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Is There Any Other Way!?


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24 replies to this topic

#1 Kirstie

 
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Posted 07 June 2012 - 08:07 AM

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to! :(

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover :( I really don't want to suffer like that for 6 weeks!

Thanks

K x
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#2 ravenwoodglass

 
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Posted 07 June 2012 - 08:38 AM

Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 StephanieL

 
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Posted 07 June 2012 - 09:28 AM

Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.
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#4 Kirstie

 
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Posted 07 June 2012 - 09:50 AM

Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.


I am in England but we also get money off here, so yes that is an incentive! :)
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#5 Kirstie

 
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Posted 07 June 2012 - 09:52 AM

Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.


How likely is getting a negative test result? Do you know why this happens?

Thanks :)
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#6 MitziG

 
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Posted 07 June 2012 - 10:42 AM

Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.
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#7 dani nero

 
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Posted 07 June 2012 - 11:15 AM

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#8 Kirstie

 
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Posted 07 June 2012 - 12:40 PM

Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.


Thanks for that info! I wasn't aware that just intolerance doesn't show up on a test, but that makes sense.

I think I'll try gluten for a the month, keep a food diary and compare my symptoms on gluten to the diary I kept when I was gluten-free!

The in-office test is also a great idea, thank you very much! :)
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#9 saintmaybe

 
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Posted 07 June 2012 - 12:48 PM

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to! :(

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover :( I really don't want to suffer like that for 6 weeks!

Thanks

K x


I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity.

In the U.S., this is still not a formally recognized diagnosis, although it's gaining a lot of traction in the established medical community. My primary care doctor is aware of it, and many of her patients are gluten free.

I've since found out that I have gluten sensitivity on both sides of the family, including tendencies towards alcoholism, depression, and Alzheimer's.

Probably the most direct evidence of gluten sensitivity is my brother, who tested positive for Ankylosing Spondylitis, and is now eating primal to get the inflammation down. I'm convinced I have it too, and have triggered a flare by going back on gluten for testing. Both my shoulders, my lower back, and my hip are stiff and sore to the point of not getting restful sleep at night. I'm going to see a rheumatologist next week to confirm the diagnosis, which is actually more of a diagnosis of elimination.

I'm glad I got my diagnosis though, because I feel I can help contribute to the research surrounding gluten sensitivity. Understanding this disorder, or disease process, is still in it's infancy. I'd say getting tested depends on your need to know, as well as the potential value you see a diagnosis adding to your life.
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#10 love2travel

 
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Posted 07 June 2012 - 02:26 PM

Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger. :D

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.
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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.

#11 srall

 
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Posted 07 June 2012 - 02:49 PM

I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!
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#12 Kirstie

 
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Posted 08 June 2012 - 02:36 AM

Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger. :D

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.


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!
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#13 Kirstie

 
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Posted 08 June 2012 - 02:38 AM

I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!


I understand how you feel, after suffering painful vomiting last night and now fatigue, cramps and aches after eating just two gluten containing meals, I am re-considering ever listening/visiting a doctor with this again!! :(
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#14 Kirstie

 
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Posted 08 June 2012 - 02:40 AM

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.


Very true, I was just hoping there was some other way to be diagnosed that doesn't include poisoning myself for 6 weeks and dealing with sceptical doctors that treat me like a silly little girl! :angry:
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#15 srall

 
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Posted 08 June 2012 - 05:01 AM

Kirstie, my mom had the same experience as you. She was gluten free for 2 years (sans diagnosis) and was still anemic. Her doctor convinced her to do the gluten challenge so they could do a scope. She was vomiting and (TMI alert) couldn't even get out of bed to go to the bathroom after the first gluten meal. She called the doctor and talked to the nurse, who was insistent that she needed to continue so they could get a diagnosis. Finally the doctor heard about the conversation, called my mom back and told her "For God's sake, stop! No more gluten." Hopefully your doctor gets it.

Sorry you got sick. I'm not one bit surprised though. Hope you're feeling better today.
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