Diet - gluten, etc

[Panther123]

Hi everyone and thanks for reading this.

Some background might be useful. My mother and my sister have been diagnosed with MS. I also have a 2nd cousin (male) with MS and a great grandmother that had MS. I have a first cousin with autoimmune hepatitis.

I have had GI issues for about 12 years, which I originally thought was lactose intolerance. I quit dairy but still felt bad, but not as bad. About 5 years ago I quit all gluten and my GI tract improved substantially. Over time I added dairy back to my diet and did not have any problems with it.

I now have a host of issues which all seem to be symptoms of various autoimmune diseases, including MS. All the symptoms I had with gluten have returned plus many others. I am seeing my GP to discuss this, for the first time. I expect a round of tests...blah! I tend to avoid Doctors but guess I can't do that anymore.

I am interested in other people's experiences with diet and how it has effected your quality of life. I have noticed some very interesting things. When I eat certain foods it makes me feel profoundly depressed and takes about 3 days to work its way out of my system.

As of now, I fear that I may have MS as all my symptoms are the same as when my sister was diagnosed.

Looking forward to your replies.

[jimmylegs]

hi and welcome

i was dxd after about 15 yrs of progressively restrictive diet. i've been working to reverse damage done since (but some seems to be permanent, so be it) and am 9 years into that process.

i've tried to be scientific about it, but at the end of the day the biggest since improvement i had was after 3 days on a protocol that included a high protein diet with tons of supplements. it could have been the b vitamins, could have been the protein, or the dietary lecithin, or the vitamin e. we'll never know. but i got more functionality back that at any other time since.

other times i saw noticeable difference with one isolated change included fixing zinc status (which improved cognitive function and cleared up chronic open sores) and magnesium status (which eliminated self-inflicted symptoms related to vit D3 overdose, and along the way cleared up chronic issues with anxiety, menstrual cramps, and more random pain issues)

before i fixed zinc, i had a very sensitive GI tract and would get very bloated esp after eating bread, and sometimes if i ate fried foods, would feel like i had eaten a box of nails. now, i don't eat grain products daily but i have no problem whatsoever with them when i do.

it's pretty nice taking care of oneself overall glad you've noticed that you can influence how you feel with day to day choices

[lyndacarol]

Some background might be useful. My mother and my sister have been diagnosed with MS. I also have a 2nd cousin (male) with MS and a great grandmother that had MS. I have a first cousin with autoimmune hepatitis.

I have had GI issues for about 12 years, which I originally thought was lactose intolerance. I quit dairy but still felt bad, but not as bad. About 5 years ago I quit all gluten and my GI tract improved substantially. Over time I added dairy back to my diet and did not have any problems with it.

I now have a host of issues which all seem to be symptoms of various autoimmune diseases, including MS. All the symptoms I had with gluten have returned plus many others. I am seeing my GP to discuss this, for the first time. I expect a round of tests...blah! I tend to avoid Doctors but guess I can't do that anymore.

I am interested in other people's experiences with diet and how it has effected your quality of life. I have noticed some very interesting things. When I eat certain foods it makes me feel profoundly depressed and takes about 3 days to work its way out of my system.

As of now, I fear that I may have MS as all my symptoms are the same as when my sister was diagnosed.

Looking forward to your replies.

Hi and welcome to ThisIsMS, Panther123.

I think that diet is very important; like you, I am eating gluten-free. In fact, I am trying to go one step further and eat organic foods, when possible. My specific concern is with glyphosate (found in the herbicide, Roundup), which is used on many crops (including wheat) for humans and animals. It is systemic in the plants and cannot be washed off.

Removing trans fats, processed foods, artificial sweeteners, and reducing carbohydrates in my diet has been a good thing for me to do, although it has not improved my symptoms.

Your experience of possible lactose intolerance disappearing after quitting happened to Pete Bronski as well. You are probably acquainted with the website http://nogluten-noproblem.com/ by Pete and Kelli Bronski.

I am intrigued to hear your family history with MS diagnoses. The symptoms of MS are nonspecific and common to many conditions, which must be ruled out before the MS diagnosis can be made.

The cause (genes, bacteria/viruses, nutrient deficiencies, environmental factors… whatever causes MS is not known) seems to run in families or communities to a limited extent. PawPaw is one of the largest clusters I have heard of:

An article from the Chicago Tribune, January 5, 2003, told about an epidemiological study planned for PawPaw, Illinois (tiny agricultural town of 850 near Rockford) where Harold Ikeler's family has been targeted by MS--his wife died of it, all three of his daughters have it, and five grandchildren have it!

