Recovery From Neurological Problems

[Guest Kathy Ann]

Has anyone on this board with celiac-caused neurological problems, honestly recovered? How long did it take for you to get well enough to notice after going gluten free?

[Nevadan]

I have a pair of DQ1 genes. I've been gluten-free/CF for about 1 1/2 yrs. In addition to some gastro symptoms, I had peripheral neuropathy(PN) symptoms(numb toes/foot) before going gluten-free/CF. The gastro symptoms (bloating, gas, constipation) responded positively within a few days. The PN after about a year seemed to be be better, certainly no worse. I also had Restless Leg Syndrome which has also improved. I'm 61 which may have slowed the responses somwhat. My conclusion at this point is that the neurological problems take much longer than the gastro-intestinal problems to respond. I believe this is consistent with some other reports I've read.

[Guest Kathy Ann]

Thanks for your reply! I am nearly 60 as well and have only been diagnosed for 7 months. I have a serious dairy allergy too, which probably has done damage as well. I also have tingling and numb toes and feet at times. But my worst symptoms are panic-like ones, along with dizziness, a feeling of hyperactivity and muddled thinking. I agree with you that it must take a lot longer for the brain to heal. I'm reading a lot of posts on here from people who notice the gastrointestinal improvements right away. But I guess the neurological ones take more patience. I'm hoping there will be others responding like you who have also had remarkable brain and nervous system recoveries we can gain confidence from.

[Tay]

I am sorry to hear about your neurological problems, I know they are frustrating, and can be scarry. I am also interested in people's experience with neurological problems. I have zinging in my peripery (neruopathy) which seems to improve right after a dose of vitamin B12. I also think I have mild memory loss and confusion. Have you seen the recent study done at Mayo clinic? This is a study with a limited number of people. I want to explore whether folate and vitamin E are also deficient. Of course, I am taking oral supplements, but I do not know whether I am absorbing them. The vitamin B12 that I have is intranasal. The symptoms of peripheral neuropathy do decrease after a dose, so I belive that I have clinical symptoms of B12 deficiency. Any thoughts?

-Taylor

Cognitive impairment and celiac disease

• Hu WT,

• Murray JA,

• Greenaway MC,

• Parisi JE,

• Josephs KA.

Author Affiliations: Departments of Neurology, Internal Medicine, Psychology, and Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minn.

OBJECTIVE: To characterize the clinical, radiological, and electrophysiological laboratory profiles and histological features of patients who developed cognitive impairment temporally associated with celiac disease. DESIGN: Case series. SETTING: Referral center.Patients Patients with the onset of progressive cognitive decline within 2 years of symptomatic onset or with a severe exacerbation of biopsy-proved adult celiac disease were identified from the Mayo Clinic medical records from January 1, 1970, to December 31, 2005. Patients were excluded if an alternate cause of their cognitive impairment was identified. RESULTS: Thirteen patients (5 women) were identified. The median age at cognitive impairment onset was 64 years (range, 45-79 years), which coincided with symptom onset or exacerbation of diarrhea, steatorrhea, and abdominal cramping in 5 patients. Amnesia, acalculia, confusion, and personality changes were the most common presenting features. The average initial Short Test of Mental Status score was 28 of a total of 38 (range, 18-34), which was in the moderately impaired range. The results of neuropsychological testing suggested a trend of a frontosubcortical pattern of impairment. Ten patients had ataxia, and 4 of them also had peripheral neuropathy. Magnetic resonance imaging of the head showed nonspecific T2 hyperintensities, and electroencephalography showed nonspecific diffuse slowing. Deficiencies in folate, vitamin B(12), vitamin E, or a combination were identified in 4 patients, yet supplementation did not improve their neurological symptoms. Three patients improved or stabilized cognitively with gluten withdrawal. A detailed histological analysis revealed nonspecific gliosis. CONCLUSIONS: A possible association exists between progressive cognitive impairment and celiac disease, given the temporal relationship and the relatively high frequency of ataxia and peripheral neuropathy, more commonly associated with celiac disease. Given the impact for potential treatment of similar cases, recognition of this possible association and additional studies are warranted.

[barbara3675]

Very interesting.........seems they are honing in on this thing more all the time. I am 61 also and was diagnosed with fibromyalgia first (a migraine patient for years) and then went gluten-free through Enterolab testing. I have a gluten gene and a granddaughter with celiac disease since she was one. The fibromyalgia is much better now and it did take awhile before I could say that. I take Mobic, a prescription anti-inflammitory and magnesuim with malic acid at the suggestion of my health food store owner (who has celiac disease). I also take Topomax to ward off migraines and my neurlogist suggests that is also helping with the fibro. The fibro diagnosis came at age 58 and the gluten intolerance diagnosis came at age 59. I have to work very hard at times and it used to thow me into a major fibro flare, now I will awaken very sore, but after a hot shower and I get moving around it isn't nearly as bad. I believe this is due to not eating gluten. Barbara

[georgie]

I have pins and needles feeling in my feet and that improves after a B12 jab. Have you been tested for low b12? Any result below 500 should be suspected as low.

