• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

I am so confused and need help!! I had a biopsy done on March 4, 2013. Immediately after the procedure, the Doctor came in the room and mentioned that he thought it could be Celiac Disease but wasn't positive yet. He took some blood and sent me home. On March 13, 2013, I received a phone call from the Gastroenterologist office confirming that I do have Celiacs. The nurse told me that I would need to begin a gluten-free diet immediately and she mailed me some more information on Celiac Disease and eating gluten-free. I stopped eating gluten that day and even went as far as purchasing gluten-free makeup/shampoo/lipstick etc. I went in for a follow-up appointment with my Doctor last week and shortly after walking in the room he said, "From your biopsy results I think you MAY have Celiacs. Do you know what that is?" I WANTED to say, "Yes, I know what that is because your office told me I had Celiacs so all I've done for the past month is read about it!!" But I just said that I did know what it was, and I mentioned that they had called and confirmed that I had it. He said that IF I do have Celiacs, it's only a "tiny bit" because it only partially showed on my biopsy and he wants to run blood work (he didn't mention the blood he took in the hospital) to "confirm" whether I have celiacs or not. He told me to go back to eating gluten for one week and then I will have the blood work done that will confirm this possible diagnosis.

 

Here's my issue. Everything I am reading online says that blood work is done FIRST, and that the only certain diagnosis is biopsy. Is this true? I've also read that if you're following a strict gluten-free diet, it takes way longer than one week eating gluten for anything to show up in a test result confirming Celiacs. I am really frustrated with this Doctor and his office. Why did they call and say I definitely had it and to go gluten free immediately if my test results were inconclusive? 

 

I started eating gluten again the day of my appointment, 4 days ago, and I feel so sick. All of my symptoms that had gone away since going gluten-free are back. I'm going back  to eating gluten-free and I'm going to call the Dr. office on Monday to see if I can get some better clarification.

 

Any advice/thoughts would be greatly appreciated!!! I am so lost. 

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Yes,  it does seem as if in your case things have been done a little bass ackwards.  Positive blood, confirming biopsy is the normal procedure.  Perhaps your doctor forgot you had not had the blood tests done, and the blood taken at the hospital was to test for nutrient deficiencies.

 

Nonetheless, celiac is like pregnancy in that you can't be a "little bit" celiac; either you are or you aren't.  You need to get a copy of the pathologist's report on the biopsy and see what he had to say.  It could be that you had inflammation and suspicious lymphocytes, but not actually any involvement of the villi, which is the normally accepted positive sign of celiac, the other two being potential precursors.  If he took several biopsy samples and it only showed on one of them, this is not unexpected because the disstribution is often patchy and is a reason that sometimes people who actually do have celiac will show up as biopsy negative.

 

Do get a copy of the pathology report and let us know what it says.  And by the way, welcome to the board!

Share this post


Link to post
Share on other sites

Yes get a copy of the pathologist's report.

I always ask for copies and found stuff on them that a specialist wasn't telling me that was important,

and even mistakes on other reports.

 

Also get on the horn (the phone) to find out what blood tests were done and where are the results.

Sometimes the labs can forget to send them and  your busy doctor forgot about them. :wacko:

The lab might say they can't tell you, so say: "that's fine but can you send a copy to my PCP?"

Then get a copy from your PCP.

Share this post


Link to post
Share on other sites

Thanks for the replies!! I'm definitely going to start calling on Monday morning to see if I can get a little more information. I will get copies of the forms and see what I can figure out. I have been so frustrated with him, I kind of want to try to get a different doctor!

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
      108,915
    • Total Posts
      943,484
  • Member Statistics

    • Total Members
      67,081
    • Most Online
      3,093

    Newest Member
    Hinder1
    Joined
  • Popular Now

  • Topics

  • Posts

    • I didn't mean my world fell apart because of celiac but because of something else. Finding out about celiac disease actually gave me hope.
    • @PosterboyOne thing is though I never get heartburn. And this only happens when I've consumed something for consecutive days, like I had the bananas and too many nuts. But if PH has something to do with it then maybe when I'm eating more vegetables and broth that's why I usually feel much better, it's more alkaline. On a ph urine test whenever I'm feeling like this I ALWAYS have a reading towards the acidic part. When I feel better it always goes towards the alkaline level and usually in the ideal level. Part of it started when I was under high stress in the first place. A few years ago. I couldn't eat as much/well because I was very worried about things. The realization about celiac came later but basically my world fell apart and I've fought but never felt really okay again. Then at the worst before I knew about celiac disease I was vomitting for days. Now I can eat many more foods but it's still very touchy if I don't strictly eat vegetables, broth, lots of water and small amounts of fats and protein. I'm scared to take anything artificial. I've only recently been able to take very small amounts of probiotics. Is there no way to repair your stomach acid without taking pills? Would going on a strict alkaline diet help?  I read everything you wrote except the link which I don't know if I can concentrate right now. Thank you.
    • I have seen this a few times....run a gluten free bakery....one of my previous customers has the disease, but he gawks at my prices and then goes eats from other stores and consumes gluten products.....I tried offering freebies left over items to get him to switch....been watching him degrade over the past 3 years. He now walks...odd like Frankenstein with locked knees and a wobble and seems be much less active not appearing at this job few days a month now....I do worry about these people. Celiac effects everyone different some violently, others do not see the damage or have grown so use to the issues that they consider them normal. It is a sad thing to see. I have seen improvement in my own body following a strict diet and regime and see major consequences when I trip ......I can not imagine anyone cheating but my reactions are bad with many side effects. Celiac being a AI disease can cause other secondary complications I am all to aware of if  you cheat, mess up.
    • I don't know, it's probably best described as a lot of bile, sometimes yellow, sometimes green (sorry) and a lot of mucus (sorry_) and when I eventually throw it up  (if it gets to that point) it's burning in my throat, so I equate it with acid. Also because of the term "antacid" I think of it as a lot of acid but I guess it's a lot of bile, mucus and I thought the extra stomach acid produced dealing with whatever food I ate. I've done the wrong thing though because now I'm in the pain I was dreading, with swollen eyes and everything and really bad depression now and hopelessness. I keep feeling like it's all futile and too late. That however hard I try I can't figure everything out in time to be well.
    • I'm a scientist to be  (currently a student..) And i know how you feel
  • Upcoming Events