Indian Pudding Day and Recipes

[SirSleepie 1]

Hello all. I'm 23 and I was diagnosed with Celiac disease 11 days ago. Both my blood work and biopsy tested positive. I haven't touched gluten since my diagnoses.

I do not have any gastrointestinal symptoms...

My primary doctor sent me to a spine and joint doctor for buzzing/tingling & twitching in my legs. She did an MRI which revealed a single white matter lesion on my brain. She suspected I had MS and referred me to a neurologist. My neurologist quickly dismissed MS and said the lesion was non-specific.

It was my neurologist who requested the blood work for celiac disease. My symptoms began with buzzing in my legs and feet which progressed to twitching and stiffness and than finally to muscle pain (mostly in calves). The twitching has since jumped around here and there, but primarily it settles in my calves.

My pain has greatly diminished and the buzzing has all but gone away, but the twitching still persists. I think the twitching has become less intense, but honestly I cannot say for sure. Also, stiffness is still there...

I am quite concerned about the twitching because my B12 (517) read within normal levels. And I understand a B12 deficiency is often the cause of twitching in Celiac patients. Seeing how the twitching is still hanging around I fear that perhaps the twitching isn't connected to my gluten allergy and may indicate something much worse. That's where the anxiety kicks in...

1. Do any of you experience muscle twitching?

2. If so, how long does it normally take for it to go away after exposure?

3. Do you have any vitamin deficiencies?

4. Is there anything I can do for treatment?

Thanks!

[Wolicki 39]

Two things: Your B12 level is technically normal, but I had the buzzing at 570. Try some sublingual B12, 2000 mcg per day, taken at bedtime. Also, the twitching can come from iron deficiency. Have you had your ferritin checked?

I've been on b12 and iron for 3 months, and it's gotten much better. The tingling is almost gone (and it was from head to foot!) and the twitchies are almost gone. I hope that helps!

Janie

[srthomas21 0]

Hi

I had this same thing as well. I've been gluten free now for 6 months and the twitching is now about gone but it took MONTHS for it to go away.

You are probably deficient in vitamins and minerals. I started taking a gluten free multi vitamin about 5 weeks ago and it has slowly improved things. The one I take is called Bio-35 .

http://www.bio35.com/products/prodDetails.asp?pID=45

You can get a free trial of it at the link above. I have been pretty strict on taking it 3 times a day and it has helped restore my vitamin levels.

It's amazing what Celiac can do to your body. I was also iron deficient and took iron supplements for a few months as well to get my iron back up.

I also didn't have the gastro symptoms . My symptoms were strictly neurological and they sucked. I thought I had MS or something worse. My anxiety was unbearable at one point (i've never had anxiety in the past either) I think its a pretty safe bet that you haven't been absorbing the proper nutrients for quite awhile and its going to take some time to resolve.

I would recommend taking a good probiotic as well to facilitate healing your gut. Even though you did not have gastro issues your small intestine is likely inflamed. A good cheap probiotic I use is called PB-8.

All I can tell you is that it does get better but it can take 6 months to a year for things to heal up. I had the calve pain as well and still do even after 6 months but it has slowly getting better.

Hope that helps, let me know if you have any other questions as it seems we share a lot of the same miserable symptoms.

Scott

[CGally81 1]

I had muscle twitching as one of my gluten withdrawal side effects. It started to occur, then got worse and worse, then slowly started to get better, with relapses along the way. Now it rarely happens.

I didn't turn out deficient for nutrients, but I still echo what everyone else says: get your nutrient levels checked, and take what you're missing. Also, note that this may be a withdrawal symptom, and it'll go away over time. It might, like in my case, get worse before it gets better. But it'll still go away. Make sure you're taking enough nutrients in the meantime to get those back up to normal levels.

[Ahorsesoul 54]

Remember that lab results that are normal may not be your normal. Lab results are an average: some people are higher, some lower for their normal.

My B12 and thyroid lab results were always in the normal range. Not until I found a doctor who told me that yea they were normal but low normal. Since I had symptoms of low B12 and thyroid I should be taking extra. Made a world of difference for me. Sometimes doctors forget to consider the whole patient and just look at lab values.

You will do find on a gluten free diet. You've already began the research. You can do this.

[SirSleepie 1]

Thank you all for responding. I appreciate the words of advice.

Is there anyone else out there who has muscle twitching (fasiculations) as a symptom of Celiac disease? I would feel more comfortable if more of you would come forward. It would help curve my skepticism. If muscle twitching is indeed a symptom of Celiac disease others must have experienced this.

