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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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    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
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