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Confused With Celiac Diagnosis

Ziva

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Ziva Newbie
Ziva
Posted

I am new to Celiac Disease and the forum. I'm not really sure where to post, but would like some input into my diagnosis. Thanks

On January 19, I was diagnosed with Celiac Disease. I am a bit confused in that I have no outward symptoms and think I feel fine. I think! I had a routine colonoscopy in Dec. and that was normal. The gastroenterologist was more concerned about my anemia. I was referred to a hematologist who ordered more tests. I do not have any of the GI symptoms and my biopsy evidently came back normal. I have also had a CT scan of my abdomen and that was normal. The only symptoms I can say I have are the Anemia and have found out I am also Vitamin D deficient. Since then I have been reading information and looking at this site. According to my Celiac Panel, the tTG is <3

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ravenwoodglass Mentor
ravenwoodglass
Posted

Well you are having symptoms since you have deficiencies. It does look like they caught it early which is a good thing. Celiac doesn't just affect the gut it can show up in mood and nerve issues, thyroid problems, inflammation of the joints and muscles and much more. IMHO it is better that they catch it early rather than waiting till you get to the point where you have a signature like mine and many others here on the board.

Welcome to the board and ask any other questions needed.

biancanera Newbie
biancanera
Posted

Some people are asymptomatic and some only get minor symptoms I've noticed! I wouldn't put my trust in the biopsy either, as they can miss the damaged parts even if they take five biopsies as per normal. From my bit of understanding, the blood test shows which antibodies you're making to fight off what your body thinks is an enemy, so even seeing antibodies built to fight gluten means you're probably at least gluten sensitive if not celiac itself. The best way to tell outside of a blood test is to go gluten free for a few months and see if your anemia seems to clear up.

Katrala Contributor
Katrala
Posted

Here is a very good explanation by Skylark when I asked about my results. According to them, the high IgA isn't enough to be certain of celiac if that was the only positive test. (post #13)

I'm not as familiar with understanding the test results, so yours may be completely different.

ravenwoodglass Mentor
ravenwoodglass
Posted

Here is a very good explanation by Skylark when I asked about my results. According to them, the high IgA isn't enough to be certain of celiac if that was the only positive test. (post #13)

I'm not as familiar with understanding the test results, so yours may be completely different.

The antigliadin IGA is specific to celiac. It, however, is not the most sensitive test and has a pretty high rate of false negatives. When it is positive it is positive though. The TTG is the one that can, as I understand it, in some rare occurences, be positive in other disorders.

Avalon451 Apprentice
Avalon451
Posted

Hi, welcome to the boards! You said your biopsy came back normal. Were you referring to the biopsy from your colonoscopy in December, or did you have an endoscopy in among those other tests that were ordered? You would need a endoscopy to look for celiac (because the damage shows up on the villi in the upper GI tract, the duodenum, not the colon), and the gasterenterologist would need to to take 6-8 samples for maximum accuracy of diagnosis, because, as the previous poster stated, sometimes the damage is patchy.

I've had GI issues for years, but my 3 daughters were diagnosed at the same time as I, and none of them have obvious GI issues. We would not have found out if my oldest hadn't mentioned her itchy rash (dermatitis herpetiformus) to her dermatologist on a routine visit for her acne treatment. I think I saw a statistic on the University of Chicago website that 40% of newly diagnosed adults are asymptomatic. Open Original Shared Link

Good luck, I hope you find some answers!

Ziva Newbie
Ziva
Posted
  • Author

Thanks for the information. The biopsy was from an endoscopy. I will see that Dr. on Monday for a follow up visit. I just happened to ask the nurse what the results were but haven

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Ziva Newbie
Ziva
Posted
  • Author

I had the follow up appt. with gastroenterologist yesterday to review endoscopy results. He said there was no damage and did not agree with Celiac diagnosis from hematologist. I was disappointed to find out he took a biopsy from only one place. Also, he said the antigliadin antibody which was 11 on his test and 13 on the hematologists test is not positive which means I don

Ziva Newbie
Ziva
Posted
  • Author

The antigliadin IGA is specific to celiac. It, however, is not the most sensitive test and has a pretty high rate of false negatives. When it is positive it is positive though. The TTG is the one that can, as I understand it, in some rare occurences, be positive in other disorders.

