Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Blood Tests Negative Biopsy Positive ?
0

9 posts in this topic

I am very confused about if I actually have celiac or not. I was diagnosed last year after having an endoscopy and colonoscopy for stomach disorders unrelated to any kind of celiac disease..

All blood tests are negative however the biopsy done was positive. Although I am a 58 yr old woman who has never shown any gastric problems like most celiacs present, I do get migraines, have anemia, low blood calcium, and have osteoporosis.

I have been on a gluten-free diet for a year, as strict as I know how to be. My labs all improved as far as anemia & calcium levels. Still blood tests are neg for celiac, however biopsies once again positive, could this be something else??

0

Share this post


Link to post
Share on other sites


Ads by Google:

It is common to have false-negative blood tests; however, you can take a positive endoscopy to the bank. Yes, you DO most certainly have celiac. Your blood tests are now negative because you've been following a gluten-free diet for a year. However, if your endoscopy is still positive, it means that there is still damage that needs to heal. Congrats on improving your anemia and calcium--that's excellent! However, there may be additional damage that needs healing.

You're on the right track...and I hope you will continue to eat a strict gluten-free diet.

0

Share this post


Link to post
Share on other sites

Did the migraines go away while gluten-free?

Are other foods perhaps involved?

0

Share this post


Link to post
Share on other sites

I agree with Rosetapper above! She's said exactly what I was going to say. Please do not be tempted to eat any wheat /gluten as it will have serious consequences eventually. It can take a long time for your gut to heal - the longer you have had it undisgnosed, the more damage will have been done to the villi.

0

Share this post


Link to post
Share on other sites

Thanks for all your responses. It gives me the boost I need to continue on this gluten-free lifestyle.

The Dr. is sending me to a different nutritionalist in hopes we can find what I am missing in avoiding gluten.

I was already overweight when I was diagnosed, and eating gluten-free "comfort foods" put another 20 on me.

I am now on the gluten-free Medifast diet which takes all the guess work out of ingredients, and I've lost 18 so far.

Thanks again for your encouragement.

0

Share this post


Link to post
Share on other sites




Did the migraines go away while gluten-free?

Are other foods perhaps involved?

The migraines have decreased somewhat, not sure if it's the diet or the amitriptylin the Dr. put me on at night.
0

Share this post


Link to post
Share on other sites

The migraines have decreased somewhat, not sure if it's the diet or the amitriptylin the Dr. put me on at night.

My migraines almost completely went away off gluten. I have had maybe 3 in 3 years and they were just the beginnings - lighter headache and wierd images/light sensitivity. I was able to get rid of them quickly with target generic brand Excederin (says gluten-free on box).

0

Share this post


Link to post
Share on other sites

I am now on the gluten-free Medifast diet which takes all the guess work out of ingredients, and I've lost 18 so far.

Congrats on the weight loss! How do you like the gluten-free Medifast plan? I lost 40 lbs. on regular Medifast five years ago, and loved it. Kept it off, too, until this whole celiac-ish adventure set in last year... I actually think being on MF and then moderate-carb maintenance delayed the onset of my symptoms, because I was getting very little gluten until last year, when I went carb-crazy.

0

Share this post


Link to post
Share on other sites

Congrats on the weight loss! How do you like the gluten-free Medifast plan? I lost 40 lbs. on regular Medifast five years ago, and loved it. Kept it off, too, until this whole celiac-ish adventure set in last year... I actually think being on MF and then moderate-carb maintenance delayed the onset of my symptoms, because I was getting very little gluten until last year, when I went carb-crazy.

I understand the whole carb crazy thing, I was eating any chocolate that I could find that was gluten-free, and gluten-free donuts, etc etc, til it got way out of hand. I guess it was part depression too knowing that I'd never be able to eat breads again, and then the stigma of having to be on a special diet especially going out with friends and family. The Medifast is not bad at all, like I said it takes all the label reading work away which is nice. Finally glad to hear someone say they've been on MF and kept weight off, all I've heard is that weight came right back after stopping. Thanks for encouragement on that!
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,595
    • Total Posts
      918,301
  • Topics

  • Posts

    • In Dire Need Of Help
      Alex the good news is you have found a great site with useful information and warm support! You need to work with your doctor to get a diagnosis but there are plenty here who have had similar experiences: http://www.celiac.com/gluten-free/search/?&q=panic%20attack so it sounds like your on the right lines   Take heart that you have probably found the cause now rather than later.  Follow CyclingLady's excellent advice above and go for celiac screening asap. For tests to work you need to be eating gluten for some time. That is a scary prospect when you've finally experienced some relief but it's for a limited time period, you can get support here along the way and if you choose to you can go gluten-free at the end and get relief whatever the results.  Once you're done testing and off the gluten you will be in a much better position to nail the lifestyle. That may mean some pre-planning, maybe taking a backpack with some gluten-free snacks with you, at least until you find the places you can reliably eat at. There are apps and sites that can help and probably local support groups in NYC as well: https://www.google.co.uk/?ion=1&espv=2#q=new%20york%20gluten%20free%20restaurants With research you'll also get to know what fast food options are viable, what readily available candy bars are ok etc. I can eat Mcdonalds fries for instance, which can come in handy if I'm away from my kitchen or supplies. Most starbucks or equivalents will have at least a gluten-free snack bar. So although a pain in the arse, it's doable and the health payoffs MORE than make up for the hassle.  Good luck! 
    • to biopsy or not?
      I ordered the cookbook the same day you recommended it.  I am SO excited!  I actually cried looking through the book!  I honestly don't believe I am good at all in the kitchen.  I am lucky enough to have a husband who cooks everything when he's home.  The only thing I felt skilled at in the kitchen was baking.  I made all of my kids' birthday cakes for the last 8 years.  I was sad thinking that we wouldn't have anything good for a birthday cake.  I mean, I've tried gluten free cake from a box, but it was just ok.  It wasn't amazing the way a homemade cake can be.  So now I have hope.  Hope that maybe my non-celiac kids will enjoy a birthday cake still.  My daughter (the most-likely-to-be-celiac one) never really ate birthday cake to begin with.   So this summer is her birthday and we will find out if it's good!  Thank you for the recommendation!!!   Janis
    • antibiotic for my 6 year old- could it have gluten?
      It is probably fine.  Very few meds actually have gluten.   shows as gluten-free on this list  http://www.glutenfreedrugs.com/list.htm
    • antibiotic for my 6 year old- could it have gluten?
      My 6 year old just got prescribed an antibiotic (keflex) and is the liquid pink stuff they give kids.  I just realized I didn't ask if it was gluten free when I picked it up from the pharmacy!  Anyone know if I should be concerned?  Does that pink stuff have gluten?
    • Oat Flour making me sick?
      We suspect my 6 year old cannot tolerate gluten-free oats either... do we need to treat them just like wheat as far as CC issues?  Should I not cook oatmeal in pots that we prepare her food in?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,697
    • Most Online
      1,763

    Newest Member
    deandrade
    Joined