Severe muscular shakes and spasms diagnosed due to Celiac Desease

[Gillian Mary Thompsett]

My wife has suferred celiac now for many years and has improved digestion significantly since going gluten free. But over the last 2 years she has deteriated badly. it started with muscular spasms and cramps in her foot but now has spread to all ligaments. She is almost invalid and with spasms can hardly dress. walk and eat. We live in France and she has received neurlogy treatments but the specialist has found it difficult to establish the cause. The specialist has contacted a UK Celiac specialist in Sheffield and after many tests she has started a treatment using Cellcept which is normally used for transplant patients and affects the immune system to counter rejection. Can anyone tell me if they have received similar effects and treatments and if succesful. My wife is now 80 years old.

[Wheatwacked]

 

1 hour ago, Gillian Mary Thompsett said:

Cellcept

I started prednisone in 2012 at age 61 for a similar situation. 30 mg a day to function. After starting Gluten Free diet I only needed 10 mg a day. The side effects of Prednisone are certainly less scary than Cellcept. At first glance Cellcept reminds me of Thalidomide. I recently stopped, after eight and a half years, the prednisone at the urging of my doctor and it has been rocky, but it appears that vitamin B5 and choline deficiencies among others in my diet were part of the problem. I also take 100 mg DHEA (incidently which was discovered in France) because the DHEA level of an 80 year old is 10% that of a twenty year old.

[Gillian Mary Thompsett]

12 hours ago, Wheatwacked said:

 

I started prednisone in 2012 at age 61 for a similar situation. 30 mg a day to function. After starting Gluten Free diet I only needed 10 mg a day. The side effects of Prednisone are certainly less scary than Cellcept. At first glance Cellcept reminds me of Thalidomide. I recently stopped, after eight and a half years, the prednisone at the urging of my doctor and it has been rocky, but it appears that vitamin B5 and choline deficiencies among others in my diet were part of the problem. I also take 100 mg DHEA (incidently which was discovered in France) because the DHEA level of an 80 year old is 10% that of a twenty year old.

Thank you for your response. We are aware of the long list of possible side effects of Cellcept but are on the early stages of treatment at present. Blood tests are weekly at present with fortnightly tests due shortly. Did your treatment work in reducing muscular tension and if so how long did it take to respond. This treatment is totally new to us and we are really uncertain what to expect? Knowing that there are alternative treatments is welcome. Thanks again.

[Wheatwacked]

I actually started the prednisone to treat gout. It took about an hour to reduce the pain at 30 mg that nothing else touched. The treatment was for 10 days and it was only afterward I realized that for that whole week not only was I pain free from the gout, but also all the other general body pain. So started the prednisone again and within the hour there was pain reduction and within days I was moving about virtually pain free.  Once I went GFD two years later I was able to reduce to 10 mg a day. My doctor now wants me off it for fear of bone density issues. Without the prednisone there is usually low grade pain worse at night. The NSAIDs help  but even then I feel like anything can trigger it so I find myself inactive just enjoying the reduced pain state. I have a prescription for Tramodol but only took it 8 days and even then still needed the NSAID for inflamation pains. Once I restarted my list of vitamins I found I did not need the Tramodol, but still needed the alka seltzer and the advil. Yesterday I went to visit my brother so for the occasion I took 10 mg prednisone and like clockwork was reduced pain and moving normally again like a magic pill. I am waiting on a consult with an endocronologist. I have learned that A) after 9 month it is rare to be able to stop and b) if I do it can take up to a year to fully recover from secondary adrenal insufficiency. If it were up to me I would just take the prednisone. The side effects for me were far less debilitating than the effects of not taking it. But I will wait and suffer a bit longer for the endocronologist.

[Posterboy]

On 6/24/2021 at 4:20 AM, Wheatwacked said:

actually started the prednisone to treat gout.

Wheatwacked,

For your gout keep taking the Magnesium Citrate with Meals and try some Zinc Lozenges....

Some people only take Magnesium once a day....and that is not enough...

Here is a thread on it....that explains in more details how Low Magnesium levels have been linked to Gout Wheatwacked if yo have not read it yet...

I hope this is helpful but it is not medical advice.

Posterboy

[Posterboy]

On 6/23/2021 at 1:28 AM, Gillian Mary Thompsett said:

My wife has suferred celiac now for many years and has improved digestion significantly since going gluten free. But over the last 2 years she has deteriated badly. it started with muscular spasms and cramps in her foot but now has spread to all ligaments. She is almost invalid and with spasms can hardly dress. walk and eat. We live in France and she has received neurlogy treatments but the specialist has found it difficult to establish the cause. The specialist has contacted a UK Celiac specialist in Sheffield and after many tests she has started a treatment using Cellcept which is normally used for transplant patients and affects the immune system to counter rejection. Can anyone tell me if they have received similar effects and treatments and if succesful. My wife is now 80 years old.

