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farukhcasy2

Numbness & Tingling in hands/feet

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Does anyone else get numbness or tingling without other symptoms? I remember my gastroenterologist asking if I experienced any unusual numbness/tingling when I was diagnosed. At the time, I didn’t think so. But now I experience the tingling and/or numbness in my legs and hands multiple times a day. I don’t experience my other symptoms like stomach pain, brain fog or joint pain though (outside of times I gluten myself). I’m debating if it’s worth mentioning to my doctor? I was only diagnosed in December 2019, and I understand I’m still healing. It just throws me off that I don’t experience my “oh, I 100% got glutened” symptoms with the numbness.

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Sure.  This can be due to many things like vitamin deficiencies.  You should get your Vitamin B levels checked.  In fact, it is recommended as standard celiac follow-up care:

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

I have had tingling or numbness for years.  My Doctor does run annual tests and I am not deficient in anything and I eat a good diet rich in nutrients.  I have other autoimmune disorders that improve or are helped by maintaining a gluten free diet, but it does not treat them per se.  My tingling will get worse on some days.  My doctors suspect a 4th autoimmune, but knowing that I am not in favor of immune suppression, we just watch and monitor.  

These are trying times with the pandemic.  I am trying to keep many elderly family members safe, my daughter is studying from home now, and our business is at a stand still, etc.  I just try to move forward.  

Hang in there!  Get checked when you can.  


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Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

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Sure.  This can be due to many things like vitamin deficiencies.  You should get your Vitamin B levels checked.  In fact, it is recommended as standard celiac follow-up care:

I have had tingling or numbness for years.  My Doctor does run annual tests and I am not deficient in anything and I eat a good diet rich in nutrients.  I have other autoimmune disorders that improve or are helped by maintaining a gluten free diet, but it does not treat them per se.  My tingling will get worse on some days.  My doctors suspect a 4th autoimmune, but knowing that I am not in favor of immune suppression, we just watch and monitor.  

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On 5/3/2020 at 7:08 AM, farukhcasy2 said:

Does anyone else get numbness or tingling without other symptoms? I remember my gastroenterologist asking if I experienced any unusual numbness/tingling when I was diagnosed. At the time, I didn’t think so. But now I experience the tingling and/or numbness in my legs and hands multiple times a day. I don’t experience my other symptoms like stomach pain, brain fog or joint pain though (outside of times I gluten myself). I’m debating if it’s worth mentioning to my doctor? I was only diagnosed in December 2019, and I understand I’m still healing. It just throws me off that I don’t experience my “oh, I 100% got glutened” symptoms with the numbness.

FCasy,

I had these problems once....both B-12 and B-1 could be causing your problems....

Take a good B-complex with Benfotiamine.....It is a fat soluble form of B-1 that is highly absorb-able....it is found in the diabetic section...

See this link that shows how much better it is absorb than the form found in most B-Complex's...

https://www.researchgate.net/publication/259627300_Pharmacokinetic_Study_of_Benfotiamine_and_the_Bioavailability_Assessment_Compared_to_Thiamine_Hydrochloride

If your Tingling Hands and Feet are worse at night....so much they wake you (or you body fall's asleep) while sleeping then might have early signs of Beri Beri or just a Thiamine Deficiency and the doctor's don't recognize it yet....

You might also have terrible fatigue.....that no matter how much sleep you get you feel "drained/run down" all the time......I know I had that problem.

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

Posterboy,

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On 5/8/2020 at 6:31 PM, Posterboy said:

Does anyone else get numbness or tingling without other symptoms?

Yes. If you track your potassium consumption for a day or two you will likely find that it is only around 2000 mg a day. The RDI was recently increased to 4700 grams a day and there is no upper limit. There is no shortcut supplemental pill to take, unlike the other 15 vitamins and minerals that Celiacs are prone to. Since most potassium is intracellular there are no lab tests that are helpful.  You want it to be around 5000 grams a day given the +20% to -20% accuracy range legally allowed on the nutrition labels. Milk is good. Eight ounces of whole milk is 160 calories, 400 grams of potassium, 300 grams of calcium and 100 micrograms of iodine, all of which are insufficient in our American diet.. If you are lactose intolerant now but did not used to be, make your own fermented pickled (not quick pickles with vinegar). Our bodies come with the ability to only make enough lactase to support a baby. The lactobacillus from naturally fermented foods enhances that. Antibiotics and processed foods kill them. Canned spinach 70 calories to 1000 grams K, Clam chowder. Even potato chips; 150 calories give you 360 grams of potassium. You need to consume on average more than 2.4 grams of potassium for every calorie you eat to achieve this. Most Americans do not. Even if you are eating a healthy diet.