Scott - How long have you been twitching? Have any of your doctors explained that this is consistent with celiac disease?

Thanks!

[jenngolightly 52]

I had/have muscle twitching. Before the celiac diagnosis, I was suspected to have MS, but neurologist ruled that out. My twitching only reappears when I accidentally get glutened.

[SirSleepie 1]

Jenngolightly - Thank you for responding. How long did it take for your muscle twitching to go away after you went gluten-free? Were you B12 deficient?

Thanks!

[SirSleepie 1]

>

[srthomas21 0]

What type of muscle twitching do you have? What part of your body?

How bad is your anxiety? When my anxiety was at its worst my muscles were twitching all over the place.

Celiac can cause all sort of weird symptoms. I wouldn't worry too much about it. Give it some time, takes some good vitamins and wait it out. It will get better.

[Korwyn 81]

Thank you all for responding. I appreciate the words of advice.

Is there anyone else out there who has muscle twitching (fasiculations) as a symptom of Celiac disease? I would feel more comfortable if more of you would come forward. It would help curve my skepticism. If muscle twitching is indeed a symptom of Celiac disease others must have experienced this.

Scott - How long have you been twitching? Have any of your doctors explained that this is consistent with celiac disease?

Thanks!

Hi Sleepie,

I developed severe muscle twitching and myoclonus, and it is indeed related to gluten for me as well as soy. I have been strictly gluten-free since April 2009, and soy and casein free since May 2009. I have a number of neuromuscular and CNS issues triggered by both gluten and soy. The peripheral neuropathy is not strictly related to a vitamin deficiency for me, nor are the fasiculations and myoclonus. If I take in soy I develop clearly visible muscle twitching over various portions of my body, as well as panic attacks, and night sweats. Eliminating gluten helped quite a bit, but eliminating soy was the big link. In the course of my celiac disease I developed a severe intolerance to soy, refined sugars (sucrose, corn syrup), starchy carbs, and casein.

They have decreased tremendously, but sugars and starchy carbs, soy will trigger it. And it takes days to subside to previous levels. Raw veggie/unrefined carbs are ok, grain carbs will stir it up if eaten over several days or in large quantites. Soy in any amount (even soy lecithin in chocolate or Blue Diamond Almond milk) will trigger it. Gluten will trigger it as well, but not as severe and it subsides quickly (not over days).

A few weeks ago I was so excited because I realized I had two full days with no incidents!!!

Korwyn

[SirSleepie 1]

Srthomas21 - Muscle fibers dance about. Pulsating movements... Twitches/Fasiculations. Really don't know how else to describe them. Sorry. Mostly occurs in my calves. Also happens a lot in my feet. I have pain and stiffness in my calves as well. Anxiety is horrible.

I've been gluten free for 19 days now. I noticed significant improvement on Friday & Saturday (The best I've been in a while). I took a few steps back on Sunday and now I appear to be right back where I started. Very frustrating.

Thanks for the feedback and the support.

[Jean'sBrainonGluten 0]

Hi SirSleepie,

I have had myoclonus and symptoms that looked like a brain tumor but when I got a brain scan it showed nonspecific spots. Because I'm over 50 they were classified as microvascular ischemic changes but I'm pretty sure they're celiac white matter lesions. If you do a google search there are several papers on them available for a charge over the web. In some cases the symptoms look like epilepsy, in others dementia, MLS (Lou Gehrig's disease), or MS. There are before and after photos showing that the lesions are better after 9 months and nearly gone after two years on a gluten free diet.

For me I did an elimination diet 7 or 8 years ago and I found that I felt better after two weeks gluten free and the improvements continued as I was off gluten longer. My downfall was that I was getting gluten exposure through several hidden sources - probably most meats at restaurants are coated in flour before grilling to reduce sticking, lots of meats have vegetable broth added for 'flavor' and that can have gluten. I'm also looking at meds I've been taking, working to avoid cross-contamination from my family's gluten-containing foods, and even toiletries like shampoo. I would encourage you to be as meticulous as possible in reducing your exposure to gluten since even tiny amounts can continue to provoke an immune response (you may also want to do a search on gluten and gliadin cross reactivity with brain proteins).

In England there are more people researching brain complications of celiac. Here is a link about one group's research

http://cme.medscape.com/viewarticle/462205

but the researcher Hadjivassiliou has done tons of research on how gluten sensitivity affects neural issues. I wish there was more discussion of this in the celiac community.

