Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Going To The Doctor Tomorrow-What Test(S) Should I Have Done?


desperateforhealth

Recommended Posts

desperateforhealth Apprentice

About a month and a half ago I decided I was fed up with my stomach problems and did enough research to suspect gluten intolerance/celiac's, so I decided to go gluten free. My stomach is happier (although it might just be because I eat healthier now), but I've decided I'd like to get tested so that I can know for sure. I'm worried about people thinking my self-diagnosing isn't legit. Especially if I am still having problems, even if it's fewer than before.

So my question is... what test(s) should I request from my doctor so that I can know if I have gluten problems? Obviously I am particularly interested in ones that don't require you to have gluten IN your system, but I am also worried about price. Any advice and information is very much appreciated.

Thank you so much for your help.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Unfortunately both blood tests and endoscopy/biopsy require you to have gluten in your system.

If you are looking for a Celiac Disease diagnosis, you will have to go back on gluten (some say a substantial amount of gluten for a period of at least three weeks...my Celiac Doc told me a month).

Since you are gluten-free, perhaps you should stay that way for a few months then decide if it is worth the set-back for a diagnosis. Also at by then you may be ready for a gluten challenge to confirm for yourself that gluten is a problem for you.

desperateforhealth Apprentice

Thank you!

Do you think I need to wait a few more months before being able to tell if gluten was affecting me if I reintroduced it?

GottaSki Mentor

hard to say. You may find gluten bothers you after only a short time gluten-free.

The reason I suggest some time without gluten is to see if you have even more improvement to your health since you are already gluten-free.

There are no concrete formulas for celiac diagnosis - many have negative celiac panels and positive endos or vice versa.

The standard path is celiac panel/bloodwork followed by endoscopy with several samples taken of from different locations. Since you are already gluten-free - you'll have decide when you want to proceed with attempting to get an official dx which will require gluten in your diet for weeks prior to testing.

desperateforhealth Apprentice

That makes sense, thanks.

If the bloodwork is positive, why do people still have to get the endoscopy?

GottaSki Mentor

To confirm diagnosis - for many giving up gluten for life is not something they will do without an official dx. The endoscpy can also be helpful in determining the level of damage. Personally my damage was quite severe so I have had follow up endos.

Again you will find of full spectrum of paths that have led folks to the gluten-free life - some with official celiac or gluten intolerance dx / some without. Some have improved health without testing and don't feel they need a dx to stay gluten-free.

desperateforhealth Apprentice

Ah, yes. Thank you, that is quite helpful.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - oscarbolduc posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Advice while waiting for testing


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,882
    • Most Online (within 30 mins)
      7,748

    Nicole King
    Newest Member
    Nicole King
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • oscarbolduc
      Hello, I'm relatively new to this, so I'm hoping to get some advice. I went gluten-free for most of April and felt the best I've ever felt. I’ve been experiencing strange symptoms since last August, but they all disappeared when I eliminated gluten. However, to get accurate blood test results, I’m back on gluten for a month (all of May), and I’m honestly feeling miserable. I’ve been dealing with joint pain, bloating, diarrhea, and just overall discomfort. Does anyone have tips on how to manage these symptoms during this month? What has helped you with joint pain? 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.