Ms Symptoms Or Celiac?

[KimsHere]

Hello!

I am in the proccess of diagnosis for MS. Next week I see a specialist for MS. The only 2 symptoms I do not have for MS are lesions and optical neuritis. I stumbled upon celiac disease being confused with MS and was so surprised! I am very curious to know if anyone here has had these two diseases confused along the way of diagnosis. I see the MS specialist next week and will be sure to mention what I've discovered. I also let my primary doc know I found this connection. He is going to call me later.

I am experiencing the following:

complex seizures

neuropathy

sensory issues

muscle cramping

tingling/pain

numbing hands/feet/face

bladder problems

bowel issues

stomach pains

headache

fatigue

nausea

Believe it or not, I'm living a pretty normal life day to day....LOL

Thank you!!

Kim

[Fiddle-Faddle]

There have been several people on this board who were initially evaluated for MS, and they did find that their symptoms were caused by celiac.

There is also a strong connection between MS and Lyme disease, and many believe that MS is misdiagnosed Lyme, so that's something else to rule out. Since less than half of those diagnosed with Lyme ever had the "bull's-eye" rash, and a hefty percentage don't even recall having been bitten by a tick in the first place, those are not reasons to rule out Lyme without the proper blood test.

B12 deficiency (which is often caused by celiac) can cause tingling hands and feet and neurological problems, as well, especially if serum levels are above 200 (which is for some strange reason, considered normal in the US) but below 550 (which is the lower threshold for normal in Japan).

My 2 friends with MS diagnoses tell me that their specialists laugh off any connection with another diagnosis (like celiac or Lyme), but that they DID put them on high doses of B12.

If you look up ravenwoodglass on this board, I believe she was definitively diagnosed with MS, including having the lesions, but that nearly all her symptoms--including the lesions--went away completely on the gluten-free diet. She also found some research that showed that celiac CAN cause lesions like those seen in MS. She is very helpful here, and I'm sure she wouldn't mind if you pm-ed her.

[Susie B]

  KimsHere said:

Hello!

I am in the proccess of diagnosis for MS. Next week I see a specialist for MS. The only 2 symptoms I do not have for MS are lesions and optical neuritis. I stumbled upon celiac disease being confused with MS and was so surprised! I am very curious to know if anyone here has had these two diseases confused along the way of diagnosis. I see the MS specialist next week and will be sure to mention what I've discovered. I also let my primary doc know I found this connection. He is going to call me later.

I'm new here so I can't be of much help I'm afraid. I'm trying to figure out if I have celiac disease or some form of other gluten intolerance issue. I see a gastroenterologist week after next. All that said, I have trigeminal neuralgia that first appeared several years ago so I see a neurologist. I usually take an anti-seizure medication that calms the nerve though I'm on a drug holiday at the moment. Because of my age and the symptoms, I've had brain MRI four times looking for MS but so far, nothing to indicate MS. Minor lesions that are older but no new ones.

When I first read that celiac disease can lead to nerve damage, I was stunned. I'm on the gluten-free diet, and it really does seem to be helping. I just saw my neurologist and he's really interested in seeing how I do on the diet.

Can our nerves repair themselves just by changing our diet to gluten-free? I am hoping the answer is yes.

[KimsHere]

Hi Susie,

From what I've been told, sometimes nerves can repair themselves but there's no way to find out why or which nerves could improve. There are also 5-10% of MS people who do not have lesions. I wonder how many of THAT % might have some celiac issues???

I am a long distance runner and these problems are so frustrating because there are times I can barely walk, never mind run. And I have run a marathon (26.2 miles) I just need to find out what's going on and get it under control. If it's a no gluten diet I'm all for doing it! Funny thing about that is, when you're running long distance, you "carbohydrates load" by eating a lot of carbs the day before a race! The stuff I've been eating if FULL of gluten!! Makes me really wonder!

Good to connect to you, Susie!

Keep me informed on what you learn. I see the MS specialist July 1st.

Kim

[LDJofDenver]

A couple of years ago, before I was diagnosed with celiac disease, my doc sent me for tests and an MRI to rule out MS, since I was having a lot of neuro symptoms - numbness, pins and needles, brain fog, balance issues/ataxia, etc. Nothing turned up for MS (thankfully), and since I've been gluten free since last August all those neuro symptoms have disappeared.

[nasalady]

  KimsHere said:

Hello!