[Ahorsesoul 54]

Srthomas21 - Muscle fibers dance about. Pulsating movements... Twitches/Fasiculations. Really don't know how else to describe them.

You might try adding potassium as a supplement or eat a banana daily.

Mayo clinic doctor (not celiac related) told one of my family member to take a Benadryl every night for a few days and it might help leg cramps. This might work for your muscle problems. Wouldn't hurt to try.

I use to have some muscle twitches. I couldn't say if it was going gluten free or that I started B12 shots that helped. If I have leg problems, potassium helps me now.

[SGWhiskers 45]

Muscle twitches here too at 16 months. Pre diagnosis, they were unpredictable and scary. Now, they have primarily moved to my extremities and/or areas I am working on with trigger point therapy. They tend to head to my face and abdomen more and be more persistant when I'm fatigued.

Now, just because a lot of us have them does not mean it is something you should ignore. Best wishes.

[Jean'sBrainonGluten 0]

Um, I would be careful about Benadryl - it makes my myoclonus significantly worse. Try a small dose first if you think it seems promising.

[SirSleepie 1]

Thanks for the info.

I just read an editorial called "Gluten Sensitivity as a Neurological Illness," which explains that "peripheral neuropathy is the second commonest manifestation of gluten sensitivity."

Hopefully my issues are related to my celiac diagnoses and I will improve shortly.

20 days and NO relief yet.

I hope this post will catch more eyes. I agree with Jean, there needs to be more attention brought to the neurological implications of Celiac disease. If muscle fasiculations (twitching) and cramping is indeed the result of antigliadin antibodies at work than I would imagine that there would be more of you who frequent these forums who have experienced this. The more of us who come forward the better.

[CarbQueen 1]

After doing a gluten free diet for approx. 3 mo. this year, I returned to gluten diet for a short period of time. In just a few short weeks my muscles and joints were throbbing in pain. Also, I experienced muscle spasms comparable to a charly horse.

I quickly returned to gluten free diet, and it took a few weeks before my body returned to normal. During that time I experienced the occasional muscle spasm before it settle down to twitches and then just random twitches.

When ever I am accidentally gluttened, I feel it immediately under my left eye which starts to twitch then comes the heart palpitations, anxiety, and ADHD symptoms. That's from trace amounts of gluten. What follows is gas and indigestion.

[Jean'sBrainonGluten 0]

The thing with neuro symptoms is that they reflect damage to the brain and the papers I've looked at imply that it takes about a year gluten-free to clear up, but you have to be really scrupulous about cross contamination and not eating grain derivatives in flavorings. You should start to see improvement soon, depending on your age (younger people heal faster). Make sure you are getting a good gluten free overall vitamin supplement and specific supplementation with B vitamins or D if tests show you are low.

Several other things also have helped me

avoiding common migraine trigger foods like onions, aged cheeses, citrus, pickled foods, ...even limiting gluten free preserved meats - there are good websites because migraines cause swelling in the brain

icing my head when I have even a small headache

sometimes a heating pad on my lower back helps a little

doing calf and other leg exercises ( standing on tip toes - up/down repeat several times and then do a slow stretch of the calf and achilles area) right before bed

and, again, avoiding antihistamines and opioids ( hydrocodone and tramadol are the ones I had tried for fibro pain, tramadol is related to opioids)

Hope you feel beter soon!

[SirSleepie 1]

I'm reducing everything to very clean foods; fruits, vegetables, meats, rice, and that's about it.

I notice exercise exaggerates the twitching, but only for a short time. I was doing lots of walking and calve raises up until recently. The extra twitching it invited was starting to get annoying, but it did seem to work out the kinks and decrease stiffness.

How does this promote healing? Can you break down the science?

Is it the excess blood flow in the effected extremities or a muscle/brain stimulation thing?

Thanks.

[srthomas21 0]

Srthomas21 - Muscle fibers dance about. Pulsating movements... Twitches/Fasiculations. Really don't know how else to describe them. Sorry. Mostly occurs in my calves. Also happens a lot in my feet. I have pain and stiffness in my calves as well. Anxiety is horrible.

I've been gluten free for 19 days now. I noticed significant improvement on Friday & Saturday (The best I've been in a while). I took a few steps back on Sunday and now I appear to be right back where I started. Very frustrating.

Thanks for the feedback and the support.

