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haylez

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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!

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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. :)

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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

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      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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