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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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