~So Confused! Help Me Understand! Dr. Saying My Ms Isn't Ms It's celiac disease

[lostinpa]

Hi

I am new here. I am hoping someone can explain to me what's going on. Here is a brief history.

In 2003 diagnosed with MS. In 2004 doctor said no I didn't have MS and took me off all my disease modifying drugs. In 2008 I was re diagnosed with multiple sclerosis. I was tested for celiac disease in 2007 and in 2013. Both times were negative. Also had a biopsy that also came back negative. Saw a new neurologist on Monday who said he didn't believe I have MS based on the fact that my lumbar puncture was negative in 2004. I do have many brain lesions that show on my MRI's. The only time the lesions increased was when I stopped the MS medication. How can the new neurologist say I have celiac disease and not MS especially when all my tests come back negative for celiac disease?

Any help would be appreciated.

[NoGlutenCooties]

Hi Lostinpa and Welcome to the Forum!

 

I have next-to-zero experience with MS so hopefully someone more knowledgeable about that will respond... but it would be helpful if you could tell us about your symptoms.  It is possible to have non-Celiac gluten intolerance, in which case you get all of the symptoms of Celiac but you don't get the villi damage that comes with Celiac (so tests come back negative).  Also, if you do have MS - which I understand is difficult to diagnose - you may see an improvement in your MS symptoms by following a gluten-free diet even if you do not have Celiac, non-Celiac gluten intolerance, or a gluten sensitivity.  While I know MS patients can often see an improvement in their symptoms with a gluten-free diet I do not know if it actually has an effect on the lesions or other neurological damage.

[pricklypear1971]

They classify MS as an autoimmune disease. I wonder if the meds used will affect Celiac testing. As an example, steroid use can cause false negatives in celiac testing.

As NoGkutenCooties stated above, NCGS is an explanation - and there aren't any tests other than a gluten-free trial.

I guess the questions is - why does your doctor think this? Have you tried a gluten-free trial? What happened? Gluten ataxia, neuro is one of those cutting edge areas. There are a few on here with experience, I hope they chime in.

[lostinpa]

Hi NoGlutenCootoies

My synptoms are numb and tingling in my hands and feet, burning sensation in my back, feet, arms, tongue. Also I have cognitive issues. I have hard times remembering things, finding the right words and forgetting what things are called. I am also wondering if the disease modifying drugs that people with MS take can help the celiac disease since they are both autoimmune diseases.

[nvsmom]

There are members around here who have had brain lesions (I believe) that showed up as spots on an MRI which was caused by celiac disease. This is a discussion I found: https://www.celiac.com/forums/topic/100098-suspected-ms-can-it-just-be-celiac-please-help/?hl=%2Bbrain+%2Blesions They discuss gluten ataxia... I might be something to look into - I could be what your doctor is thinking.

 

Best wishes.

[GFinDC]

This Dr. Hadjivassiliou has done a lot of the newer research on celiac affects on the brain.  Celiac can cause UBO's (unidentified bright objects) on MRI's.  If you were on immune system supressers when you had the celiac testing, the testing wouldn't have worked right.  Useless testing basically.  Sometimes celiacs get what we call brain fog on this forum.  Might be similar to what you described.

[lostinpa]

This Dr. Hadjivassiliou has done a lot of the newer research on celiac affects on the brain.  Celiac can cause UBO's (unidentified bright objects) on MRI's.  If you were on immune system supressers when you had the celiac testing, the testing wouldn't have worked right.  Useless testing basically.  Sometimes celiacs get what we call brain fog on this forum.  Might be similar to what you described.

GFinDC, I do get brain fog and they figured that to the MS. I do have numerous lesions on my MRI of the brain.  Apparently the lesions are where people with MS get the lesions. The medication I was on for this test was an immune suppressant. So maybe that is why its negative. However when I had my test  a few years ago when I was on a drug that is not an immune suppressant it also came back Negative

 

 

The results of my blood test were

 

*deamidated giladin peptide antibody, IgG (DGP IgG)       VALUE  <0.4EU/ml                         REFERENCE RANGE <4.9EU/ml

 

*deamidated giladin peptide antibody, IgA (DGP, IgA)        VALUE 2.4EU/ml                            REFERENCE RANGE  <6.1 EU/ml

