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Back On Gluten

CourtneyLee

By CourtneyLee
in Coping with Celiac Disease

Recommended Posts

CourtneyLee Contributor
CourtneyLee
Posted

So I'm getting an endoscopy late January early February so I'm back on gluten! I just ate some Indian Naan bread.. and it's only been an hour and I'm already getting pains.. Oh dear :(

Does anyone have any tips about how I can make myself feel better while I'm eating gluten?

Thanks!

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pricklypear1971 Community Regular
pricklypear1971
Posted

Digestive enzymes????

sandsurfgirl Collaborator
sandsurfgirl
Posted

Why are you doing this? Do you have to have an endoscopy diagnosis for something official?

You are getting sick after one piece of bread. The damage you will do to yourself eating gluten for the next couple of months... is it worth it? I don't understand why doctors do this to people, I really don't.

Honestly, the only treatment for celiac is avoiding gluten so if you are glutening yourself for months, I'm not sure what is going to help you.

Did you get positive blood tests because that is definitive and you do not need endoscopy to confirm the diagnosis. The doctors love to tell you that you need it because hey... a surgery makes them a ton of money.

If they were telling you to stay gluten free and do an endoscopy to see if your damage is healing then I understand but to tell you to ingest something that makes you so sick is inhuman. There will come a day when this barbaric practice is stopped, but it's going to take celiac advocates to stand up against it.

I wish I could be more help, but my only advice is to tell the doctor forget it and stay gluten free.

Gfresh404 Enthusiast
Gfresh404
Posted

Enzymes, probiotics, and vitamins.

But I wouldn't really be doing this - it already seems pretty evident that gluten is causing you problems.

AVR1962 Collaborator
AVR1962
Posted

I do wish you alot of luck with this. Doc wanted me to do the same but I could not, tried, made it to day 12. And in just that little bit of time it was a set back to me. If you get too miserable, really think what is happening to your body. You don't have to get a scope to get a diagnosis. That is the only way at one time but many, like myself, or being diagnosed thru other means.

Skylark Collaborator
Skylark
Posted

Don't eat it? What's the point of making yourself sick so some doctor can satisfy his curiosity?

I thought of getting tested. I didn't make it past the first sandwich.

Richie1 Rookie
Richie1
Posted

The docs wouldn't ask someone with a broken foot to keep kicking a wall to see if it hurts .....Stay off the gluten you don't need the endoscopy just to have a label...If it hurts already its not worth the hassle

Rich

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sandsurfgirl Collaborator
sandsurfgirl
Posted

The docs wouldn't ask someone with a broken foot to keep kicking a wall to see if it hurts .....Stay off the gluten you don't need the endoscopy just to have a label...If it hurts already its not worth the hassle

Rich

Wow that is a great analogy!!!

Who is the person who got irreversible gluten induced ataxia while doing a gluten challenge for endoscopy? Isn't she in a wheelchair? Not to scare you, but I want you to seriously think if this is worth the answers you may or may not get from that test. Give us some more background. How long have you been gluten free and why are you doing the endoscopy?

Even Dr. Green, that famous celiac doctor in San Diego (it's Green right?) says that you must be diagnosed by endoscopy and that is just wrong. I was diagnosed by blood tests and I wanted to go see him about my recovery, etc. They said they wouldn't see me unless I was diagnosed by endoscopy. So now when I read things from him, I think maybe he isn't so great afterall.

There's this ad on this site for a celiac study and they only want people who had endoscopy for the study. Why? Self diagnosed for a study I can understand excluding, but blood tests are sufficient.

Until the medical establishment changes their whole way of thinking about this disease we will have people undergoing this endoscopy torture and being told they don't have celiac when the docs miss the mark on the biopsy.

A friend of mine had positive blood tests and negative endoscopy. She was told she didn't have celiac. Five years later she was wasting away, so sick all the time. I met her and we got to talking and I told her all about all these issues. She went gluten free, but her damage was so bad by the time she did it. She wasted FIVE years being sick because of that ignorant doctor.

People's lives are at stake here and the docs just go about scoping people when they aren't the ones who have to suffer.

jimmyheard Newbie
jimmyheard
Posted

Wow that is a great analogy!!!

