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Down And Confused

brizzo

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brizzo Contributor
brizzo
Posted
:angry: Well, here's the skinny. I have what I think to be DH. I have a positive Enterolab test. And my symptoms get MUCH better on gluten-free diet. Well , here's the confusing part. My Dr. took a blood test on me ( iga antibody) for celiac. I had been gluten-free for three months at the time. Doctor said , "it takes like 6 months being gluten-free for you to get a false negative. All published literature states that I would most likely have a false negative, being gluten free for 2-3 months. Well... My blood test results came back today, it was way negative! 1-10 units is normal... mine was -1 unit. Now, I have to battle the question. Is this because I am gluten-free that it was so low, or am I just psychoschematicly making my symptoms go away with the gluten-free diet (placebo like effect)? Is enterolab results more accurate and reliable than the blood test. I know Dr. Fine says so, but is it "really"? Damn, this is rough!....... Very scared to eat wheat again. Don't know if I should.
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Guhlia Rising Star
Guhlia
Posted

I'm not a doctor, nor am I an expert on Celiac Disease. However, I can tell you this... Enterolab doesn't specifically test for celiac. It tests for gluten intolerance (which can be every bit as bad as celiac disease). You may very well have a gluten intolerance rather than celiac. That being said, 2-3 months gluten free could absolutely have affected your test results. I would take the diagnosis from Dr. Fine's Enterolab and treat that as the ONLY diagnosis. Good luck!

brizzo Contributor
brizzo
Posted
  • Author

Thanks, I definately need some "outside the box" advice. Thanks again, brizzo :)

aikiducky Apprentice
aikiducky
Posted

Three months gluten free could definitively affect your test results.

In a way, it's actually good news, because this test result means you have been diligent on your diet and haven't made too many mistakes! :)

You feel better on the diet. That's the bottom line. :)

Pauliina

Ursa Major Collaborator
Ursa Major
Posted

Angie and Pauliina are right. 2 - 3 months gluten-free would definitely mess up your results, your doctor is very wrong (what else is new, another clueless doctor).

I would trust the Enterolab results and stay gluten-free. They seem to be the only ones out there who know consistently what they're doing.

floridanative Community Regular
floridanative
Posted

Ditto to everyone else's comments. My Celiac Mother had a biopsy 14 weeks after being gluten free. No surprise her test came back neg. for Celiac. Her blood test before going off gluten were positive but her best indidcation was her response to the diet. Luckily she's smart enough to figure out she should believe her own body and not her uninformed doctor. It's a sad repetitive story on here........90% or so of US docs don't know didley about Celiac disease. Once you accept that you'll do a lot better taking care of your health.

tarnalberry Community Regular
tarnalberry
Posted

2-3 months is quite likely to affect your results. and I'm not certain that psychosematic effects hold that strong for that long, but who knows.

honestly, and most people do *not* support this advice, but I would, in this situation, do a gluten challenge. I'd eat a day or two or three of gluten (just one meal if I reacted then, a couple days if it took longer), and see how I felt. you've been gluten free (the 'negative' challenge) for a while, and have a clear system to do a 'positive challenge' on. in the grand scheme of things, this sort of semi-controlled test, once, isn't going to be horrendously damaging. of course, if you are prone to massive horrid symptoms, are incredibly sick already, or have other extenuating circumstances, even I wouldn't necessarily do it. but it is an option, depending on your situation. (sometimes, we do tests that *are* somewhat harmful, so that we can do less harm in the long run. and I think this is one of those situations that has room for that, but you have to make that decision intelligently.)

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CarlaB Enthusiast
CarlaB
Posted

I agree with Tiffany, a controlled challenge would really let you know. I also think it would be highly unlikely that your mind could continue keeping your symptoms at bay for so long. Two or three months could definately affect the blood test, which is known for false negatives anyway.

Do you still have the rash? I would get it biopsied (not the rash itself, but the area beside the rash) if you want a firm diagnosis. Rashes can also be caused by the inflammation from eating something you are intolerant to for so long. I had a scalp rash that has gone away gluten-free ... I do not know if it was DH, but I suspect it was not. Even shampoos with wheat will aggravate it.

happygirl Collaborator
happygirl
Posted

did you doctor mention IgA deficiency? He should have if your tests were so low. Whenever you have the Celiac tests done, you need to specifically request that the FULL panel is done. Many docs only run one or two but you need the full test done. Tsk Tsk Tsk to your doctor for not following correct diagnostic procedures. (Don't worry, mine had no idea too, sigh!)

Taken from Dr. Fasano's Celiac Center website:

What are the recommended blood tests to diagnose celiac disease?

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

The presence of tTG antibodies is highly suggestive of celiac disease, while AGA can be elevated also in cases of wheat allergy.

brizzo---If you still have DH, call immediately and get referred to someone who can biopsy it (but, someone actually who has a clue, because you are actually supposed to biopsy the area right around the sore...but many test the actual spot). IF you have a positive DH test, then it is the same as a positive Celiac test...you have Celiac.

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