Barbara, Most Fibro is caused by low Thyroid. After 60 approx 20% of people have low Thyroid. Make sure your Dr does all the tests. And Adrenal function can be low also with low Thyroid.

[ravenwoodglass]

My first presentations were neurological. I have had ataxia, loss of reflexes, depression, fibro and migraines since childhood. When full blown celiac set in I also began to have memory problems and parathesias and incontinence. I was misdiagnosed for years (15) after full blown celiac set in and was close to death before it was finally diagnosed. My GI symptoms resolved quickly but the neurological ones, with the exception of the migraines, took much longer to heal. But...... within a year the parathesias were gone and my reflexes had returned. I have never had another migraine, unless glutened. The ataxia took much longer to get better, notice I did not say it resolved completely resolved but with others who did not have 45 years of damage it may resolve completely. I no longer need canes to get around, I can now feel my hands and feet and I don't fall a lot like I used to. I have regained partial bowel and bladder control, enough to be able to go to the store or for a short walk comfortably. I can feel when I need to go now. The depression lifted quickly although it is one of the first signs I have been glutened. I am now 4 yrs gluten-free and still continue to slowly improve. My doctors had told me to learn to live with my disability and pain, well gluten-free I don't have to because they are no longer there. Don't lose hope, it can take a long time for the neural pathways to heal but healing is not out the realm of possibility.

[Guest nini]

I have two celiac genes and suffered from non specific seizure disorder for years, after going gluten-free my seizures completely went away and only return when accidentally glutened. I would have these seizures on a daily basis... right before my dx they started to get much worse and I was having them several times a day.

[marciab]

I went gluten free in September 2005 and as of September 2006, I have been walking normally for the first time in 16 years. I could walk short distances most of the time, but my legs felt weak and I was having to use a motorized cart to go grocery shopping.

My myoclonus (seizures) started getting better back in April 2006 and now it only happens occasionally. I was on Klonopin for nocturnal myoclonus for 16 years.

I tried B12 injections over the years for energy, but never noticed any difference in my energy or nuerological problems.

Hang in there. It gets better, but it takes time. Marcia

[Guest Kathy Ann]

Thanks for all the information and encouragement!

[tiredofdoctors]

Hi Kathy Ann . . . . would like to give you some good news with regard to my neurological status, but unfortunately, I have not found any improvement in symptoms since going gluten free. Oddly, my laboratory said that they didn't have the capacity to perform DQ1 (why I don't know), so I don't know if I have those genes.

I did have "first high, then outrageously high" antigliadin antibodies according to my neurologists. The ataxia and other symptoms that I have is caused by destruction of the Perkinje cells in the cerebellum of the brain. The cerebellum is "command central" for all aspects of bodily functions. Everything routes through the cerebellum in order to coordinate activity.

The good news is, however, that I have had two check-ups (three months apart) in which I have had no progression of my disease! Yaaaaaaaaaa! So, the gluten-free diet is working.

My suggestion to you is that you continue to adhere STRICTLY to the gluten-free diet. If there is destruction of the brain, to the best of my knowledge that will not improve. Perhaps some of the peripheral nerves (the neuropathy) may heal . . . it is very slow, as they heal at a rate of 1 mm per week. This depends upon the amount of damage that has been done. Every study, article, etc. that I have read indicates that at this time the key to controlling the neurological aspects of this disease is a gluten-free diet only.

I wish the best of luck to you . . . just remember "Gluten-Free, Gluten-Free, Gluten-Free . . . ."

xxxooo

Lynne

[Curious and Determined]

Here's the topic I've been looking for! I was diagnosed with Parkinson's in 1999, but it has progressed so slowly that my latest neurologist is calling it Parkinsonism (PD symptoms, but caused by something else), and another is calling it Stiff Man Syndrome. I have a lot of tingling in my feet. They've called it Restless Legs syndrome, but I didn't buy that. I've always had normal MRIs, except for some unexplained "scattered punctate foci of T2 hyperintensity in the subcortical white matter of the right frontal lobe", some of which were there in 1999 when this all began. I've been getting tired of diagnoses that were really symptoms and garbage can diagnoses - what is left after you rule everything else out.

