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Freaked About Neural Stuff...


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#1 twinkle-toez

 
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Posted 16 September 2010 - 07:59 AM

I'm sorry if I shouldn't post this here, but I"m sitting here alone crying and I didn't know what else to do.

I've been having neurological problems - parasthesias and dyasthesias, horrible night sweats, muscular weaknesses, bladder issues (increased frequency and urgency), very rarely double vision lasting a couple of hours...

I've been seeing a neurologist. He requested MRIs of my dorsal and ventral cervical spine and brain. I've had the dorsal view done (this past Monday) and am schedule for the ventral view (to be done this coming Wednesday). I meet with him the following week.
I just got a call from medical imaging saying that he's requested another MRI - this one of my lumbar spine. I'm completely freaking out. I don't know whether its' too soon for him to have seen my MRI from Monday (being only 3 days later)... If he saw it, I don't know whether this means he wants to follow whatever he saw further, or that he saw nothing and wants to look in other places. Or maybe he's just doing what I asked back in June when he told me he wanted MRIs of my cervical spine and brain - being a biology major, I freaked b/c I realized that he thought it was serious and begged him to do my entire spinal column as I had seen another specialist who came to the probable conclusion of a slipped disc (however that specialist did a much less thorough exam - only looked at my legs, not the upper body). But I don't know why he would have waited til now to book it. I"m so freaked b/c I know that he's suspicious of demylenation within my CNS... I hate waiting. I have to wait two more weeks to see him in person and get the results and I"m so freaked, and I"m beating myself up b/c if nothing shows up, then I"ll have been freaking out for no reason. AAAAGH!
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#2 ravenwoodglass

 
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Posted 16 September 2010 - 09:40 AM

Try and relax. Everything you are experiencing and more can be due to celiacs impact on the brain and nervous system. It can take much more time to heal the nerves than to heal the gut but they can heal. Do have the doctors run complete vitamin and mineral panels on you if they haven't already. Sublinual B12 may help the nerves heal a bit faster. I can't guarentee that your issues are for sure celiac related but there is a good chance they are. Be super strict with the diet and check everything from food to toiletries to nonfood things like home remodeling materials or craft supplies you may use. I hope you get some answers soon. Also if they find white lesions in the brain that do not surround the myelin sheath those are diagnostic of celiac that has impacted the brain. Doctors call them UBOs but many neuro's don't realize they are related to celiac. I know mine didn't when they were found on my MRI.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 twinkle-toez

 
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Posted 16 September 2010 - 09:48 AM

Thank you Ravenwood. Your response has helped alot. I've found the gluten-free diet to help hugely with the chronic discomfort that I had for years in my GI tract area, as well as with the migraines. I realize it's a longer route for neural healing - I'm just really scared I guess. I'm doing my best to stick to an entirely gluten-free diet that's also free of overt sources of casein and soy (meaning that if there's a flavour of rice cake I like, I don't avoid it b/c it contains milk ingredients). I'm scheduled to have sinus surgery in early October, and after that I think I may try a total paleo diet and see if that can improve things even more. Waiting is the worst though. And I really appreciate the information regarding the bright spots - I didn't know that and it's really good to know. Thank you!!! You've been beyond helpful every time I've posted and I REALLY appreciate it.
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#4 Skylark

 
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Posted 16 September 2010 - 09:48 AM

Of course you can post here. That sounds really scary.

Are you strictly gluten-free? No chance of CC or gluten around the house? Gluten can cause autoimmune demyelination similar to MS and you have to be super-strict on the diet to get rid of it.

Call the Dr's office and ask why he wants more views. There is no need for you to be in the dark like this. My Dr. lets me leave a message with a nurse and they get back to me and tell me what's happening.

I got called back by the Imaging office for a follow up mammogram and ultrasound earlier this year. I scheduled it, got off the phone and called the doctor's office. I told them I was scared and could they please tell me what was going on. They were really nice, and told me that it was just a bit of dense tissue they couldn't see.
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#5 twinkle-toez

 
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Posted 16 September 2010 - 10:21 AM

Of course you can post here. That sounds really scary.