Changing what you choose to eat is not a lifestyle change. COVID-19 is a lifestyle change.

I started tracking my potassium a few weeks ago in an effort to lower my BP. I am 69. My BP was always high and the diuretics had side effects that were unacceptable to me, not to mention they did nothing for my blood pressure anyway. For the past two weeks I've managed over 5000 g K each day, some days a struggle, and my BP is often still high (over 150/80) but some days it is normal ( less than 120/70). To my surprise though, these last few days my foot neuropathy has been improving. For the first time in 7 years my feet were not burning cold and numb but actually felt warm all day. Aside from starting gluten-free in the first place in 2014 and taking vitamin D and increasing iodine intake, this Potassium has been the most beneficial overall. And when I make my K goal I simultaneously exceed the RDA's for calcium, magnesium, iron, folate, zinc and close to choline (need to eat more eggs). Even my squeaky leg muscles don't squeak as much now.

Second data point. A friend, 40 year old female, my daughter=in-law, has been diagnosed by two doctors with Rheumatoid Arthritis. The usual treatments were ineffective. A third doctor is treating her now for IGG4 Related Disease with prednisone and that is helping. But she called me and said she still had too much pain. She gave me one day of her diet, and it turned out that her iron intake was enough for a male and the others were above RDA but her potassium was only 2429 grams, should be 4700 g.  Eventually she binged on chestnuts and this morning said she felt better today than she has for a while.

Not a doctor, not a professional, not a researcher (though Posterboy, thanks for the complement, my ADD precludes it)

 

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Wheatwacked et Al,

If I remember correctly you said you had started taking Magnesium Citrate as well....to see if it could help your Low Potassium levels....

And apparently it is helping....also Magnesium and Thiamine work together synergistic-ally.....the Magnesium allows you to convert your free thiamine into an active form in the body....this would explain why your neuropathy is getting better.

Also taking Benfotiamine can help with the Low Potassium levels as well....

Here is the article that explains how low Thiamine can lead to "Potassium Wasting"

https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

Dr. Lonsdale summarizes well why Magnesium and Thiamine is the "Keys to Disease/Health"

https://pubmed.ncbi.nlm.nih.gov/25542071/

Benfotamine is the easiest found high absorbing form....

This Youtube online article explains which are the best Thiamine forms to take...

https://www.youtube.com/watch?v=Fx6MQpOYu44&feature=youtu.be&fbclid=IwAR0SzDxGwhB3CL_wfferjjZU0T0_Fpg1LfFFtseCkMHddDnIMKh9u9Ad_QQ

(not sure why links are not activating).....just copy and paste into a browser to follow...

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

Posterboy,

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Food Descript Quantity in Calories Potassium Magnesium Calcium Zinc Iron Folate Choline Phosphorus
06/11/20 grams kcal milligrams milligrams milligrams milligrams milligrams microgr milligrams milligrams
banana 128 114 458 35 6.4 0.2 0.33 26 12.5 28
blueberries 75 43 58 4.5 4.5 0.12 0.21 4.5 4.5 9
mixed nuts 30 200 180 75 32 1.4 0.8 17 0 135
whole milk 360 240 600 36 406 1.33 0.11 18 51.4 302
cola 360 150 0 0 0 0 0 0 0 0
X-large eggs 2 2 eggs 180 180 15.6 73 1.7 2.28 61 382 257
spinach 383 70 1148 214 317 1.6 6 222 58 126
2% milk 360 130 600 40 450 1.7 0.07 18 59 331
watermelon 956 287 1070 96 67 0.96 2.3 28.7 39 105
mixed nuts 30 200 180 75 32 1.4 0.8 17 0 135
M&M Peanut 30 140 110 21 31 0.53 0.35 16.5 11 57
2% milk 360 130 600 40 450 1.7 0.07 18 59 331
Total   1884 5184 652.1 1868.9 12.64 13.32 446.7 676.4 1816
Minimum RDA Male Adult   2000 4700 420 1200 11 8 400 550 700
Upper Limit RDA Male Adult     none set none set 2500 40 45 none set 3500 4000
Upper Limit RDA from supplements       Supplement 350       folic acid 1000    

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Nothing could help my low potassium level because I simply was not consuming enough potassium

