More Unique Symptoms

[Renoraines]

Hi all, hope all our well. I’m a 43 year-old male with lymphocytic colitis (symptoms started about 5-6 years ago, diagnosed 4 years ago). I also have Hashimoto’s, which at least one endocrinologist told me is well controlled enough that I shouldn’t expect symptoms. I am recovering from a colitis flare at the moment or trying to. I’m eating lamb, sweet potatoes, white rice, and the safe veggies listed on this site. I just had my B12, Magnesium, and Vit. D checked, and they are within the normal range (low to middle of the ranges). My main question is related to the extra-gastrointestinal symptoms I’ve had on and off for about 3 years now, specifically, fairy widespread joint pain in both my large joints and peripheral joints. My low back/hips and neck are the worst, but I’m also affected in my wrists and even fingers. I’ve tested negative for RA multiple times over several years. I also get a fair amount of small fiber neuropathy (itching and “zings” and pins and needles that are worse at night). Again, I’ve been tested repeatedly for neuro disorders and they found nothing. Negative for Lyme too. I definitely have the sense that this is all the result of systemic inflammation, and I am following the diet prescribed on this site to try to get back to solid stools. But, does this sound like anyone else’s experience? I’ve also noticed a slight balance issue and fine-motor issue (very slight) when I’m flaring. Could be my thyroid I guess. Just trying to get feedback to determine how aggressively I should look at other Autoimmune diagnoses. Thanks!

[tex]

Those symptoms aren't unique. They're actually rather common with MC. My arthritis symptoms were so bad before I was able to make all the correct diet changes that all but one of the fingers of my right hand grew crooked and twisted. My fingers, elbows, knees, lower back were usually so inflamed that if I accidentally bumped them, the pain would almost bring me to my knees. Some days, I had to use two canes just to get around. All that faded away after I got my diet straightened out, but of course my fingers are still crooked, as the damage is not reversible.

Re: the neurological issues, I had so many neurological issues that I was actually diagnosed by a neurologist with Parkinson's disease, which of course, I don't have. Apparently I had reacted so long that I had developed a severe magnesium deficiency, and even though the liver is supposed to be able to store vitamin B-12 for five years, I either had a vitamin B-12 deficiency, or my body was unable to methalize (activate) my vitamins. Roughly half of us have methylenetetrahydrofolate reductase (MTHFR) gene mutations, which causes us to be incapable of properly activating our vitamins so that our body can use them. Vitamins in our food, and vitamin supplements are typically in the inactive form, for better storage life, but our body can't use them in chemical reactions until they're activated (methylated). Adequate magnesium is absolutely necessary in order to activate vitamins.

Most doctors have traditionally ordered the magnesium serum test for checking magnesium levels. But shame on them, because the body automatically regulates blood levels of magnesium since it's a critical electrolyte. That makes serum magnesium tests worthless except in an emergency room setting. The proper test to order to check magnesium reserves is the red blood cell (RBC) magnesium test. And the levels listed as guidelines by most labs is way too low, so unless your RBC magnesium test results are in the upper part of the range most labs specify, you are almost surely magnesium deficient.

Anyway, the combination of magnesium deficiency and methylation issues (MTHFR gene mutations), causes serious neurological problems for us. And for those of us who have a hyperactive immune system, even the so-called legal level of 20 ppm of gluten, is enough to cause us to react, making it almost impossible for us to eat most commercially processed foods, even though they may be certified as gluten-free, without eventually reacting, as the antigliadin antibodies produced by our immune system continue to increase because of the continued low level gluten exposure.

I hope this is helpful.

Tex

[Renoraines]

So helpful, thank you. I will take some time to process this, but in the meantime, I will get that RBC test and read some of the posts on magnesium. I very much appreciate it.

[jbrohlr]

A couple of months prior to my initial MC flair I had balance problems and peripheral neuropathy (right arm and right leg would become numb and tingly). I went to my doctor about these problems, he had me checked for Multiple Sclerosis, which came out negative.

My neurological symptoms cleared up with the restricted diet with the exception of some numbness in my toes. I've read that gluten can cause neurological problems; gluten ataxia being one, which involves a debilitating loss of balance.

John R.

[tex]

That sometimes happens, but I have a hunch that more often than not the numbness and other neurological issues that accompany gluten sensitivity are caused by magnesium deficiency, due to to untreated gluten sensitivity. You won't to find much information on that in the medical literature, simply because doctors assume that magnesium deficiency is rare, because they 'rarely detect it, due to the fact that they use the serum magnesium test, rather than the correct test, the RBC magnesium test. When doctors are unable to detect a disease, a symptom, a deficiency, etc. they assume that the event is rare, so sure enough, it becomes a self-fulfilling prophecy, because they stop looking for it. That's my opinion, of course, but as I've pointed out many times, I once had a severe magnesium deficiency that went on for more than a year, and every time I explained my symptoms to another doctor, they looked at me like I was speaking in Greek. I had to discover my magnesium deficiency, myself, in order to resolve my symptoms, despite requesting help from close to half a dozen different doctors, including emergency room doctors.

Tex