Could It Be celiac disease And Not Ms?

[nama shivaya]

Hi Everyone:

I'm going through the testing for some neuropathy-type symptoms. Neuro thinks possible MS. I have been pretty gluten-free for a couple of weeks, wanting to clear my bod of unneccessary junk. I"ve eaten mainly eggs, unprocessed meats, and veggies. Well, I started back on bread two days ago and have experienced stomach bloating, cramps, nausea, increased sinus drainage, migraine and bad mood. ALL IN 2 DAYS! Stools a tiny bit fatty with oil residue on bowl water. Seems there's a gluten connection there. I've also had a bout of candidis for over 8 months (on and off, but never far away).

My question to you fine folks is this: were any of those of you with neuropathic symptoms tested for MS?

It seems many undiagnosed people on the MS board have not been tested for celiac disease. and some people on this board who continue with neuro and other adverse symptoms after beginning a gluten-free diet may not have been tested for MS. (or other things?)

Just curious. Just exasperated. Just want to know what I can do to help myself!

Hugs!

[missy'smom]

I've been trying to get my sister tested for celiac disease because both my mom and I have it and also because sis has unspecified seizure disorder. They've put her through alot of testing and come up with nothing. Sent her home with meds and that's it. She is only 30 but lives like an 80 year old. Has to be careful not to overexert herself or she gets sezures. Naps alot. Has to leave social events early as she gets too tired. If she works a long shift at work or extra hour or even reg. full time schedule, she ends up sleeping litterally whole weekend. We've wondered if she has MS or something else. But the more I talk to her about celiac disease the more she gives me info about herself that makes me think that's what she has. Because of the sezures I'm trying to convince her to get a biopsy and not just go gluten-free. I'm hoping it's celiac disease and that gluten-free will help with the seizures.

[CarlaB]

My question to you fine folks is this: were any of those of you with neuropathic symptoms tested for MS?

It seems many undiagnosed people on the MS board have not been tested for celiac disease. and some people on this board who continue with neuro and other adverse symptoms after beginning a gluten-free diet may not have been tested for MS. (or other things?)

Lyme also causes neuro problems (including seizures). My Lyme doc tests everyone who comes in his office for celiac because the symptoms are so similar. I think the people on the MS board should be tested for celiac and Lyme.

[Rachel--24]

There is some evidence that MS and Lyme *may* be either the same disease....or that they are seperate diseases caused by two different spirochetes carried by the same vector.

There is much research being done on this subject.

Here you can see that "geograpically speaking" these two diseases are nearly identical.

Open Original Shared Link

Also, the brain lesions, the spinal fluid findings and the actual clinical manifestations of Lyme and MS cannot be distiguished one from the other, perhaps simply due to a strain variance of Lyme. When MS is suspected Lyme should always be investigated...and thoroughly.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Multiple Sclerosis Patients Should Be Tested for Lyme Disease

One is Often Misdiagnosed as the Other

It

[Rachel--24]

Oh...I forgot to add....I was tested for MS a little over 3 years ago when I first started having all my neurological symptoms. I had a brain MRI and it was clear.

[nursey70]

hi there,

i always think it's good to rule out other diseases that "mimic" one another. i too have been worked up for ms and found to be negative. and i believe my doctor. my mri scans were clear, my blood tests were normal.

most neurologists will test for lyme when a person presents with neuropathy, as well as b12, folate, syphillis, hiv, thyroid, etc. there is big controvery over lyme vs. ms and i know many boards i have visited in the past have shown people diagnosed with ms trying to be convinced by people with lyme that it's not ms they have but lyme. then there told to pursue lyme doctors and special lab testing, paying out of pocket to be diagnosed. if it's ms, steroid treatment, helps a great deal. if it's lyme, antibiotics seems the way to go. but, you really need to "listen" to what you feel is maybe wrong.

personally, i've been dealing with an odd array of symptoms for 8 months now. and with the internet at your disposable you learn alot. i've learned that people will try to convince me that i have lyme, even though i'm negative. i've learned that even though my tsh was normal people will say, test your free t3 and t4 and if their not optimal then it's thyroid. want tmj, people will convince you have it as well. i've never seen anyone on the ms board try to convince me i have ms or any other boards with the more dreaded illness. just my thoughts.

the reason i'm here is trying to exclude another possibility. i've recently read articles that states celiac does not present as gi symptoms in a percentage of people and people who have celiac could present with neurological symptoms. so i'm on to another possibility.

i too have had many neurological symptoms but have gi symptoms as well. neuro symptoms came first so i think it could be a possibility that they're connected or i have several different things going on at once (lucky me).

good luck and welcome

[ravenwoodglass]

I was tested for MS, the MRI found brain lesions, they called them UBO's but they were not specific for MS. I then had a spinal tap to make sure it wasn't MS. They check for a protein deposit in the fluid that comes with the destruction of the mylin (sp) sheath. That wasn't found. They did find with electromylograms (where they stick needles in your muscles and then measure how much of the electrical impulse gets where it needs to be) that my right leg was basically dead.