Gillian,

The Key is finding a high quality Magnesium Supplement....

Glycinates with meals should work....and can be taken at bedtime as well.

I swear by Magnesium Citrate for muscle cramps.....but it should always be taken with meals....

Here is a nice overview article about the pros and cons of taking Magnesium Citrate or Magnesium glycinate for muscle cramps....

https://www.healthline.com/health/magnesium-for-leg-cramps#why-try

It should be noted often the studies on Magnesium and leg cramps are typically studied on the Magnesium Oxide forms.....which are low absorbed forms....

Most people who take a Magnesium Citrate (in my experience) are very happy to take Magnesium as a Citrate to help their muscle and/or Skeletal cramps.

I take it "religiously" and it (Magnesium) is the only supplement I still take on a regular basis...

I hope this is helpful but it is not medical advice.

Posterboy,

[cristiana]

I echo the Magnesium advice.  I'm back on it now as I get tingling and twitching from time to time,  I think it's to do with inadvertent glutening.  

I am super sensitive to cross-contamination and when gluten sneaks in, even in tiny amounts, it tends to make my own non-gastric symptoms - twitching muscles, itchy skin and anxiety - much worse.  I don't eat out anymore, the one exception being at a local pub where the landlady takes huge steps to keep gluten away from my food.   Also, if I do eat gluten free processed foods I have to make sure they are certified as such by Coeliac UK or similar, or appear in their food directory   

I'd be interested to know what your experience of the reliability of food labeling is in France, as I've been to France a couple of times since my diagnosis and I am almost 100 per cent sure that I was glutened by foods that didn't appear to have any gluten in the ingredients.  That might be something to watch.    My Ttg numbers doubled and I didn't eat out - I was however eating tinned, frozen goods and chocolate!😊

 

Edited June 26, 2021 by cristiana

[Wheatwacked]

15 hours ago, Posterboy said:

For your gout keep taking the Magnesium Citrate with Meals and try some Zinc Lozenges....

After the posts in Familial Hyperlipdemia, I switched from 500 mag oxide (waste of money) to two ounces flavored mag citrate (580 mg magnesium) in a glass of ice water daily, tastes like a flavored lemonde. Magnesium needs a high stomach acid for best absorbtion so many recommend without food.  Good results re: cold feet and still improving. I've been taking Cold-Eeze or generic since 2004 and have not had a cold since. Without the prednisone I am very inactive, though since restarting my 14 supplements the pain is controlable with aspirin and nsaids. Haven't needed the tramodol since. Taking even 5 mg prednisone or prednisolone makes me pain free and active. Now to convince the doctor. She is primarily concerned about osteopenia (tested last month at 24% density loss in my femur neck) but looking at my spreadsheet I am consistantly lacking (15% RDA) in vitamin K, calcium, manganese all much more likely to be the real culprit. Perhaps the correlation with untreated Celiac and Prednisone as two prime risk factor is simply the missing nutrients. After all treating celiac and stopping prednisone does not replenish bone density but supplementing the missing D, calcium, manganese and vitamin K does. D is not my problem because I take 10,000 iu (250 mcg) a day to keep up my attitude. A reported negative side effect of Prednisone is "a false sense of well being" What? It gives me hope.

[Pixy]

After I was diagnosed with celiac I went to 100% gluten free.  After a few months, my lab tests showed my kidneys were letting out too much calcium.  I ate a gluten free diet plus low amounts of salt and protein.  Then I was diagnosed with vestibular migraines, so I added tyramine as not allowed in my diet.  The migraines (with or without pain) cause fairly severe head jerking if I eat too much tyramine containing foods.  

[trents]

3 minutes ago, Pixy said:

 

Welcome to the forum, Pixy!

Two questions:

1. What meds is your wife on? Is she on a statin med by any chance?

2. Is your wife taking any high potency vitamins and minerals. If not, she should be and of course they should be gluten free. I particularly hope she is on a high potency B-complex in addition to an adult multivitamin. The symptoms you describe make me think there is some nutritional deficiency going on.

[Pixy]

Thanks for the welcome.  She does take a statin. Also taking

-B2, 400 mg

-Magnesium, 360 mg

-5-HPT, 150 mg

-Feverfew, 100 mg

-Ubiquinol, 200 mg daily

-Vitamin D-3 - 2000 IU daily

-Potassium - 24% of RDA daily

-Multivitamin 

-fish oil

[Wheatwacked]

If you would like, I can calculate out your daily nutritional intakes from a list of the foods (quantity and ingredients  for 24 hours in grams is easier) you and your wife eat on a typical day, one for you, one for her. It will offer you a quantitative analysis compared to the RDAs which you can use to identify any gross nutrition deficiencies and discuss with doctors. It's something I developed to save my life. It is working for me and I would like to share it with you. I'll message you my email.

[trents]

Pixy, the reason I was asking about the statin is that those drugs have an established connection with muscle weakness and wasting for some people.