Intro And Neuro Symptoms

[HannahZ]

Hi Everyone,

I am new to these boards. I have been reading though and the information posted by others has been very helpful. Thank you to all of you but especially to Ravenwoodglass.

 

Five years ago, one of my sons was diagnosed with type 1 diabetes. While he was in the hospital, he was screened for celiac, and the blood tests came back positive. He ended up with a celiac diagnosis too, and it became apparent he could produce more of his own insulin when adhering strictly to the gluten-free diet. He experienced a prolonged t1d "honeymoon" which did not end until he had been in college for a year. While away at school he has had many more gluten accidents which I am sure was a contributing factor to his now need for more injected insulin. 

 

One funny detail is the medical doctors insisted that my son would  need less insulin when glutened (as food won't be absorbed properly for a little while afterwards). But for my son, it was always the opposite. During his t1d "honeymoon period" he still made much insulin -- his honeymoon lasted an unprecedented three years  (as compared to typical, six months for a newly diagnosed t1d patient). My son's basal insulin need would at least double after a glutening. It would take days for his body's own residual insulin production to return to normal. (I haven't bothered to explain what a t1d honeymoon period is, as it probably is of no interest to people who do not have t1d in their family -- and those who do have it in the family likely know what the honeymoon is -- hope that's ok). 

 

In 2011 I did a gluten challenge and had great difficulty with it. I had gone gluten free a year earlier to see what the challenges were, so as to help my son with his diet. Three weeks into the gluten-free diet I had noticed great improvements in how I felt. On the challenge, I could not consume more than a tiny amount of gluten (half a saltine) - I would then have severe dizziness and watery D. Foolishly, I continued with the challenge, going on an off gluten that month (going off when I had to drive the next day). The dizziness was far too severe to allow me to drive, and the D kept me near a bathroom. My antibodies had tested negative (not surprising as I had been gluten-free for the year before being tested). My endoscopy was negative for celiac, and I was pronounced non-celiac, and just presumed gluten sensitive by my reaction to gluten (the dizziness and D).

 

Long story short - the four years since then have been bad news. I had the endoscopy in Aug 2011and started to recover from it, but then started getting worse again in Oct 2011. It took me about 15 months to figure out I had become more sensitive to CC. I stopped eating diner fried eggs (for example) and the persistent D went away.  But neurological problems continued getting worse. Next thing I was getting worked up for possible MS, and had abnormal brain and cervical spine MRIs. But oddly, I was presenting with a relapsing remitting pattern in terms of symptoms, while the images looked more like PPMS -- few lesions,  but in very bad locations. Lesions to cervical spine, brainstem, cerebellum. Also, my vitamin levels were dropping, especially B12 and zinc. Actually, the drop in B12 happened earlier (around the time the damage to spinal cord was detected). More recently I was diagnosed as deficient in zinc. The detection of the zinc deficiency is helpful as I had also developed new immune system problems - low lymphocyte counts, low celiac disease cell counts -- I was tested for HIV eighteen months ago (when immune cell counts became abnormal and I was getting repeated shingles, odd for someone my age). I was HIV negative (no surprise there). So it seems zinc deficiency interferes with production of immune system blood cells. I am hoping the white blood cells will normalize with zinc supplementation. Of course it took forever to discover the zinc deficiency, since I have "no risk factors" for it -- since I was officially deemed celiac disease negative with my negative endoscopy (which I should add was done properly, according to all accepted rules, by a top expert in celiac disease). 

 

I had a neurologist who did not bother with spinal tap, and actually tried to conceal from me some of the abnormal findings (I think he thought it was untreatable PPMS and I was better off not knowing, and he might have figured my neuro abnormalities were still mild enough he could get away with delaying the "bad news"). But I was having horrible flares and finally consulted a different neuro, who did the spinal tap. NEGATIVE for o-bands, negative for increased igg index 0-- and slightly LOW rather than high spinal fluid protein level.  I also recently discovered there were already periventricular white matter hyperintensities on a brain MRI done in 2003. These were not mentioned in the radiology report from 2003 (ridiculous). I have none of the typical "Dawson's fingers" that one sees with MS. Mine are smaller and milder. (That too would be consistent with PPMS, less damage visible on brain MRI -- unless, it isn't MS at all, which might be suggested by the spinal tap done a month ago which was negative for all signs of MS). 