I was almost unable to walk and had tons of other nasty problems by the time celiac was at last diagnosed. I have after almost 5 years gluten-free regained much of the neurological function that had been lost. It took lots of sublingual B12, a good PT and strict adherence to the gluten-free diet but after about 6 months there was a noticeable difference with steady slow progress still being seen.

[Rachel--24]

most neurologists will test for lyme when a person presents with neuropathy, as well as b12, folate, syphillis, hiv, thyroid, etc.

This is not true...at least not for me or many other people I've talked to.

The first thing the neurologist did was send me for an MRI....to look for MS. I never got stressed out about possibly having MS because I absolutely did not believe I had it. I did think it was possible I could have Lyme though....I asked the neurologist if it could be Lyme...she flat out said "NO."

At the time I was not aware of the similarities or misdiagnoses between the two diseases and trusted the Neurologist when she said it couldnt be Lyme. Thankfully for me...nothing was seen on my MRI....because in the end I do not have MS....steroids would have been a disaster for me.

Not only did the neurologist tell me it couldnt be Lyme....but every Dr. I saw and asked over 3 years....including the infectious disease specialist who laughed at me for suggesting it.

So no....they dont routinely test for it. I waited almost 4 years to be tested....and I saw ALOT of Dr.'s during that time. Finally, just a few months ago I got a good Dr. and within 10 minutes of my first visit...he was wanting me tested for Lyme. 4 YEARS LATER.

I am someone who wants thorough testing...not "guesswork". I want a clear answer....alot of people are getting diagnosed with MS based on symptoms alone.....thats not good enough in my opinion....especially when its not the right diagnosis....the consequences are far too great.

One of these diseases is commonly diagnosed.....while the other isnt.....even though they share the same symptomology....including the brain lesions.

there is big controvery over lyme vs. ms and i know many boards i have visited in the past have shown people diagnosed with ms trying to be convinced by people with lyme that it's not ms they have but lyme.

I never try to convince anyone of any particular disease.....I try to inform people. There is a big difference. I know for myself....I like to have all of the facts.....so that I can make informed decisions.

All possibilities should be ruled out when diseases can "mimic" each other.....as you said. Also....if a person does not improve from treatment....other possibilites should be ruled out.....unfortunately this rarely happens.

I would have to assume that if people were suggesting Lyme instead of MS....it is probably because those people with the MS diagnosis were not improving?? I dont think anyone would suggest the wrong diagnosis was made if the person clearly benefited from treatment.

It is very common that people with Lyme were first diagnosed with MS.....and suffered years after that....simply because noone bothered to be thorough with testing to rule out *all* possibilities.

[nama shivaya]

To All:

Thank you for your shared experiences and ideas concerning testing, etc., for MS mimics. I agree with you, Rachel, that not all docs pursue testing as well as others, and that a person must be their own advocate and push for things. It's not always that easy, tho!!

Since I live in Colorado, docs do not routinely check for Lyme. In fact, from what I read in the CDC census, there have not been any reported cases of Lyme. But -- I travel and stay in hotels, etc. Who's to say I did not pick up an infected tick somewhere? I was bitten by a bed bug last October that I thought was a tick. Maybe it was.

Anyway, thanks for all the input, guys! It's a crazy thing I'm dealing with and I appreciate all the advice I can get!! And good luck on all of your (and family members') dilemmas.

Hugs,

Nama

[CarlaB]

In fact, from what I read in the CDC census, there have not been any reported cases of Lyme.

Nama, don't be fooled by this!! Lyme is underreported ... in fact, I was CDC positive and my doc won't report it. I should add, I got infected over 30 years ago in an area that is STILL considered "no risk"!!

Not only did the neurologist tell me it couldnt be Lyme....but every Dr. I saw and asked over 3 years....including the infectious disease specialist who laughed at me for suggesting it.

So no....they dont routinely test for it. I waited almost 4 years to be tested....and I saw ALOT of Dr.'s during that time. Finally, just a few months ago I got a good Dr. and within 10 minutes of my first visit...he was wanting me tested for Lyme. 4 YEARS LATER.

Over the past 30 years I've been to doctors and emergency rooms. NOT ONE ever suggested testing for Lyme. Finally, I asked my doctor to test me for it, provided her with the test kit, and she flat out told me I did not have it but she'd check for it because I have a psychosomatic illness and it's important that I get stuff like that out of my head. I came out very positive and my Lyme specialist, who I have to fly to NY to see, says my tests indicate I've had it for a VERY long time.

