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

New To All This

haylez

Recommended Posts

haylez Newbie
haylez
Posted

Hi! I have been scouring these forums for weeks so thought it was about time I signed up and said hello!

I have had gastrointestinal issues for years and just recently had a coeliac (I'm in Australia btw) test done that came back positive;

Deamidated Gliadin IgA (EIA) 45 units Normal (<20)

Transglutaminase IgA Ab (EIA) >100 units Normal (<20)

Total IgA 2.30 g/L (0.85-3.50)

I've been trying to figure out what all this means and it's difficult as there are so many different tests, terms and measurement units used around the world. Doctors and specialists won't tell me much other than "wait and see what the biopsy shows". It's so frustrating as from what I can gather these results are pretty strong indicators of celiac disease.

Other symptoms I have (only just discovering they could have something to do with celiac disease!) are chronic sinusitus, very dry and very itchy skin, muscle and joint pain, heartburn/indigestion, tiredness, and I have suffered quite serious depression over the years. I am also quite overweight, (the specialist said he was surprised at my test results because I don't look skinny enough to have celiac disease!) and have been gaining weight over the last few years. I had to push to get the blood test done, I can't believe how much of a problem this seems to be around the world!

I am actually hoping that the biopsy comes back positive so I can start to go gluten-free and get on with my life!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hello and welcome to the board (after all that lurking ;) ) But hey, lurking is good, it means you have been reading..

Your test results are quite strongly positive for celiac. The total IgA is a control test run to make sure that you are a normal IgA producer, and validates the results of the other IgA tests. The tTG is normally quite indicative of damage to the smalll intestine, and the DGP is specific for celiac disease. For both tests a negative result would be under 20. I would be surprised if your biopsy is negative, but it can happen. It depends on the skill of the doctor and how many samples he takes and if they are from the right places. Make sure he takes at least six because the damage is not uniform - in fact can be quite patchy and no visible to the naked eye through the scope.

Your doctor still believes the old myth that celiacs must be skinny; in actual fact there are just as many over- as under-weight celiacs. For those who gain it seems the body knows it is being starved of nutrients so goes into preservation mode, saving every bit of nourishment it can get. Those who are overweight generally lose weight when they go gluten free, that is the good news. :)

Your symptoms are highly suggestive of celiac disease also. Once you have had the biopsy you can start the gluten free diet right away because any other testing does not require you to be eating gluten. If I were you I would give the diet a strict trial for at least three months regardless of the findings. :) Let us know how things turn out.

Skylark Collaborator
Skylark
Posted

Well, you're sure in the right pace. You're either celiac or on your way there. Once you have your biopsy tomorrow you can start the diet and be on your way to feeling better.

As shroomie said, TTG is autoimmune, so it means your body is attacking itself. DGP means the autoimmunity is from celiac disease. Total IgA just means your immune system is normal and the celiac tests are valid. That DGP test is highly specific for celiac and even if your biopsy comes back negative, studies show that most folks with your level of autoimmune antibodies eventually go positive if they keep eating gluten.

Keep hanging out here, ask questions, and we're happy to help with the diet!

haylez Newbie
haylez
Posted
  • Author

Thanks for the replies, it's good to have a bit of certainty about what I'm dealing with! And I think I finally understand what each test result means :) I will have to be sure to remember to ask the doctor about how many biopsy samples he is taking.

I'm going to start looking into the diet now, seems quite overwhelming at the moment, though I'm definitely looking forward to feeling better!

ravenwoodglass Mentor
ravenwoodglass
Posted

It is overwhelming at first. We are here to try and answer any questions you have. Read as much as you can and know that we do sometimes have ups and downs at first. As the others have stated with the blood results you had you definately need the diet no matter what the results of the biopsy. Hopefully you will soon be feeling much better.

haylez Newbie
haylez
Posted
  • Author

So had my biopsy today...Didn't get to see the doc before I went under so never got the chance to ask about how many samples he was taking. In recovery he told me that he believed I do have coeliacs, and that I should start the diet, talk to dieticians etc etc. I didn't think he could tell without looking at the biopsies though so I was a little surprised to hear that. I also have some inflammation of something (I was too groggy to remember) and he has given me some antibiotics to clear it up.

Has anyone ever heard of a doc confirming coeliacs just from what he saw with the endoscope? I mean they will still go by the biopsy I imagine but I will not get the results for a week or so yet.

mushroom Proficient
mushroom
Posted

Has anyone ever heard of a doc confirming coeliacs just from what he saw with the endoscope? I mean they will still go by the biopsy I imagine but I will not get the results for a week or so yet.

Yes, if the damage is sufficiently severe, it can be visible just looking through the scope. If he says he could see it, I would think you are definitely celiac, and should commence the diet right away. You do not have to wait afor the results. :)

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

Celiac.com Sponsor (A8-M):


Bubba's Mom Enthusiast
Bubba's Mom
Posted

My damage was severe and the Dr. could see it as scalloping of the intestine. Very obvious damage with the naked eye. Yours may have been similar?

Since you were put on anti-biotics, be sure to take a good Probiotic as soon as you're done with them. It will help populate your gut with the healthy, good bacteria that you need for good digestion...and help from having bad bacteria take over the newly cleaned area of your small intestine.

haylez Newbie
haylez
Posted
  • Author

Starting today! Wow I've got a big kitchen clean up to do.....

Thanks for the advice everyone x

Archived

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

Go to topic listing

  • 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. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748
    Jamie B
    Newest Member
    Jamie B
    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

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.