How To Proceed

[fluttersmj]

My neurologist ran a bloodtest for Celiac Disease to determine the cause of my peripheral neuropathy. Based on the one positive (deamidated gliadin IgA) he sent me to a GI who recently did a small intestine biopsy. The biopsy came back negative. My question is - based on the one positive does that suggest a gluten sensitivity or should I just consider it a false positive? I don't have negative symptoms directly following the consumption of gluten. Would it be advantageous to ask for the genetic testing or is that covered under the lab comment "serological markers for Celiac Disease not detected"? Thank you for any assistance. It's hard being passed back and forth between multiple docs. Sharon

Celiac Endomysial IgA Celiac Endomysial IgA NEGATIVE

Deamidated Celiac Gliadin Ser IgA Value: 36.0 EU/mL Reference Range: <6.1 EU/mL POSITIVE

Deamidated Celiac Gliadin Ser IgG Value: 0.8 EU/mL Reference Range: <4.9 EU/mL NEGATIVE

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) Value: 0.4 U/mL Reference Range: <10.3 U/mL NEGATIVE

Celiac Total Serum IgA Value: 204 mg/dL Reference Range: >13 years to adult: 44-441 mg/dl

Summary Interpretation: Results do not support a diagnosis of celiac disease. Serological Markers for Celiac Disease not detected. Celiac disease very unlikely if patient is on a gluten-containing diet and is IgA sufficient.

[Ninja]

False negatives are much more common than false positives. The newer Deamidated Gliadin Peptide tests are more sensitive for Celiac at early stages (DGP-IGG being the most sensitive, I believe). It could be that you don't have enough damage yet, the damage was patchy, or your GI didn't take enough biopsies to catch the damage. Since you have completed both the blood tests and the endoscopy/biopsy I would suggest you try a gluten free diet for 3 months and see if it helps at all. I'm not sure whether that comment means they checked for the genes or not, however, there are people on this board who DON'T have the two most common Celiac genes but most definitely have Celiac Disease.

Sometimes people don't realize they have symptoms until they go gluten free for an extended period of time and then try to challenge or re-introduce. And then there are others who have no symptoms at all!

Good luck!

~Laura

[Takala]

"Serological" means in the blood.

WTF. You had one positive blood test.

Not unusual for biopsies to come back negative.

"immediate" reactions not necessary to ingesting gluten to still have auto immune issues with it.

With neurological symptoms, can somebody do a brain scan on you ?

[fluttersmj]

re: brain scan

I had an MRI done w/o contrast in December and one done in Feb. w/contrast. Neither revealed lesions.

[pricklypear1971]

You'd see something about dq2/dq8 if they did genetic testing. I doubt tgey did it of it isn't there.

If you do get genetic testing, make sure they look at all alleles and you get the FULL REPORT. LabCorp is a good one - they look at alpha and beta. Their report is awful, though, as far as interpretation and they give a summary that is yes/no. You don't want that - you want the detailed report that tells you the genes.

[Cara in Boston]

My son's doctor explained it to me like this: if you have a positive (blood test, biopsy, response to diet) you should be gluten free. All the tests have flaws.

My son had negative IgA tests and a positive biopsy (and little or now symptoms) - he has celiac.

I had positive blood and negative biopsy - my doctor diagnosed me with "gluten intolerance" since they found no damage. Son's doctor said that was a bunch of hooey. Perhaps they didn't biopsy the exact spot, perhaps I don't have any damage yet, lots of reasons. She is a celiac specialist and researcher for Children's Hospital Boston, so I tend to think she is well informed.

Both my son and I are doing great gluten free. (He is now very sensitive and does get symptoms when accidently glutened)

Your blood tested positive. Your body is reacting to gluten. Don't wait for damage or symptoms to develop. You caught it early. You are one of the lucky few.

Cara

[fluttersmj]

Thank you very much for all of the kind words and replies. I hate to use Celiac as an umbrella diagnosis for all of my symptoms and yet it would be wonderful if the craziness that's been my life the last year could be resolved with a change in my diet (and some major doses of Vitamin D). Do most people with either the sensitivity/intolerance or Celiac have high eosinophils? I know they're related to allergies but mine have been elevated even in the winter and wasn't sure if that's another indicator of the food allergy or something else. I've been working with my neurologist & originally the possible dx was MS but there are symptoms outside of the CNS (like the peripheral neuropathy) in which now we're looking @ Celiac and Lyme Disease. Is that a popular trio under investigation Multiple Sclerosis/Celiac or Lyme? Since I don't have full blown Celiac would just the intolerance be enough to cause the neuropathy?

[Skylark]

It's possible to have a form of celiac where the antibodies are directed at your nervous system rather than your gut. The symptoms can be ataxia, peripheral neuropathy, or an MS-like syndrome including white spots on MRI. People with the neurological form of celiac are often negative on TTG and anti-EMA and can be biopsy negative. The more useful test is the old anti-gliadin IgA, though it's not as sensitive as one would like. You do have an indicator that this could be your problem with the DGP-IgA.

If I were you, I would go gluten-free and see if the MS-like symptoms go away and the DGP-IgA antibodies fall. You will have to be strict, because the nervous system heals slowly and even small amounts of autoimmunity can trigger symptoms.

There is an association between celiac and eosinophilic esophagitis, so it's not unreasonable that a gluten issue could be causing the eosinophils.

[Bubba's Mom]

I would recommend trying gluten-free. The neuro issues are slow to heal, so it may take a while for you to see any effect? They can also become permanent to some degree if you are Celiac, and don't stay away from gluten.

Some Celiacs test negative on blood tests, some have no damage visible when scoped, some have only neuro symptoms. It can present in many ways.

Best wishes to you on finding good health.

[ravenwoodglass]

It's possible to have a form of celiac where the antibodies are directed at your nervous system rather than your gut. The symptoms can be ataxia, peripheral neuropathy, or an MS-like syndrome including white spots on MRI. People with the neurological form of celiac are often negative on TTG and anti-EMA and can be biopsy negative. The more useful test is the old anti-gliadin IgA, though it's not as sensitive as one would like. You do have an indicator that this could be your problem with the DGP-IgA.

If I were you, I would go gluten-free and see if the MS-like symptoms go away and the DGP-IgA antibodies fall. You will have to be strict, because the nervous system heals slowly and even small amounts of autoimmunity can trigger symptoms.

There is an association between celiac and eosinophilic esophagitis, so it's not unreasonable that a gluten issue could be causing the eosinophils.

It also should be noted that not all neuros are aware that the UBOs (white spots on the MRI) mean anything. I had several and was told they meant nothing and lots of people have them. (here have a prozac) If I had not been looking at the MRI films and asked what they were the doctor would not have even told me they were there. If my neuro had known what they were I would have been diagnosed years before I was and might have had a fuller recovery.

Please do go gluten free and be patient. It can take a long time before the nervous system heals.

[Emsstacey]

We actually sound very similar! I had (and still do have some minor) neuro issues... tingling hands, leg, etc... and lots of joint pain as well as GI issues. My only positive test was the DGP but my hip showed osteopenia (at 30 years old), and my bloodwork also showed extremely low vit. d and positive for Lyme.

I have gone back and forth because I had an EGD a long time ago looking and it was negative, but my GI/Celiac-ish symptoms have worsened and I am now going gluten-free. I have tried to get my doctors to test further but they always discourage it. THey are very uninformed.

Just fyi... someone going through similar testing and symptoms.