Not to mention, most labs testing for it is inadequate. You have to be tested by Igenex ... it's their specialty, all they do.

[Rachel--24]

Over the past 30 years I've been to doctors and emergency rooms. NOT ONE ever suggested testing for Lyme.

Did they ever tell you it could be MS??

I was tested for MS right off the bat...my first visit to the neurologist...and I left with a referral to radiology for a brain MRI.

I wasnt scared of MS...but the actual MRI was not fun for me.

It seems odd to me now that they would test me for this so quickly...and totally dismiss Lyme.

How come she said it couldnt be Lyme if she was thinking it *could* be MS.....yet they both have the same symptoms??

Thats kind of upestting to me...I never thought back to my MS test until I read this thread.

I had even told the neurologist that I camp and do outdoorsy things all the time!!

[Generic]

I had 2 MRI's done, they also thought I had MS. No one but Carla and Rachel has suggested I get checked for Lyme. My neuro problems get worse almost everyday. So now I have to save up for the testing.

I just want to feel better and whatever it is I want to start fighting it and not letting it get worse. All the Dr.s I have seen have told me, there is something going on, but it is the early stages. Therefore I have to wait for it to get worse to figure out what it is. ERGH!

-Laurie

[CarlaB]

Did they ever tell you it could be MS??

No, I never had the classic joint pain and muscle aches until about four years ago after a round of doxycycline. I generally was determined to be dehydrated because my blood pressure would drop when I stood up .... the thing is, that not only can be dehydration, but it's also a problem for those with Lyme.

I also went in for extreme fatigue ... I was in college and they told me not to drink so much ... I guess they thought I was a drunk!

I never have really trusted doctors since I was a little kid ... so I didn't really go to a lot of doctors for it until I was almost completely debilitated. That is the only reason I didn't have so many wrong diagnoses.

[CarlaB]

I had 2 MRI's done, they also thought I had MS. No one but Carla and Rachel has suggested I get checked for Lyme. My neuro problems get worse almost everyday. So now I have to save up for the testing.

I just want to feel better and whatever it is I want to start fighting it and not letting it get worse. All the Dr.s I have seen have told me, there is something going on, but it is the early stages. Therefore I have to wait for it to get worse to figure out what it is. ERGH!

-Laurie

Since money is an issue, rather than the complete test, you might want to get the two Western Blots from Igenex for $99 a piece, and yes, you need both of them.

In the meantime, you might want to Google "salt vitamin C Lyme" and "samento Lyme". If you have Lyme, you will need to go on medication, but this might help a bit while you wait.

[nama shivaya]

Wow, I thank you guys for all the information. I think I'll push for the Lyme testing even though I'm sure my docs will not be for it!

[Generic]

Since money is an issue, rather than the complete test, you might want to get the two Western Blots from Igenex for $99 a piece, and yes, you need both of them.

In the meantime, you might want to Google "salt vitamin C Lyme" and "samento Lyme". If you have Lyme, you will need to go on medication, but this might help a bit while you wait.

Thanks Carla, I will do that. Today has been the worst so far. I feel like I'm falling apart.

-Laurie

[CarlaB]

Thanks Carla, I will do that. Today has been the worst so far. I feel like I'm falling apart.

-Laurie

I'm sorry you're feeling bad. I am, too. My first "herx" (herxheimer reaction) since starting the meds. It's brutal.

Carla

[CarlaB]

Wow, I thank you guys for all the information. I think I'll push for the Lyme testing even though I'm sure my docs will not be for it!

If you get tested, be sure to use IGeneX (Open Original Shared Link). I had IGeneX send me the test kit, then I took it to my doctor. Most docs don't use IGeneX, unless they're LLMD's (Lyme Literate Medical Doctors). I had to push my doc to do the testing. Don't be surprised if they're hesitant.

[Generic]

So far my Dr. has been receptive to anything I suggest, let's hope it stays this way! I will only use igenex. Sorry you are feeling cruddy. I hope it is just part of the road to a healthier you.

-Laurie

[tummytroubles]

I was diagnosed with MS via MRI when symptoms first popped up in 1993. I never did have a spinal tap. Thankfully, my MS seems to be a benign form right now with only mild symptoms.

My question is whether or not I should maybe be tested for Lyme's disease. My main health problems right now are mainly digestive, even after going off of gluten, corn, dairy, soy, and many other foods. I also have advanced endometriosis which can be pretty painful.

For those of you diagnosed with Lyme's, did your digestive symptoms improve after your treatment for Lyme's, or are gluten intolerance and Lyme's completely separate diseases?