Blood Test Normal

[Fairy Dancer]

Ok, my dr did not detail exactly what blood tests for celiac were done and I was only told that the test that was done was normal. However I went gluten free as a trial some 2 weeks before the test. I did try to put wheat etc back in 3 times after that just before the test but had a bad reaction to it each time so pulled it back out again. I am also starting to feel better without gluten and wheat etc in my diet. My fatigue is starting to ease up (although I am still having issues with some dizziness), my stomach symptoms have started to settled (until i eat either gluten or fresh sweetcorn again) and after nearly 4 weeks now of being on the diet I am feeling half human again, even if I don't feel completely well yet.

Could the tests have been wrong and should I stay on the diet anyway, regardless of what my dr says?

I would personally prefer to stay on the diet, but how do I explain it to people when my tests were normal? Especially as people can sometimes give you flack for being a picky eater lol.

[Bubba's Mom]

Some of us are celiac but our blood tests in the normal range. My Dr did an endoscope and found severe villi damage. She sent biopsies and it was confirmed celiac.

Even with the scope it's not always found. The wrong area could be biosied or the damage might exist out of the range of the scope. The small intestine is pretty long.

If you did a gluten-free diet and started to feel better, and reacted when gluten was added back in I'd say it's best to consider yourself Celiac..or at the very least intollerant. Listen to your what your body is telling you.

There are some intersting threads here on lectins and Oxylate high foods that lead to leaky gut. If you find you are still having problems it couldn't hurt to try out some of those restrictions?

Unfortunately there doesn't seem to be a fast easy way to ferret out all of your sensitivities aside from doing your own detective work?

[Fairy Dancer]

My dr is doing no further tests, so no biopsy, because the blood tests were normal.

I will look up lectins and oxylates. I have never come across oxylates before but have heard mention of lectins as I am trying a slightly modified version of the Paleo diet. But still don't know much about them.

[Fairy Dancer]

Despite having had gut symptoms (bloating, diarrhoea with soft pale stools at times, acid reflux, stomach pain and abdominal cramps etc) and fatigue (tired, dizzy, attacks of vertigo etc) issues now for over 6 years I have never had an endoscopy etc. My dr just labelled it as IBS after doing routine blood tests.

They also labelled my fatigue as depression even though I don't have the symptoms of clinical depression (ie have not lost interest in my hobbies etc). Thing is they keep giving me therapy for the fatigue and err it doesn't work. I was still feeling like death warmed up most days (so much so that some days I couldn't get up out of bed due to the dizziness and vertigo). On the gluten free diet my dizziness has improved a bit and I am now at least able to get up and move around! My last dr did at least test for celiac with the routine blood tests (because I have a brother with diagnosed celiac disease) but didn't specify which tests were done exactly.

[Jenniferxgfx]

I had one blood test and a biopsy 2 years later and both were negative. I struggle with what to call myself (and started a thread about it too). The fact is that if gluten makes you sick, you don't need a doctor's permission to stop eating it. Listen to your body, because it knows best.

I had a lot of dizziness and fatigue, and it's from anemia (classic celiac sympom). Unfortunately, my anemia shows up normal or borderline low in routine blood work. I needed to get a painful and traumatic bone marrow biopsy to diagnose low iron stores. I needed IV iron, but now that I eat foods that hurt less, I can supplement and eat healthy and control my iron easier. also, now that I'm gluten-free, I can stomach higher doses of iron without any discomfort, so my levels feel like theyre coming up fast.

It gets easier to say "I have celiac" or just "I can't eat wheat" without proof as time goes on. Really, it's no ones business what the details are. Your health is more important than their opinions.

[mushroom]

Ok, my dr did not detail exactly what blood tests for celiac were done and I was only told that the test that was done was normal. However I went gluten free as a trial some 2 weeks before the test. I did try to put wheat etc back in 3 times after that just before the test but had a bad reaction to it each time so pulled it back out again.

This lack of gluten, I am sorry to say, could have influenced your negative test results. You really should get a copy of the results from the doctor's office, and if they are anything other than solidly negative I would consider celiac a definite possibility. But apart from celiac, there is gluten sensitivity for which no test has been devised, and is a category many people on this board fit -- never diagnosed but still cannot eat gluten.

[pain*in*my*gut]

Despite having had gut symptoms (bloating, diarrhoea with soft pale stools at times, acid reflux, stomach pain and abdominal cramps etc) and fatigue (tired, dizzy, attacks of vertigo etc) issues now for over 6 years I have never had an endoscopy etc. My dr just labelled it as IBS after doing routine blood tests.

They also labelled my fatigue as depression even though I don't have the symptoms of clinical depression (ie have not lost interest in my hobbies etc). Thing is they keep giving me therapy for the fatigue and err it doesn't work. I was still feeling like death warmed up most days (so much so that some days I couldn't get up out of bed due to the dizziness and vertigo). On the gluten free diet my dizziness has improved a bit and I am now at least able to get up and move around! My last dr did at least test for celiac with the routine blood tests (because I have a brother with diagnosed celiac disease) but didn't specify which tests were done exactly.

I think it's time you found a new GI doc!! Any doctor that fails to do a thorough work-up (including an upper and lower scope) to rule out any other possible cause of your issues before labeling you with IBS is not a good doctor. As far as your blood work goes, yes, being off of gluten could have caused them to be falsly negative. You need to ask for the new DGP test that is more specific than the older AGA tests (but you would have to go back on gluten for that). You also need to see if you have the genes for Celiac. You have a first degree relative with confirmed Celiac, that in itself puts you at a huge risk of having it!

Sorry you are going thru this! Definately get a new doc, hun!