new to the gluten free journey?
new to the gluten free journey?
A 4-year-old boy presented with a history of tremor for 7 days. He also had recurrent diarrhea for the previous 1 year, and poor weight gain. Magnetic resonance of the brain was suggestive of central pontine myelinolysis. There was no evidence of electrolyte abnormalities. The serum tissue transglutaminase level was markedly elevated, and the duodenal biopsy revealed features of celiac disease. The patient was started on gluten-free diet. The tremor resolved within 3 months. Repeat imaging of the brain done 3 months after starting gluten-free diet showed complete resolution of the lesion. This case highlights the unusual presentation of central pontine myelinosis as tremor in a malnourished child with celiac disease.Source: J Child Neurol. 2013 Feb 5.
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24 Responses
Thanks for all the great info Dr O, just wish there was someone like you here in the St Pete Fl area where I live. I had been on multiple rounds of antibiotics and steroids for about an 18 mos period, my health declined rapidly, I’ve been passed around from dr to dr and labeled with just about every autoimmune syndrome there is…I was off the charts with serum tissue transglutaminase level, went gluten free, then positive bx on 4 sites on endoscopy, with severe gastritis from top to bottom, all that with being gluten free for 5mos. Meds offered were prilosec and cymbalta…bad, bad reactions to both. Have gone completely grain free since Feb. I recently started taking the supplements you have suggested. I am hoping and praying for some relief but it’s hard not having a ‘doctor’ who sees it the way you do. I feel lost. I just keep reading what I can from your sites and applying to myself. Thanks again.
Hi Sheila,
You are welcome,
Hang in there and keep moving forward. The healing process can take time. You might find this post helpful:
https://stg-gfsociety-testing.kinsta.cloud/what-to-do-when-going-gluten-free-doesnt-help-you/
All the best,
Dr. O
Dr. Osborne, I have gluten sensitivity and the genes for celiac as well. I developed a tremor disorder 4 years ago—Spasmodic Dysphonia Essential Tremor. It is difficult to live with. It causes tremors in my vocal cords and I have some difficulty talking. There is no strength to my voice either. My first connection to gluten came from reading Natasha Campbell McBride’s writings about gluten and autism. I really began to wonder then if that might be my problem and I started the journey of going gluten free. The specialist told me the problem I have is centered in the basal ganglion of the brain and affects the brain waves that stimulate vocal activity. I have been told there is nothing that I can do to alleviate this problem and that it will be with me for the rest of my life. The one treatment they have come up with is to inject the vocal folds with botox, which slows down the tremors (temporary). I had one injection and didn’t see an improvement. It is expensive, my insurance doesn’t cover it and I have to drive 300 miles one way to get it and it needs to be repeated every three months! I have decided injecting with a toxin is probably not a really good idea! Do you think gluten could possibly be at the root of this problem? Once developing a neurological problem such as this, is it even remotely possible for it to be reversed? This is a rare disorder. Your comments would be appreciated!
Norene,
I have seen this problem resolve with a gluten free diet. Read the following post:
https://stg-gfsociety-testing.kinsta.cloud/what-to-do-when-going-gluten-free-doesnt-help-you/
All the best,
Dr. O
Hi Norene,
I know this is a very odd post. I am dealing with the same issue and wondering if you found any help?
I have gluten ataxia and cervical dystonia. I was diagnosed via biopsy for Celiac Disease in Jan 2009 and have kept a very strict GF diet except for a gluten challenge last fall.
My personal opinion is; that while B-12 or other vitamin deficiencies may play a key factor, I believe the real problem is an auto immune response on the brain as well as inflammation of the brain. I’d like to see research in this area.
I’ve had my blood levels checked for all vitamin and mineral dificiences on a regular bases by my Gastrointerologist. The last few years they have come back all within normal ranges. I’ve also had four brain MRI. All “normal”. Yet, I continue to go downhill neurologically every year. The cervical dystonia is a new diagnoses just in the last month. I’m currently awaiting for insurance approval of botox injections.
Dr. O,
Thank you for your article. It has helped me confirm my own personal findings. I have an appointment with my doctor to go over my changes and improvements and run a few tests.
I was diagnosed about 15 years ago with non-essential tremors. My mother and grandmother both had it. I knew my daughter was doomed to have them too. I heard all of the bad news from my neurologist, “it may get worse, just increase your propranolol”. I didn’t like taking this heart altering medication. About 3 months ago, I went on a 90/10 Paleo diet. I have no gluten, no processed foods and absolutely no processed sugar. I am part of a FB community called “The Paleo Approach”. They are AI, which is Auto Immune Paleo. One day I read that someone had some success with a disorder. So I weaned myself off of the Propranolol to test if my disorder had “cured itself”. I am so happy that it brings me to tears to think about it. I have gone from an occasional head-snap, off balance, vertigo, migraine, severe hand tremors sufferer, to being completely free of these symptoms. Side note: besides being gluten free, being Paleo, I incorporate good fats such as Grass Fed Butter and Coconut Oil. I think these have also helped my nervous system.
Thank you again
Celestina,
You are welcome! Thanks so much for sharing your story and experience. Your testimony to the power of diet change and disease will no doubt help encourage others to a better state of health.
