Jump to content
  • Sign Up
0
e320_cdi

Was Diagnosed With Doctor Suspecting Ms, But I Wonder If It Could Be Celiac

Rate this topic

Recommended Posts

Hello,

I wanted to get some board members thoughts on some of my symptoms as I want to get some other ideas about what my problem may or may not be. I am a 35 y/o male and around October 9th started getting some neurological symptoms that pretty much came out of the blue. A few days prior I felt like I was coming down with something - just not really feeling well, having little energy, and stayed sleepy most of the time. On Sunday October 9 after going to bed feeling okay, I woke up with a stopped up left ear. I had no reason to think this was all it was, so I went about my day, but I felt very foggy that day (and the day before). I had lunch, and rested most of the afternoon thinking I was getting sick or something. On October 10, that Monday, I made an appointment with my PCP, expecting a sinus infection or labyrinthitis. That Monday when I woke up, in addition to my plugged left ear feeling, I also had numbness in my face on the left side. It was around my ear, scalp, and lips and teeth all on the left side. I mentioned that to my doctor and he did some basic neurological eye movement tests and prescribed me an antibiotic for a sinus infection saying that could cause the numbness and to follow up in a week if it did not get better. I had no prior neurological symptoms besides some twitching here and there, but nothing severe or anything that I deemed as a problem. As the day progressed, I seemed to have been getting worse as it was difficult to drive due to oscillopsia and it was hard to monitor traffic, etc. Also, my speech was becoming slower and by the next day it was becoming hard to speak due to slurring and I had spoken like I had a stroke. I went to visit an ENT at this point because my girlfriend was getting increasingly worried about my symptoms being more neurological than a sinus infection, so I made an appointment with an ENT the following day (Tuesday). On Tuesday, driving and speaking was harder and walking was difficult because it was hard to see where I was going. I had slight vertigo and balance issues, and direction issues. I could "see" well, but had a hard time managing to get round because it seemed to take my brain a while to process everything. When I would turn a corner things I was direction challenged - hard to explain. I did not have any muscle weakness or double vision however. After a very quick examination from the ENT, he told me that he agreed with the PCP and gave me Prednisone to "knock it out quicker" in a 6-5-4-3-2-1 pack. I went back home and decided to try to wait it out. By the time a week was up, I showed no improvement. I called the doctor and could not speak clearly to the receptionist due to slurring issue. My left hand was uncoordinated as well, making typing very difficult. The PCP got me in that morning and the doctor examined me and pretty much immediately ordered an MRI that day and took a blood sample (I am unsure what was checked and still need to check that - I expect the report to be mailed any day). I was taken by my family to the hospital and cognitively was a wreck. My memory was no good and I had to think hard about what medications I was on. I felt like a walking zombie. An MRI was done of my head and with and without contrast. I was on the way home and my doctor called me to schedule am appointment the next day, which I thought was a little odd (he called me personally). The next day, Wednesday, a week and two days after my symptoms set in, I went into see the PCP. Speech was still off, numbness was still there, and ear still felt plugged. He said the blood work came back okay but I think my potassium may have been a little low. Again, I don't know what all they checked for then. But he said the MRI showed lesions in the white matter and that it was a sign of MS. He said he would refer me over to a neurologist as that's where his care pretty much ended for this particular illness and out of his expertise and I would need to work with the neurologist at that point. I asked the PCP how many lesions were found and how large they were and he said he actually didn't view the MRI itself but spoke with the radiologist. I looked at the clinic notes from the MRI and it indicated lesions and said "Multiple Sclerosis?" indicating that the radiologist suspected it but I don't think that was an official diagnosis.

So Friday of that week rolls around and I am still not doing very good, having the same symptoms; very very foggy feeling and having speech problems. I see to the neurologist that people that live in this area "would not send a rabid dog to." Having never needed a neurologist I wasn't sure what to expect. Since I wasn't feeling the best that day, I wasn't able to hold a very intellectual conversation with him. My family did their best, but they nor I wasn't really sure what to ask, etc. He evaluated me and I wasn't showing any muscle weakness not any other symptoms other than the initial ones. That day he tried to get me started on a DMD, for RRMS and that was the first time I was introduced to them. Obviously a big decision and many to choose from, I told him I would need to think about that and let him know.