At the time of the article, a resident had tracked down 14 current and former residents with the disease.

http://www.thisisms.com/forum/post14784 ... Paw#p14784

Do not assume that you have the same diagnosis as your sister, even if your symptoms are the same. Find and work with a GP you respect and trust; discuss with him a written list/timeline of your symptoms; and plan your investigation to find the correct diagnosis for you. (And, by the way, request your own copy of any test results that are done – it is important to have the actual numbers.)

Let us know how it goes.

[ElliotB]

Since you suspect MS, it is in your best interest for the moment to follow a MS diet (whether you have MS or not). You want to be as healthy as possible. Try one and if it doesn't work for you after a reasonable period of time, try another. Oddly, all the diets seem to work for some but not all.

Being dairy/gluten free is probably a very good idea so choose the diet you follow carefully. Also if you do not already exercise regularly, it might be a good idea to start.

Since you find certain foods greatly affect you, you definitely want to determine exactly what those foods are and avoid them.

[Panther123]

Thanks for all the wonderful replies.

I have been thinking about a more restrictive diet and am slowly working my way there. I find that things with chemical additives in them cause me a lot of problems.

I do exercise fairly regularly. I started a regular Tai Chi class - twice a week - about 2 years ago and have been practicing at home too. The Tai Chi has worked wonders as some of my symptoms abated for a while. They now seem to be back (at least the last 2 months).

I do have an appointment with my GP at the end of June to discuss this. Can't come soon enough as I am having problems functioning at work. I work in an extremely fast paced and high stress job with frequent deadlines and high expectations by clients. Have not been doing so good at work lately because I forget things, can't stay focused for more than 10 minutes and am feeling apathetic. Very frustrating as this is exactly the opposite of how I used to be. It takes me 3 days to do the work I did in 1 day and I see all my fellow workers not having this problem (yes, they are the same age).

Thanks again for the replies.

[lyndacarol]

I now have a host of issues which all seem to be symptoms of various autoimmune diseases, including MS. All the symptoms I had with gluten have returned plus many others. I am seeing my GP to discuss this, for the first time.

Other than "GI issues," you have not been specific about your symptoms. (Oops, I see you have listed "forgetfulness," "inability to focus," "apathy." If these also include numbness/tingling in your extremities (arms/hands or legs/feet), which is officially known as "peripheral neuropathy", you may be interested in these suggestions from the University of Chicago, which could serve as the start of a discussion with your GP.

Peripheral neuropathy is a common symptom in many conditions (MS is only one of the possibilities; MS can only be considered as a diagnosis after the other more likely possibilities have been ruled out.). In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels [including a homocysteine test and a methylmalonic acid test, in my opinion]
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease [including testing for gluten sensitivity, in general, in my opinion]
Lyme disease
HIV/AIDS
Hepatitis C and B

We wish you all the best in your search for answers.

[Panther123]

Symptoms that I have:

Hearing loss
Tinitus: sounds like a constant humming in my ear. Sometimes very loud for 5/10 seconds and I can't hear anything else.
Comprehension issues: sometimes cannot understand meaning of words said and have to think about it. Like translating a foreign language. Happens in seconds but makes me feel kind've dumb.
Swallowing: only with liquids. Causes me to cough quite a lot. Sometimes I even have this problem just swallowing my own saliva.
Memory issues - can't remember things. This is one of the worst as I had a near perfect memory (almost photographic but not quite).
Talking issues - know what word I want to say but can't make my body say it. I have to search for different words or a different way of saying it.
Lack of focus: can't stay focused for more than 10 minutes.
Bladder control issues: have to urinate frequently and uncontrollable urges to go.
Itchy skin - mostly on my back and arms. Very bad this year, I've even scratched the skin raw.
Fatigue - significant enough that I've fallen asleep in my office at work.
GI issues.
Just started to feel tingling in my forearms and hands and on bottom of my feet.
Depression that just seemed to come out of left field. No reason to feel depressed but I do.

I am hoping that it is not MS. In fact I've had many of these symptoms for the past 5 + years but just figured they were part of the aging process. It wasn't until about a month ago, when they started to get worse, the light bulb went off and I thought, OMG, what if this is MS.

I truly hope that it is not. I would love to blame it on lyme disease or vitamin deficiency or some other cause. I expect I will have many diagnostic tests in the next few months.

