Food For Thought

[nama shivaya]

Well, Kiddos, I've been dx'd with MS. Yuck. I had hoped it wasn't that, but it is. Anyway, one doc I visited about treatment said the first thing to do is to go gluten free. Well, I've already done that, so am ahead of the game there. She said that many researchers actually believe MS to be an inflammatory disease (not necessarily an autoimmune disease), and the gut is highly related to what happens in the rest of the body.

But you guys already know that.

Anyway, I'm scared, of course, and trying to decide on the best course of action (meds or strictly lifestyle changes?) But one thing is for sure: I'm glad I got all the info and support from you good folks at this site, and also glad I went gluten free when I did!

I'm sure I'll pop in here now and then to check things out.

Have any of you had any experiences or known anyone with MS and what worked/didn't work for them?

Be Well!

Nama

[CarlaB]

How do they diagnose MS?

Have they ruled out other things? Open Original Shared Link Open Original Shared Link

I understand that it's a clinical diagnosis ... I'm just concerned about how quickly they diagnosed it ... if it's one of the other diseases that mimic MS, the steroids can be harmful.

[HawkFire]

What we put into our mouths, be it chemical created by a pharmeceutical company or an organic vegetable, has a medicinal effect on our bodies. Do not simply consider the pills prescribed to you as medicine. Believe the truth that food is medicine. You should probably detox. Give yourself three months and begin a diet of raw foods. No cheating. I highly recommend Chlorella and spirulina as they help to detox any heavy metals from your body. Take them. Eat only raw foods. Eat no animals for three months. You will get more than enough protein from the chlorella and spirulina as well as your b12. Investigate the healing herbs. Not the herbs that are dried in bottles. Eat salad with herbs. If you would really enjoy a hot soup, prepare a vegetable based soup without a "soup starter". Simply allow the flavor of the vegetables and herbs to be enough. Cook them until only just tender. Enjoy a warm soup that is not over-cooked. My life has been turned around by avoiding dairy, msg (truthinlabeling.com is a must to identify all forms of msg) and gluten and soy. Coconut oil is a wonderful thing. Use fresh young coconut milk daily if you can, every other day if you must. This is a wonderful antibacterial for the gut. We scrape the meat and make smoothies. Best of luck.

[Lisa]

Nama:

I am sorry about your diagnosis. Perhaps you could tell us as to how your doctor came to that conclusion.

Yes, there is a connection between MS and Celiac. Most of us have intestinal damage because of celiac, but it also can creep into other organs and settle in. I think that MS may knock on my door in my future years. It is in my family.

This is my reason to be gluten free as best of my ability.

Since you have been gluten free for some time, you're on your road to a healthy lifestyle. Keep it up and I am sure that you will have good quality of life.

I would not drastically change your diet, but eat well, health and fresh as best as you are able.

Keep us posted.

[lorka150]

Nama,

My mum, sister, and aunt have MS, and I've been tested 3 times. Needless to say, I come from a very knowledgable background. If you have any specific questions, thoughts, or concerns, feel free to PM me any time.

[jerseyangel]

Hi Nama,

I'm sorry to hear of your diagnosis. I do hope you'll stay in touch

In the past few years, two members of my family (on mom's side) have been Dx'd with MS.

[nama shivaya]

Yes, MS is a clinical dx. I was dx'd based on symptoms (internal tremors, 1 year of anxiety, coordination problems with my hands, numb & tingly hands & feet, muscle twitches in my legs, weak legs, balance issues--have that "MS sway", and no feeling in my bladder/lower bowels), 1 c-spine lesion ("could be a spinal tumor, arthritis scar tissue, or MS lesion"), and a lumbar puncture that is "consistent with MS".

Since being gluten-free, my guts have felt enormously more at ease. I had been bloated and couldn't eat very much. They are still a bit tender when I press on them, but I can tell the difference after 4 weeks off gluten and other foods (legumes, dairy, eggs, soy, nightshades, all processed foods, etc.) Really the only thing I eat is fish/fowl, fresh veggies and fresh fruits. I'm still haven't decided on rice. Even the sweet rice doesn't really feel right. My "healthy" doc said to be gluten free for another 2 months before beginning to reintroduce these other foods, taking care to go slowly and watch for intolerances.

By the way, she gave me a B12 shot two days ago and it's the first time in over a year I haven't been plagued by constant worry!!! I think I'll definitely self-shoot B12 now. My B12 blood levels taken a month ago showed them to be 639, well-within normal ranges, but perhaps my bod wasn't really utilizing it.