I am in the proccess of diagnosis for MS. Next week I see a specialist for MS. The only 2 symptoms I do not have for MS are lesions and optical neuritis. I stumbled upon celiac disease being confused with MS and was so surprised! I am very curious to know if anyone here has had these two diseases confused along the way of diagnosis. I see the MS specialist next week and will be sure to mention what I've discovered. I also let my primary doc know I found this connection. He is going to call me later.

I am experiencing the following:

complex seizures

neuropathy

sensory issues

muscle cramping

tingling/pain

numbing hands/feet/face

bladder problems

bowel issues

stomach pains

headache

fatigue

nausea

Believe it or not, I'm living a pretty normal life day to day....LOL

Thank you!!

Kim

Hi Kim,

Yes, I had ALL of the symptoms you listed above except seizures, plus I had pretty severe vertigo, and my neurologist sent me for an MRI to rule out MS. I was in the process of being diagnosed with celiac disease, and had heard that celiac could mimic MS. Sure enough, I had no MS-type lesions in the brain.

My doctors all came to the conclusion that it was celiac disease plus my fibromyalgia that were causing all of the symptoms.

Hope you feel better soon!

JoAnn

[KimsHere]

  Fiddle-Faddle said:

There have been several people on this board who were initially evaluated for MS, and they did find that their symptoms were caused by celiac.

There is also a strong connection between MS and Lyme disease, and many believe that MS is misdiagnosed Lyme, so that's something else to rule out. Since less than half of those diagnosed with Lyme ever had the "bull's-eye" rash, and a hefty percentage don't even recall having been bitten by a tick in the first place, those are not reasons to rule out Lyme without the proper blood test.

B12 deficiency (which is often caused by celiac) can cause tingling hands and feet and neurological problems, as well, especially if serum levels are above 200 (which is for some strange reason, considered normal in the US) but below 550 (which is the lower threshold for normal in Japan).

My 2 friends with MS diagnoses tell me that their specialists laugh off any connection with another diagnosis (like celiac or Lyme), but that they DID put them on high doses of B12.

If you look up ravenwoodglass on this board, I believe she was definitively diagnosed with MS, including having the lesions, but that nearly all her symptoms--including the lesions--went away completely on the gluten-free diet. She also found some research that showed that celiac CAN cause lesions like those seen in MS. She is very helpful here, and I'm sure she wouldn't mind if you pm-ed her.

WOW Fiddle Faddle! I was planning on trying the gluten-free diet no matter what the docs found, but hearing that it cleared Ravenwoodglass's symptoms sounds very promising! That's fantastic! Thank you for the info, I will be sure to look her up!!

[KimsHere]

  nasalady said:

Hi Kim,

Yes, I had ALL of the symptoms you listed above except seizures, plus I had pretty severe vertigo, and my neurologist sent me for an MRI to rule out MS. I was in the process of being diagnosed with celiac disease, and had heard that celiac could mimic MS. Sure enough, I had no MS-type lesions in the brain.

My doctors all came to the conclusion that it was celiac disease plus my fibromyalgia that were causing all of the symptoms.

Hope you feel better soon!

JoAnn

Hi JoAnn!

I only had vertigo twice, but that was enough! Have you gone on the gluten-free diet? If you have, how are you doing now? Was it hard to stop eating the yummy stuff??? I'm assuming it'll be worth it....lol

[KimsHere]

  LDJofDenver said:

A couple of years ago, before I was diagnosed with celiac disease, my doc sent me for tests and an MRI to rule out MS, since I was having a lot of neuro symptoms - numbness, pins and needles, brain fog, balance issues/ataxia, etc. Nothing turned up for MS (thankfully), and since I've been gluten free since last August all those neuro symptoms have disappeared.

LDJ,

I'm happy to know you're feeling better. It really gives me hope that I don't have MS. Celiac is not a nice disease either, but being a long distance runner...I'll be able to continue with my favorite sport!!

[jerseyangel]

  nasalady said:

I had ALL of the symptoms you listed above except seizures, plus I had pretty severe vertigo

I did, too. I was not tested for MS, however.

All of those symptoms cleared for me on the gluten-free diet. Some took longer than others.

[nasalady]

  KimsHere said:

Hi JoAnn!