I first had neurological symptoms in 1998 after a bout of pneumonia. I had pains in one hip that would shoot down that leg. After that I walked with a limp and held my left arm stiffly. My left hand was slower than my right. Things stayed on an even keel for a few years.

Then in late 2002 I had Morton's Neuroma surgery on one foot. It's like my body went bonkers! I was extremely weak, had unexplainable feelings in my chest and stomach (likely GERD and ulcer symptoms from too much Aleve), had super-sensory experiences, and my feet were freezing, flushing, and tingling like crazy, my legs were burning with a sunburned-like rash for a few days. I couldn't tolerate shoes at all, which looks a little silly in the snow.

Four years later and a convenient move to the Gulf Coast, I was progressively feeling better, much to confound every new neurologist I met. Except my GERD symptoms were gettting worse. January of 2006 I took a round of antibiotics with Nexium for H Pylori, and lost 15 pounds with a low carb, unknowingly low gluten diet. I was feeling good and looking not too bad for a 54 year old. Of course I had incentive, my daughter was married in July.

Also in July, my neurologist did some blood tests, and she told me at a recent appointment that I may be sensitive to gluten. I recently got a copy of the lab results, and found that two tests referring to IgA were high.

One was Gliad ABS, IgA/IgG showing:

IgG was 7.0 with 25 or less negative

IgA was 35.8, with 30 or greater positive.

Then there was another test called Immunoelectrophoresis SER+URIN which listed:

T protein 7.6 (6.3 - 8.2)

Albumin 4.4 (3.5 - 5.0)

IgG 770 (636 - 1600)

IgA 327 (70 - 312)

IgM 116 (56 - 352)

This was after my dieting for a five months. Since then, I've been googling and reading through forums, and decided to increase my bread and crackers as in pre-diet days, just to see what happened. I put on 8 pounds quicker than you can imagine, my stomach would wake me up churning at night, and my back got quite a bit stiffer and my foot and leg tingling got worse. I woke with puffy lips and cheeks and dry eyes.

Anyone else have these symptoms?

I just ordered some Enterolab tests. As soon as I send that off, I'm going through the pantry and giving away anything that looks remotely "gluten"ous. Man, I hate to think of watching what I eat over the holidays, but I want to give this a fair shot. I don't even know any of you, but you're an inspiring bunch. Thanks!

[georgie]

Curious, Just checking - you have had B12 levels checked ? Its just that I have PN and its improving heaps with B12. I was extremely low in B12 and it could be Pernicous Anaemia. But for the 15 years I have had the PN - no Dr has ever tested me for B12 before this year. My Auntie had symptoms very similar to yours. She was told it was Parkisnons but wasn't. They could never find out what it is was. But ...have found out now from her children that she was dx with low B12 and autoimmune Thyroid and never continued on with the treatment. At first her symptoms were mild - like mine - but over the years she worsened but it took 30 years. Its just a thought.

Here's the topic I've been looking for! I was diagnosed with Parkinson's in 1999, but it has progressed so slowly that my latest neurologist is calling it Parkinsonism (PD symptoms, but caused by something else), and another is calling it Stiff Man Syndrome. I have a lot of tingling in my feet.

[Curious and Determined]

My neurologist checked for B-12, and it looked OK, or what do you think? I have a daughter with Hashimoto's, so I check that often. My TSH is getting lower than ever, but my T3 and T4 are OK.

B-12 570 (180 - 914)

Homocysteine 12.3 (3.7 - 13.9)

Methylmalonic acid <0.1 (0 - .4)

Ferritin serum 186 (11 - 307)

TSH .8 (.35 - 5.5)

T3 125 (60 - 181)

Free T4 1.38 (.89 - 1.76)

[georgie]

Yes. That is sort of OK. Nearer 800 would be better but you shouldn't being experiencing neuro symptoms at 570. Mine was 148 when dx. That's probably one idea you can scratch off your list.

B-12 570 (180 - 914)

[Matilda]

...

[darlindeb25]

Normal levels of B12 are way too low for a person with neuropathy. I belong to two different periphreal neuropathy forums and B12 is discussed often. I was diagnosed with carpal tunnel 8 yrs ago, 3 yrs before I went gluten free. At the time, my left hand was worse, yet both hands were involved and I wore braces for 2 weeks straight, along with taking anti-inflamatory medication. My doctor didn't feel surgery was necessary, so I just went on with the numbness. Then I found my toes would go numb, which still the doctor said was simply a connection to my carpal tunnel. I never questioned the doctor.

