore. And they lose their appeal.

How bad is cheating?

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Hi Melissa...

I am not sure that I can be much help to you...but, I am going to try...

To me, it's not feeling like a freak...it's normal... And, I have a hard time relating to the feeling of "being deprived" and the urge to "cheat" that I read, so often, in here. Please, don't take that to mean that I don't empathize...I totally do! It's just that I don't feel those things. I've actually thought a lot about "why" I don't...

For me, it's simply this:

Gluten is poison...for me and many, many others... Why "feel deprived" about not being able to have "poison"? I equate it to going out to the garage and opening up a jar/can/bottle and taking a big ol' swig...

"Antifreeze" is toxic...deadly, in fact. We, humans know not to drink it...nor do we want to. But, animals think it sweet and tasty! Which is why we humans have to keep dogs/cats/etc away from it (make sure we rinse off that big puddle from the driveway, etc). I, also, know that grapes and chocolate (to name a couple) are toxic to my dogs so, I make sure they don't get access to the stuff... I don't feel sad for them, though. I know it's for the best...

"Cheating"? Same thing...it's POISON. I don't, honestly, care that others get to have "it". In fact, I feel sorry for them (I don't think gluten is "good" for anybody...just my perspective).

Perhaps if you can, really, come to the understanding of just how "deadly" (and, yes, gluten is "deadly" to the celiac/gluten intolerant) it is to you, it won't be such an emotional struggle?

I know this might sound simplistic...it's just how I feel...

Last, but very important, if you continue to feel this way, don't hesitate to get some help... Maybe a therapist could help you sort through it all?

I hope you can find peace so you can move forward...happily and in good health.

:)

Thank you so much for taking the time to share your perspective. I sincerely appreciate it. To be totaly homest with you I have NEVER thought of it that way and in reading your response I had a total "Duh Idiot why did't you ever think of that" moment. Instead of focusing on how much better I feel I was totally stuck on how deprived I felt. So thank you for leading me to that moment of clarity.

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Hi,

It sounds like you had pretty severe symptoms before you were diagnosed and went on the gluten-free diet. Any negative reaction to eating gluten is a sign that you shouldn't be eating it. Your body isn't playing games or trying to fool you if it starts reacting. You may not have severe reactions right away but most likely you would develop them over time if you went back on the gluten eating way. Damage can build up and get worse and worse. And spread to other parts of the body besides the gut. People die from celiac disease. Some people have no symptoms at all and they are termed "silent celiacs". Probably most of them are not diagnosed and walk around eating gluten thinking everything is fine. Which is sad because they will certainly develop problems over time if they are unable to absorb vitamins or the inflammation causes cancer in their gut, or some other autoimmune disease develops.

You said you improved going gluten-free right? Why do you think that is? Is it because you didn't eat gluten or was your doctor wrong? I don't see how you doctor could have been wrong about celiac if you improved though.

I think it is very normal to go through a period of doubting the celiac diagnosis for a while. There is nothing wrong with that. It is a big change in our lives and takes some adjustment to get used to.

Here is one of the threads on cheating on the gluten-free diet. The only person you cheat is yourself of course. The gluten-free diet gets easier after you have gotten used to it and aren't automatically thinking of the things you used to eat when you get hungry. It's like learning anything new, it is simpler with practice. Over time you don't think of those old gluteny foods as food anymore. And they lose their appeal.

How bad is cheating?

Thank you for taking the time to respond to my post. I sincerely appreciate your advise. I know how bad cheating is and haven't nor do I want to. I think the problem is that I can never put my finger on exactly what contaminated me. My thought was to purposly expose myself to prove that I do in fact have celiac disease once and for all. Western medicine can be vague some times and I think I was banking on the fact that there was a slight chance that it could have been something else.

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Thank you for taking the time to respond to my post. I sincerely appreciate your advise. I know how bad cheating is and haven't nor do I want to. I think the problem is that I can never put my finger on exactly what contaminated me. My thought was to purposly expose myself to prove that I do in fact have celiac disease once and for all. Western medicine can be vague some times and I think I was banking on the fact that there was a slight chance that it could have been something else.

One time I got glutened by sour cream that had corn starch in it that was contaminated. It took some doing to figure THAT one out!

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I totally empathize. My symptoms were "undiagnosed" since they appeared 10 years ago and consequently I lost my career, and progressed to major neurological problems before being diagnosed. But the truth is I feel better and better each day. And have received a great deal of support from the people here in this forum. Anger and despair are certainly temptations, but the gentle and informed opinions of these folks keep me turned toward the positive. Which is essential, in the long run. Much more helpful than the well meaning pity of my family members, who send condolences for this "terrible affliction" that sound like they belong at a funeral LOL!!!

Hang in there, it really does get better. And BTWL, it seems that one has enough accumulated antigens stored in the body to generate flare ups independent of diet for quite a while. gluten-free for a while now and still have some DH lesions on my thighs. OH well.

Ed

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