As for treatment, I really haven't been offered steroids, nor do I want them. I think steroid treatment is best left for those suffering from severe vision problems (blindness is not cool for any length of time), and severe motor dysfunction, ie, can't walk or move.

I'm gonna give myself 3 more months to go through some serious (professional) detoxing, active exercise (including running, biking and yoga), and being on the anti-inflammatory supplements my "healthy" doc recommended (including probiotics, proDHA omega 3, multivitamin, B12 shots and glutamine), and of course, fostering a positive wellness image in my mind.

It's amazing to me how many people are getting this cursed diagnosis! I do think that inflammation, intestinal health and the autoimmune system are all definitely related in most cases. My hope is that I can reverse the damage and continue to stay free and clear of it. Thanks to you all for your encouraging words and strength.

[nama shivaya]

Forgot to add, 3 more months and then decide if I want to begin a disease modifying drug -- probably Copaxone. This is injected sub-cutaneously daily. Sigh. I just HATE the thought of being on a harsh drug like this!!! But if it helps keep me walking and coordinated, I will. The other 3 drugs available right now to me are all interferons and offer nasty side affects like liver and heart damage, and flu-like symptoms for a few days after the injection. The are taken daily, every other day, and weekly. Doesn't sound good.

[CarlaB]

It sounds like you're really on top of it all! That's really good that you're working so hard on diet, detox, etc. to keep healthy.

I read the Fit for Life books years ago. The writer, Harvey Diamond, was exposed to agent orange. He still gets around fine and has little noticeable damage from it. He does it all with diet, no medications whatsoever. You might be interested in reading about him. He actually has a my space with lots of information on it.

Good luck with it all!

[alamaz]

I've seen Dr. Mercola myself before I was diagnosed as a celiac and his plan did help me until I stopped because I didn't have an "illness" and since I felt better I didn't need to do it anymore- typical right? Well, five months later here I am back to following his plan. I went to him because they thought I had MS and when i asked around one person said her sister follows his plan to a T every day and her MS symptoms stay under control. It takes time, I was on the diet for a year before seeing any results but it's something I would suggest you look into if you are contemplating using diet as a way to manage MS and not drugs although Dr. Mercola will work with you and whatever drugs you do take. his website site is www.mercola.com for more research.

sorry about you diagnosis. i wish you all the best!

amy

[nama shivaya]

Thanks for the suggestions! I'll definitely check into them!

Take care,

Nama

[hathor]

Thank you for sharing your information and thinking of others at a time that must be difficult for you. My BIL has just been diagnosed with MS, but his doctor (supposedly an MS "expert") has not said word one about diet having an effect. You are so ahead of the game.

My husband and I did a lot of research about MS when we heard this was a possibility, figuring his brother had a lot on his plate. We sent it all to him but as of two days ago it hasn't been read. Sigh.

Anyway, have you heard of the work of Dr. Swank? If not, you might want to check it out. Here's an introduction. Open Original Shared Link

Of course, stick with whatever works well for you. I'm just sharing information, not telling you to change a thing.

If you happen to have any good web sites that I could direct my BIL to, I would appreciate it.

[Nancym]

Look into taking vitamin D3 cholecaliferol, I believe they've found quite an astonishing link between MS and Vit. D in the blood. Most of us simply aren't getting enough!

Good luck!

[Fiddle-Faddle]

Wow, you guys have so much valuable information!

I was thinking that maybe Scott might want to have an "MS" section, either on cleiac.com or here on glutenfreeforum since the link with gluten is so strong...has anyone asked him about this?

[HawkFire]

You can get good D from sunlight.

[Guhlia]

Have you checked out this link on MS and Celiac?

https://www.celiac.com/st_prod.html?p_prodid=126

[nama shivaya]

I garden, hike and ride my mtn. bike daily. I wear sunscreen on my face and other exposed parts since I'm a redhead. But I think vit. D can still be absorbed...?

Yes, I've heard of the Swank diet. It's main focus is to eliminate foods that cause an inflammatory reaction in the system. It's very similar to other elimination diets.

Anyway, the doctor I went to is sort of an alternative med doc. She is an MD who has had MS for over 16 years, and has no residual effects. The type of medicine she practices is called "Integrative medicine" and is catching on in popularity. It makes sense to me to look at the whole system and use whatever techniques from whatever philosophy is needed to correct system imbalances. She can, and does at patient request, prescribe disease modifying drugs, but prefers to try the simple/less invasive approaches first.