I have been gluten free now for 5 yrs and until this summer, my neuropathy progression was very slight. Last Dec my daughter was here for a visit and she was looking for a Yankee jersey. We wandered the mall and that night, I noticed a distinct swelling on my left foot, ever so slight on my right foot. That swelling has not gone away. Last year I had a Doppler test done, on the paperwork it is called an instrument differrential, in which they shock the nerves to see the reaction. Of course the neuropathy showed up and the doc's answer was medication. Until the pain is unbearable, I refuse meds. To me, if our nerves are sending the wrong signal to our brains, then aren't the meds treating an unreal pain. I know the pain is very real to us, yet how well can the meds work if they are working against false signals? I don't know. I do know that my neuropathy has gotten worse over the year. My sweetie mentioned he notices the change. The worst is in my shoulders and neck, I get tense over something and I get similiar to a pinched nerve in my right shoulder usually, yet the left is getting involved now too and the pain shoots down my right arm. The other symptom he notices more than anyone is my dizziness, usually when he stands to close to me, seems standing close knocks me off balance. I also have noticed my feet dragging more as of late, sometimes I need to make a conscious effort to pick them up as I walk. My B12 level was 1237 at the time of testing, of course, it wasn't a fasting test, doctor's fault and I do take 2400 mcg of B12 daily, 1200 mcg then--so how true is that level. I am told that most neuropathy patients need much higher levels of B12 than doctor's ever realized.

I do not believe that going gluten free helps all neuropathy patients, yet I do know it helps many and I do believe it slowed my progression. I was sick for so many years, that I honestly do not think gluten free will take all the problems away for me.

[rinne]

Initially I thought I was a Celiac and only a Celiac because when I first became ill I learned that I have a sister with Celiac and since then a brother has been diagnosed with Celiac also. I now know that I am wheat intolerant and most likely Celiac but I also have Lyme Disease, diagnosed recently, and there is a real overlap of symptoms between the two.

It was in the past year that I began to notice neurological effects, dizziness, shadows at corners of eyes, tingling burning bands of energy in my head and other issues but since beginning the Salt/Vitamin C treatment for Lyme they have cleared up.

I am astonished by the process of diagnosis. I think it is so very important to not settle for less than the full picture of our health and the dangers of doing so when we are misdiagnosed.

[marciab]

In researching nutrients, I found several sites that said fats / omegas were necessary for our brains / nuerotransmitters to function. Also, the mind science.org site mentioned other foods that contained nutrients that our brains need to function . Blueberries, leafy greens, etc.

Maybe each of us just need to find the right combination of nutrients before our bodies can function normally again ...

Marcia

[Guest AutumnE]

I have two celiac genes and suffered from non specific seizure disorder for years, after going gluten-free my seizures completely went away and only return when accidentally glutened. I would have these seizures on a daily basis... right before my dx they started to get much worse and I was having them several times a day.

That was me too with the seizures, they tried meds for years and it never controlled it. Going gluten free did though. I also have numbness and sciatica. 2 months into it the sciatica is gone. The numbness and going to sleep feeling is still there but is much better at six months out although I believe part of its time is due to me developing a corn intolerance a few months into the diet. My back ache is gone as long as I dont have gluten, corn or dairy and I have had that previously for 22 years with years of mri's and physical therapy.

[georgie]

. My B12 level was 1237 at the time of testing, of course, it wasn't a fasting test, doctor's fault and I do take 2400 mcg of B12 daily,

Does it make a difference if test was fasting or non fasting ? I seem to still need B12 shots every couple of weeks. My PN is much improved - but wonder why I need so much B12 to keep it away.

[Anne AMP]

I am only one month qluten free so still have brain fog and weakness in legs. I do find that other chemical sensativities do make these symptoms worse - probably salicylates and amines. You may want to try eliminating these as well to see if this decreases your brain fog and weakness.

[covsooze]

what about depression? Has anyone had success in that going once gluten-free and, if so, how long did it take? I've been gluten-free 10 months and my recent endoscopy shows my intestines are much better, but the anxiety, depression iritability etc are still there. I had thought they were linked with the celiac disease, but maybe not? Would B12 help with these issues?

[georgie]

but the anxiety, depression iritability etc are still there. I had thought they were linked with the celiac disease, but maybe not?

Covsooze, I notrice in your link that you are hypothyroid. What do you take for that ? The symptoms you describe can be caused by low Thyroid. Perhaps your meds are not working ?

[darlindeb25]

Does it make a difference if test was fasting or non fasting ? Yes, the results from a non-fasting test are not anywhere near as reliable as a fasting test.

covsooze--I do not know much about thyroid problems, but I do know that low levels of B12 will cause all kinds of problems. Also, celiacs does cause chemical imbalances and I am a firm believer in the fact that depression can be caused by chemical imbalances. Do you take vitamins?