Still new at all this and trying to understand my tests! My tTG, IgA test result was < 3, can that be affected by the amount of gluten you are eating? Or does the amount matter at all? If you don't have Celiac, what would the number be? Also, if the endoscopy did not show any damage, is it worth doing any more tests to look further?

Thanks for your help,

GFinDC Veteran
GFinDC
Posted

Still new at all this and trying to understand my tests! My tTG, IgA test result was < 3, can that be affected by the amount of gluten you are eating? Or does the amount matter at all? If you don't have Celiac, what would the number be? Also, if the endoscopy did not show any damage, is it worth doing any more tests to look further?

Thanks for your help,

Hi Ziva,

Sounds like you are having an interesting time with the diagnosis. That is more the norm than an exception when it comes to celiac disease. The attached link has lots of info and a thread link for safe foods. It is an announcement in the forum sections at the top but doesn't show up unless you are looking at the whole forum vs a thread.

There is other medical testing you can do, and you can try a gluten challenge too. A gluten challenge may not be a good test for someone with no symptoms though. They call it silent celiac when there are no digestive symptoms.

Enterolabs does stool testing for antibodies. Dr.Kenneth Fine argues that the antibodies to gluten are mainly in the intestine where they do their work, not circulating in the blood stream. So that is the best place to look for them. Enterolabs testing is somewhat questioned though.

There is also a home test kit called Biocard from Canada. Biocard is not available in all areas though.

Announcement: Frequently Asked Questions About Celiac Disease

Ziva Newbie
Ziva
Posted
  • Author

Hi Ziva,

Sounds like you are having an interesting time with the diagnosis. That is more the norm than an exception when it comes to celiac disease. The attached link has lots of info and a thread link for safe foods. It is an announcement in the forum sections at the top but doesn't show up unless you are looking at the whole forum vs a thread.

There is other medical testing you can do, and you can try a gluten challenge too. A gluten challenge may not be a good test for someone with no symptoms though. They call it silent celiac when there are no digestive symptoms.

Enterolabs does stool testing for antibodies. Dr.Kenneth Fine argues that the antibodies to gluten are mainly in the intestine where they do their work, not circulating in the blood stream. So that is the best place to look for them. Enterolabs testing is somewhat questioned though.

There is also a home test kit called Biocard from Canada. Biocard is not available in all areas though.

Announcement: Frequently Asked Questions About Celiac Disease

Thanks for the link. I will do more reading.

faithforlife Apprentice
faithforlife
Posted

I did not know Enterolab tests were questionable. I've got friends who tested positive through that. Wow! Where can I read more about that?

ravenwoodglass Mentor
ravenwoodglass
Posted

I did not know Enterolab tests were questionable. I've got friends who tested positive through that. Wow! Where can I read more about that?

Enterolab testing has not been peer reviewed and many doctors do not accept the testing as evidence of celiac or gluten intolerance. There are some doctors who do recognize the testing as having value though Enterolab themselves state they do not diagnose either celiac.

The test can have value for some folks especially if they then eliminate gluten (and/or other proteins tested for) and symptoms resolve. It can also be of value for those who test false negative on blood tests but still feel they have a problem with gluten and need, for whatever reason, to see something on paper saying they need to avoid gluten to stay compliant with the diet or help family members understand.

Going only off Enterolab testing can however present a problem if folks only test with them and later decide they want formal testing through their doctor. If someone has already gone gluten free then a lengthy gluten challenge would be needed for blood tests and biopsy.

While this testing can be part of the diagnostic picture IMHO folks should get the blood test and biopsy (if they choose to have one) before Enterolab testing and dietary trial.

If you want more info and opinions on Enterolab maybe start a new thread or do a board search as there have been discussions previously.

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    • JudyLou
      Seeking advice on potential gluten challenge

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      Seeking advice on potential gluten challenge

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    • JudyLou
      Seeking advice on potential gluten challenge

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      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
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