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How Accurate Are Blood Tests For Ceoliac?

dancer-girl86

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dancer-girl86 Newbie
dancer-girl86
Posted

Hi, for the past few months I have been pretty ill with stomack pains after eating, and my stomach seems to swell up loads after I eat (usualy I have waist of 24inch but it goes up to 32inch), especialy after things like curry, pasta and stuff that contain gluten. I have been realy tired lately, and I get quite alot of mouth ulcers. My aunt has ceoliac, and because of my symptoms I decided to go to a doctor to see if I also had it. I had the blood tests for ceoliac, thyroid function and kidney function, and all of them have come back satisfactory. I was just wondering if sometimes the blood tests are unaccurate for ceoliac? Does it sound as if I still have ceoliac? I am going back to the doctor next week to discus the results with the doctor, and she wants to monitor my weight to see if I am loosing any weight. Does it sound as if I need a endoscopy?

I'd be very grateful if you could help me with some of my questions, even if it's just an oppinion! :)

thanks

cat

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Guest gliX
Guest gliX
Posted

You should definitely 100% get an endoscopy. My brother's blood numbers came back high (meaning likely to have celiac), mine came back normal (likely to not have celiac. After we both had an endoscopy, we found out I had celiac, and he didn't. Having an endoscopy is the only way to know for you sure, and some of your symptoms are common for people with celiac.

KaitiUSA Enthusiast
KaitiUSA
Posted

Which tests did you have done?

The tTG and EMA are very specific for celiac and the chance of them being false in slim to none. Most initial tests do not consist of these so I would request them. Also you could be IgA deficient, which some celiacs are. That makes an otherwise positive test negative. I would get further testing dones though because of having it run in the family and experiencing symptoms.

I would also maybe recommend a gene test be done.

KaitiUSA Enthusiast
KaitiUSA
Posted
My brother's blood numbers came back high (meaning likely to have celiac), mine came back normal (likely to not have celiac. After we both had an endoscopy, we found out I had celiac, and he didn't. Having an endoscopy is the only way to know for you sure, and some of your symptoms are common for people with celiac.

The problem with biopsies are that if they come back negative then that does not prove you do not have celiac. It just proves there is no damage yet. Did he have the basic blood panel or the full panel with the tTG and EMA done?

dancer-girl86 Newbie
dancer-girl86
Posted
  • Author

Thanks very much for the advice! Your very helpful! I only had the initial test done. When I phoned the surgery up to see the results the doctor hadn't commented about the ceoliac test only the thyroid and kidney function. I think now actualy that the doctor is still not rulling ceoliac out, and maybe thats why she didnt comment on the form. I phoned the lab up to hear the results and they said it was negative.

I dont have diarhea which I know is quite a common symptom ceoliacs have, but I do have loads of the other symptoms. I'll see next week what the doctor wants to do next. Does every one with suspected ceoliac have to have a colonoscopy as well as endoscopy. I'd absolutely hate to have the colonoscopy :unsure:

thanks alot for your help, and any more advice will be very much appreciated! Did any more of you get a negative result for the first initial test?

thanks

cat

KaitiUSA Enthusiast
KaitiUSA
Posted
I dont have diarhea which I know is quite a common symptom ceoliacs have, but I do have loads of the other symptoms. I'll see next week what the doctor wants to do next. Does every one with suspected ceoliac have to have a colonoscopy as well as endoscopy. I'd absolutely hate to have the colonoscopy :unsure:

thanks alot for your help, and any more advice will be very much appreciated! Did any more of you get a negative result for the first initial test?

thanks

cat

You do not have to have any specific symptom to have celiac. In fact, you do not have to have any symptoms at all. Alot of people actually get no symptoms but find out when other problems start or they were lucky and were able to catch it.

I never had diarrhea with celiac...I had the opposite.

As for bloodwork, my initial testing had 2 positive and 1 negative so they decided to do a full celiac panel and gene test and then that gave a very clear answer that I have celiac.

dancer-girl86 Newbie
dancer-girl86
Posted
  • Author

Forgot to add, one other symptom I have is slight depression and I am totaly exhausted. Usualy I am realy active, and dance, and I am studying in college. Last year I was realy hard working, but this year, I am totaly opposite, and have to make a big effort just to work for a while. I have always been on the go before this year. I used to do sport, long distnace running, and musical theatre, but now I dont seem to have any energy to do anything but lye down on the couch. Its pretty out of character for me to be this lazzy.

dont know if that could also be connected to ceoliac

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KaitiUSA Enthusiast
KaitiUSA
Posted

There are over 200 symptoms that can be associated with celiac disease. Fatigue is actually a very common one.

Guest gliX
Guest gliX
Posted

Kaiti, I had the Iga testing.

julie5914 Contributor
julie5914
Posted

When I participated in an IBS study (the one that informed me I had positive blood results for Celiac), they also did a bloat breath test to test for h. pylori, the bacteria that can grow in your small intestine and cause ulcers and bloat and for lactose intolerance. I was borderline positive for h. pylori overgrowth, and my doc put me on a round of strong anitbiotics with acid blocker that helped. Read up on h. pylori, and if it sounds like you, that could at least be a part of your problem and the test is not hard at all. I am not sure how expensive it is though, since I did it as a part of a study.

tarnalberry Community Regular
tarnalberry
Posted

The right combination of blood tests are pretty accurate, but in real life use, they do still have false negatives. Follow up is a good idea, and if all else fails, TRY the diet and see if it makes a difference for you.

dancer-girl86 Newbie
dancer-girl86
Posted
  • Author

Thanks very much for your advice! You have been very helpful! :D

This sight has been so helpful so far! :P

cat

dancer-girl86 Newbie
dancer-girl86
Posted
  • Author

Just wondering buth what is h. pylori? never heard of it before now? :)

KaitiUSA Enthusiast
KaitiUSA
Posted

It is a bacteria that can cause ulcers

dancer-girl86 Newbie
dancer-girl86
Posted
  • Author

Hi Thanks for answering my questions! I was just wondering does it cause discolouration on teeth, because my teeth need to be regarly polished because they get discoloured easily. The dentist never knew why my teeth were like this because I dont drink coffee, and when I drink tea its very weak, I wonder if theres a connection between this and ceoliac as well.

cat

celiac3270 Collaborator
celiac3270
Posted
There are over 200 symptoms that can be associated with celiac disease. Fatigue is actually a very common one.

Fatigue is THE MOST COMMON one...even ahead of diarrhea.

dancer-girl86 Newbie
dancer-girl86
Posted
  • Author

I was jsut looking through the other boards and I noticed that people associate mucousy BM and floating BM as being bad. I have both these, but only have seen thr mucousy one once or twice. Is this another sign of ceoliac or is that due to other intestinal diseases or conditions?

thanks for any help! B)

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