Are you strictly gluten-free? No chance of CC or gluten around the house? Gluten can cause autoimmune demyelination similar to MS and you have to be super-strict on the diet to get rid of it.

Call the Dr's office and ask why he wants more views. There is no need for you to be in the dark like this. My Dr. lets me leave a message with a nurse and they get back to me and tell me what's happening.

I got called back by the Imaging office for a follow up mammogram and ultrasound earlier this year. I scheduled it, got off the phone and called the doctor's office. I told them I was scared and could they please tell me what was going on. They were really nice, and told me that it was just a bit of dense tissue they couldn't see.



Okay, so I called the office of the neurologist and spoke to the receptionist. Apparently the neuro-dude (my neurologist has a mullet, hence why he gets to be neuro-dude instead of Dr. xxxxxxx)and the actual results have not been seen, but the fact that the MRI was done has been sent over. Apparently there was a mix-up - Neuro-dude, as per our conversation, had requested my entire spinal column be imaged, not just the cervical and brain portion. Imaging did not tell him at the time of request that they could not do it all in one go - hence they only did cervical spine and brain. He called and told them I needed lumbar, hence why I now have that appt, and it's just a fluke that they're getting me in on the same day that I do the ventral view of my cervical spine and brain. So that's a relief. The anxiety can go back down to where it was before.

I'm being as strict as I can be given my circumstances about being gluten-free. I live in a house with my fiance and one of his friends. They are both TERRIBLE at cleaning up after themselves, the friend being worse than the fiance. I'm mostly eating salads with meat, fruit, hummus and rice cakes and I avoid preparing these things on the counters b/c I know they're contaminated. I also have my own cutting board - everything else in the house is common and there's nothing that I can do about that. The friend in particular is rather un-accommodating with most things, and this is no exception. I rarely ever use pots or pans so I figure I'm okay there. The only possible source of CC that I can think of is our BBQ grill, so perhaps its time I get a personal george foreman (sp?). My shampoos and tooth paste and all that stuff is gluten free as far as I know.

I never knew just how much we take for granted until I lost the ability to do things - and even more now that neuro-dude has me thinking I may have MS. It's really really scary, aside from the normal reasons, but also b/c I run half-marathons and dance ballet and I don't ever want my ability to do either one of those activities to be comprimised ever again. I'm actually going to go and see a naturopath next week and get food sensitivity testing done and see if I can't do something a little less traditional to help expediate my body's healing.

Thank you for the support Skylark!
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#6 Skylark

 
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Posted 16 September 2010 - 06:51 PM

I'm so glad you called and found out what happened. It must be a relief that the only problem is a goof by the imaging lab!

A personal Foreman is a great idea, but I think you probably need to be in an entirely gluten-free kitchen. You can get a condition that is indistinguishable from MS from gluten autoimmunity and people with neuro symptoms are very, very sensitive to gluten. Don't accept a diagnosis of standard MS without getting yourself into a living situation where there is no chance of CC.

I know this sounds hard, but healing may mean sitting down, explaining that you think you have gluten-sensitive MS, and telling these guys that they can no longer bring gluten of any kind into the house. Then you would replace teflon pots and pans and anything else you can't scrub really well and clean all the gluten out of the kitchen. If that doesn't work, you may have to move out for a while, until your fiance gets his head around the fact that you cannot live without a gluten-free kitchen. It sounds like your living situation needs work anyway.

It may turn out the neuro symptoms aren't related to gluten, but you won't know until you are 100% gluten-free.
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#7 twinkle-toez

 
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Posted 19 September 2010 - 05:01 AM

A personal Foreman is a great idea, but I think you probably need to be in an entirely gluten-free kitchen. You can get a condition that is indistinguishable from MS from gluten autoimmunity and people with neuro symptoms are very, very sensitive to gluten. Don't accept a diagnosis of standard MS without getting yourself into a living situation where there is no chance of CC.