Who is the person who got irreversible gluten induced ataxia while doing a gluten challenge for endoscopy? Isn't she in a wheelchair? Not to scare you, but I want you to seriously think if this is worth the answers you may or may not get from that test. Give us some more background. How long have you been gluten free and why are you doing the endoscopy?

Even Dr. Green, that famous celiac doctor in San Diego (it's Green right?) says that you must be diagnosed by endoscopy and that is just wrong. I was diagnosed by blood tests and I wanted to go see him about my recovery, etc. They said they wouldn't see me unless I was diagnosed by endoscopy. So now when I read things from him, I think maybe he isn't so great afterall.

There's this ad on this site for a celiac study and they only want people who had endoscopy for the study. Why? Self diagnosed for a study I can understand excluding, but blood tests are sufficient.

Until the medical establishment changes their whole way of thinking about this disease we will have people undergoing this endoscopy torture and being told they don't have celiac when the docs miss the mark on the biopsy.

A friend of mine had positive blood tests and negative endoscopy. She was told she didn't have celiac. Five years later she was wasting away, so sick all the time. I met her and we got to talking and I told her all about all these issues. She went gluten free, but her damage was so bad by the time she did it. She wasted FIVE years being sick because of that ignorant doctor.

People's lives are at stake here and the docs just go about scoping people when they aren't the ones who have to suffer.

That's interesting as I had a positive blood test and negative endoscopy but they told me i've got it anyway. Not really sure what the point of the endoscopy was. But I got a day off work so can't complain :lol:

ravenwoodglass Mentor
ravenwoodglass
Posted

Don't eat it? What's the point of making yourself sick so some doctor can satisfy his curiosity?

I have to agree. I ended up doing two challenges. The first for my allergist and when I reacted on day three violently he told me to stop and never touch gluten again. Of course I then went to my GI for confirmation and of course he demanded another challenge by day three of that one I was laying on the bathroom floor with an intestinal bleed. That had never happened before in all my 15 years of daily and nightly D. The force of the reaction even shifted my intestines and twisted them. After that now whenever I get accidentally glutened I bleed for about 3 days.

OP if you are already suffering ill effects do keep your doctor in the know as some will stop the challenge and diagnose you. It does sound like your body is already giving you the answer as to whether it wants you consuming gluten.

beebs Enthusiast
beebs
Posted

Actually had someone write on my wall that they don't believe in all or nothing and that you should do everything in moderation. That is, eating gluten in moderation should be fine. She also implied that there is a celiac DEBATE in that some are passionate in their belief that all gluten must be eliminated, but that she believes that everything in moderation is a good motto. Also said that medical science is a crazy thing and not everyone agrees on this. Did I miss a recent study because I was fairly certain that there is NO debate on this at all.

She WAS trying to be supportive because I posted that I was sick of this diet and ready to do a day or two long gluten binge-fest. I think this was her way of being supportive of that decision. But STILL! You can be supportive without using an argument that holds some truth! Damn.

Sorry just had to vent. I hate this diet.

What about this new way to test - I wonder if its available to us here/in the states/UK etc? Where they do the biopsy and put gliadin on the biopsy therefore cutting out the need for a challenge. I really think we ought to start pushing for this!

jswog Contributor
jswog
Posted

I have to agree. I ended up doing two challenges. The first for my allergist and when I reacted on day three violently he told me to stop and never touch gluten again. Of course I then went to my GI for confirmation and of course he demanded another challenge by day three of that one I was laying on the bathroom floor with an intestinal bleed. That had never happened before in all my 15 years of daily and nightly D. The force of the reaction even shifted my intestines and twisted them. After that now whenever I get accidentally glutened I bleed for about 3 days.

OP if you are already suffering ill effects do keep your doctor in the know as some will stop the challenge and diagnose you. It does sound like your body is already giving you the answer as to whether it wants you consuming gluten.

I find this very interesting. What kicked my butt into gear about going to see a doctor was three days of bloody D. But none of them thought it could be related to this. They did my colonoscopy/endoscopy because they were wanting to check for Crohn's (which my sister has) and I requested biopsies for Celiac. The doctor wouldn't do them. Grrr...

Jen

CourtneyLee Contributor
CourtneyLee
Posted
  • Author

Wow that is a great analogy!!!