At this point I almost just want an answer. I am having a difficult time with the cognitive issues. It is very difficult to function on a day-to-day basis. However, I do have good days. Even my good days are not even close to what they were 10 years ago. I could work at the office from 6 am to 9 pm with no problems. Because of the drive and energy I had I achieved a good measure of success. That is eroding now - I am no longer the go to guy at the office. Now I'm just a drag on everyone because I can't stay focused and get anything done.

Very very frustrating.

[jimmylegs]

pardon if posted already panther, but just dropping in for a really quick question - what is your daily routine like for food, fluids, meds, supplements (nutritional or herbal), stress (emotional or physical), activity level, antinutrients/sugar/alcohol/etc?

[lyndacarol]

Symptoms that I have:

Hearing loss
Tinitus: sounds like a constant humming in my ear. Sometimes very loud for 5/10 seconds and I can't hear anything else.
Comprehension issues: sometimes cannot understand meaning of words said and have to think about it. Like translating a foreign language. Happens in seconds but makes me feel kind've dumb.
Swallowing: only with liquids. Causes me to cough quite a lot. Sometimes I even have this problem just swallowing my own saliva.
Memory issues - can't remember things. This is one of the worst as I had a near perfect memory (almost photographic but not quite).
Talking issues - know what word I want to say but can't make my body say it. I have to search for different words or a different way of saying it.
Lack of focus: can't stay focused for more than 10 minutes.
Bladder control issues: have to urinate frequently and uncontrollable urges to go.
Itchy skin - mostly on my back and arms. Very bad this year, I've even scratched the skin raw.
Fatigue - significant enough that I've fallen asleep in my office at work.
GI issues.
Just started to feel tingling in my forearms and hands and on bottom of my feet.
Depression that just seemed to come out of left field. No reason to feel depressed but I do.

I am hoping that it is not MS. In fact I've had many of these symptoms for the past 5 + years but just figured they were part of the aging process. It wasn't until about a month ago, when they started to get worse, the light bulb went off and I thought, OMG, what if this is MS.

I truly hope that it is not. I would love to blame it on lyme disease or vitamin deficiency or some other cause. I expect I will have many diagnostic tests in the next few months.

At this point I almost just want an answer. I am having a difficult time with the cognitive issues. It is very difficult to function on a day-to-day basis. However, I do have good days. Even my good days are not even close to what they were 10 years ago. I could work at the office from 6 am to 9 pm with no problems. Because of the drive and energy I had I achieved a good measure of success. That is eroding now - I am no longer the go to guy at the office. Now I'm just a drag on everyone because I can't stay focused and get anything done.

Very very frustrating.

I think you will find all of the symptoms you mentioned in the following video:



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 52-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child? ); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

(@51:00)

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment ("memory issues" and "lack of focus")
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine (found with blood test)
Elevated MMA (found with another blood test)
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

Hearing loss, tinnitus (ringing in the ears), and dysphasia (difficulty swallowing), even itchy skin (an abnormal sensation called paresthesia) are consistent with vitamin B12 deficiency (among other conditions). In my opinion (I have no medical background), a possible B12 deficiency should be investigated first – testing is inexpensive and easily done. Any person, at any age, can develop a B12 deficiency. (By the way, it is also mentioned in the video that B12 deficiency can run in a family.) If caught and treated early, symptoms of B12 deficiency are usually reversible.

From page 126 of the new book, What's Wrong with My Child?:

One important note: If you decide that you or someone in your family should be tested for B12 deficiency, do not start administering B12 supplements before the tests are performed. This will skew the results,…

[Panther123]

JimmyLegs,

Daily routine consists of:

Breakfast is gluten free cereal like chex. Sometimes eggs or yogurt instead.
Snack - usually a piece of fruit
Lunch - usually a salad with some protein in it (oil and vinegar dressing)
Afternoon snack - gluten free granola bar or sometimes nuts or fruit or veggies
Dinner - protein a veggie and rice or potato (thinking of giving up both and just eating more veggies)

Drink some water during the day but probs not enough. Drink coffee and tea during the day. Tea with a little honey. Coffee with a little cream, sometimes a packet of sugar but have switched to stevia recently.

Take vit D3, B12 and B complex. Have taken herbal supplements in past but not recently. Sometimes take a little iodine too, maybe once a week or so.

Activity consists of Tai Chi. Practice/class time about 3 or 4 days a week. In summer also play disc golf, regular golf and backyard activities.

I am not overweight but have gained 10 lbs in last couple of year.

Drinking - during week one drink a day when I get home from work. Every other weekend go drinking with friends at a bar.

[Panther123]

lyndacarol

I have seen your post numerous times including another time you left it on one of my threads. Also watched part of the video.

