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Not Diagnosed For Celiac Yet.


Nonna2

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Nonna2 Newbie

My family doctor thinks I may have celiac disease. On and off I would have bouts with D and then it would go away, then episodes became closer and closer. I am having a blood test this week and a colonscopy and endoscopy in the beginning of July. Since I am suspected of this I have started to change my diet and the severe stomach cramps and D have been relieved somewhat, although the b movement is still not normal. I keep checking things to make sure they are ok to have, but did not check Coffeemate until today and it has soy in it. Does anyone have a problem with that too, trying to get a grip on the does and don'ts until my test. And how long before you return to normal if it fact I do have celiac disease.


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sa1937 Community Regular

Welcome, Nonna! Since you are scheduled for an endoscopy in early July, you need to keep eating gluten until that is done so while you may want to educate yourself, don't go gluten-free just yet or you're liable to have negative results even though you may indeed have celiac. I actually went gluten-free the day of my endoscopy as it was clear to me that I had celiac.

A number of people on the forum have problems with soy.

We are all different so it's impossible to tell you how long it may take you to feel better. Some people notice improvement very quickly and others take much longer. I wish I had an answer for you.

tom Contributor

Coffeemate also has a milk protein derivative - yes, insane for a "non-dairy" product HA! - called sodium caseinate. So, anyone thinking they're dairy-free w/ coffeemate is wrong, it's just lactose-free.

I'd be bothered by both the soy & the casein.

mushroom Proficient

Yes, if you are going to go for an endoscopy I echo Sylvia, DO NOT stop eating gluten yet. In the absence of gluten the body starts to heal and your test could well come up negative by then. Use this time to learn what you will have to do once you have had the endoscopy. Start cleaning out your pantry, etc., but keep eating gluten.

TiaMichi2 Apprentice

Yes, if you are going to go for an endoscopy I echo Sylvia, DO NOT stop eating gluten yet. In the absence of gluten the body starts to heal and your test could well come up negative by then. Use this time to learn what you will have to do once you have had the endoscopy. Start cleaning out your pantry, etc., but keep eating gluten.

Right there with Silvia stay on the Gluten, until you get your "golden seal" aka endoscopy. I am sensitive not only to gluten, but soy, dairy, eggs (but can tolerate egg white a bit, weird I know), xanthan gum also gives me the same reaction as gluten. It was kind of trial and error for me. Teach yourself how to read labels, and even though it says gluten-free, read the disclosure estatement as to where and how food is processed, to be aware fo CC.

It can be overwhelming at first, but you will learn, to me if I am not sure of what I read on the label it does not go in my mouth,or on my body until I research and am positively sure.

One positive thing, you will be eating really healthy :)

-Miriam

Nonna2 Newbie

Yes, if you are going to go for an endoscopy I echo Sylvia, DO NOT stop eating gluten yet. In the absence of gluten the body starts to heal and your test could well come up negative by then. Use this time to learn what you will have to do once you have had the endoscopy. Start cleaning out your pantry, etc., but keep eating gluten.

Welcome, Nonna! Since you are scheduled for an endoscopy in early July, you need to keep eating gluten until that is done so while you may want to educate yourself, don't go gluten-free just yet or you're liable to have negative results even though you may indeed have celiac. I actually went gluten-free the day of my endoscopy as it was clear to me that I had celiac.

A number of people on the forum have problems with soy.

We are all different so it's impossible to tell you how long it may take you to feel better. Some people notice improvement very quickly and others take much longer. I wish I had an answer for you.

Thanks for your input, although I am feeling a bit better without the gluten and finding it hard to go back before my colonoscopy/endoscopy, don't want to feel sick again. Had my blood test today maybe the panel will show something. Also new arrival of only one hive on my wrist, very strange. My test are not being done till July 2nd, trying to move up but they have not openings, my luck.

sa1937 Community Regular

Thanks for your input, although I am feeling a bit better without the gluten and finding it hard to go back before my colonoscopy/endoscopy, don't want to feel sick again. Had my blood test today maybe the panel will show something. Also new arrival of only one hive on my wrist, very strange. My test are not being done till July 2nd, trying to move up but they have not openings, my luck.

Can you be put on a cancellation list to see if you can get in sooner?


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      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
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      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
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    • Scott Adams
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