 

So given the chronology and the fact I took ill especially immediately following the gluten challenge, and because I realized I am very sensitive to CC (cross contamination) --  about three weeks ago I tightened up the gluten-free diet, eliminating all grains (as I have heard grains, even gluten-free ones, can have miniscule contamination with gluten). I am doing so much better. No dizzy spells since eliminating all grains and other processed foods!

 

I have lots of damage, numbness in legs, feet, and especially toes, and some in hands and on my face (inside my mouth too, and I have had swallowing problems). I have some hearing loss  too which I think is a result of damage near the acoustic nerve, in my cerebellum. I lost my acoustic reflexes (more evidence of "dings" in brainstem). But I will stick to my new, very strict diet, and will see how it goes. 

 

Since going on the very clean diet (for presumed super sensitivity to gluten),I have had some new mild pain in formerly totally numb toes. I seem to be regaining some more sensation on my face. And I have had no vertigo, and no light headeness!  

 

I have never had a positive blood test for TTG or anything like that, but two of my three sons tested positive (DGP IGG, TTG). I did an enterolab test for gliadin, and the value actually tripled between the time I was on the gluten challenge (in 2011) and summer of 2013, when I was already showing significant signs and symptoms of MS. In 2013 I had been on a gluten-free diet since my gluten challenge ended in summer 2011, but the Enterolab report commented that there likely were hidden sources of gluten in my diet as I was still producing the gliadin antibodies and the level was so much higher. 

 

I can't be certain the cleaner diet is responsible for me feeling better these last 3 weeks -- since my symptoms have had a waxing and waning quality. However, I am going to give it a serious trial, and for at least the next year I will not do anything that could be risky, in terms of diet (I will continue to avoid processed food and grains). 

 

I appreciate all the helpful advice posted on this site. Any advice directed my way would be most welcome. I will keep you posted on my progress. Thanks again to everyone who has posted helpful info in the past.

Cheers,

Hannah

 

[HannahZ]

I wanted to add onto my earlier post with the additional info that the celiac disease possibility (as cause of my neurological signs and symptoms) was raised by two MS specialists -- at different MS centers -- one in NY and one out of state. It was at one of these centers I finally had a spinal tap that showed no o-bands. But both these neurologists suggested celiac even before seeing the absence of o-bands. It isn't just my wishful thinking that it might be celiac rather than MS. The MS specialists seem to wonder/doubt MS perhaps because the lesions are not presenting quite the way MS lesions do, and I don't have the usual presentation of MS symptoms (no bladder problems for example?) -- so it would be a very atypical MS. 

[ravenwoodglass]

Welcome to the board. Glad to hear you are already starting to feel better. I know folks with DH often have false negative tests and am starting to wonder if maybe folks with ataxia do also. Not something that has been researched at this point though as far as I know.

You have some pretty savvy neuros there, congrats on that as mine was clueless and told me my lesions meant nothing and I just wanted to be sick.

Have they tested your B12 levels? If they have what range did they use? It used to be considered that 250 or so was the low cut off but that has changed to 500 in the last few years. Sublingual B12 may be helpful for you if your levels are dropping or low. It can be helpful to look at a record of the levels since levels can be dropping and still register at normal after the body stops being able to utilize it.

Be VERY strict with the diet. The Newbie 101 thread at the top of the coping section can be helpful in showing us all we need to do to keep safe.

I hope you recover fully soon but it can take some time. I also hope your son is getting better at keeping himself safe as with Type 1 is is crucial that he do all he can to keep both under complete control.

[bartfull]

There seems to be research showing people with gluten sensitivity are even more likely to have neurological problems than those with celiac. Open Original Shared Link(Thanks to KnittyKitty for posting this.)

 

So even if you went on a true gluten challenge (half a cracker a day isn't enough) and tested negative, a gluten-free diet might be the ticket.

[HannahZ]

Thank you to Bartful and to Ravenwoodglass for your helpful replies. 

 

I should have mentioned, I tested negative for TTg etc. only after having been gluten free for a year. So I think the negative was meaningless. 