I understand the symptoms I have could be the result of something like B12 deficiency, lyme disease, candida, syphilis, HIV, Lupus, copper deficiency, fibromyalgia.

I would expect my GP to test for all of these things and perhaps others I am not aware of yet.

Thanks for pointing this out.

[jimmylegs]

thx for the info p!

diet looks healthy but it might be interesting to run through some of the essential nutrients that are of concern to ms patients and also that are relevant to your symptoms, to see if you're meeting recommended daily amts (often ppl are not!)

dehydration is a pain. causes a whole bunch of issues including messing up blood pressure, stomach acid, and such.

talk to me about the d3? how many IUs per day? if taken solo and not in balanced combination w cofactors, you can end up pulling the necessary cofactors out of tissue and ending up with basically an induced insufficiency.

going to repeat your symptoms list with some possible nutritional suspects added. could provide a nice short list. then you can compare daily requirements to your daily food intake. if you just do one at a time, it's not too strenuous and can be very informative

Tinitus: possibly zinc. science says:
Effects of serum zinc level on tinnitus (2015)
http://www.sciencedirect.com/science/ar ... 091400283X
study participants: "tinnitus for at least 6 mo"
prevalence of low zinc in tinnitus patients: "Twelve of 100 ... low zinc levels"
study definition of 'normal' zinc: "70 -120 μg/dl ... normal"
i always suggest, based on numerous studies looking at serum zinc in HEALTHY individuals, that people should be aiming for serum zinc of around 120. so by my lights *ALL* patients in the above study were low in zinc. they need to do a follow up study of tinnitus prevalence in people w zinc between 115 and 125 ug/dl. note that more does not equal better with minerals. 120 is a good starting target but just because you might need to double your levels (ie double your dietary intake) doesn't mean you want to *triple* them or anything!

try tallying up daily mgs of zinc from your current diet, using this table (processed foods like chex wont be in there but the whole foods will!)
http://www.whfoods.com/genpage.php?tnam ... #foodchart

actually i have to go do some other stuff but will finish off the symptom list later.

[Panther123]

Thanks for the thoughts. Wondering what vitamin mineral levels I should ask my Dr. to check when I go in for the visit?

I am taking D3 by itself. Guess I better do a little more research on vitamin supplements to be sure I am not causing a different problem in the attempt to correct another.

[jimmylegs]

hey there consider asking for serum ferritin, serum (yes serum, not a urine ceruloplasmin test) copper, serum magnesium, and serum zinc.

serum ferritin you may already have on file. it not, great to check for fatigue prevention. you can also just review your diet to establish if you are meeting daily needs. either is good, both is best

serum magnesium is the one i have the most xp with in terms of depletion after d3. i think the amount taken daily will have a bearing on the severity of the effect which is why i inquired about the number of IU of vit d3 you take daily. the thing i noticed most about taking d3 alone was a pretty severe dysphagia issue, which you have also described above. (note that i followed that up with a terrible learning curve related to restoring magnesium status - not all forms are created equal and i learned about all the unpleasant side effects of taking the wrong mag supplement before i worked my way around to a proper diet and the correct form for best absorption and no sfx)

serum zinc you need zinc for proper immune system function, absorption/utilization of other nutrients ... vit a, vit b12, vit d3 and iron are a few i can think of off the top of my head. i used to have a quite serious zinc deficiency - my level when first tested was 56, so a loooong way off that 120 target.. and i can say that since correcting that problem that it is my skin condition and cognitive function that have improved the most. in my bloodwork, d3 absorption tripled after zinc repletion (probably the work done on magnesium played a more important role however) and my serum uric acid, which had been stuck on the 'ms average' for yrs no matter what i did w diet, normalized to healthy levels.

you want a handle on your serum copper so that you can calculate your serum zn cu ratio. it's no good to try to push up something like zinc on its own. it can end up pushing other mineral levels down, the ratios get out of whack, and you end up with another induced deficiency from looking at things one at a time instead of all at once. hence the emphasis on food sources - nature does it best and the diet and bloodwork checks are awesome ways to assess why one approach or another might not be having the desired effect on symptoms. one person responds well to a diet, another finds it useful - they probably have similar issues but for very different reasons.

if i had to rank those four mineral in order of importance vis a vis correcting possible vit d3 interactions i would say magnesium first, zinc second.

then serum ferritin if you don't already have it done b/c it's so obvious for fatigue, and copper last because you want to know where your levels are at, be able to assess whether your zn cu ratio is optimal or not, and also how safe it will be to push other minerals up, without driving copper levels down too far.