I am confused after reading peoples experience about getting diagnosed if this was an accurate diagnosis, as it seems the radiologist was unsure but suspected MS after seeing the lesions. I also had a subsequent MRI of my spine, and it found a C-4 bulging disc but found no lesions. An MRI I had back in 2009 (for headaches) was pulled and it did not show any lesions, however I do not believe it was with contrast.

Afterwards (in about two weeks), I developed double vision and vertigo and was not able to drive at all. Later, my cognitive function started returning, my speech got much better, numbness went away, and balance is returning. So overall I am improving greatly.

So like most people I have been looking to see if anything else could cause the symptoms I have been having since I have not had the drop foot, left/right side weakness, etc. (and hope I don't ) and honestly do not have much faith in the neurologist that saw me. I have had no prior issues that would have me think I have/had MS at all. This was completely out of the blue.

I read a few things that could possibly mimic the issues I have. One was B12 deficiency and another one was Celiac disease.

I am unsure what level my B12 is. The PCP may have tested that on the visit of the MRI, but I am unsure.

Regarding Celiac - I have had stomach issues for many years. I get diarrhea very often, and it is pretty much a regular occurrence for as long as I can remember (15 years?). I have mentioned this to my PCP in the past and it was pretty much written off as IBS. I do not eat what I would consider healthy unfortunately (love pasta, pizza, etc.) and have suffered from heart palpitations (PVCs and PACs) for at least 10 years, and mainly after meals, especially large meals. The heart palpitations have kept me from being very active, not to mention the need to have a bathroom close by. Recently, I have been eating less and less, sometimes only one meal per day because of the bloating I get and the palpitations that come after a larger meal, and having to go to the bathroom abruptly after breakfast interrupting my workday. I have just thought this is the way my body works and I have learned to work around it. I figure if I avoid large meals I don't have the heart issues, etc.

Since pasta is one of my favorite meals, I try not to be be very active after eating it because I know that my heart will act up. Consequently thinking back, I noticed that the meals I eat at Outback Steakhouse do not do this, really no matter how much I eat. After looking at their gluten-free menu, all of the items I eat are all gluten-free. So it that seems like a connection.

So, what I am getting at, is with the bad diarrhea (I don't have what I would consider a "regular BM but once a month - everything else is very loose), and lack of eating (I still weigh about 225lbs@ 6ft but was 270lbs about a not even a year ago so I am not underweight) would it be possible for me to be malnourished and develop the symptoms that I have experienced? If I had something like Celiac where my body didn't absorb the nutrition it was supposed to anyway, and on top of that me putting less food in my body trying not to feel bad, get IBS, and PVCs/PACs, would it get me to a state I am in now? Before I did not take any supplements but I do now (Fish Oils, D3, B12) and have been taking them for a few weeks since I became ill.

I just wanted to throw this out there and see what people thought. I did read some studies where lesions were found with some people with Celiac so this makes me wonder. Also, my girlfriend's doctor even said he had a patient where they suspected MS but it was actually sprue. When she went on a gluten-free diet she was better in 6 months and the plaque in the MRI was gone.

Is that diagnosis typical even without a lumbar puncture? Shouldn't they have done more tests to rule out other diseases?

Thank you for any input you may have.

Share this post


Link to post
Share on other sites

Yes, yes, yes you need to get a celiac panel!!! Not all people with celiac are underweight, but you can still have profound deficiencies. I was always normal weight but anemic, low calcium, and low D.

Get the testing before you go gluten-free because the celiac panel does not work once you've been off gluten for a while. Then start the diet no matter what the tests say because there is a high false negative rate, plus there aren't always antibodies with the gluten-caused neurological issues.