I know this sounds hard, but healing may mean sitting down, explaining that you think you have gluten-sensitive MS, and telling these guys that they can no longer bring gluten of any kind into the house. Then you would replace teflon pots and pans and anything else you can't scrub really well and clean all the gluten out of the kitchen. If that doesn't work, you may have to move out for a while, until your fiance gets his head around the fact that you cannot live without a gluten-free kitchen. It sounds like your living situation needs work anyway.

It may turn out the neuro symptoms aren't related to gluten, but you won't know until you are 100% gluten-free.



Oh dear... now there's a conversation that won't go over well... I mean, my fiance would be fine with it. He's greatly cut down on gluten - his only overtly-gluten containing guilty pleasures now are the crackers left over in the cupboard that I can't eat as well as cereal. He eats more gluten outside the house, but is pretty good about it inside the house. The housemate... that would not fly AT ALL! I know how conversations about mutual responsibility for cleaning the kitty litter goes (one of the cats belongs to him), so I can only imagine how a conversation regarding 'you can't eat any of the things that you consume on a regular basis anymore inside this house' (phrased more politely of course) would go. It would be BAD. :( And I"m a student on an extremely tight budget, so moving out of the house really isn't a financial possibility for me. Maybe I switch to preparing my meals in the basement (our kitchen is on the main level) and just set aside my own pots and pans down there...

The question that keeps poking in the back of my head is that if the neural problems are gluten-related, why did they start to get better BEFORE I cut out gluten? Is that normal? I mean, I know that I do have a gluten problem b/c I feel so much better gastrointestinally when I don't eat the stuff - and that followed a course of what I would expect - I eat gluten I feel sick, I cut it out I feel better. My neural stuff showed up while I was still consuming gluten, but it also started to improve before I cut gluten out of my diet... Is that normal for gluten-induced neural problems?
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#8 ravenwoodglass

 
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Posted 19 September 2010 - 05:14 AM

My neural stuff showed up while I was still consuming gluten, but it also started to improve before I cut gluten out of my diet... Is that normal for gluten-induced neural problems?


For years a lot of my neuro issues would get worse then get better then get worse. I can only speak for myself but this went on for literally years and years before the issues came to stay and progress downward from there. I think that contributed to them thinking it was MS as MS can resolve then change presentation also.
With the roommate issue, can you make a spot that is just for you to prepare your food? Is the basement where your sleeping area is? If it is you could put a microwave, a small cart for preperation and bring a crockpot and rice cooker down there. While your roommate could stand to grow up a bit, he should really be responsible for his own messes, that may not happen while you are there. A plasic tub could be used to carry your dirty stuff to the sink for washing and tubs could be used to hold your own personal dishes etc.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 Takala

 
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Posted 19 September 2010 - 08:34 AM

Hi,

I'm gluten intolerant. I self diagnosed after extensive research, based on symptoms and because of my dramatic response to a trial diet, because my last neurologist had no idea what it means when you have bright spots in your brain.

I notice a lot of the medical people frown on this sort of thing, all I can say is, they need to clean up their own profession first, and stop letting the insurance companies tell them to slowly x ray people to death at 2 month intervals, and then call it a day, before they lecture the patients.

I have mostly recovered from the neurological symptoms after seven years of being gluten free. I've had lots of doctors earlier in my life when I was a young adult either blow me off, imply or call me a head case in spite of test results showing strange things they had no explanation for, or just say, sorry, learn to live with it and you probably have MS. Except that when they did the spinal tap.... I didn't have MS.

I also had bona fide spinal damage, from being undiagnosed for my entire adult life. Some of these problems will never completely go away, and I will be plagued with them for the rest of my life. Fortunately my current PCP believes me about the "other stuff," because he is amazed I manage to function with this crappy a cervical spine. I had a very good doctor way back who sent me for physical therapy to build up my supporting muscles, which I still do.

