Gluten-Free For Years-Could Cc Cause All These Ms Like Syptoms?

[kittylover1]

   Years ago,around 10 or more, I had some symptoms that led to being tested for MS,Lyme and Lupus. My memory is pretty bad going that far back so the only symptoms I recall were fatigue and brain fog(I'm sure there were others though)  Everything came back fine. Within a few years I began having major GI issues, with diarreah all the time. I had blood tests and endoscopy to check for Celiac and they found nothing(I also had mood swings and body aches at this time) I was desperate and read the the gluten-free diet might help anyways so I tried it and immediately began feeling better. A year later my brother was diagnosed with Celiac and a few years ago my niece discovered she has problems with it as well.

   Although my GI system was much better I still had some problems and was eventually diagnosed with IBS.Currently my main issues are gas and incomplete evacuation. In the last few years I have developed many more neuro isssues. The most memorable were in 2012 when for several months I had a burning sensation on my torso that came and went and in 2013 I had extreme itchiness on both sides of torso that came and went for at least a month. I have also had fatigue,brain fog, clumsiness, memory problems, trouble speaking(combining words,using wrong words,forgetting words) lightheadedness, a bit of what seems to be foot drop(my foot won't lift but just for a step or 2 and then it's fine) what may have been 'MS hug' (extreme tenderness/pain on left side from halfway down ribcage to a little under ribcage. Lasted 2 days and went away. One week later I had same thing but on right side!) and veering towards the left when walking. This last symptom is what led me to make a neuro apt that comes up in 2 weeks. I had not drift walked in a while and out of the blue I did in in a parking lot. Every other time it had been in the safety of my workplace halls. It freaked me out that it could happen anytime,anywhere and possibly lead to being hit by a car!

   I imagine the doctor will want to test me for MS,etc. Now that I'm reading that you can have neuro issues even once gluten-free(and I am not super careful as far as CC. I will eat products made on shared equipment, don't know if all my products are gluten-free,etc. I figured since the diarreah stopped years ago I was doing okay in that regards) I'm not sure what to think. Could this be the cause of all my symptoms,even the "MS hug" or am I barking up the wrong tree? Thanks so much for any replies!    Karen

[kittylover1]

Just wanted to add I had my B12 level checked in January and it was over 1000(I'm vegan and supplement plus fortified foods)

[cyclinglady]

Welcome!

Seems you have two choices: 1) a gluten challenge (eat 1 to 2 slices of bread per day for 12 weeks and insist on a complete celiac blood panel) or stay gluten free but REALLY gluten free. Getting re-tested now that you have a family diagnosis should not be hard. Get copies of EVERYTHING!

Read up on cross contamination under our "Coping" section if you should decide to remain gluten free. Also research gluten ataxia which can have MS-like symptoms.

Ask away! We are here to help!

[ravenwoodglass]

If you do have celiac then yes CC and occasionally eating something that isn't gluten free can keep those antibodies active. If you have ataxia when they do an MRI on your brain chances are good that UBOs wll be found. Those are white spots that will show up on the MRI. They are very similiar to the lesions that are found with MS but often in locations that are not common for MS lesions. If they are found you should have a spinal tap to firmly rule out MS. The demylinating lesions of MS will throw debris into the spinal fluid. If that debris is not found then you can be pretty certain that you have gluten ataxia. Make sure the neuro you see is familiar with gluten ataxia. The doctor who did mine wasn't and it delayed my diagnosis be another 4 or 5 years. If you do have ataxia you need to be very strict with the diet to allow the nervous system to heal. 

Your nervous system symptoms are very similiar to what my were in the early to mid stages of it's progression.  I hope you get some answers soon and that these symptoms improve for you. 

[kittylover1]

Thanks! I think I'd be way to afraid to do the gluten challenge. I don't want to experience that kind of pain again! I'm going to be reading up more about CC but have some questions about which products I should avoid. Currently I eat things like Chex,which there seems to be a lot of controversy over, and Gorilla Munch cereal(which tests at 10ppm or less). Also So Delicious ice creams, whose website says they use strict quality control measures and state of the art testing but I don't see any mention of what ppm they test at(I emailed and asked)  Should I avoid all foods that don't test to below a certain level? Or only buy ones made in dedicated facilities? I'm also reading that I can get glutened by kissing my non celiac husband!  I had no problem when I initially stopped eating gluten but this is seeming really overwhelming!