In particular for MS, Ayurvedic medicine is thought to hold some really sound keys to management. Ayurveda is all about balance. I'm going to go to NM for a 5 day cleanse/central nervous system balancer. It involves techniques (like massage, strict cleansing diet, meditation) to help de-escalate the irritated CNS.

My IM doc said that MS is more an inflammatory issue than an autoimmune issue. She said the key is to reduce systemic inflammation to control/reduce symptoms. Because the gut is integral to proper immune function, balance must happen there (as well as in other areas). Eliminating gluten is an important first step. The gut must heal! (but you guys know that!)

My regular neurologist is so mainstream western med that he would just roll his eyes at the above information. He believes that it doesn't matter what you eat. I'm sure this is true of many/most regular neurologists. Of course, the mainstream medical community has realized the connection between stress and MS flares, but haven't taken it a step (or two or three) further.

hathor, I'm sorry to hear about your BIL. MS is a scary dx. It will no doubt take him time to sort through things. I remember well-meaning friends and family who wanted to help. I felt a bit bombarded with information at first. It took me time to come out of shock mode, know what I mean? Depending on his personal philosophy, he may or may not ever sway from the current mainstream medical views on his condition.

Thanks to all!

Nama

[nama shivaya]

Thanks, Guhlia -- this site looks like an excellent resource.

[Jestgar]

Nama, sunscreen blocks the ability of the body to synthesize vitamin D from sunlight. Also, the more north you live, the less sunlight is available. (The angle of the sun is such that not enough comes through the atmosphere to be able to initiate vitamin D synthesis.) In Seattle, for example, sunlight that reaches us September through May is insufficient. We also have a higher incidence of MS....

[CarlaB]

My son spent his first 20 months in Russia ... he got rickets.

When I go outside, I spend my first 20 minutes or so without sunscreen. If I can, I go out early in the day or late in the afternoon so I can sit out longer. I always feel better when I can do this.

[HawkFire]

Open Original Shared Link

A few years ago, a woman I knew told me this. I think it's interesting.

[CarlaB]

Open Original Shared Link

A few years ago, a woman I knew told me this. I think it's interesting.

Interesting. In our son's case, I don't think he had either exposure to sunlight (Russian winters are quite dark, I know, we went there in January to get him), and they didn't give him supplements. This was all before we got him .. he was fine by that time.

My family's from Florida, so I was always taught by my grandmother and great grandmother to get some sunshine every day for good health. It's funny that the older generations knew this stuff probably from their older relatives, but somewhere along the line we lost the passing on of this kind of knowledge and have to find it out for ourselves.

[HawkFire]

I am fortunate to live in year round sunshine. I tell my children to sit outside in a chair when they are sick or beginning to get ill. I know it shortens the length of their illness whether it is a cold or stomach virus, I send them outside with a book or magazine and ask them to relax in the sunshine for awhile. It always brightens their moods when they are feeling immune low, as well. I also let them swim for 15 minutes prior to putting on that first dose of sunscreen. I cringe when I see children arriving with bodies covered from head to toe against the much needed "STEROID" D. I wan to tell the parents the children need some of what the sun is providing. Our country is so mismanaged by the fda. The citizens are so misinformed. Those "got milk" commercials make me so angry with the "planetinneed.com" MISinformation. I think of the aliens worshipping the dairy cow and it makes me so angry to think of all the suffering our children will face in the next 30 years. How cruel to force feed through fear of broken bones, osteoporosis and peer pressure, dairy products! Worse than tobacco companies, if you ask me.

[Jestgar]

Our country is so mismanaged by the fda. The citizens are so misinformed. Those "got milk" commercials make me so angry with the "planetinneed.com" MISinformation. I think of the aliens worshipping the dairy cow and it makes me so angry to think of all the suffering our children will face in the next 30 years. How cruel to force feed through fear of broken bones, osteoporosis and peer pressure, dairy products! Worse than tobacco companies, if you ask me.

What on earth are you talking about?

[Rachel--24]

What on earth are you talking about?

I believe she's talking about dairy not being good for us....about the fact that theres alot of MISinformation out there about it. You know..."milk it does a body good"....stuff like that.

Yeah...I drank TONS of milk all my life and thought I was doing something healthy for my body with all the milk and cheese and other dairy products

I know better now....its not actually as good for us as they make it sound....it causes disease....also not the best source of calcium. Believe it or not dairy is more likely to *cause* osteoporosis than to prevent it.

They just dont let you know about all this stuff....we gotta find out on our own...ususally after we're sick.

I'm pretty sure this is what HawkFire is talking about....the food industry misleading the public.