/

*anti-human tissue transglutaminase IgA ELISA (TTG IgA)   VALUE 0.2u/ml                           REFERENCE RANGE <10.3u/ml

 

*anti-endomysial IgA IFA  (EMA IgA                                     VALUE negative                           REFERENCE RANGE   negative

 

 

**total serum IgA by Nephelometry (total IgA)                    VALUE 147mg/dl                 REFERENCE RANGE >13yrs to adult 44-441mg/dl

[1desperateladysaved]

I don't know too much about this.  But in my estimation, in the long-term, this is good news for you.  Celiac disease can be improved by a gluten free diet.  You can learn about the diet, do it, and begin to heal.  It would be good news if you do not have MS after all.  I wish you well.

 

D

[nvsmom]

I'm not sure if gluten ataxia occurs with NCGI (non-celiac gluten Intolerance) the same way it does with celiac disease, and according to those tests you probably don't have celiac disease.  I think it can occur but I don't know a lot. Below are a few things I found:

 

Open Original Shared Link

We know that peripheral neuropathy can be associated with celiac disease. Is there a similar relationship between non-celiac gluten sensitivity and other neurological conditions?

Dr. Leffler: (transcribed) In terms of the other gluten-related disorders, especially gluten sensitivity and peripheral neuropathy, I think that’s just a complete black box. We don’t really know anything about if or how gluten sensitivity may be related to neurological manifestations.

Dr. Murray: (transcribed) Non-celiac gluten sensitivity and its relationship to these other entities is I would say scientifically unproven though highly suspected.  Gluten ataxia could be one where there’s a little more data to support than the others, though I think as Dr. Leffler pointed out, we don’t know what the nature of the association is. And by association doesn’t imply causation. It could easily be that someone has an injury to their brain or immune system may see that react in a way that looks like a reaction to gluten, but it may not be primarily caused by gluten. So these are very difficult issues.

 

Open Original Shared Link

....In contrast to celiac disease, NCGS, also described in the literature as gluten sensitivity, gluten hypersensitivity, gluten intolerance, and nonceliac gluten intolerance,^[19] is one or more of a variety of symptomatic manifestations precipitated by ingestion of gluten-containing foods in individuals in whom celiac disease and wheat allergy have been excluded.^{[13,19,20,21]} The diagnosis is based largely on an association between the ingestion of gluten and the development of adverse symptoms. NCGS can be characterized by gastrointestinal symptoms, such as diarrhea, abdominal discomfort, or pain, and bloating and flatulence, or extraintestinal manifestations, such as headache, lethargy, attention-deficit/hyperactivity disorder, ataxia, or recurrent oral ulceration, which improve or disappear after gluten withdrawal in patients in whom celiac disease and wheat allergy have been ruled out.^[22] As there is no known mechanism, there are currently no diagnostic criteria or serological testing available for the disorder. One study suggests that increased antigliadin IgG antibodies are often found in patients with NCGS.^[23]...

[greenbeanie]

This probably doesn't help much since I don't have a clear diagnosis either, but I was hospitalized for ataxia a few years ago and had lots of symptoms of MS. I was 35 at the time. I was told that my MRI was normal, though I was pretty out of it and didn't read the actual report. I was discharged from the hospital after a few days with no cause found for the ataxia. I eventually realized that the coordination problems, peripheral neuropathy, and memory problems had been suddenly worsened by an insomnia medication, and when I stopped taking it the crisis passed and things returned to their previous not-normal but not-alarmingly severe levels, and I went back to work and got on with my life.

Last spring I was tested for celiac and my tests were negative, though it's not entirely clear if my results were accurate because I'd been gluten-light for years before doing a gluten challenge, and the challenge was miserable. I'd also taken steroids a few times in the months before testing (for a bad reaction to allergy shots). My daughter was tested around the same time, with symptoms very similar to those I had as a child, and she was squarely positive and got a clear celiac diagnosis. To complicate things further, I had a positive skin prick test but negative blood test for wheat allergy. So basically I still have no idea what's going on.

However, I've been gluten free for almost 7 months, and most of my balance and coordination problems are gone! Rashes and diarrhea I had for decades also went away. Anyhow, I still don't have a good explanation for all this, but a gluten-free diet may certainly help with MS-type symptoms even if you don't have celiac (or can't get a clear answer about that).