[cyclinglady]

The foods that you mentioned are all fine. Kissing your hubby? It is true that he can accidentally gluten you. Washing hands and brushing teeth after consuming gluten should be done by your husband. Better yet, can you have your entire house go gluten free? My kid who does not have celiac disease, gets her gluten fix at school and at restaurants. Hubby and I need a safe zone where we can let down our guard!

[greenbeanie]

My own experience has been that cc could cause MS-like symptoms even for someone without a firm celiac diagnosis. I too was tested for MS several years before going gluten free and getting celiac diagnosed in a first-defree relative, and MS was ruled out by a neurologist at the time. The balance and coordination issues had gotten so bad that I was walking into walls, slamming my hands in cupboards, and falling down stairs on a daily basis. My memory had gotten so bad that I was forgetting common words like days of the week. I was in my mid-30s at the time, so this definitely wasn't normal. I was admitted to the hospital but left a couple days later with no answers. Fast forward several years, and my daughter was diagnosed with celiac. My entire health history and decades of GI symptoms pointed to it too, but I'd been gluten light for many years and my celiac tests were negative. I went strictly gluten free along with my daughter anyway, and the GI symptoms started improving right away and were much better within a few weeks. The neuro stuff was slower to improve, but within a few months I was no longer walking into doorframes on a regular basis. Two years later, I don't feel like all the neuro stuff is totally gone, but it's vastly improved .

Anyhow, it's a long story but recently both my daughter and I were having problems again, and had no idea why. Her tTG rose, and I'd been having continued fat malabsorption plus had also started having shaky balance on stairs again. I'd dismissed the balance stuff as just tiredness from work, etc. We eventually discovered that we were both apparently reacting to low levels of cc (under 20ppm) in certain gluten-free products. We eliminated those products, her tTG fell again within three weeks, and my symptoms resolved. This actually led both my own GI and a celiac specialist that my daughter saw to conclude that I have "presumd celiac" and that my daughter was obviously sensitive to levels under 20ppm. I realize this is unusual, and I hope that once we've both healed more it will no longer be an issue. But the point is that my MS-like symptoms were triggered by very low levels of cc. Happily, now that I know that I was able to fix it. So if it is gluten causing your problems (whether it's celiac or not), it may take extra vigilance to make sure you're not eating anything processed on shared equipment, etc. (even if such products are labeled gluten-free). Good luck!

[kittylover1]

Wow Greenbeanie, that's incredible! That's exactly why I was wondering about avoiding foods unless they test even lower than 20 ppm. The information I have found online indicates that people with gluten ataxia may need to be even more strict in their diet. Looks like I have a lot of product investigating to do. My neuro apt is in 2 weeks and I will be very curious to see if she has even heard of this. Oh,and I see one of your symptoms was joint pain. I have had that as well. My finger joints used to always hurt. When I mentioned it to my doctor she basically blew me off and said that can happen as we get older( I'm only 46!) When I had my checkup this year I saw her nurse practioner. At this point only one finger was hurting,but it hurt a lot and quite often. She examined me fingers and sent me for x-rays on that one finger. No arthritis was found so the best she could come up with was that it was from overuse(I'm right handed and it was on my left hand so I doubted that) She suggested Motrin and heat and to follow up if that didn't help. Neither did help but after around another month of pain it suddenly stopped and has been fine since. Very odd!

[kerrygirl15]

Hi kittyforever1,

Just wanted to say I hope you find out what's causing your problems soon.I have both M.S. and celiac disease.Diagnosed with M.S.last year at 21 and celiac a few weeks ago.Anyway,good luck!

[kittylover1]

Just wanted to update- I saw the neurologist and she was absolutely useless! My neuro exam was normal,which I thought it might be since I felt fine that day. She did an ELISA test for Lyme and ordered a brain MRI,assuring me if they were both normal I definately didn't have either Lyme or MS(guess that's why some people take so long to be diagnosed with either....)  Then she started saying that maybe I have several things going on. Perhaps I'm dehydrated,perhaps I need more salt in my diet(????) perhaps I have a pinched nerve and maybe at some point I'd want to see a nutritionist! These suggestions were made without asking one question about my diet or fluid intake. At this point I knew she was just a lazy doctor who didn't care about finding out what is wrong with me. The Lyme test was normal and a week after the MRI I emailed her office and was told she was on vacation but the MRI was normal. Never heard another word from her. I got a copy of the MRI images on  a disk and am going to mail it to my cousin's husband(he's a neurologist and agreed to take a look)