Share this post


Link to post
Share on other sites

Yep, you need a celiac panel.

Here's the good news: it may be celiac, and your symptoms may improve or resolve with the gluten-free diet.

Here's the so-so news: gluten intolerance is associated with some forms of MS, and you may have both. Again, your symptoms for both may improve or resolve with the gluten-free diet.

The lesions worry me. Where are you located? You aren't in the UK or Europe, are you?

I encourage you to get the bloodwork for the celiac panel done ASAP and see a good gastroenterologist. Whether your symptoms are related to MS or not, the GI symptoms also need to be looked at.

I hope the best for you,

TK Kenyon

Share this post


Link to post
Share on other sites

I am in the United States. I guess why I question the MS diagnosis is that the PCP did not make the diagnosis, and the neuro looked at the MRI and just said it's MS. He didn't question any history or anything. I think just because of my age and what the MRI showed led him to that diagnosis. My girlfriend commented several times on the fact I don't eat much, and that I have BM issues all the time.

If it is MS, I am sure that the symptoms have to start at some point, but for most people it seems that a diagnosis this late in life is usually made after they have determined they have had it for several years and have had numbness on many occasions.

I will indeed get the panel done and have a follow up appointment with the PCP on Tuesday. After looking back at what Celiac can do and the stomach issues I have, I have to wonder if they are related.

Celiac was never brought up at any previous appointments and I just tried probiotics and they did help bloating on occasion but it seemed to be short lived.

Share this post


Link to post
Share on other sites

I've been listening to the MP3's available on Dr Tom O'Bryan's site (www.thedr.com) and he definitely talks about neurological symptoms in relation to celiac or gluten sensitivity. There are several mp3's available, so I'm not positive which one(s) might be best to listen to. I think I started under the gluten sensitivity heading. There are only a couple I haven't heard yet. Of course some of the links are going to the same mp3, they're just listed under different headings. In case you want to take a listen.

Short answer, yes there could definitely be a correlation.

Share this post


Link to post
Share on other sites

If ravenwoodglass were on the forum today, she would tell you how for years her celiac was misdiagnosed, they thought she had MS due to the UBO's on her brain (Unidentified Bright Objects), and she suffered terribly for years before she finally got a correct diagnosis. Apparently there is a difference between the MS lesions and the UBO's of celiac but I have no idea of what it is. Ravewood was always celiac negative on blood testing and that is why she went undiagnosed for so long, and she has different celiac genes from those commonly accepted in the US as being celiac genes. I hope she comes on and finds your post and can help you.

My hub is celiac and his mother lived her life with an MS diagnosis, though they were never really sure about it and kept putting her in UCSF for further testing. When she was diagnosed before he was born she was given a life expectancy of 2-3 years. She lived to be 87. She was, off and on, allergic to milk, eggs, other foods. I didn't know about celiac before she died. His nan (mom's mom) had to migrate to the US for thyroid surgery (goiterectomy) from the UK back in the 1930's because that was the only place they were doing it, and we know the connection between thyroid and celiac. So do not be too quick to accept an MS diagnosis. Explore, explore, explore :rolleyes:

Share this post


Link to post
Share on other sites

Thank you everyone for the replies. I know most physicians have our best interest at heart, but they don't have the time or really the means to go out and look at all of these issues. I think it helps to get as much information as possible going in.

As for it being hereditary, I think my uncle had it as he had stomach issues his whole life including what appeared to be IBS and passed away at a very young age in his 50s. Also, my brother has the same stomach problems that I do so that leads me to believe we both have it.

Share this post


Link to post
Share on other sites

I am in a similar situation to yours. Lots of neurological symptoms (mainly sudden loss of vision in left eye, hand and foot numbness, loss of coordination, and "foggy" feeling) in addition to a long history of stomach problems. I did go to the hospital for this a few weeks ago and everything looked normal with the exception of extremely low potassium levels. I was scheduled to have a brain MRI next week (doctor suspecting MS) but earlier this week my blood test came back positive for celiac. I am postponing the MRI to see if going gluten-free clears up these symptoms. What I am starting to learn is celiac can cause a lot of neurological symptoms so I am hoping that is the link. I hope it is the link for you as well.

