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How Much "cheating" Is Allowed ?


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43 replies to this topic

#31 Nikki2777

 
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Posted 11 April 2013 - 08:09 AM

Diagnosed 1 month ago here - I echo everyone, and will add that I thought I had manageable symptoms, but they've gotten worse since being gluten-free.  Now, an accidental glutening is just no fun at all.  And I suspect it will get worse.  This is nature's way of keeping you from cheating.

 

What helped me, and still does, is thinking that research is moving quickly with the new prevalence of Celiac, and maybe science will have a pill, or a new treatment in 5 years or 10 and I can go back to an occasional treat.  But the honest truth is, I'm finding plenty I can eat gluten-free and you just adjust.  The hardest part with me is figuring out when to trust restaurants, etc. and dealing with work related meals.  But I think I'll figure that out.  Good luck.  I was you only one month ago.


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#32 sweettea

 
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Posted 24 April 2013 - 04:04 PM

What if you aren't celiac, and just "possibly" gluten intolerant/allergic?


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#33 mushroom

 
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Posted 24 April 2013 - 04:39 PM

It all depends on how much you want to suffer and how much damage you want to risk doing to your body.    And allergy is something else entirely, and not to be taken lightly, as allergies can become worse and life-threatening.


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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"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#34 sweettea

 
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Posted 24 April 2013 - 04:44 PM

It all depends on how much you want to suffer and how much damage you want to risk doing to your body.    And allergy is something else entirely, and not to be taken lightly, as allergies can become worse and life-threatening.

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.


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#35 Lisa

 
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Posted 24 April 2013 - 04:57 PM

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

Hey Sweettea!  Migraines and skin issues are closely associated with celiac disease.  Are you aware of dematitis herpetiformis?


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#36 sweettea

 
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Posted 24 April 2013 - 05:05 PM

Hey Sweettea!  Migraines and skin issues are closely associated with celiac disease.  Are you aware of dematitis herpetiformis?


Hi! I just recently heard of it through my gluten research. I was diagnosed with lichen plants and lichen nitidus. I definitely don't look like I have the herpetiformis going on but google I'd probably showing me the worst case scenarios.
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#37 mushroom

 
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Posted 24 April 2013 - 05:11 PM

If you check the dermatitis herpetiformis section on the forum here, there is a photo bank of members photographs of their lesions for comparison purposes.  These run the gamut from mild to severe.  Even dermatologists have a hard time with this diagnosis. 

 

ETA: Eczema and psoriasis are two other skin conditins associated with celiac disease.


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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

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#38 Tamber

 
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Posted 24 April 2013 - 05:11 PM

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

 

Sweettea - If I may, what tests did you have ? 

 

For me, both the Deamidated Gliatin Abs IgA test and the t-Transglutaminase (tTG) IgA came back negative. It was the tgG IgG test that came back high. And that was later supported by a dramatic change in my Vitamin D levels - from 115 to 35 after approx. 65 days gluten free.

 

PS Does anyone here know whether the innaccurate results of my IgA tests could have anything to do with my having very low Immunoglobuliina A levels ?


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#39 mushroom

 
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Posted 24 April 2013 - 05:18 PM


PS Does anyone here know whether the innaccurate results of my IgA tests could have anything to do with my having very low Immunoglobuliina A levels ?

 

Yes.  The  Immunoglobulin A, aka total serum IgA, is run as a control test to ensure that you produce normal amounts of antibodies.  If yours was low it would invalidate any IgA testing, in which case they use the IgG.   I am hoping you meant your D went up to 115 from 35 ;)


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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

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#40 Tamber

 
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Posted 24 April 2013 - 05:34 PM

Yes.  The  Immunoglobulin A, aka total serum IgA, is run as a control test to ensure that you produce normal amounts of antibodies.  If yours was low it would invalidate any IgA testing, in which case they use the IgG.   I am hoping you meant your D went up to 115 from 35 ;)

Thanks Mushroom. I should have been more specific. While my D,25 was and is completely responsive to supplementation, my D1,25 has been steadily, independently climbing for a few years and finally hit 115 (High normal being 75 at my lab). That signalled to my docs that something was going on. Turns out that celiac was preventing my body from properly metabolizing D3 which then found its way into my blood and my urine and caused a significant deterioration in my oestopenia/osteoporosis numbers as well as a broken tooth.. Once my body is back on track, I'll increase my D3 supplementation  to constructively increase my D levels. It was a lesson that high D 1,25 isn't always a good thing and may in fact signal an infection or other problem.


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#41 mushroom

 
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Posted 24 April 2013 - 05:41 PM

Thanks Mushroom. I should have been more specific. While my D,25 was and is completely responsive to supplementation, my D1,25 has been steadily, independently climbing for a few years and finally hit 115 (High normal being 75 at my lab). That signalled to my docs that something was going on. Turns out that celiac was preventing my body from properly metabolizing D3 which then found its way into my blood and my urine and caused a significant deterioration in my oestopenia/osteoporosis numbers as well as a broken tooth.. Once my body is back on track, I'll increase my D3 supplementation  to constructively increase my D levels. It was a lesson that high D 1,25 isn't always a good thing and may in fact signal an infection or other problem.

 

Okay, gotcha. :)


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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

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#42 nvsmom

 
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Posted 24 April 2013 - 07:24 PM

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

Migraines... I used to have those close to two weeks out of every month... I had no idea they were gluten related before my diagnosis. I hope yours go too.

 

Gluten intolerantsexperience basically every symptom as a celiac except villi damage. They can have ataxia, nueropathies, gastro issues, nutritional deficiencies, and pain - all that inflammation can lead to other disease too. To be safe, I would go 100% gluten-free.

 

Best wishes.


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#43 sweettea

 
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Posted 25 April 2013 - 01:13 AM

Sweettea - If I may, what tests did you have ?  For me, both the Deamidated Gliatin Abs IgA test and the t-Transglutaminase (tTG) IgA came back negative. It was the tgG IgG test that came back high. And that was later supported by a dramatic change in my Vitamin D levels - from 115 to 35 after approx. 65 days gluten free. PS Does anyone here know whether the innaccurate results of my IgA tests could have anything to do with my having very low Immunoglobuliina A levels ?


I've had them all done including an endoscopy with biopsy which is why I'm leaning towards gluten intolerance.
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#44 foam

 
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Posted 25 April 2013 - 04:05 AM

Fine line between an intolerance and full on Celiac disease, either way you can end up autoimmune. I only ever got gut aches from eating bread/pasta/etc and a slight brain fog immediately before the gut ache and complete system flush :0 but it wasn't enough of a problem that I thought I needed to stop eating it. I certainly never had anything like you read about with people getting sick at the sniff of a flour dust. It's probably just a matter of how sensitive you are in general. So I figured I didn't have a serious problem with it.. Well I was wrong


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