   In the meantime something happened that really makes me a bit more convinced that my problems are related to gluten. On Memorial Day I arrived at a cookout and immediately ate 3 Pringles chips. For the rest of the week I had tingling in my left foot and my mood was bad,bad,bad!The next week I was back to normal except for one day when I felt off balance and another when I had some wird leg itching that only lasted maybe 10 minutes. Not till later when I looked at a Pringles can did I realize that Pringles contain wheat! I searched online for someone locally who might be knowlegable about this and found Dr Fasano  Open Original Shared Link.   Today I called and was lucky enough to get an appointment with him Sept 17!Hopefully he will be able to help me out,if nothing else I doubt he will suggest dehydration!

[cristiana]

Kittylover - sorry you haven't got the answers yet but that is great news about Dr Fasano.  I hope you get the answers you are after then.  I do sympathise as for me my continuing neuro issues are amongst my most vexing symptoms although yesterday I suddenly realised that the tingling I have been experiencing on and off since DX in my left calf has finally gone - I have been taking large doses of B12 and magnesium amongst other things.  But for several months now I have had buzzing in my cheek, although it is lessening.  I have had the burning on the left side of my torso, too, that lasted a year, and I still don't know if that was neuro pain caused by shingles without the rash or plain old nerve pain to do with my celiac disease.  I wish Dr Fasano lived near me!  But greenbeanie's post has really made me think and I am going to really seek out any causes of low level contamination because for me I think that is what it could be.  

 

All the best.

[JamieRmusic]

On 5/27/2015 at 2:51 AM, cyclinglady said:

Welcome!

 

Seems you have two choices: 1) a gluten challenge (eat 1 to 2 slices of bread per day for 12 weeks and insist on a complete celiac blood panel) or stay gluten free but REALLY gluten free. Getting re-tested now that you have a family diagnosis should not be hard. Get copies of EVERYTHING!

 

Read up on cross contamination under our "Coping" section if you should decide to remain gluten free. Also research gluten ataxia which can have MS-like symptoms.

 

Ask away! We are here to help!

They have tests to find out if you are allergic, intolerant or have full blown celiac disease. Don't just begin eating bread it takes 3-6 months before the inflammation calms down. Go for the D-Xylose test... Open Original Shared Link

[JamieRmusic]

On 7/17/2015 at 7:49 PM, kittylover1 said:

Just wanted to update- I saw the neurologist and she was absolutely useless! My neuro exam was normal,which I thought it might be since I felt fine that day. She did an ELISA test for Lyme and ordered a brain MRI,assuring me if they were both normal I definately didn't have either Lyme or MS(guess that's why some people take so long to be diagnosed with either....)  Then she started saying that maybe I have several things going on. Perhaps I'm dehydrated,perhaps I need more salt in my diet(????) perhaps I have a pinched nerve and maybe at some point I'd want to see a nutritionist! These suggestions were made without asking one question about my diet or fluid intake. At this point I knew she was just a lazy doctor who didn't care about finding out what is wrong with me. The Lyme test was normal and a week after the MRI I emailed her office and was told she was on vacation but the MRI was normal. Never heard another word from her. I got a copy of the MRI images on  a disk and am going to mail it to my cousin's husband(he's a neurologist and agreed to take a look)

   In the meantime something happened that really makes me a bit more convinced that my problems are related to gluten. On Memorial Day I arrived at a cookout and immediately ate 3 Pringles chips. For the rest of the week I had tingling in my left foot and my mood was bad,bad,bad!The next week I was back to normal except for one day when I felt off balance and another when I had some wird leg itching that only lasted maybe 10 minutes. Not till later when I looked at a Pringles can did I realize that Pringles contain wheat! I searched online for someone locally who might be knowlegable about this and found Dr Fasano  Open Original Shared Link.   Today I called and was lucky enough to get an appointment with him Sept 17!Hopefully he will be able to help me out,if nothing else I doubt he will suggest dehydration!

Keep searching till you find a good doctor. I'm 4.5 years in now of dealing with hospitals and doctors. They have all been the worst up until now. Finally got into the best in my country and they are doing all tests from scratch. Including ACTUALLY listening to what I say, and not just nod and then say no it's not that. Keep pushing... stay strong.