Who is the person who got irreversible gluten induced ataxia while doing a gluten challenge for endoscopy? Isn't she in a wheelchair? Not to scare you, but I want you to seriously think if this is worth the answers you may or may not get from that test. Give us some more background. How long have you been gluten free and why are you doing the endoscopy?

Even Dr. Green, that famous celiac doctor in San Diego (it's Green right?) says that you must be diagnosed by endoscopy and that is just wrong. I was diagnosed by blood tests and I wanted to go see him about my recovery, etc. They said they wouldn't see me unless I was diagnosed by endoscopy. So now when I read things from him, I think maybe he isn't so great afterall.

There's this ad on this site for a celiac study and they only want people who had endoscopy for the study. Why? Self diagnosed for a study I can understand excluding, but blood tests are sufficient.

Until the medical establishment changes their whole way of thinking about this disease we will have people undergoing this endoscopy torture and being told they don't have celiac when the docs miss the mark on the biopsy.

A friend of mine had positive blood tests and negative endoscopy. She was told she didn't have celiac. Five years later she was wasting away, so sick all the time. I met her and we got to talking and I told her all about all these issues. She went gluten free, but her damage was so bad by the time she did it. She wasted FIVE years being sick because of that ignorant doctor.

People's lives are at stake here and the docs just go about scoping people when they aren't the ones who have to suffer.

Hahaha my bad I should have done a background story!! So I've been gluten free for 10 months. I had a blood test done which "diagnosed" my coeliac, but after talking with another doctor he strongly suggested I go back on gluten to get an endoscopy, because I'm only 17. And I agree.. I don't want to be going through my life thinking "what if" you know? :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Hahaha my bad I should have done a background story!! So I've been gluten free for 10 months. I had a blood test done which "diagnosed" my coeliac, but after talking with another doctor he strongly suggested I go back on gluten to get an endoscopy, because I'm only 17. And I agree.. I don't want to be going through my life thinking "what if" you know? :)

When the blood test is positive you have celiac. If after your challenge the scope is negative please don't think you can safely eat gluten.

Skylark Collaborator
Skylark
Posted

Hahaha my bad I should have done a background story!! So I've been gluten free for 10 months. I had a blood test done which "diagnosed" my coeliac, but after talking with another doctor he strongly suggested I go back on gluten to get an endoscopy, because I'm only 17. And I agree.. I don't want to be going through my life thinking "what if" you know? :)

Positive blood test and a strong reaction to eating gluten means you're celiac. If I were you I'd stop poisoning myself for that damn doctor who doesn't have any horse sense.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Hahaha my bad I should have done a background story!! So I've been gluten free for 10 months. I had a blood test done which "diagnosed" my coeliac, but after talking with another doctor he strongly suggested I go back on gluten to get an endoscopy, because I'm only 17. And I agree.. I don't want to be going through my life thinking "what if" you know? :)

Okay I'm going to beg and plead with you now. PLEASE fire that doctor. He is dead wrong and there is no gray area about it. If you tested positive on a blood test you have celiac. There is no question, no way you don't have it.

You need to realize that gluten is literally destroying your intestines. In 10 months at 17 years old, your intestines have probably healed. So that means you have to take a hack saw and make a bloody mess in there by eating all that gluten for a few months in order for him to get a positive endoscopy. That's IF he gets the right spots.

It's very possible that you will be negative on the endoscopy because you have been gluten free so long. It takes a long time to do enough bloody mess in those intestines to come up positive on that test.

You do not want to be ANY of us who were diagnosed in our 30's and 40s' The health problems we have endured. Some people will never be 100% after so many years of celiac damage.

I am trying to save your life sweetie. Save you from a life of misery. So what if you have to be gluten free the rest of your life? You will lead a NORMAL life and be healthy.

That doctor should be fired. He is a butcher and it horrifies me what he is doing to you. It's disgusting, despicable and he should not be practicing medicine. That's how strongly I feel about what is being done to you. If I was your mother I would have his head on a stick.

Monklady123 Collaborator
Monklady123
Posted

So I'm getting an endoscopy late January early February so I'm back on gluten! I just ate some Indian Naan bread.. and it's only been an hour and I'm already getting pains.. Oh dear :(

Does anyone have any tips about how I can make myself feel better while I'm eating gluten?

Thanks!

Yes. My "tip" for how to make yourself feel better is to stop eating gluten.

That's all I've got.

It makes me so MAD, these doctors! :angry:

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