Hey,

I primarily had neurological symptoms. I had this horrible feeling that I'd been drugged that went on for months. I had cloudy thinking and a very strange sensation in the back of my head. My neck also would ratchet when I moved my head up and down. Very weird. I also had muscle twitching, weakness, and cramps. Some weird visual problems to that aren't quite resolved yet.

When all this was going on I was also having very bad anxiety and I can tell you for a fact that anxiety can amplify your symptoms 100 times. If you are having bad anxiety it can make your muscle twitching a lot. It did for me. You need to get the anxiety under control to see if that helps the twitching. I can honestly tell you I thought I had a horrible neuro disease but it turned out to be Celiac and bad anxiety.

After gluten free for 7 months the anxiety is a lot better. I was on meds for it but I am off now.

Try not to worry too much about it. You know you have Celiac and it can cause many many weird symptoms so to me its the most logical cause of your muscle twitching and it's probably exacerbated by the anxiety.

Other than the muscle twitching and anxiety are you having any other issues? Motor control? Clumsiness? altered gait when you walk?

My muscle twitching is now resolved. I think it took about 3-4 months gluten free for it to go away. I still have some minor muscle cramps primarily when I do sudden movements.

It's easy to let your brain wonder and think that there is something else wrong with you. I still have issues with that because I'm not feeling 100 percent yet. I go on the internet, consult lord Google with my symptoms, press a button and whalaa there is a list of 30 more possible illness I may have However, I then try to talk sense into myself because the most logical thing to cause my issues is Celiac.

Like Jean'sBrainonGluten says it could take up to 2 years for neuro symptoms to completely resolve. I still have neuropathy in my hands but it has gotten a lot better since going off gluten. I'm hoping in time it will go away completely.

[srthomas21 0]

Here is the full pdf version of the Gluten sensitivity as a neurological illness

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737870/

[CarbQueen 1]

The walking does make the twitching worse initially, but subsides after I resume gluten-free diet. I eases back into walking. Started with a block then worked my way up to 2k, 3Xs per week. Baby steps are the key. I've learned to be patient.

I practice yoga on a daily basis. It reduces the severity of my flares.

Cranial sacral therapy helped me with the muscle and joint pain.

I use an herbal product to improve the circulation of the blood.

Organic produce is a must, because the chemicals, pesticides or herbicides can cause problems with the muscles and joints, as well as ADHD symptoms.

[Jean'sBrainonGluten 0]

Hi I'm not sure why the leg lifts help me. I am careful not to do too many - less than 15 and only a couple stretches.

So here's a technical discussion on why I think it's a muscle/brain stimulation thing....

Twenty eight (?) years ago I was a lab tech for a psychologist studying whether exercise helped rats recover from brain trauma, which it clearly did. Here are some references

http://www.scientistlive.com/European-Scie...recovery/23520/

http://www.pmrjournal.org/article/S1934-14...0382-7/abstract

http://www.webmd.com/stroke/news/20041019/...stroke-recovery

I just found those articles but I did the mild exercise based on my lab tech experiences and some reading I did years ago on recovery from coma - it was more or less a theory of mine that mild activity could stimulate the motor neurons and help rehabilitate the brain. The idea is that gluten is causing me brain damage and the mild exercise helps overcome the damage. It wouldn't be effective without the gluten free diet stopping the ongoing damage.

The researcher Hadjivassiliou, srthom21's article author, has actually opened a Brain Ataxia center in England, but I'm unable to find recent publications by him. Anyway, several of the papers on different neuro symptoms and their correlation with celiac are written by him.

For muscle cramps you might look at potassium and magnesium supplementation.

Hope this is helpful.

[SirSleepie 1]

Srthomas21 - Primarily muscle twitching and stiffness...throw in a dash of buzzing and some pain. My right leg ached pretty badly last night. That was a first and kept me up for awhile. I haven't noticed problems with motor control, clumsiness, or gait.

CarbQueen - How long did it take for your symptoms to subside after diagnoses? How intense/often was your twitching and when did it go away? Did the healing process take a longer period of time after diagnoses compared to isolated incidents of ingesting gluten?

Jean'sBrainonGluten - Your theory certainly makes sense. If indeed gluten is causing brain damage I would assume some sort therapy would be in order. I've been taking 400mg - 600mg of magnesium daily for nearly a month. I try to ensure that I at least have one banana a day. I've began some light stretching and leg lifts. Also, I've been using a heating pad on my calves which seems to do some good.

Thanks for the feedback.