Discussions By Condition: I cannot get a diagnosis.

Celiac?

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: stacky
  • December 5, 2007
  • 05:02 PM

Hello, I just have a quick question. I was wondering if the results for Celiac can at one point be negative if the disease is just kicking in. I was tested about 6 months ago, my IGA was very high...but the TTG part was negative....but I still have many syptoms pointing to Celiac, and it runs in my family. An actual biopsy was never done, however. Would it be worth being tested again, or is it rare to test negative, then positive?
I dont want to just stop all gluten since it will mess with tests, and I dont even know if I have it or not. Symptoms, major finger and toe swelling, acid reflux, abdominal swelling, muscle weakness, food cravings, dizzy (occassional), joint pain, ect.

Thanks for any info on this,
Stacky:confused:

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9 Replies:

  • I don't know much about celiac (since I don't think I have it anymore, I did a gluten free trial which I'm still on).Anyway. What I do know is that celiac blood tests are NOT reliable. False negatives are very common, in fast it's been said more than 30% of celiacs are missed.
    Tranquillity 34 Replies
    • December 7, 2007
    • 04:33 PM
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  • Most celiacs have abnormal bowel movements as a major symptom; since you don't mention this, I would assume you don't have that problem. Therefore, it is hard to conclude that you may have celiac disease without more evidence. The other symptoms are potentially consistent with celiac disease, but also with many other diseases/conditions as well. In light of your acid reflux, in any event, it would certainly be useful to have a gastroscopy to see if that can shed light on what is going on. Such a procedure would normally include a biopsy for celiac. As mentioned, there are cases of false negatives (or ambiguities) in celiac bloodwork and the biopsy is the "gold standard" for detecting celiac. Yes, be sure to continue eating gluten until all testing is complete.
    Anonymous 42789 Replies
    • December 8, 2007
    • 00:51 AM
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  • Unregistered, you don't necessarily have any bowel symptoms if you have celiac. You can also be overweight & have it, since we're debunking commonly held beliefs about it... But in answer to your question, a biopsy won't necessarily show anything either. It depends on what stage the disease is in. The two tests you had are considered the "gold standard" in diagnosing celiac. There is also a blood test for a certain type of HLA (human leukocyte antigen) that can be done. But nothing is completely conclusive. If you don't have the specific types of HLA, etiehr DQ2 and DQ8, you're probably celiac-free. But if you do have them, not everyone with these HLA types gets full-blown celiac. Here's a good article for other testing options: http://www.emedicine.com/med/topic308.htm Good luck!
    aquila 1263 Replies
    • December 10, 2007
    • 08:59 PM
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  • Thanks for the responses. Hopefully I can get to the bottom of my year long illness soon and find the cause of my swelling and other intermitent issues, along with extreme fatigue. I see a Rheumatologist next Tuesday and a new internal medicine doctor as well. I wish they would have done the biopsy for Celiac when they did my scope in the first place. It's so frustrating not having answers after this long. If anyone else has more info for any of my symptoms I am open to any replies:) Thanks,Stacky
    stacky 52 Replies
    • December 11, 2007
    • 06:15 PM
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  • P.s I forgot to mention i had a bone denisity screen and it showed Osteopenia...and im 28 years old.
    stacky 52 Replies
    • December 11, 2007
    • 06:16 PM
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  • P.s I forgot to mention i had a bone denisity screen and it showed Osteopenia...and im 28 years old. Stacky,Do you have any history of eating disorders? Do you drink a lot of caffeinated and/or carbonated beverages?DOM
    acuann 3080 Replies
    • December 11, 2007
    • 09:47 PM
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  • Stacky,Do you have any history of eating disorders? Do you drink a lot of caffeinated and/or carbonated beverages?DOM No, No history of any eating disorders. I used to drink soda but not excesively. I have since cut out all caffine and most carbonated drinks, sometimes I will have a sprite but very rarely. Mostly water or propel these days. I dont drink milk except with cereal, it upsets my stomach...even ice cream does it too.
    stacky 52 Replies
    • December 11, 2007
    • 10:23 PM
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  • You might be lactose intolerance too.
    aquila 1263 Replies
    • December 19, 2007
    • 09:00 PM
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  • Someone probably already said this but I will just tell you just incase. I have celiac disease so I know alot about this stuff. I have known people who thought they have had alzihemers disease and have been diagnosed with celiac so your symptoms do not matter at all!! But there is such thing as a false negitive!!! So it would be very wise to get the biopsy since it runs in your family and you think you have it. You can ask me anything else if you have any more questions.
    Anonymous 42789 Replies
    • December 22, 2007
    • 03:39 AM
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