I hope you're able to figure things out, one way or another.

[eers03]

Hi there.  I can see why it may feel confusing.  As mentioned above, some MS patients improve on a gluten-free diet.  Either way, I don't think it can hurt you at all to go gluten-free.  If you are still concerned that you have MS, you might read more about the effects of casein.  Some seem to think that both gluten-free and Casein free can be beneficial.

 

Have you seen a GI doctor for a biopsy to confirm this Celiac Disease diagnosis?

[Jen-1984]

It seems confusing that a doctor would decide, even after 2 negative celiac panels that you actually have it and then take you off your immune suppressant medication. Is there any other reasons that the doc has that they may have this idea that gluten is causing your lesions? I just thought I would chime in here and let you know that I have never ever had lesions, but have had numbness, tingling, uveitis and cognitive issues and had one positive test on a celiac panel that was positive and I also have a milk allergy. When I cut out the gluten and dairy all the cognitive/numbness/tingling issues went away.  It is hard to say in your situation though because the doctor doesn't seem to have any real clear reason for changing your diagnosis. I would go to an allergist and get tested for any food allergies period. I would also get a second opinion on this new neurologist's diagnosis. I would be a little suspicious of it and that is just my opinion.  

[ravenwoodglass]

You could ask your doctor to redo the lumbar puncture. If you don't have the debris found with MS that is pretty conclusive that what you are dealing with is not MS.

I was thought to have MS until my neuro did the puncture. Then the clueless guy told me that the brain lesions I had meant nothing and I just wanted to be sick!  I also had false negative blood tests (the older tests not the newer ones). It wasn't until 2 years after celiac diagnosis when I had been seeing my MS symptoms resolving that some research showed me that the lesions we get with gluten ataxia are very similiar to the lesions seen in MS.

I have to be very strict but within 6 months gluten free I was able to walk without canes and my aphasia improved. Nervous system recovery can take much longer than gut recovery.

I should note that my neuro symptoms first appeared at a very young age so I had years and years of damage to repair. I did not develop GI symptoms until I was in my late 30's but had the neuro impact and DH from childhood. I still wonder if those of us who have more neuro impact than gut impact are more likely to show false negatives with blood work and biopsy. I will likely not recover any more than I have in the last 11 or so years but at least I can walk and talk normally now, unless I am glutened.

[GFinDC]

GFinDC, I do get brain fog and they figured that to the MS. I do have numerous lesions on my MRI of the brain.  Apparently the lesions are where people with MS get the lesions. The medication I was on for this test was an immune suppressant. So maybe that is why its negative. However when I had my test  a few years ago when I was on a drug that is not an immune suppressant it also came back Negative

 

 

The results of my blood test were

 

*deamidated giladin peptide antibody, IgG (DGP IgG)       VALUE  <0.4EU/ml                         REFERENCE RANGE <4.9EU/ml

 

*deamidated giladin peptide antibody, IgA (DGP, IgA)        VALUE 2.4EU/ml                            REFERENCE RANGE  <6.1 EU/ml

/

*anti-human tissue transglutaminase IgA ELISA (TTG IgA)   VALUE 0.2u/ml                           REFERENCE RANGE <10.3u/ml

 

*anti-endomysial IgA IFA  (EMA IgA                                     VALUE negative                           REFERENCE RANGE   negative

 

 

**total serum IgA by Nephelometry (total IgA)                    VALUE 147mg/dl                 REFERENCE RANGE >13yrs to adult 44-441mg/dl

Hi,  the celiac disease testing is not perfect.  They don't get 100% accurate test results every time.  Sometimes people test low on antibodies in the bloodstream, but have sever symptoms in the skin, or the brain/nerves etc.  If you think about it, antibodies have a job to do.  So they aren't wandering around aimlessly forever in the blood stream.  They go to where they are needed.  But it's not easy to test for antibodies in the brain, or the nerves, or the gut even.  So they test the bloodstream hoping they will catch some antibodies there.  There just isn't a perfect test method for celiac disease yet.

 

Dr. Hadjivassiliou published an artilce about his research on neural affects in celiac disease sometime ago.  He said that many of his patients with neural symptoms had no positive antibodies on testing and weren't considered celiac by other doctors.  It's worth taking some time to read through his research.