Share this post


Link to post
Share on other sites

Sounds to me like you are describing Celiac. All the things you mentioned were all too familiar. I would question the doc a bit further about the MRI on the brain. I too had an MRI and I honestly thought I was going to be diagnosed with MS, however, from my reading I recall that lesions on the brain from MS are located slightly differently than that of a patient who has nerve damage from celiac. You might be able to find more info on the Internet on this. Or perhaps someone here knows that answer for sure.

If you are still on gluten, I would encourage testing but please be aware that you have to keep eating gluten and that testing is not always accurate. For whatever reason it seems patients with neuro ssues vs gastro issues are the hardest to prove with the traditional celiac panels.

If you decide to go thru with testing and results come back negative (I am saying, "if"), I would highly encourge a gluten-free diet. You described the symptopms very well, exactly what I went thru. I was braely functioning and docs just kept running tests and could not find out what was wrong, all the while I was continuing to decline. Food allergies run in my family and it was a family member who asked me to try going off gluten to see if it would make a difference. At that point I felt I had nothing to lose. I was actually shocked when I realized this was my problem. Thru all the tests, and how I progressed off glutens the docs were able to put it all together like a jigsaw puzzle and I ended up with the diagnosis.

You need to act on this though. The nerve damage can be permanent. There's several posts here on Neuropathy and I would encourage you to read more. Best to you!

Share this post


Link to post
Share on other sites

Thank you for your response. I do recall (even in the state of mind I was in) that the physician said my potassium was low. After reading about some of the diagnosis and how MS patients received it, it seemed to be a long, enduring process. With the feedback I have received regarding the neurologist as well as this being my first symptom, I am just not sure that is what it is. My main issues right now are still some vision problems and that are much better than they were, the vertigo is much better than it was (I can get around okay now and drive but still get the vertigo some) and I do have cold feel and when in bed but otherwise I have had no issues to speak of with that. My memory I can tell suffered somewhat during all of this, but I really think there are other things that should be eliminated first, and I don't feel that was done appropriately. I have been told year after year I have IBS and that's about it, but there is a root cause I feel for all of the diarrhea that I have been experiencing for over 10 years. And with the weight loss I have endured from not eating, I can see where my body would greatly suffer from not having what it needs to stay healthy.

I stopped eating gluten a yesterday as I did not want anymore damage to my body than already has happened if that is indeed the problem. I guess at this point are the tests worth having and getting a diagnosis if the symptoms subside?

I wonder what my B12 was and even if they check for that in a typical blood workup as it was not mentioned at all. The potassium being low is interesting, however.

NIcolevh - I hope that is your problem as well and that you recover quickly!

Share this post


Link to post
Share on other sites

If ravenwoodglass were on the forum today, she would tell you how for years her celiac was misdiagnosed, they thought she had MS due to the UBO's on her brain (Unidentified Bright Objects), and she suffered terribly for years before she finally got a correct diagnosis. Apparently there is a difference between the MS lesions and the UBO's of celiac but I have no idea of what it is. Ravewood was always celiac negative on blood testing and that is why she went undiagnosed for so long, and she has different celiac genes from those commonly accepted in the US as being celiac genes. I hope she comes on and finds your post and can help you.

OP Did your doctor do a spinal tap? If not don't accept the MS diagnosis. The lesions with gluten ataxia are very much like the lesions of MS but they don't produce the debris that is found in the spinal fluid of MS patients.

While many think of ataxia when they think of balance issues it can affect speech, cognition, and many other brain and nerve related issues.

Do be sure to get a celiac panel done before you go gluten free. When all Celiac testing is done, including endo if you choose to have one, then go VERY strictly gluten free. You don't have to wait for the results of the tests and may see some improvement before the test results even come back. The nerves can take some time to heal so you have to be patient. While I saw great relief in my GI distress fairly quickly the biggest change in the neuro issues took about 6 months. However you may see relief a bit sooner as I had been undiagnosed for many years and was at a point where I couldn't walk unaided and had extreme difficulty with speech and thought processes.

