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#1 hubicka

 
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Posted 04 October 2012 - 11:21 AM

For many years I've had tummy problems - extreme (and i mean extreme!) bloating, discomfort, terrible flatulence and feeling nauseous a lot, also very constipated. Doctors just told me I had IBS (even though i never have diahrrea) no IBS medicine/remedies help at all. I went to a chiropractor who did a kineseology allergy test and told me I had a wheat allergy. I cut out wheat and after a week or so my bloating had decreased as had the flatulence and discomfort, but I started to really doubt the kineseology test which has no science or logic behind it, and felt the strong lure of my beloved thick white bread and cereal... :D so i went back to my wheat-high diet and the symptoms are back with a vegeance. My stomach is HUGE, terrible terrible gas and discomfort and feeling queasy and constipated. The drs say I can have a blood test to see if I am a celiac but I have to eat wheat for 6 weeks. I feel so utterly terrible that I'm not sure I can continue for 6 weeks, its been a few days and my whole digestive system just feels absolutely terrible!
Is it likely that I am celiac? - or wheat intolerant? Also if i returned to the dr and said I feel so terrible that I can't possible continue eating wheat for 6 weeks would that be enough for a diagnosis?
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#2 GottaSki

 
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Posted 04 October 2012 - 12:39 PM

Welcome!

How long were you gluten-free? Your doctor is correct that the tests lose their accuracy with any time gluten free.

If you are unable to continue to eat gluten because the symptoms are obvious and severe - I'd talk to your doctor - it is possible that you will still be positive for celiac antibodies or if negative perhaps if you test now and then after several months gluten-free the numbers will reduce enough for the docs to diagnose you with that information along with your dietary response. It is unlikely you'll get a diagnosis of Celiac Disease without positive blood work &/or positive endoscopic biopsy, but they may diagnose Non-Celiac Gluten Intolerance. The treatment for both is the same - removing all gluten.

I do highly recommend you remain on gluten for the challenge and obtain all necessary tests - people often regret not getting tested done before going gluten-free.

Good Luck to you :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 hubicka

 
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Posted 04 October 2012 - 12:50 PM

Thanks :) will try remain on the gluten free diet. I was only gluten free for about 9 days, previously was on a very high gluten diet and for the last week i have been too. I also have a number of vitamin deficiencies, am very pale and sickly (!) hair/nails breaking/falling out etc, and have autoimmune thyroiditis so i suppose the chances of having it are high.

The thought of an endescopy worries me - i have a severe phobia of being sick and anything that would make me gag would be impossible! Perhaps I could have it under general anaesthetic? :D
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#4 GottaSki

 
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Posted 04 October 2012 - 01:12 PM

Not to worry - if you choose to have an endoscopy - they can make you nice and sleepy - I have no memory of anything going in or down - I've had three and have severe gag reflex.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 hubicka

 
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Posted 04 October 2012 - 01:15 PM

Not to worry - if you choose to have an endoscopy - they can make you nice and sleepy - I have no memory of anything going in or down - I've had three and have severe gag reflex.


Ah that's good :) Do you think the 9 gluten free days would be enough to mess up the results - should I just wait a few weeks continuing with gluten and then go to the drs?
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#6 GottaSki

 
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Posted 04 October 2012 - 01:52 PM

Ah that's good :) Do you think the 9 gluten free days would be enough to mess up the results - should I just wait a few weeks continuing with gluten and then go to the drs?

No one can really answer this. The level of antibodies may be reduced from that amount of time gluten-free. If you happen to be weakly positive, nine days could be enough to put you in "normal" range. I was weakly positive after decades of undiagnosed celiac - it was enough to trigger endo which found severe/total villous atrophy and every sample came back at the highest level on the Marsh Scale for Celiac Disease. Conversely, it is possible that you could have the antibody tests now and be positive - there is no way to know.

If you are having a very tough time ingesting gluten I would opt for an earlier Celiac Gastroenterologist appointment.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 hubicka

 
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Posted 04 October 2012 - 02:18 PM

No one can really answer this. The level of antibodies may be reduced from that amount of time gluten-free. If you happen to be weakly positive, nine days could be enough to put you in "normal" range. I was weakly positive after decades of undiagnosed celiac - it was enough to trigger endo which found severe/total villous atrophy and every sample came back at the highest level on the Marsh Scale for Celiac Disease. Conversely, it is possible that you could have the antibody tests now and be positive - there is no way to know.

If you are having a very tough time ingesting gluten I would opt for an earlier Celiac Gastroenterologist appointment.


Thanks for your help :) am going to try get a Doctor appointment tomorrow
Even if the blood tests come back positive would I still need an endescopy? I literally could not go through with it :( I would just have to be undiagnosed and cut out wheat regardless, provided my symptoms clear up as a result!
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#8 mushroom

 
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Posted 04 October 2012 - 02:54 PM

The way they do the endoscopy is like a general anesthetic, only safer. They give you medications to make you very sleepy, just like you were under anesthesia, and they give you something else that makes you forget anything that happens, so when you wake up you will be wondering when they are going to do it, only to find out it is already done. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
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