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Celiac And Now Ms. :(

Christine0125

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Christine0125 Contributor
Christine0125
Posted

Anyone else have both?  I had my 2nd bout with optic neuritis in late February (ophthalmologist first though uveitis).  1st was 9 years ago and at that time MRI was clear.  No other MS like symptoms but MRI showed a couple inflammatory spots enough for the neurologist to diagnose.  Hoping that along with the gluten-free diet (which it sounds like many MSers are trying) and medication I'll be able to prevent and/or slow any further advancement. 

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Celiacandme Apprentice
Celiacandme
Posted

I'm sorry to hear you've received a MS diagnosis. I've been reading the Wahls Protocol off and on. I was interested in what she went through and has experienced and I have an aunt with MS. I was curious if my aunt was ever tested for celiac when my diagnosis came in because of different symptoms she's experienced. I don't know if anyone else on this site has both or not. How long have you been diagnosed with celiac disease? Do you mind me asking how old you are? I hope you'll be able to prevent or slow things down, too. Keep us posted.

Christine0125 Contributor
Christine0125
Posted
  • Author

I was diagnosed with celiac just over 3 years ago at age 40 but had mild symptoms for years that I brushed off. Symptoms finally intensified and I got tired of bring told I had reflux, a bad gall bladder, hormone fluctuations and asked to be tested for celiac. So darn frustrated to have yet another condition to deal with.

Celiacandme Apprentice
Celiacandme
Posted

Understandably so. Are you getting a second opinion? Do you like your neurologist? Have they already started you on medications? I don't really understand when you say that they found inflammatory spots. Did they say they were lesions on the MRI? I can't imagine all that you are going through. Thinking of you.

cyclinglady Grand Master
cyclinglady
Posted

I do not have MS, but my mother-in-law did.  She lived a very full life.  She first had vision problems in her twenties.  Later, problems with walking, but that was right before retirement.  Her symptoms would lapse and then hit her for a few weeks out of the year.  In retrospect, we think she had celiac disease as well, but everything was brushed off as being related to MS.  Her son, my husband, has been gluten free, for 14 years per the advice of his GP and my allergist, "Go gluten free and see if your symptoms resolve."  His symptoms did resolve but he never got an official diagnosis as having celiac disease and refuses to do a gluten challenge.   I do not blame him.  

 

Anyway,  the gluten free diet should help reduce inflammation.  Be sure to keep moving.  Gentle exercise, like water aerobics is great.  I have two women in my water aerobics class and they say it really helps.  One is older and is still working as a real estate agent.  She sells tons of houses.  Eating well and exercising is critical, she says.  I do not think she's on any meds at all right now, but I will check.  

 

I would check your vitamin D levels.  MS tends to group in colder areas and my MIL was from New York.  Her children, raised in a warmer climate did not get MS, but she does have one granddaughter, my daughter, and we hope that sunshine will keep MS away.  But really, it's the luck of the draw.

 

Also, maybe it is related to celiac disease.  I have been reading about how celiac disease often mimics MS.  Not enough research has been done yet.  All that is still new.  

 

Keep up a good attitude and surround yourself with family and supportive friends.  Ask for help when you have off days!  

:)

Christine0125 Contributor
Christine0125
Posted
  • Author

Understandably so. Are you getting a second opinion? Do you like your neurologist? Have they already started you on medications? I don't really understand when you say that they found inflammatory spots. Did they say they were lesions on the MRI? I can't imagine all that you are going through. Thinking of you.

 

I like the Neurologist ok but have had limited experience with him so I guess you could say the jury is out.  I got the impression that he didn't go into a great detail as an appointment with such a diagnosis is obviously overwhelming - what I know is that 8 years ago I didn't have spots and now I do although he said "a couple" so I didn't light up like a Xmas tree which is the way someone once described it to me.  I am starting medication because I want to feel like I have some control and know the current treatments have come a long way in preventing flare ups.  I'll go for a follow-up in a few weeks once I start so I'll have a chance to ask a lot of questions then.  My insurance (through husband's work) is with a major teaching hospital about an hour away with an MS center and I'm strongly considering making an appointment.  It's actually advantageous financially to see docs within the hospital system with a much lower co-pay but I tend to go local for the convenience factor. 

