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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Tamber

How Much "cheating" Is Allowed ?

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  This stuff can kill you.

This is the bottom line .

 

 

Welcome to the forums :D

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Hi Tamber, again.

 

I just wanted to say welcome again, and it's okay to want to cheat. And one cheat will no kill you, nor another cheat. I know many people in my small town who cheat, although diagnosed.  It's all about choices.

 

When I do get careless, it takes a day out of my life, listless on the sofa and I'm confined to home ( and I suffer less than others).  AND, why waste a day and why waste a day of good health.?

 

Go for the good stuff and live well.  And you know, what's right for you.  I am confident you will choose wiselyl  You will make the right choice. :)

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I was a bit careless yesterday, and for the first time in a long time something rose up and bit me :ph34r:   I am really miffed with myself because who needs to feel like #*&T when they could be out having fun :rolleyes:

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I was a bit careless yesterday, and for the first time in a long time something rose up and bit me :ph34r:   I am really miffed with myself because who needs to feel like #*&T when they could be out having fun :rolleyes:

Hope you feel better today. xxxooo    Today is tomorrow. Feel beter  Mushrooms!

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Hope you feel better today. xxxooo    Today is tomorrow. Feel beter  Mushrooms!

 

Thanks!  Still trying to find something to eat other than yogurt that does not make me feel like barfing.  Think I'll make some veggie soup :)

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

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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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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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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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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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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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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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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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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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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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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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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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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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    • Thank you so much for your very well thought out answer.  You're right, I'm just going wait 12 weeks because although I feel like crap, it is not horrible like I know it is for some people. How anemic were you? I ask because I have had low iron on and off 12 ferritin (22+ normal) 37 iron (normal 50 and above), and 10 transferrin saturation (14 is normal) have been my lowest.  I know this is not crazy low and what happens is I do respond to iron pills, but last time when I stopped taking them, I just drop down below normal.  The doctor said she would do an endoscopy if I didn't respond to the iron. But, I am back to a normal level now but just going keep taking iron because I'm afraid it will drop again.  I guess my question is would someone with celiac even respond to iron pills, or would it just stay low?  Thanks so much!  I've been kind of a  lurker on here for awhile and have noticed you are always so helpful!! 
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