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Just Diagnosed


LizO

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LizO Rookie

Good Morning,

I just got diagnosed with Celiac's have not even met with my Dr. he just sent me an email and said he would call on Thursday.  I have no symptoms whatsoever I was tested because I had a colonoscopy in which they did a biopsy because of "villous blunting and intraepithelial lymphocytes", they followed up with a blood test for confirmation.  My question is have others on this blog been diagnosed with Celiac's with no symptoms or reactions to gluten in their diet? Any suggestions as to where to start to get rid of gluten in my diet (it seems to be everywhere) and any helpful resources you can recommend?  Thanks, Liz 


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cyclinglady Grand Master

Me.  I had no GI symptoms at the time I was diagnosed.  I was shocked.  I did have anemia, but struggled with that all my life (my celiac-related anemia was always overlooked due to a genetic anemia).  I had just gone in for a routine colonoscopy (cancer screening for the over 50 club) and during my consult, my GI ordered a celiac blood panel and if positive (it was) and endoscopy too.  

It sounds like your GI biopsied the end of your small intestine.  

Read the “Newbie 101” post pinned at the top of  the “Coping” section of the forum which has a few books worth reading or buying, plus valuable tips.  

Welcome!  

pikakegirl Enthusiast

Me too. No typical symptoms at all, not even anemia. Had lots of malnutrition symptoms and organ issues like kidney stones. Was obese with no serious GI effects. I Notice i no longer have sinus infections or congestion. My skin and hair are better as well as losing 90 lbs of obese weight. I had no idea how to cook healthy and started by buying gluten free processed food. Have read lots of nutrition books and now love my rice cooker and crockpot. I use my microwave to steam fresh veggies and bake sweet potatoes. Have found going organic gives me peace of mind but probably has nothing to do with gluten-free. It took a good 6 months for my blood work to be normal. If you have any thyroid issues watch your numbers as you heal. I needed less meds as it swung in opposite direction since my immune system backed down. Single ingredient foods. No sauces. I needed to go dairy and corn free as well. I use honey and cut out sugar. Fruit is my candy. I have never eaten this good in my life but i thought i had been healthy. I even reversed the arterial sclerosis i had built in my aorta from high cholesterol while undiagnosed. I think my diagnosis helped my health in many more ways than just going gluten-free.  Wish i had found this place sooner. Its wonderful. gluten-free since 2007.

LizO Rookie

Thanks for the great comments, I am chronically anemic so I guess that was a sign but it never bothered me, Dr. informed me.  I guess I am lucky I don't have worse symptoms-as I said, I have not even been in to see the Doctor yet will talk on Thursday but have immediately stopped Gluten......never realized that there was gluten in so many things.....Yikes!  It is much healthier to eat this way so I am going to look at this positively as a way to be healthier and maybe lose those stubborn 30 pounds I have been unable to drop....This is just a shock to me as I had to look it up to see what it was.....Thanks for the welcome and the tip to check out the newbie post!  Liz

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    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
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