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

I Have News


Mateto

Recommended Posts

Mateto Enthusiast

Hello everyone,so of you know how I've been having problems getting a proper diagnosis. Today I finally got my blood results back, and they were negative for coeliac disease.

She will not send me for a biopsy, but she said I was gluten intolerant and sensitive. However, I know I have more symptoms than this, and I have diagnosed myself, I suppose you could say, with coeliac. She told me to stop eating gluten, which I've been gradually doing the past few days, and today is my first fully gluten free day! So here I am, excited that within a few months, I might actually feel better for once :lol:


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Well, I'm happy if you're happy :).

I dont remember, did you have vitamin deficiency panels run? That maybe the only thing to look at, if it wasn't already.

Im glad you're excited and I wish you much luck,

Mateto Enthusiast

Yes I did. I was told I'm anaemic....ANOTHER symptom of coeliac disease the doctor ignored. :P

pricklypear1971 Community Regular

Well, take some iron (I'm assuming you're talking about iron) and make them retest it in 6 months.

IrishHeart Veteran

There are several forms of anemia--

B-12 deficiency, Folate deficiency, Iron deficiency.

What exactly did she say??

How much did she say to supplement with?

Mateto Enthusiast

My iron was HIGH on the last test....hemaglobin (or whatever) was low. Which doesn't make sense, I was re-tested for that only today, because she said the results were probably wrong. But yet I'm still anaemic.

Anyways I'm not too concerned, because I've been going gradually gluten free the past few todays and today completely. One symptom has stopped! I know it won't be for a few months until feeling completely better, but my only challenge is getting my family members to take this seriously.

I can NOT stress how important cross-contamination is. THEY JUST WON'T UNDERSTAND!

pricklypear1971 Community Regular

You need to get a copy of all your labs. Plus the retest.


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



Celiac.com Sponsor (A8-M):



Mateto Enthusiast

You need to get a copy of all your labs. Plus the retest.

I think I'd have better luck trying to drown a fish :lol:

My Doctor wouldn't let me see them!

Because of our free healthcare under the MCP/NHS, Private practitioners are few and far between. My Doctor (I feel) is only in it for the money, but she told me that apparently she's "told me everything she can" <_<

She also said my hemaglobin will fix itself eventually. I really don't understand her, she gives me a million different answers. The main thing is: I'm on the road to feeling better :)

pricklypear1971 Community Regular

I think I'd have better luck trying to drown a fish :lol:

My Doctor wouldn't let me see them!

Because of our free healthcare under the MCP/NHS, Private practitioners are few and far between. My Doctor (I feel) is only in it for the money, but she told me that apparently she's "told me everything she can" <_<

She also said my hemaglobin will fix itself eventually. I really don't understand her, she gives me a million different answers. The main thing is: I'm on the road to feeling better :)

There must be a law that forces them to disclose.

Seriously.

Mateto Enthusiast

I think so!

She called me today because I had more bloodwork done. Out of an act of kindness, at least she told me my hemaglobin is gone back to normal and so is my iron.

I haven't been gluten-free for very long, but I was when I had these tests, so that might have something to do with it.

This doctor is only filling in for my doctor who is in Australia at the moment, so I won't pursure anything legal yet. My normal doctor is excellent, she knows what she is doing, so I know if I ask her for my records she'll probably give me a copy :D

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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.