Do get your B12 levels checked and take some sublingual B12. That will help the nerves heal. If you are already taking sub B12 supplements before you get your B12 tested be sure to let your doctor know as the supplements may make your levels show higher than what they are. Since B12 is a water soluable vitamin there is no toxic level so don't worry about how high the amount of B12 is in the supplement.

Not saying for sure that what you are dealing with is ataxia related but with your GI issues that is a really good possibility. Keep us posted on how you are doing.

Share this post


Link to post
Share on other sites

No - they did not do a spinal tap. Another reason I wonder if he was correct.

Share this post


Link to post
Share on other sites

I think it is clear you need further testing or at least a second opinion before you accept the diagnosis of MS.

Your other symptoms do sound like Celiac, but I wouldn't dismiss the other findings. You could have both, as they are both autoimmune conditions and sometimes are found together.

Over a 5 year period I was in and out of my doctor's office. Once for a series of cardiac tests because of having palpitations and weird, thumping rhythms. They did every imaginable test and found nothing wrong. Then I was back for unexplained dizzy spells and loss of balance. Again, every test imaginable (think of the $$$ wasted!) but found nothing. They were expecting MS. (My symptoms were not as bad as yours sound, but still alarming)

After a while, I just stopped telling my doctor all the weird stuff I was experiencing because she was beginning to think I was a crazy hypochondriac. I had numbness in my hands and feet, joint pain, etc. but I just kept it to myself.

I was NEVER sick prior to the birth of my second son (5 years earlier). Now I had a sensitive stomach, frequent gas, fatigue, etc. I became a different person - anxiety because I constantly thought there must be something terribly wrong with me. Didn't like to go places - in case I had an "emergency." Tired all the time.

Then, my son was diagnosed with celiac disease and as I started reading about it (so I could help him) the lightbulb went off. I tested positive (blood test) but negative on the biopsy. Went gluten free with my son and am almost back to my normal self, six months later.

DO NOT change your diet until you have been tested. Then, even if the tests are negative, give it a try. It certainly can't hurt.

Cara

Share this post


Link to post
Share on other sites

No - they did not do a spinal tap. Another reason I wonder if he was correct.

When I was googling arouond yesterday after your post I found several references stating that the spinal tap is no longer considered necessary for a diagnosis of MS, so you may need to explain to your doctor why you are requesting one if you follow ravenwood's recommendation.

Share this post


Link to post
Share on other sites

Thanks everyone for the replies. This has been some journey and recovery is slow, but I can drive now and my vision is good enough to see, but I still see double out of my extreme corners of my vision. I read the article here http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html and it sounds very much like what I am dealing with as well, but mine has not gotten that bad yet. It had no mention of lesions, but I still need to investigate this and have my doctors investigate this further.

Do most medical offices in the US test for B12 and/or vitamin D during routine blood work?

Share this post


Link to post
Share on other sites

Yes, your primary care physician or GP should be able to order any lab tests you need.

Share this post


Link to post
Share on other sites

Thanks everyone for the replies. This has been some journey and recovery is slow, but I can drive now and my vision is good enough to see, but I still see double out of my extreme corners of my vision. I read the article here http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html and it sounds very much like what I am dealing with as well, but mine has not gotten that bad yet. It had no mention of lesions, but I still need to investigate this and have my doctors investigate this further.

Do most medical offices in the US test for B12 and/or vitamin D during routine blood work?

I was having all kinds of vision issues....blurred, double, striped pattrns were blinding, certain colors were too bright and hurt my eyes. Went to eye doc, eyes were fine, he suggested a diabetes test which I did and that turned out fine. Finally someone here on this site mentioned they tried cod liver oil for some of the same issues so I tried it. Took 3 a day like the bottle suggested and in a matter of days my vision improved. I no longer have any of the symptoms mentioned.

