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Not Diagnosed For Celiac Yet.
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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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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.

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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.

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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.

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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

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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.

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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 think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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