Food Description     Quantity in Calories Potassium Magnesium Calcium Zinc Iron Folate Choline
Feb 4, 2020     grams kcal milligrams milligrams milligrams milligrams milligrams micrograms milligrams
Cream of Rice     45 160 30 10 340 0.5 13 52 2.5
Durham's Deluxe mixed nuts     60 400 360 150 100 2.8 2.2 34 31
Strawberries frozen     120 42 177 13 19 0.16 0.9 0 6.8
Navel orange     140 grams 69 232 15 60 0.11 0.18 48 18
Muscle Milk     50 205 564 100 250 3.57 4.3 100 41
Whole Milk     240 160 400 24 271 0.9 0.07 12 34
Choc Quik     20 50 44 13 3 0.15 0.4 0.4 0.3
Grapes, green seedless     240 166 458 16.8 24 0.17 0.86 4.8 13.4
Tomato Sauce     240 60 712 36 33 0.53 2.3 22 24
Ronzoni gluten-free Spaghetti     114 400 0   0   0.16    
canned tuna       120 268 35 25 1 2.4 6 44
mayonaise     30 206 4            
Total       2038 3249 412.8 1125 9.89 26.77 279.2 215
Minimum RDA Male Adult       2000 4700 420 1200 11 8 400 550
Upper Limit RDA Male Adult         none set none set 2500 40 45 none set 3500
Upper Limit RDA from supplements           Supplement 350       folic acid 1000  

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Wheatwacked,

I  had a friend who's doctor had him on 5 Gram of Potassium ....but it didn't help his Low Potassium levels until he took Magnesium Citrate at my urging...

I have shared the Schroll research before but will do again for other's following this thread...

Entitled the Importance of Magnesium for Electrolyte Homeostasis....

http://www.mgwater.com/schroll.shtml

Where they concluded

  • Magnesium is able to restore the ionic and electric imbalance by reactivating the sodium/potassium pump and by reducing the calcium overload.
  • Magnesium is indispensable for potassium substitution and for compensation of a refractory potassium deficiency.

And this is what you will notice if your Potassium levels improve after taking Magnesium Citrate....

And here is why....

Found in this article on Diabetes entitled... Diabetes mellitus and electrolyte disorders

quoting from their article on Hypokalemia aka Low Potassium...

"Hypomagnesemia can cause hypokalemia possibly because a low intracellular magnesium [Mg2+] concentration activates the renal outer medullary K+ channel to secrete more K+[38].

Exogenous insulin can induce mild hypokalemia because it promotes the entry of K+ into skeletal muscles and hepatic cells by increasing the activity of the Na+-K+-ATPase pump[39]"

Read it all when you get a chance....

But when you get low in Magnesium.....you will get low in Potassium too! and only by taking Magnesium Citrate/Glycinate (the two best Bioavailable forms)  etc.... can you reverse the pressure gradient in the kidneys causing you to excrete Potassium due to an electrolyte imbalance...

I had low Potassium once too.....and I didn't know why until I found the Schroll research on Magnesium's role in restoring this electrolyte balance in the body....

I have not been low in Potassium since.....and neither has my friend.

The Magnesium is doing it "Magic" to restore electrolyte balance......Keep it up and you won't be disappointed with your Potassium levels.

The best thing about Magnesium Citrate as you have noted already it "Kills" charlie horses in their tracts....and really perks up someone's energy level's too!

As chlorophyll is to the plant.....Magnesium is too the animal...

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

Posterboy,

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6 hours ago, Posterboy said:

I  had a friend who's doctor had him on 5 Gram of Potassium ....but it didn't help his Low Potassium levels until he took Magnesium Citrate at my urging...

Agreed. Our bodies need 5000 mg a day of potassium and 420 ma a day of magnesium. I think of it as potassium is the engine oil and magnesium the oil pump. If you need to supplement K then odds are your diet is also deficient in Mg and multiple others. Potassium in your blood can only get into the cells when pumped in and that K pump is powered by Magnesium.

Just by focusing on potassium rich foods with a goal for at least 5 grams a day, total I also now get more than the RDA for all the others in the nutritional database. (see the first spreadsheet) including the B's and fiber. I am feeling so much better. My neuropathies are nearly gone. Cold feet are sometimes warm after only two weeks. Tinnitus is less relentless.  Just in general healthier. My anorexia is improved. Never hungry, but I have no trouble eating. And I like eating them. Who doesn't like watermelon? There is no lack of good tasting choices. We are being Marketed to Death. No fear of intestinal lesions and less dependence on supplements. The FDA limits Potassium Citrate over the counter supplementation to less than 99 mg because of potential lesions. And Potassium Citrate is part of the mix used for Lethal Injections.