Share this post


Link to post
Share on other sites

I was having all kinds of vision issues....blurred, double, striped pattrns were blinding, certain colors were too bright and hurt my eyes. Went to eye doc, eyes were fine, he suggested a diabetes test which I did and that turned out fine. Finally someone here on this site mentioned they tried cod liver oil for some of the same issues so I tried it. Took 3 a day like the bottle suggested and in a matter of days my vision improved. I no longer have any of the symptoms mentioned.

Will have to try that. Thanks!

Share this post


Link to post
Share on other sites

Been there, done that, got the T- shirt.

Had the lumbar puncture routine and it came up negative when I was ... mmm, thinking... this would have been maybe as long as 25 - 30 years ago.

Fast forward to very early new 21st century.

Yes, I had the "bright spots" or brain lesions typical of Celiac damage.

You ought to thank your lucky stars you aren't in some crapastic HMO trying to get medical tests and diagnosis for this. And the subsequent PPO Neurologist from Hell

Share this post


Link to post
Share on other sites

It's interesting how many people have had neurological symptoms with Celiac. My biggest issue right now is cognitive. I hope being gluten-free will help things heal. The MRI I had revealed a 2cm lesion which at the time said is causing my problems. I do feel fortunate to be able to get around now - I hope I am able to return to work very soon.

Takala - what symptoms did you deal with for them to suspect MS?

Share this post


Link to post
Share on other sites

The more I read about celiac, the more it fits what I have been dealing with. On routine blood tests, one of the three liver enzymes have always come back elevated. The other two never had been. The doctor has always said this could be to have a few extra pounds and is probably nothing to worry about. But now after reading it seems like celiac can cause this too!

Share this post


Link to post
Share on other sites

I had very severe neuro symptoms also and MRI scans galore at the beginning of the year. It covered the gamut from uncontrollable rapid vibrations of my right eye only, thru loss of grip in my right hand and blinding pain in bands up my right leg and arm, to the simple, standard tingling in my extremities that for so many is a sign of being glutened. For months I had the spectre of MS over me and thankfully it turned out not to be that. My neuro was convinced it's celiac but because I'd figured it out before her and cut out the gluten ( symptoms cleared up rapidly ), my bloods came back normal. I think of all the things I regret, it's not coming on this site earlier and heeding the warnings not to cut out gluten before I got tested, but much like you, the symptoms were too serious to really contemplate anything else. It may be worth thinking about not totally cutting out gluten until you can be properly tested, but you'll will know yourself if you feel you can take that kind of scary punishment any longer.

It's taken months to persuade my docs to send me for an endoscopy, in fact it took what looks to have been an ulcer to get it done. I've been back on gluten now for three weeks and am getting most of the old symptoms back. Tonight was the last night I will ever have gluten again on purpose, the endoscopy is tomorrow. it's been absolute hell as the weeks have worn on, particularly this last few days. And, frankly I don't care anymore. Even if they still find nothing I know now, where I had growing doubts before, that I have serious issues with gluten and it does serious damage to me neurologically.

I've come to accept the idea that I may be long gone before the medical profession has anything beyond a perfunctory understanding of the effects of gluten on the nervous system. And like others in this thread, I'm sure - I'm done with doctors who simultaneously profess no knowledge of celiac disease yet continue to look at me like I'm mad when I reel off the symptoms I get.

And yes, I also had an elevated liver enzyme result and they put it down to me being overweight at the time.

  • Upvote 1

Share this post


Link to post
Share on other sites

Loads of best wishes coming your way :)

Share this post


Link to post
Share on other sites

I went to my PCP today to follow up - the first time I have been since I came down with this illness. I was happy that Celiac was not considered initially, nor were vitamin levels. I had these blood tests run today, and should know something within a week. Very hopeful these test reveal something. I do know that I don't feel like I have to go to the rest room after I eat if I avoid gluten. So that is very positive right there!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×