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

Do I Have Coeliac?


Taylahmai

Recommended Posts

Taylahmai Newbie

Hi all. I'm new to the boards and am hoping someone can provide me with some advice, because my doctor has been pretty useless!

I have had blood tests and an endoscopy to test for coeliac (in Australia its called coeliac, but in the US celiac.... strange). My Tissue Transglutaminase IG levels were normal but my Gliadin IGA levels were slightly elevated (5.4 g/L and normal is between 0.89 - 4.46 g/L). My endoscopy showed no damage to villi so I was told I didn't have coeliac disease and that was that.

But I've since learned (through doing my own research, no thanx to my doctor) that raised IGA levels means I am gluten intolerant - is that correct? So whats the difference between gluten intolerance and coeliac disease? I went to another doctor today about my rasied IGA levels, and he told me he had no idea why they could be raised if the endoscopy showed no sign of coeliac. He seemed to think my raised IGA levels could be due to something else?

I'm reaalllly confused. Is someone able to shed some light on this?

Thank you :)


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator
;) well--you can be celiac and not have full blown damage in your intestines as of yet, or the scope may not have found the damages area, that's always a possibility too----the difference between the 2----a sensitivity means just that--you are sensitive to gluten and in my opinion should go gluten free--i also feel that gluten sensitive and intolerant go hand in hand--i think with a gluten sensitivity you must go gluten free--i dont think there is a middle ground--i feel that all of us would be better off with out gluten in our diets---i dont have a doctor diagnosis and i will never go back to gluten--i have been gluten free for almost 4 yrs now---my sister is a doctor diagnosed celiac and this last nov my dad was put on a gluten-free diet too--i didnt have insurance when me sister went gluten-free and she and i decided together that gluten is my problem too--my life has changed so much since that day--i will never go back-----------have you tried gluten-free to see if you feel better---omitting gluten from your diet will not hurt you, not in the least---give it a try and keep us imformed---------deb
KaitiUSA Enthusiast

You may have celiac. If your IgA levels were elevated that usually has something to do with gluten. It is a pretty specific test. Your body may either not have damage or they could have looked in the wrong spots. I know many people that have had damage but the doctor either didn't go down far enough or get the tissue from a damaged place.

I would really suggest an Enterolab. They test for all sorts of intolerances and allergies. They test for celiac, the celiac gene, malabsorption and so forth. Many doctors don't look at this for diagnosis yet but in my opinion it is a good test. I don't know if you can get one in Australia but I assume you could. The site is Open Original Shared Link to find out more info about it.

That might help you figure out what is going on.

You could always try the diet and see how you feel. Some people on here don't have a medical diagnosis but are 100% gluten free and are self diagnosed. Doctors really haven't been much help I know with me I switched doctors many times looking for an answer. Don't rule celiac out just yet.

Hope you get an answer soon :D

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Going for upper endoscopy today

    2. - Scott Adams commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

    3. - Scott Adams replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Going for upper endoscopy today

    4. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Guinness, can you drink it?

    5. - maryannlove commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,272
    • Most Online (within 30 mins)
      7,748

    SLowe
    Newest Member
    SLowe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      I’m glad you have a clear answer.  Some endoscopes have enough magnification for the doctor to see the damage during the procedure.
    • Scott Adams
      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have no issues with Daura Damm, but those who are super sensitive might.
    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
×
×
  • 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.