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Lirren

Off Gluten Before Blood Test

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I know this is a no-no! It wasn't something I did deliberately. I followed my doctor's instructions and kept eating gluten until my blood was drawn, and then stopped eating gluten to see if it improved my symptoms.

 

However, the local lab messed up the labels on my vials, so the receiving lab couldn't use them. I was nearly a week into eating completely gluten-free when they called me back and told me I had to come back in for another blood draw.

 

I tested negative for celiac, but based on results from my small intestine biopsy, my doctor still thinks it is more likely to be celiac than any of the other causes of small intestinal inflammation. He is following up with genetic testing, despite it being less specific.

 

Is it possible that the test was negative because I'd been off gluten for six days? I didn't think antibodies disappeared from your bloodstream that fast.  Unfortunately, I can't say which serological tests were run, and whether they looked at total serum IgA. I intend to ask the lab for more information today.

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If you were regularly eating gluten up until then, I would say no - 6 days shouldn't matter at all.  Keep in mind, people can get negative bloodtests with a positive biopsy - and vice-versa.  There is also the potential for non-celiac gluten intolerance in which you have all the symptoms but no villi damage. 

FWIW...  I went gluten-free the day my bloodtest came back positive (just couldn't eat it knowing it was poison for me) and didn't have the biopsy until 3 weeks later - and the biopsy still showed moderate to severe villi damage.

 

The true test will be if your symptoms clear and you feel better after going gluten free.  Some call the biopsy the "gold standard" but I see the results in your overall health as the "gold standard".

 

Good luck.

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I would guess that no, 6 days would not be enough to lower your antibody level to normal, but you could be one with low levels who react quickly. Plus some tests revert to normal faster. DGP IgA and DGP IgG detect celiac earlier and seem to go to normal faster on a gluten-free diet.  The EMA test is positive only when damage is advanced and would probably be the next to return to normal.  The tTG IgA and tTG IgG take longest to drop; it's that one that can take years to get lower, especially if the patient has other issues that can elevate it like diabetes or thyroiditis.

 

I think it's wise to look into whether you have adequate IgA, as you mentioned.  Low IgA is more common among celiacs than it is in the regular population.

 

If you have intestinal damage, I would assume it is celiac. It's good you are embracing the gluten-free diet. Keep track of your symptoms and foods over the next few months, and that should confirm or deny if celiac is the cause.

 

As for the genetic tests, keep in mind thatsomewhere around 90-95% of celiacs have the DQ2 and/or DQ8 genes. There are a few celiacs who, genetically speaking, shouldn't have the disease yet they do.  You response to the diet will probably give you your best answer - just make sure you give it a few months as some of us take many months to get well.

 

Best wishes and welcome to the board.

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Thanks for the responses! It's so great to have insight from those with more experience in the matter. This forum has been a godsend in the short time since I've found it.

 

It sounds like everyone's experience is different, but that it's not uncommon for people diagnosed with celiac to say "a-ha, that's why I've had these problems for years and years!" This has all come on very suddenly for me.  In October 2013 I had a six-hour bout with gastroenteritis, and the following week I started having increasingly awful abdominal pain. I've been in near-constant pain since then, and developed severe anxiety (I am somewhat anxiety-prone but have never been on a prescription drug for it before), and started having panic attacks.

 

The past three months have been a bout of attempts to treat everything from diverticulitis to IBS, and included CT scans and MRIs and colonoscopies and endoscopies and gastric emptying tests that all turned up normal. But my doctor found small bowel inflammation in the biopsy. I'm not sure if that's the same thing as damage, as my doctor is abnormally difficult to communicate with. But blood tests have now eliminated Crohn's and IBD from the diagnosis (yay!) and he thinks the biopsy looks more like celiac than SIBO despite the negative blood tests, so genetic testing is the next thing on the list. 

 

I'm trying not to jump to conclusions or throw out my now-quarantined rubbermaid box of wheat products. But as NoGlutenCooties said, maybe the most telling thing is that eliminating gluten from my diet is the first thing that's made me feel better. I have had no more panic attacks and my abdominal pain has decreased significantly, though not yet totally. I can eat again (I lost 10-15 pounds almost immediately after the gastroenteritis) and I have energy again. Maybe I'm just finally shaking the damage from the stomach bug, but the timing certainly is suspicious. 

 

We'll see!

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Lirren -

 

For some reason this isn't letting me reply directly to your last comment... you said, "I'm not sure if that's the same thing as damage..." - referring to the inflammation that was found during the biopsy.  When I had my biopsy my doctor could see the inflammation - and I have a picture of it on my fridge.  :)  The lining of the small intestine looks bumpy - kinda reminds me of the surface of a Matza cracker.  The doctor said that was the inflammation.  The actual villi damage they can't see just by looking at it - they have to wait for the lab results to come back from the biopsy.  But she took multiple biopsies from various areas that were visibly inflamed.

 

So inflammation and damage isn't the same thing... but inflammation is indicative of damage and can help them find the damage because the villi damage tends to be spotty and they can miss it.

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Thanks for the clarification. It makes sense that inflammation could be indicative of damage, even if damaged villi aren't seen - especially since they can really only biopsy a tiny portion of the small intestine. After my procedure the doctor initially said everything looked normal, and it wasn't until the biopsies came back that they called to tell me my small intestine showed inflammation, and that they found lymphocytes in the tissue samples. 

 

 

Lirren -

 

For some reason this isn't letting me reply directly to your last comment... you said, "I'm not sure if that's the same thing as damage..." - referring to the inflammation that was found during the biopsy.  When I had my biopsy my doctor could see the inflammation - and I have a picture of it on my fridge.  :)  The lining of the small intestine looks bumpy - kinda reminds me of the surface of a Matza cracker.  The doctor said that was the inflammation.  The actual villi damage they can't see just by looking at it - they have to wait for the lab results to come back from the biopsy.  But she took multiple biopsies from various areas that were visibly inflamed.

 

So inflammation and damage isn't the same thing... but inflammation is indicative of damage and can help them find the damage because the villi damage tends to be spotty and they can miss it.

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