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How Do I Know If I Really Have Celiac?

chrismilne

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chrismilne Newbie
chrismilne
Posted

Have no idea if i really have Celiac...some backgrround:

I was having all kinds of stomach problems, and after every test under the sun the only thing positive was one Celiac test and a Hydrogen Breath Test. So i was put on Xifaxin (spelling?) and started a Gluten Free Diet. I saw no improvement for a month or so and slowly started to feel a bit better. I have now started feeling worse again (i have an appt with a new GI dr in a week+). From dec 25-jan 7 i was overseas and it was too difficult to follow a gluten free diet (no one has heard of it and the foods just don't match). So I finally gave up and when i got home immediately went back on the diet. It's now been 2 weeks since back on the diet and teh past few days is when i started feeling worse again. In the mean time I went to my general Dr who did another Celiac Panel and a check for Lupus (ANA) and some vitamin levels. Everything came back normal (or negative, INCLUDING Celiac) except low Vitamin D (not that low though).

Now the question is did i ever have Celiac? My general Dr said there are false positives or it could be a result of being gluten free for a few months (but i was only truly gluten free again for about a week prior to the blood test since the 2 weeks before that I was overseas and not on the diet).

I'm at a loss, i hope the new Dr has some ideas...i will also ask to be checked again for SIBO but it seems that is a difficult condition to accurately diagnose (as it can be Celiac).

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mushroom Proficient
mushroom
Posted

Have no idea if i really have Celiac...some backgrround:

I was having all kinds of stomach problems, and after every test under the sun the only thing positive was one Celiac test and a Hydrogen Breath Test. So i was put on Xifaxin (spelling?) and started a Gluten Free Diet. I saw no improvement for a month or so and slowly started to feel a bit better. I have now started feeling worse again (i have an appt with a new GI dr in a week+). From dec 25-jan 7 i was overseas and it was too difficult to follow a gluten free diet (no one has heard of it and the foods just don't match). So I finally gave up and when i got home immediately went back on the diet. It's now been 2 weeks since back on the diet and teh past few days is when i started feeling worse again. In the mean time I went to my general Dr who did another Celiac Panel and a check for Lupus (ANA) and some vitamin levels. Everything came back normal (or negative, INCLUDING Celiac) except low Vitamin D (not that low though).

Now the question is did i ever have Celiac? My general Dr said there are false positives or it could be a result of being gluten free for a few months (but i was only truly gluten free again for about a week prior to the blood test since the 2 weeks before that I was overseas and not on the diet).

I'm at a loss, i hope the new Dr has some ideas...i will also ask to be checked again for SIBO but it seems that is a difficult condition to accurately diagnose (as it can be Celiac).

I don't think the two weeks back on gluten, followed by two more weeks off gluten, would be sufficient to reactivate sufficient antibodies to measure on the blood test. Just the two weeks off, alone, would be enough to invalidate it and two weeks on not long enough. I would have expected the results to be negative myself. They say you need to be eating the equivalent of four slices of bread (maybe more depending on your weight) for at least 6-8 weeks for the testing to be valid. Which original celiac test was positive, what was the value and the lab range? If you could get a copy of your results and post them here it might help in offering you an opinion.

Once you test positive for celiac it doesn't change. You want future tests to be negative because it shows the diet is working. The fact that you felt better gluten free is a good indicator in and of itself. Your low level of Vit.D is also common in celiacs. Did you find out if the new GI doctor is knowledgeable about celiac disease? This is important because so many of us have gone from doctor to doctor, fruitlessly, because they all had very antiquated ideas about it or did not even think of it as a possibility.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I'm not expert, but everything I have read has said that you don't really get false positives on the celiac blood tests. It's much more likely to get a false negative, especially if you have been on a low gluten diet or did a gluten free diet for a period of time.

I'm not sure I trust the knowledge base and level of your doctor regarding this issue.

woodnewt Rookie
woodnewt
Posted

Have no idea if i really have Celiac...some backgrround:

Now the question is did i ever have Celiac? My general Dr said there are false positives or it could be a result of being gluten free for a few months (but i was only truly gluten free again for about a week prior to the blood test since the 2 weeks before that I was overseas and not on the diet).

I'm at a loss, i hope the new Dr has some ideas...i will also ask to be checked again for SIBO but it seems that is a difficult condition to accurately diagnose (as it can be Celiac).

I do not know about false positives with the blood test, but as far as I know the biopsy is the only way to be 100% sure. You would need to consult a gastroenterologist. It is really important to know if you do have celiac or not, because the gluten free diet is something you are going to have to adhere to strictly and for life. Also, if it is something else making you ill and not celiac, you need to be diagnosed properly and treated.

Are you still consuming gluten? If so the biopsy would be the best way to know.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I do not know about false positives with the blood test, but as far as I know the biopsy is the only way to be 100% sure. You would need to consult a gastroenterologist. It is really important to know if you do have celiac or not, because the gluten free diet is something you are going to have to adhere to strictly and for life. Also, if it is something else making you ill and not celiac, you need to be diagnosed properly and treated.

Are you still consuming gluten? If so the biopsy would be the best way to know.

Actually the biopsy isn't 100% either unfortunately. The doc has to take enough samples to get the damaged tissue. You also have to be consuming enough gluten for it to be positive.

chrismilne Newbie
chrismilne
Posted
  • Author

thanks for the replies. I have been back on the gluten free diet. I have an appt with a new dr on monday (someone recommended from the someone on the board). If i still don't feel confident there is a celiac research place in baltimore, md i think which is drivable if i take a lot of time off work for that day.

I will update you with what the Dr suggests for the next step.

sandsurfgirl Collaborator
sandsurfgirl
Posted

thanks for the replies. I have been back on the gluten free diet. I have an appt with a new dr on monday (someone recommended from the someone on the board). If i still don't feel confident there is a celiac research place in baltimore, md i think which is drivable if i take a lot of time off work for that day.

I will update you with what the Dr suggests for the next step.

Good luck! No matter what, the tests we use are just not that reliable unfortunately. You have to get what testing you are willing to endure and then ultimately make up your own mind in my opinion. Read enough people's stories and you'll see that it's just plain complicated.

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Reba32 Rookie
Reba32
Posted

where exactly "overseas" where you? From everything I've read every single European country is far more cognizant of Celiac Disease than the US or Canada are. I would find it hard to believe that it's never been heard of.

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