"Dietary surveys consistently show that people in the United States consume less potassium than recommended, which is why the 2015–2020 Dietary Guidelines for Americans identifies potassium as a “nutrient of public health concern” [27]. According to data from the 2013–2014 National Health and Nutrition Examination Survey (NHANES), the average daily potassium intake from foods is 2,423 mg for males aged 2–19, and 1,888 mg for females aged 2–19 [28]. In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women." https://ods.od.nih.gov/factsheets/Potassium-HealthProfessional/

Fun Facts: To make High Fructose Corn Syrup, they replace Potassium in the molecules with Sodium. The man who brought the technology to us from Japan, was the money-man for the President Nixon Watergate break-in.

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Wheatwacked,

Because Magnesium can restore electrolyte balance....your change over to Magnesium Citrate could of kick started the benefits you have  noticed after changing over to Magnesium Citrate from a Magnesium Oxide....which didn't seem to help you due to it's low absorption rate...

Low Potassium Levels have been shown to effect hearing....but so has Magnesium which restores Potassium Levels to normal levels (balance in the body)....

Here is some research that might help you or the next person who reads this...

https://journals.lww.com/thehearingjournal/Fulltext/2013/06001/Noise_Induced_Tinnitus_Linked_to_Lower_Potassium.1.aspx

Here is the connection to Magnesium....entitled "Phase 2 Study Examining Magnesium-Dependent Tinnitus"

https://pubmed.ncbi.nlm.nih.gov/22249877/

Notice this say's Tinnitus is Magnesium dependent and would explain how taking Magnesium Citrate/Glycinate restored normal  Potassium Channel levels in your Inner Ear effecting/presenting as Tinnitus....

I have had friends I have tried to help with this....some listen ....some don't....but those who do usually get better....It is not genetic...is environmental....note is is Noise induced Tinnitus....

Magnesium restores (d) electrolyte balance to your cellular pathways.....correcting the Potassium Channel levels in your Inner Ear....

A similar thing has been noticed for Low Thiamine levels....

See this research entitled "Vestibular (Inner Ear) Signs of Thiamine Deficiency During the Early Phase of Suspected Wernicke Encephalopathy"

https://pubmed.ncbi.nlm.nih.gov/30107022/

And with normal restored Magnesium levels...we can now convert free thiamine into it's active form in the body....help(ing) alleviate "Inner Ear" symptom's...

See this research about how Magnesium and thiamine are entangled nutrients.... entitled

"Aggravation of Thiamine Deficiency by Magnesium Depletion. A Case Report"

https://pubmed.ncbi.nlm.nih.gov/4050546/

Taking a high quality bioavailable form of Magnesium Citrate you started helps/ed (IMO) your low Potassium levels and helps your body utilize the Thiamine you are eating in your diet...

It is no wonder you noticed a difference...after a few weeks on Magnesium Citrate....this is typical....

Also restful dreams is commonly associated with taking Magnesium Citrate/Glycinate because you are now taking a form your body can easily utilize...

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

Posterboy,

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What I found when I started to accurately monitor my diet for nutrition intake, was that,even with supplements, I was only getting one half to two thirds of the amount of potassium that a human body uses on an everyday basis. It was not that I wasn't able to use what I had, I just did not have it. Like I stopped at the gas station every day and filled the oil and power steering fluid, charged the battery and replenished the windshield washer, and topped off the brake fluid; but only bought one half a tank of gas. Potassium was my gas. Once I started eating 5 grams a day of potassium my health improved. Foods like milk, potatoes, avocado, spinach, bananas, watermelon, clam chowder, tomato sauce, eggs. Foods that in my warped mind (influenced by marketing and profit motivated science) were to be avoided or worse yet social pressure made me think they were not good. French fries have a terrible reputation, but they have a ton of potassium, as do potato chips and mashed potatoes. The Irish did fine with potatoes until the famine, because potatoes did not just supply calories (as wheat, rice, and corn do) but was a sufficient source of potassium. According to scientists our bodies need 5 grams of potassium everyday but only 1/2 gram of magnesium. Even less of most of the other essential nutrients. And when I ate enough food to get 5 grams of potassium each day I simultaneously got enough of all of the other essentials.

An easy way to check. Take one or two days and write down how much potassium is in what you eat. It's on most labels. Or Google it: 'Potassium in watermelon' works. NIH estimates that over 50% of us are deficient. Any surprise that we are a population approaching over 50% obesity.