 

My Vitamin D was in the normal range on my last celiac lab but do plan to watch it and use it as an excuse to spend as much time in the sun as Spring has finally sprung.  I have read bits and pieces about celiac mimicking MS however I was on a rather strict gluten-free diet for 3 years before this episode (minus one oops with butterscotch chips back in December).  It makes me skeptical that I can blame this on the celiac unfortunately as much as I would like to.  I'm also trying to modify my diet to include more anti-inflammatory foods.  Open to other ideas if anyone has them.  Appreciate the supportive words!

icelandgirl Proficient
icelandgirl
Posted

Aww Christine, I'm sorry... ((((hugs)))). It's very hard to get another diagnosis and MS would be a hard one to hear. I just want to send you hugs and support.

The cooking blog elanaspanty.com is written by a blogger who has both celiac and MS. Might be worth checking out?

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ravenwoodglass Mentor
ravenwoodglass
Posted

So sorry you got this news. Did they do a spinal tap? If not you may want to request one just to be sure it is MS that you are dealing with. Gluten ataxia can cause brain lesions that look the same as MS lesions but they will not find the debris in the spinal fluid that they do with MS.  Likely since you have been gluten free for a long time that the diagnosis is correct but just in case I think you are wise to get the second opinion. 

They have made a lot of advances in MS treatment and I hope if that is what it is that the treatments are helpful for you. 

etbtbfs Rookie
etbtbfs
Posted

Check out Autoimmune Paleo. I think that is basiCally what the Wahls Protocol is

MissyBB Explorer
MissyBB
Posted

Anyone else have both?  I had my 2nd bout with optic neuritis in late February (ophthalmologist first though uveitis).  1st was 9 years ago and at that time MRI was clear.  No other MS like symptoms but MRI showed a couple inflammatory spots enough for the neurologist to diagnose.  Hoping that along with the gluten-free diet (which it sounds like many MSers are trying) and medication I'll be able to prevent and/or slow any further advancement. 

 

Yikes!  This scares me because I had a bout of optic neuritis and lost about 80% of the vision in my right eye about two years ago. I went gluten-free about a month after that and have been since. I just assumed that since my optic neuritis had not returned again I was safe. I mean, I knew Optic neuritis was linked sometimes to MS but I had no idea a 9 year time span could go by!!!! ACK!

 

I am sorry you are going through this. But I am, however rude this might sound, interested in your journey and anything that, in hindsight, you missed over the last 9 years. Now I'm a bit concerned!

 

Might I ask how old you were with your first episode of optic neuritis.

Christine0125 Contributor
Christine0125
Posted
  • Author

Missy -

I was 34 with my first bout with optic neuritis (now 43).  I'm not sure I really missed anything in the 9 years as I don't have any significant symptoms and sure hope it stays that way as I hear some are symptom free for very long stretches.  The things the neurologist asked was any feeling of pins and needles, lack of balance/coordination, any bladder control issues.  I guess I do occasionally have the pins and needles in my feet but it's certainly not noteworthy and I've never noted any big issues with balance/coordination other than normal clumsiness.  I assume you had an MRI when you had optic neuritis? I wouldn't stress about it as I'm pretty darn convinced that stress is a huge trigger in auto-immune diseases and both episodes of optic neuritis were following stressful time periods for me.   Did your vision return after the optic neuritis?  My left eye was impacted the 1st time and it took several months but went back to normal.  My right eye was impacted this time and it's still not 100% back but holding out hope that it will improve more over time.   

  • 4 weeks later...
kerrygirl15 Newbie
kerrygirl15
Posted

Hello Christine0125,

Just wanted to say that I have both ms and celiac disease too.I was diagnosed with ms last year at 21 after mri and l.p. and celiac disease just a few weeks ago after bloods and biopsy.Hoping that the gluten-free diet will improve both ms and celiac disease.My mum is 49 she was diagnosed with ms at 39.She's not so good.She has been in a wheelchair for 6 years now.Our doctor recently tested my mum and dad and sisters for celiac disease because I have it and my mum and sister have positive bloods and are waiting for biopsy results.Maybe when my mum goes on a gluten-free diet she'll improve a little,I don't know really.Anyway,I'm always praying that she'll walk again one day and I pray that I won't be in a wheelchair when I'm older.

Hope you feel better soon.

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