 

Also, I was worked up for elevated prolactin in my early 20s (which I have since read could be a marker for active celiac). Also, my two sons who did test positive for celiac antibodies had exceptionally low total cholesterol in the years before we became aware of the problem. My t1d son had total cholesterol of 107. My other son had total cholesterol tested at 127. Mine tested at 119 and the doctor who got that level for me commented it was the lowest total cholesterol he had ever seen. All of us have had cholesterol values rise since commencing the gluten-free diet. Mine is now in the range 180-200. 

 

One of the reasons I did the gluten-free challenge and went through the endoscopy was to spare my youngest child (with positive antibodies but no other illnesses like t1d) from having to undergo the endoscopy. I thought if I had the damaged villi too then we could just skip the endoscopy for him. We did end up skipping his endoscopy anyway, and he is on the gluten-free diet with an official "gluten sensitive" diagnosis and medical letter for the school. 

 

I am DQ2 positive and my older son with t1d actually has two copies of DQ2. This son's double DQ2 is supposed to have given him a 50X the normal chance of developing celiac. But I gene  tested my youngest son later through Enterolab, and surprise! - he has two copies of a DQ1 gene (501 I think) that has been identified as a main neurological gluten gene (I think that research was done in England). He did have the full positive celiac antibodies, even without any copies of DQ2 or DQ8. One celiac specialist suggested my youngest son could have a "half copy" of a DQ2 gene which would be enough to account for all of it -- the celiac specialist has seen it before.

 

I am overweight -- which is one reason there was such a delay in my getting the antibodies tested. Some doctors are so ignorant. By the time I saw a doctor who knew some adult celiac patients are overweight, I had already been gluten free for a year. And then when I introduced gluten, it made me so ill, I don't think the "challenge" was legitimate. So who knows if I ever had positive TTG or any of the rest. 

 

That said, I agree with the comment from Bartful -- this might not be celiac but gluten sensitivity. My sons are all well over 6 feet tall, even my youngest who just turned 14. I am 5'10" and not a small person at all. But the gluten free diet did make me gain more weight and my digestion became so fast I felt hungry all the time for six months after going gluten-free. More recently I have been losing but it might be related to the deficiency in zinc. 

 

My B12 was at 530 at the start of the gluten challenge, then was 500 when the fatigue hit, and was down to 300 six months later -- other vitamin levels were dropping too. None of the doctors noticed, as none of these values were then flagged abnormal, but when I made note of the values over time (tested by different doctors), they were all dropping significantly throughout that year. Now more recently, my zinc is below normal and I have been prescribed supplements. 

 

I have been offered no MS treatment by any of the neurologists, so I am not refusing any other treatment. The idea might be if it is MS then I am too late to benefit from the DMDs for MS, or maybe they think PPMS (which is untreatable), but that is not consistent with the flares I have had (PPMS is only diagnosed when there are no flares but just a steady decline in motor/walking skills). My disability level is still low enough as to be virtually invisible to other people. I can still walk for miles, and I'm still swimming long distances too. I had a severe flare over the summer and had trouble walking then, but thankfully over time I recovered. The dizziness was very severe then too, and that did continue after my walking improved. However, on the very restricted diet (totally clean gluten-free), the dizziness is GONE. I'm hoping for the best with this diet, but only time will tell if the improvement is from the diet or just random coincidence (that I improved after eliminating possible sources of gluten CC). 

 

Thanks again for the helpful replies, Ravenwoodglass and Bartful. 

Hannah

[wetcat]

Have you heard of gluten ataxia? It is an autoimmune reaction to gluten (like celiac and dermatitis herpetiformis) except that the antibodies are against your nervous system and especially the cerebellum part of the brain. People with gluten ataxia may not have celiac disease or test positive on any of the tests done to detect celiac, but it is critical that they strictly (no cheating)follow a gluten free diet. Mayo clinic recently covered the condition in a newsletter article about celiac disease and similar conditions. Not many doctors know about this condition yet- it was only made official in 2012. Look it up and save your life. Good luck. The only reason i know about it is because i have gluten ataxia, too.

Hi Everyone,

I am new to these boards. I have been reading though and the information posted by others has been very helpful. Thank you to all of you but especially to Ravenwoodglass.

Five years ago, one of my sons was diagnosed with type 1 diabetes. While he was in the hospital, he was screened for celiac, and the blood tests came back positive. He ended up with a celiac diagnosis too, and it became apparent he could produce more of his own insulin when adhering strictly to the gluten-free diet. He experienced a prolonged t1d "honeymoon" which did not end until he had been in college for a year. While away at school he has had many more gluten accidents which I am sure was a contributing factor to his now need for more injected insulin.