If you want, I'll put your days food intake into my spreadsheet based on Nutrition Database SR28 and give you the results. Eye opener.  I've been working on the spreadsheet concept since I was a scrawny kid, but never had the database or the tools to make it more than a waste of time. Now I do. The only ones not included that I believe are important are Iodine and Lithium.

I am not advocating any particular foods, or diet. I am advocating that whatever you choose to eat has at least 5 grams a day of potassium. P.S. My feet were warm last night.  Paul.

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Wheatwacked,

I am glad you found something that helps you.

My point was (presumably) that your Potassium level's didn't improve until you started taking the Magnesium Citrate thus restoring your electrolyte balance in the body.

I had a similar experience 10+years ago...but I didn't know what is was called at the time....I only knew I got better (My Potassium Levels) went to normal AFTER taking Magnesium.

If this is happening to you.......you have developed Refeeding Syndrome and the doctor's have missed it's clinical signs as they did in my case as well...

Here is a nice illustration to show how these electrolyte abnormalities occur with/part of Refeeding Syndrome.

https://www.bing.com/search?q=low+potassium+and+refeeding+syndrome&search=&form=QBLH

And here is a nice article about it in Medical News Today...

https://www.medicalnewstoday.com/articles/322120#risk-factors

Being a Celiac put's us at higher risk for developing it....and the doctor's have not associated the two.....so the 2nd one (RFS) never get's diagnosed....and we continue to have electrolyte problems like low Potassium level's...etc...

Quoting from the Medical News Today article about it...

"Refeeding syndrome can also lead to a lack of magnesium. Hypomagnesemia is the name for dangerously low levels of magnesium.

Signs and symptoms of hypomagnesemia include:....

Low potassium levels, or hypokalemia"

So the Low Sodium levels is a sign of having become low in Magnesium FIRST and the two are treated as separate disease(s)/problems instead of one wholistic/united/overall Refeeding Syndrome....

Once you get to the root cause....the whole person get's better....or at least it has been my experience.

I only know taking Magnesium Citrate helped my Low Potassium levels!

Again I hope this is helpful but it is not medical advise.

Posterboy,

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I think I see the disconnect in our conversation. I do not have low serum potassium. Maybe back in 1996 when I had acute pancreatitis and my triglycerides measured over 10,000, and I spent a week in the hospital, nothing by mouth. Then, when restarting food intake, refeeding syndrome would have been a real issue. At the time, it was assumed that my condition was a result of poor diet, caused by excessive alcohol consumption. An another opportunity missed, by the way, to discover the true underlying cause. Gluten. Once I started the gluten-free diet in 2014 the alcohol addiction ended and I had no need nor desire for it.  It was never psychologic. The psychological excuses were all constructed in my head to validate the physical need. All melted away once the gluten was gone. Different gripe, sorry. 

My blood potassium is 4.4 mmol/l, smack dab in the middle of the range.  What I recently found was my diet did not have even close to enough potassium in it. I consumed less than half of what I should have been. Even at my worst, in 2014, I didn't have persistent diarrhea, likes Crohn's or IBS or contaminated water, that causes excessive loss of potassium and low serum potassium level. A straight up case of malnutrition, not malabsorption or excessive loss. Serum potassium is the first priority at the expense of cellular levels so the potassium I was consuming went to maintaining blood level, instead of supplying my cells.  I'll call it cellular starvation. So when I made dietary choices aimed at a daily intake of 5 grams a day of K, it did not take long to improve me. Most pronounced has been peripheral neuropathy, mostly burning cold numb feet.  Almost completely gone. If you look at my food chart from February in an earlier post, my daily magnesium was 412mg (close, RDA is 420) while potassium was only 3249 mg (RDA 4700). Today I was at 520 Mg and 5723 K and I feel the difference. Even better, eating foods with enough potassium has raised all my other essential nutrients to above the RDA or very close. I am tracking 30 of them. 

The potassium thing is not limited to just Celiac Disease, though I think it is recognized more in people with celiac disease because of the comorbid Crohn's and IBS type symptoms.  " Although blood potassium levels can provide some indication of potassium status, they often correlate poorly with tissue potassium stores" "In 2009-2010, the average dietary potassium intake of the U.S. population aged two years and older was 2640 mg per day. " "FDA has ruled that some oral drug products that contain potassium chloride and provide more than 99 mg potassium are not safe because they have been associated with small-bowel lesions."

Thanks, Paul

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