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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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    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
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