I only had vertigo twice, but that was enough! Have you gone on the gluten-free diet? If you have, how are you doing now? Was it hard to stop eating the yummy stuff??? I'm assuming it'll be worth it....lol

I've been gluten free since November....it was hard at first because I went gluten free right before Thanksgiving. But I already had found this site, and several gluten free cooking blogs so I made an entire gluten free Thanksgiving dinner (including stuffing, pies, etc.)! My husband loved it! It's nice to know that if you're willing and able to cook, you don't have to miss out on anything. I have a gluten free blog with lots of links to gluten-free cooking blogs, feel free to check it out (it's listed as my website in my profile).

Anyway, most of the symptoms have either disappeared or gotten much better. If I accidently ingest gluten, I get headaches, vertigo, and diarrhea, plus canker sores in my mouth, usually within 24 hours.

The symptoms/issues that are taking longer to go away are the ones associated with my fibromyalgia. I still get muscle cramps, but not very frequently. I'm still tired, but not exhausted every day....some days are better than others.

The gluten free diet is definitely worth it!! I will never knowingly eat gluten again!

Good luck!

JoAnn

[KimsHere]

Thank you for all this great information! Tomorrow I go to the specialist up in Tampa for the MS testing. I have copies of an upper/lower GI series I had 3 years ago. At that time I'd lost 45 lbs in 6 weeks but it was assumed my damaged GI tract was from taking too much excederine. I had severe abdominal pain with an enlarged uterus and I had a hysterectomy the next day. I think it was just assumed all the pain was from that. Pain that has never really gone away. (!!!)

Anyway, my doctor told me Celiac is definately a possibility and to start the gluten-free diet right now. I can't wait to feel better!!!!! He also sent me back to the GI doc, I see him on Monday.

While I'm trying to figure out this complicated diet, I'm cutting out things I know I shouldn't have. No beer, coffee, bread or pasta. That's all I'm sure of right now. I'm praying potato chips are not on the no-no list. Ted gave me a link I'm going to check out right now!!!

Thank you all again for your wisdom and support!

Kim

[ravenwoodglass]

  KimsHere said:

WOW Fiddle Faddle! I was planning on trying the gluten-free diet no matter what the docs found, but hearing that it cleared Ravenwoodglass's symptoms sounds very promising! That's fantastic! Thank you for the info, I will be sure to look her up!!

Hi, I should have responded to this sooner but have been having some nonceliac issues that have been preventing me from being here as much as I would like.

I was thought to have MS for a long time. As Jersey mentioned I do have brain lesions from celiac that are very similiar to the lesions that they find with MS however they are in a different location from where MS lesions usually are. Some doctors would have diagnosed me with MS but my neuro did a spinal tap to rule that out and they didn't find the debris that is usually find in demylinating lesions so they dropped that diagnosis. The lesions are called UBOs here or unidentified bright objects. In other countries they are diagnostic of celiac but unfortunately my neuro was clueless.

The gluten free diet and heavy B12 (sublingual) supplementation put most of my issues in remission. I still have some degree of ataxia and some issues with 'control' of the bladder and bowels but I was very far advanced before I was diagnosed. I had the ataxia and nerve damage for over 40 years but was thought to just be very clumsy and to have a 'weak' bladder until the last 10 years before diagnosis when things escalated. I had lost my leg reflexes in childhood and those took about 2 years to return after I went gluten free but many other problems got better much sooner. My migraines and their aura's went away within a couple weeks of being gluten-free and by the time I had been gluten-free for 6 months I no longer needed either canes or to walk by walls. My hands now work the way they should and I don't drop things all the time and am able to think much more clearly.

If they are going to redo the endoscopy you do need to keep eating gluten until all testing for celiac is done. Celiac testing even on gluten has a high rate of false negatives so don't stop the gluten until after you have had all the testing done. After the testing please do try the diet. My false negatives on blood tests meant they never did a scope and delayed my diagnosis by many long years. After testing is done make sure you do the diet really strictly for a while and try to avoid processed food as much as you can. It seems that when the brain is impacted many of us are much more sensitive to CC and small amounts of gluten than folks that have mainly just gut symptoms.

I hope you are feeling better soon.

[leadmeastray88]

  KimsHere said:

Anyway, my doctor told me Celiac is definately a possibility and to start the gluten-free diet right now. I can't wait to feel better!!!!! He also sent me back to the GI doc, I see him on Monday.

Hi Kim, I'm Kim too

I definitely second what ravenwoodglass said...you NEED to keep eating gluten until you have all the testing complete by your GI doc, otherwise there's an even higher risk of having a false negative.