All the best,
Dr. O
Thanks for the Encouragement , I NEED some answers , I’m Going to Join this FB Group.. So Far all my Bloodwork , is coming back , neg ,, Borderline Celiac, But I Have all the Symptoms.. and The Tremors are THE Worst ! I’ts worth a Try .. see you on the Paleo Approach 🙂
still no tremor ?
i was diagnosed with benign essential tremor some years ago, when going to my chiropractor intern i remarked that so often i just didnt feel good,he has found several causes,epstein barr,lymes,gluten intolerance etc. i have been gluten free for some time,Monday night i went out to eat,early the next morning i woke to go to bathroom and was off balance big time all but falling down plus severe tremors i finally called the unit,blood pressure was 185 over 70 was given an anxiety med to try to calm down the tremors blood tests came back good sent me home to go to family dr. he insisted i need to stick to neurologist have an appt with a new one,got to thinking i had eaten mushrooms which are low on sensitivity levely but never thought till this morning it had sauce in it that probably had wheat chiropractor feels thats what brought on symptons are wondering if i had benign tremor had vertigo treatments this morning to help the tremors which are much better
u saw family dr he isisted i needed to stick to neurolosist have and appt jan 21st with a new neurologist here in town i am anxious to get a different opinion on whether this is benign tremor,meds no longer control tremors and jerks
Thank you fir the infotmation I have had essential tremor slightly in my hands since I was a teenager and now realise it has also affected my voice box since then as well I went to an ear nose and throat specialist and he put a tube with camera up my nose to see into my throat He never mentioned essential tremor I am now 43 and started to get really bad tremors in my hands a few months ago My doctor prescribed propanolol and it gave me bad side affects I am now taking bit b 12 complex b vitamins fish oil CoQ10 and feeling a lot better I have been gluten free for 4 years and am going to cut out lactose, sugar, MSG and artificial sweeteners I have decaf coffee very occasionally because it still has caffeine in it I drink a lot of red bush tea and try to get enough sleep Hope this helps someone else going through this
Hi Rebecca,
I was wondering how you are feeling after going gluten-free and staying on vitamins.
Thank you.
Dr. O I have been fighting Multiple Sclerosis my whole adult life and just recently told my Neurologist I did not want to take the medications they have been prescribing me. My question is, what can I eat food wise that will be good for my body to keep my exacerbations from flaring up? What vitamins can I take? I currently am taking Skullcap, B-12, Lions Mane, Billberry, Milk Thistle, Vitamin D, and Gummi multivitamin. My Neurologist cannot believe how well I am doing. My brain is riddled with lesions and my cerebral cortex looks like someone who has had a stroke. My attitude is very positive. Thank you, in advance for any information you could help me with.
Brandy,
I am glad you are doing well! Your positive attitude is crucial. I would highly, highly encourage you to follow the diet protocols in No Grain No Pain
This book was written for people struggling to overcome autoimmune problems.
As far as vitamins are concerned, check out this article and podcast I recently did on the very topic – https://stg-gfsociety-testing.kinsta.cloud/multiple-sclerosis-caused-by-gluten/
Wishing you all the best,
Dr. O
Dr. O,
I,m from Holland and I am almost 6 jears suffering from Oromandibular Dystonia with constantly musscle contractions in my face and neck. It is
Very hard tot live with this musscle tension which is there without aan stop. So my musscle s are never free of tension. Can you please answer my following question? Is there a possibility That this type of Dystonia can become less severe when I quit eating gluten? I would appreciate to receive an answer from you.
Thanks in advance
Sandra
Sandra,
Yes it is possible. Several forms of dystonia can be related to gluten sensitivity. Read my book, No Grain No Pain and follow the 30 day diet protocol. When you are done, come back and let me know how you feel.
Best,
Dr. O
Hello Sandra i currently have cervical & oromandibular dystonia, did the gluten free diet help to get rid of the dystonia symptoms?
Hello. I have had arthritis for many years, mostly due to injuries from sports when I was younger, and decided to go gluten free to decrease inflammation of the joints. I was diagnosed 4 years ago with benign essential tremors, also. I went gluten free 6 months ago and have had a significant loss of arthritic swelling and pain after only 3 weeks, AND I also noticed a cessation of all tremor activity after 3 months. This was an unexpected side effect that drew me to this site. I can attest that going gluten free as part of my diet has helped me in unexpected ways. I am more active and don’t wake up ‘fuzzy minded’ due to lack of sleep, and in pain.
Thanks for sharing Brad!
Happy to hear that going gluten free helped you in so many ways. Your testimonial will help others find hope!
All the best,
Dr. Osborne
I have been struggling with either spasmodic dysphonia or essential tremor. My voice shakes horribly and it’s embarrassing. I went gluten free and initially saw some improvements. Unfortunately despite continuing to be gluten free I seem to be struggling with a shaky voice again.
I did have the gene testing for celiacs awhile back which was negative. Any advice? Thanks!
Dear Mr. Osborne,
I started the gluten free diet for the fifth time (hadn’t the power of endurance in the past) because I’ve several symptoms that can be linked to gluten sensitivity. First of all I have a tremor which isn’t an essential tremor (my EEG was okay). My doctor also found a lack of magnesium during a usual body check. Recently I had a lot of inflammations in my mouth and tongue and also pain in knee which isn’t healed yet.
The first 2 days everything got much better but then I experienced extreme withdrawal side effects. I got a headache, muscle and joint pain and I got a flue. After one week the headache is gone but tremors and knee pain are still present. My defecation is great since I started the diet change ! 😀
My question is how long should I persevere with the gluten free diet to find out whether it is the cause/ trigger for my tremors and when do tremors get usually better? It is very difficult to find answers in German literature and even in English there is less to find about tremors and gluten.
Best regards!
Thank you everyone for sharing their stories! My mother has been suffering from celiac for some time now. Little by little we are making progress. This site is very helpful and makes me realize we are not alone! All the best and keep up the great work!