One funny detail is the medical doctors insisted that my son would need less insulin when glutened (as food won't be absorbed properly for a little while afterwards). But for my son, it was always the opposite. During his t1d "honeymoon period" he still made much insulin -- his honeymoon lasted an unprecedented three years (as compared to typical, six months for a newly diagnosed t1d patient). My son's basal insulin need would at least double after a glutening. It would take days for his body's own residual insulin production to return to normal. (I haven't bothered to explain what a t1d honeymoon period is, as it probably is of no interest to people who do not have t1d in their family -- and those who do have it in the family likely know what the honeymoon is -- hope that's ok).

In 2011 I did a gluten challenge and had great difficulty with it. I had gone gluten free a year earlier to see what the challenges were, so as to help my son with his diet. Three weeks into the gluten-free diet I had noticed great improvements in how I felt. On the challenge, I could not consume more than a tiny amount of gluten (half a saltine) - I would then have severe dizziness and watery D. Foolishly, I continued with the challenge, going on an off gluten that month (going off when I had to drive the next day). The dizziness was far too severe to allow me to drive, and the D kept me near a bathroom. My antibodies had tested negative (not surprising as I had been gluten-free for the year before being tested). My endoscopy was negative for celiac, and I was pronounced non-celiac, and just presumed gluten sensitive by my reaction to gluten (the dizziness and D).

Long story short - the four years since then have been bad news. I had the endoscopy in Aug 2011and started to recover from it, but then started getting worse again in Oct 2011. It took me about 15 months to figure out I had become more sensitive to CC. I stopped eating diner fried eggs (for example) and the persistent D went away. But neurological problems continued getting worse. Next thing I was getting worked up for possible MS, and had abnormal brain and cervical spine MRIs. But oddly, I was presenting with a relapsing remitting pattern in terms of symptoms, while the images looked more like PPMS -- few lesions, but in very bad locations. Lesions to cervical spine, brainstem, cerebellum. Also, my vitamin levels were dropping, especially B12 and zinc. Actually, the drop in B12 happened earlier (around the time the damage to spinal cord was detected). More recently I was diagnosed as deficient in zinc. The detection of the zinc deficiency is helpful as I had also developed new immune system problems - low lymphocyte counts, low celiac disease cell counts -- I was tested for HIV eighteen months ago (when immune cell counts became abnormal and I was getting repeated shingles, odd for someone my age). I was HIV negative (no surprise there). So it seems zinc deficiency interferes with production of immune system blood cells. I am hoping the white blood cells will normalize with zinc supplementation. Of course it took forever to discover the zinc deficiency, since I have "no risk factors" for it -- since I was officially deemed celiac disease negative with my negative endoscopy (which I should add was done properly, according to all accepted rules, by a top expert in celiac disease).

I had a neurologist who did not bother with spinal tap, and actually tried to conceal from me some of the abnormal findings (I think he thought it was untreatable PPMS and I was better off not knowing, and he might have figured my neuro abnormalities were still mild enough he could get away with delaying the "bad news"). But I was having horrible flares and finally consulted a different neuro, who did the spinal tap. NEGATIVE for o-bands, negative for increased igg index 0-- and slightly LOW rather than high spinal fluid protein level. I also recently discovered there were already periventricular white matter hyperintensities on a brain MRI done in 2003. These were not mentioned in the radiology report from 2003 (ridiculous). I have none of the typical "Dawson's fingers" that one sees with MS. Mine are smaller and milder. (That too would be consistent with PPMS, less damage visible on brain MRI -- unless, it isn't MS at all, which might be suggested by the spinal tap done a month ago which was negative for all signs of MS).

So given the chronology and the fact I took ill especially immediately following the gluten challenge, and because I realized I am very sensitive to CC (cross contamination) -- about three weeks ago I tightened up the gluten-free diet, eliminating all grains (as I have heard grains, even gluten-free ones, can have miniscule contamination with gluten). I am doing so much better. No dizzy spells since eliminating all grains and other processed foods!

