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

Advice For Diagnosis


Mera

Recommended Posts

Mera Newbie

Just joined & need advice.

For a year now I have had abnormal blood test results & GI problems along with anemia, fatigue, muscle pains, confusion, & I'm sure there's more. My blood test continue to show that IgA is High and IgG is VERY high, High levels of protein (in blood) Postitive Rheumatoid Factor. I have also had problems with keeping my blood sugar levels up. So with no luck on finding answers with my PA I searched the internet & learned about Celaic. Approached a doctor wanting a test and was told, "If you think you're allergic to wheat , then don't eat Wheat, barley, rye for 4 weeks & see how you feel. After that re-introduce wheat & see if it bothers you." So I come home & research this & now am wondering,, should I see a GI doc or at least have blood work done first? Will 4 weeks be long enough to make a difference?

Thanks for any advice,,,,,

mera

NOT DX

gluten-free- Feb 25,08


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

It depends on if you want an official diagnosis.

If you want an official diagnosis, you need to keep eating gluten and get the blood tests run.

If you don't want/need an official diagnosis, go by the dietary response.

There are pros and cons to both. You can always go gluten free after you have the testing done, regardless of the results.

Its harder to re-introduce gluten, after being off of it for awhile, and be on it long enough for accurate testing. So if you want testing, go back to gluten and get tested ASAP.

Best of luck, and welcome to the board!

nikky Contributor

If you want/need an official diagnosis then you need to get back on gluten straight away and then get tested, but be aware that even if the blood tests are high then the biopsy may be clear (false negative). If that happens your doctor may completely disregard coeliac even though you have got it. (If your lucky they will go with the bloods and the symptoms).

If you dont want/need to get an official diagnosis then go with the dietry response, but remember that it may not just be gluten that you are intolerant to, a lot of people with celiac disease also have problems with lactose/dairy, and have vitamin and/or mineral difficiencies.

Good luck and welcome to the forum ;)

Mera Newbie

Thanks for your replies! I'm going to continue to give this a GO. I don't guess I NEED an official diagnosis. If going Gluten Free helpsthen I'll stick with it, but I am concerned about my 2 children.

nikky Contributor
Thanks for your replies! I'm going to continue to give this a GO. I don't guess I NEED an official diagnosis. If going Gluten Free helpsthen I'll stick with it, but I am concerned about my 2 children.

celiac disease does run in families so id say that if you respond to the diet and they are getting sick you should try them on a gluten free diet as well to see if they respond

alternatively you could get tested (just bloods would be enough really) and if you have it then chances are they will

ravenwoodglass Mentor
Thanks for your replies! I'm going to continue to give this a GO. I don't guess I NEED an official diagnosis. If going Gluten Free helpsthen I'll stick with it, but I am concerned about my 2 children.

It sounds like you have a smart PA there. If you get results from the diet he will most likely make note of it and state that you have either gluten intolerance or celiac in your record. With your history I suspect you will be a different person after a few months gluten free. You may even find your RA is relieved or even goes into remission. You have found a good spot for info and support, gluten can hide in a lot of places and with the RA you want to be as strict as possible. Make sure you check all your meds, script and OTC, cosmetics and toiletries. I hope you are feeling better soon, and welcome.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.