This damage is caused by long term malnutrition. Being celiac or gluten intolerant means that the lining of the small intestine gets damaged, and you don't absorb vital nutrients as well. You will be short on the B vitamin complex and calcium. The lack of B vitamins will cause mood swings, also. This mal- absorbtion can also cause all sort of strange food cravings for intensely sweet things and carbohydrates. If you indulge, you can get a blood sugar spike, and then a crash, over and over again. You brain does not intrepret a calcium imbalance in your bloodstream, caused by not absorbing it, as you're short on calcium, but as hunger, but it will direct your kidneys, which filter the blood, to start removing it from the storage area of your bones. This in turn can cause all sorts of little chronic problems not only with your kidneys, but with your bladder getting crystals, stones, and infections.

This is why, if you haven't been told already, you should be taking gluten free vitamin and mineral supplements.

Undiagnosed, unacknowledged, and untreated by avoiding gluten, you then become more likely to develop all sorts of the other related diseases, such as thyroid auto immunity, arthritis, diabetes, gallbladder and liver problems, kidney problems, bone loss, osteoporosis, fertility problems, endometriosis, cysts, etc.

I don't know if you have had any blood tests yet for celiac or gluten sensitivity, but I want to warn you that they are not always accurate, especially if you have been off of gluten for a long time. You can get yourself tested to see if you carry the HLA DQ genes that are associated with being gluten intolerant or celiac. The genetic testing is getting more refined all the time. This won't "prove" you have anything, but it will show if you're in the 30% of the population that carries them. Only about one in 100 people currently are thought to actually have the disease, but the majority of them are still out there, undiagnosed.

If you really are gluten intolerant, getting stricter about cross contamination issues can get rid of most of the neuro symptoms, and you can be healthy, but this means you have to make a sort of mental leap that you deserve to be healthy. You will be surrounded most of your life by people who just sort of don't get it. Most of them don't mean ill will towards you, they are just not thinking, or they are not educated. A few, now and then, do mean ill will towards you, or at least passive aggressively have no intent of cooperating in your comfort, and you have to deal with them, too.

You can get easily cross contaminated by family members, so they need to be either super vigilant about cleaning up after themselves and using gluten free soaps/shampoos and brushing their teeth before kissing, or you're going to get repeatedly glutened. They make lots of gluten free cereals now and even Bob's Red Mill has gluten free certified oats. My spouse switched over to gluten free in the house voluntarily because it was easier. If we want something gluten free, we usually bake it. I keep a big stash of various gluten free flours and the other baking staples around. We also try to keep frozen gluten free tortillas or crusts around for spontaneous pizza making.

I doubt you will get the roomate to do this, so I would suggest you either, long term, find other living arrangements, or figure out how to segregate your cooking stuff from his. Young males tend to eat a lot of cheap carbohydrates.

You also need to be wary of pets. Especially cats, because they tend to be everywhere on the furniture. I have all pets now except one ancient barn cat (who gets a little canned fish food) on wheat/barley/oats free pet foods, because not only are some of them allergic, but I don't want to be licked or drooled on or be breathing pet dander from them licking themselves when they're eating the wrong thing. I thought this wouldn't matter at first, then I observed several chain reactions when Pet A who was still eating regular Wheat Trash Pet Food drank out of the communal water bowl and then Pet B, who was wheat free, shared. :ph34r: One time we had another mini disaster when a pet food changed its formula from wheat free to having oats, which must have been badly cross contaminated, because I ended up with a dog who licked himself a massive raw spot in a few hours and then we have to have treatment and another vet bill. Some cat litter can, also, not be gluten free.

The interesting thing is the cats really like the dry wheat free cat food. I thought, yeah sure, the cat will probably not want to eat this 'duck and potato' or whatever weird flavor it is I picked up a bag of last, but they're like Oh Wow and digging into it like the way dogs eat. If you read the labels of some of the more heavily advertised pet foods, the stuff they put into it is sort of gross- if cats were meant to eat that, they 'd be out there grazing or using spoons.
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