Negative Blood Tests - What To Do Now?

[answersaregood]

Hi everyone! I'm new here and have been reading as much as I can, but don't have much time on the computer lately...so I'm sorry if I'm repeating something that someone else has already talked about!

Basically, I'm trying to figure out what to do next. I've been having some really odd symptoms since February and have been to see my PCP, an endo and a neurologist. My blood levels are low, indicating that I'm anemic, I had a Vitamin D level of 5 in March so I was extremely deficient, and my Parathyroid Hormone level was elevated. Other than that, my blood work has come back clear...and I've been tested for nearly everything I know of.

The endo ordered the following tests:

Tissue Transglutaminase AB IgA - My result was "3", with a reference range of <20 units

Gliadin Antibodies IgA - my result "2", ref. range = <20

Gliadin Antibodies IgG - my result "2", ref. range = <20

(<20 = negative, 20 - 30 = weak positive, >30 = moderate to strong positive)

Methylmalonic Acid (B12 test) - my result "0.10", ref. range <0.40 umol/L

Okay, so hopefully someone can help me here. My endo was adamant that I had celiac based upon our initial consult...but when the tests came back, he didn't even bother to call me and I got a note in the mail over 4 weeks later telling me "good news, all the tests were negative". That was it. Since I got the results, I returned to my PCP who mentioned that she knew of a patient who also tested negative, but started receiving B12 injections and went gluten free and is now 100% better...BUT what concerns me is that she mentioned that before ever receiving the actual numbers from my tests. When I look at my blood results, I have a hard time thinking it could still be celiac, since I was WAY on the opposite end of the spectrum...not even a borderline level of anything related to gluten! SO, what I'm trying to figure out is whether the numbers actually mean that much. I have read that some of you have had "negative" blood work too...but were your levels so incredibly LOW? Or were most of you borderline? My PCP has since referred me to a neuro where I am waiting on an EEG, but has told me that if all is clear with the neuro, then she could order a biopsy of my intestine to check the villi. I frankly don't want to have anything shoved down my throat unless I'm pretty confident that I'll find something off...any thoughts?

Thanks so much in advance for any input you can give me! (And I can list symptoms if it would be helpful, but the list is just too long for me to put in here unless you need them to give me advice).

Rhonda

[nikki-uk]

If you had a condition called 'IgA deficiency then you simply couldn't produce enough antibodies to get a positive result.

Your doc should have also included a 'Total Serum IgA' in your panel to exclude it.

Anyway, you have three options now.....

Get your doc to take a total serum IgA,

Push for an Endoscopy,

Go gluten-free off your own back

Good luck in what you decide

[Billygean]

I had similar results since I have basically unexplained fatigue and dizziness. I've been gluten and dairy free for a few weeks now and I am feeling steadily better

I think a) it could be a false negative. Remember it's FALSE so I suppose it doesn't matter that it wasn't a borderline positive kind of negative, if you see how I mean. Sometimes the tests get it all wrong. You could be just allergic / in tolerant to wheat, not celiac.

So I would give it a go anyway, see how you feel. If in 12 weeks you feel the same, give it up, but if you feel better, I don't think you really need a diagnosis since by then you'll have figured out what works for you.

I gave up dairy too as some celiacs find this helps but also, if a food intolerance is causing your issues, there's a high chance it's either wheat or dairy. To be on the safe side I'm not eating oats/barley etc just in case it is Celiacs.

BG

[CamiJ]

I had negative blood tests too (numbers lower than yours). I was so sure I had celiac that I pushed for the endoscopy. (I've been symptomatic my whole life - got much worse recently, have family history of celiac - anyway, I really thought I had stumbled onto the answer). Anyway, my biopsy results were negative too, although they did find unexplained villi damage (not celiac). Anyway, I've been looking into other allergens lately, and it seems that many can cause the same types of problems and damage, but they are not as diagnosable as celiac (which is difficult to diagnose in the first place). Anyway, I'm going to try cutting gluten (there seems to be some evidence that you can have problems associated with gluten without having actual celiac disease), dairy, soy, and corn (all major villi damagers), and see what happens. I hope you get well. Will you keep me posted on your progress? You and I are in the same boat at the moment.

[answersaregood]

I had negative blood tests too (numbers lower than yours). I was so sure I had celiac that I pushed for the endoscopy. (I've been symptomatic my whole life - got much worse recently, have family history of celiac - anyway, I really thought I had stumbled onto the answer). Anyway, my biopsy results were negative too, although they did find unexplained villi damage (not celiac). Anyway, I've been looking into other allergens lately, and it seems that many can cause the same types of problems and damage, but they are not as diagnosable as celiac (which is difficult to diagnose in the first place). Anyway, I'm going to try cutting gluten (there seems to be some evidence that you can have problems associated with gluten without having actual celiac disease), dairy, soy, and corn (all major villi damagers), and see what happens. I hope you get well. Will you keep me posted on your progress? You and I are in the same boat at the moment.

Thanks, I will keep you posted. We have just ruled out Lupus, Rheumatoid illnesses, and heavy metal toxicity. I have an EEG scheduled for the 28th, since my neuro wants to rule out some sort of seizures...although she did say that she didn't believe that was it. From there, I think she wants to simply try treating the migraines...but we'll see. My symptoms are very similar to a few friends who have MS, so I would like them to look into that as well is everything else comes back clear. I think if things are clear with the neuro, I'll ask my Primary if she will still order the biopsy just to see if there is damage before I change my diet too much (I LOVE food!)...hmmm...maybe I need to add that I am not overweight though, and lead a very healthy lifestyle...but still love food! I'll let you know what happens over the next few weeks. Please fill me in if you get any news as well!