I have lots of damage, numbness in legs, feet, and especially toes, and some in hands and on my face (inside my mouth too, and I have had swallowing problems). I have some hearing loss too which I think is a result of damage near the acoustic nerve, in my cerebellum. I lost my acoustic reflexes (more evidence of "dings" in brainstem). But I will stick to my new, very strict diet, and will see how it goes.

Since going on the very clean diet (for presumed super sensitivity to gluten),I have had some new mild pain in formerly totally numb toes. I seem to be regaining some more sensation on my face. And I have had no vertigo, and no light headeness!

I have never had a positive blood test for TTG or anything like that, but two of my three sons tested positive (DGP IGG, TTG). I did an enterolab test for gliadin, and the value actually tripled between the time I was on the gluten challenge (in 2011) and summer of 2013, when I was already showing significant signs and symptoms of MS. In 2013 I had been on a gluten-free diet since my gluten challenge ended in summer 2011, but the Enterolab report commented that there likely were hidden sources of gluten in my diet as I was still producing the gliadin antibodies and the level was so much higher.

I can't be certain the cleaner diet is responsible for me feeling better these last 3 weeks -- since my symptoms have had a waxing and waning quality. However, I am going to give it a serious trial, and for at least the next year I will not do anything that could be risky, in terms of diet (I will continue to avoid processed food and grains).

I appreciate all the helpful advice posted on this site. Any advice directed my way would be most welcome. I will keep you posted on my progress. Thanks again to everyone who has posted helpful info in the past.

Cheers,

Hannah

[cyclinglady]

Welcome, Wetcat!

[HannahZ]

Have you heard of gluten ataxia? It is an autoimmune reaction to gluten (like celiac and dermatitis herpetiformis) except that the antibodies are against your nervous system and especially the cerebellum part of the brain. People with gluten ataxia may not have celiac disease or test positive on any of the tests done to detect celiac, but it is critical that they strictly (no cheating)follow a gluten free diet. Mayo clinic recently covered the condition in a newsletter article about celiac disease and similar conditions. Not many doctors know about this condition yet- it was only made official in 2012. Look it up and save your life. Good luck. The only reason i know about it is because i have gluten ataxia, too.

 

Thank you very much, Wetcat. I hope you received your diagnosis quickly. Do you find you have to be extra careful about gluten cross contamination? I have read that with neuro problems related to gluten, one has to be extra careful. I wondered in part because I am being so careful now, and it does seem to be helping. I was on the gluten-free diet previously, but more of a regular gluten sensitive diet rather than the real celiac diet with avoidance of all possible CC. It's so much more difficult when avoiding CC! But I am sticking with it, because it sure beats having the intense episodes of dizziness such as I was experiencing. If it helps me avoid having more neurological damage that will be fantastic. Time will tell. 

 

Thanks again for your reply.

Hannah

[knitty kitty]

Hannah Z, you said you were low in some vitamins.  Would you tell us which ones? 

I've been doing research and I've found some information that led me to believe that a thiamin deficiency may be the cause. 

Here's a link to one article.  Open Original Shared Link

I took a thiamin supplement and had astounding results. My peripheral neuropathy is greatly improved.  

I am interested in others' experiences with thiamin. 

 

[HannahZ]

Hi Knitty Kitty,

I looked through all my lab results, and I can't believe nobody ever tested my thiamin level. Thank you for the merck link. I will certainly add thiamin to my supplements, and I will post back to let you know if I notice any changes. I'm having an upsurge of symptoms now possibly because I am fighting a virus right now as well.

I'm on zinc at present for the zinc deficiency. I had developed low white blood cell counts so I think the zinc deficiency was quite bad. I have been intermittently low in iron (ferritin and all other measures of iron), and was low in B12 in 2012. At the same time my folate was at the higher end of the normal range. Copper was tested several times and always came back normal (at higher end of range). Then I had zinc tested just a few weeks ago, and it came back well below the lower limit of normal. I have read that B12 deficiency is worse when out of balance with folate, and similarly for zinc and copper. 

I was recently re-tested for other vitamins but not B1, I wonder why? I'm waiting to hear result for B2, B3, B6 and vitamin A.

Thanks again for writing, and the info you shared is incredibly helpful. I'm sorry I don't have any info to share back with you, but again, I will certainly let you know if I notice an improvement on thiamin supplements. 

Hannah

 

I have