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Is There Any Other Way!?


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24 replies to this topic

#16 Monklady123

 
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Posted 08 June 2012 - 07:53 AM

For me personally I would never do it. And I haven't. B) I know that when I eat gluten I feel awful. If I don't eat it I'm fine. My doctor agrees, and based on "somewhat conclusive" blood work (weird, I know) she says "most likely celiac". I don't care if it is, or if it isn't. If it isn't then it's definitely gluten intolerance. Which amounts to the same thing in my book: giving up gluten entirely.

And if your doctor says to have the test because he's still convinced it's "only" IBS... well, why does it matter? I mean, if going gluten free has cured your "IBS" symptoms, or if it has cured your "celiac/gluten intolerant" symptoms, it seems to me that the main point is that your symptoms are cured! That should be the bottom line, in my non-medical opinion. :lol:

So like I said, I couldn't do it. I don't have time to be sick for that long, and I don't care if I don't have the biopsy. I feel great and that's all that counts!
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#17 love2travel

 
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Posted 08 June 2012 - 02:17 PM

Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health :)


I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches :( Can't believe there isn't another way!

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life! :D

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. :( Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#18 Skittles

 
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Posted 08 June 2012 - 05:13 PM

I was in the same situation. I went off it for about a month and I was starting to feel better, but my doctor wanted me to go back on gluten for a month to get the test. I decided to get the test done and I am happy that I did. It was kind of a relief when I found out that I was celiac because I finally had an answer to why i had all of these problems! And like someone else said, I get a tax break (I am in Canada) so I thought that was beneficial since gluten free foods and much more expensive.
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Diagnosed with celiac by blood test in the beginning of April 2012 and confirmed with endoscopy April 20th 2012.
Gluten free since May 2012 (for 5 months.. relapsed for about a month and have been gluten free again since Nov 2012)
Corn & corn syrup free since May 2012
Dairy limited since Aug 2012
Nightshades limited since Aug 2012

Fructose limited since Nov 2012

#19 GFweightlifter

 
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Posted 09 June 2012 - 10:04 AM

I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!
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#20 Charli61

 
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Posted 09 June 2012 - 04:01 PM

Good luck, yes the challenge stinks, but I do think it's the only way.
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#21 Kirstie

 
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Posted 11 June 2012 - 11:54 AM

I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!


I'm sorry to hear that you've struggled with doctors too! I completely agree with your decision, at the end of the day its your body and you know better than anyone what hurts it!

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

Thanks for taking the time to share everyone! I'm so lucky to have found this board full of wise and helpful people! I too hope that one day a better way of testing will be available, until then I will eat what makes me feel good, and be weary before ever asking a doctor again! (sad but true.)
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#22 Kirstie

 
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Posted 11 June 2012 - 11:56 AM

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life! :D

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. :( Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have. :)


I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x
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#23 love2travel

 
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Posted 11 June 2012 - 12:10 PM

I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

Thanks for your kind post! I cannot really say I feel much better physically (a little bit less muscle pain that I have been told is fibromyalgia) but the biggest thing is that I feel better mentally, knowing I am taking care of myself better. You know what? A diagnosis like this also forces you to take inventory of all aspects of your life (at least it did me) and I knew it was time to stop making poor, non-nutritious health choices.

Your symptoms are so horrid and sad. I really feel for you. Good for you for making the right choice for you! :) Remember that your body is very precious.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#24 anabananakins

 
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Posted 11 June 2012 - 12:13 PM

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!


6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon :)
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#25 love2travel

 
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Posted 11 June 2012 - 12:15 PM

6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon :)

That is true. My doctor told me I must eat gluten for at least 3 months and eat the equivalent of 3 pieces of bread per day. It was easy for me but not for many of you. :(
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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