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Jherm21

Vitamin and nutritional issues

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So I finally had my doctor check my vitamins and I'm wondering if any of you guys know if these low levels could cause symptoms. I was low in vitamin a, b12,b1,and vitamin c amd vitamin d now none of these numbers came back completley deficient. But the b1 and vit d were right on the border like one number up. Would any of these cause numbness in my legs tingling in my hands and fast eye movements that are uncontrollable. Also extreme muscle weakness and off balance can barely walk without feeling like I'm going to bite the curb. How accurate are blood tests for water soluble vitamins? I have not spoke with doctor yet but he sometimes blows off the vitamin thing thinking it's no big deal especially if numbers are in range technically.  Would someone suggest a liquid or sublingual supplement for these b vitamins my b6 was low as well just not as bad as the others listed. Or is there certain foods I should eat especially for the b1 and b12. I eat so much meat so anything else that's gluten free that would help. Please dont respond with anything scary especially saying the b1 and b12 can cause permanent nerve damage because I do know this to be true already. I've been gluten free for 3 months and just felt like I wasn't getting better and I think it's because my levels are all low enough to cause symptoms. So maybe some recommendations for brand vitamins would help right now. I'm eating so nutritiously. Meat veggies and fruit all day long. 

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Yes they would cause those issues, or you could have gotten slight contamination as those are also side effects of gluten on those of us how get neurological symptoms or gluten ataxia. But lets try fixing the level first, in fact most people with celiac have to take extra B-vitamins, magnesium, Iron, D, E , Most of us take supplements for them. I take over 2-3 doses spread out through the day to keep my levels constant. We get these issues from a combination of damaged vili and inability to absorb them and other nutrients that re required to process them. We are each different in our internal damage and the way our body processes things. I take Liquid health stress & energy 1tbsp and 1 tbsp neurological support from them mixed in a glass of tea  3 times a day. The company provides other supplement versions as well (great thing about them is the liquid form so no more pills). I also take 3-4times the recommenced dose of magnesium using doctors best and calm versions (doctors best for lunch and dinner time and the calm one for lunch)  both of these can also be mixed in a beverage.     I will give a full list of what I take and what I eat, and a link where I ask others to talk about their diet and regime.

https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/

 

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You are probably low on those vitamins, so supplementing them would mostly not harm you.   Besides, gluten free look for for methylated versions (e.g. B-12 methylated cobalamin, sublingual).  But it comes down to the fact that you are just three months into the gluten-free diet.  You need a lot more time!  Most of us on the forum take a year or two to feel well.  A year.   You already know that neurological issues are some of the last to leave.  But they can leave!   

Keep moving forward!  ? 

Edited by cyclinglady

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Thanks guys for your comments and recommendations. I guess it's a long road?

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I just wanted to chime in that ALL that you described were things that my daughter suffers from and her B12 only showed SLIGHTY deficient.

But here is what you need to know about North American B12 "deficiency".  US standards are WAY LOWER than what other countries of the world consider proper levels.  I *think* we look for anything lower than 250 as a deficiency but in Japan anything under 500 is deficient.   http://www.medicalcompassmd.com/b12-levels-us-standards-may-be/

Add to that the fact that no two people are alike and we all burn through B12 at different rates.   My Dr has said that she has patients come in with levels in the 900's and they have B12 deficiency symptoms.  But when their levels hit 1200's they feel better.   My daughter went for bi-weekly B12 shots.  After a while they kicked in and she became somewhat more active.  That resulted in her burning through it faster and now we go for weekly shots.

Also...you can't "overdose" on B12.  Anything above what the body needs just gets excreted in urine.  Absolutely take a B12 supplement!

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The last time we did my b12 it was 250 and my primary said it was fine but my end started giving me monthly injections. I haven't noticed a difference yet with the injections but could just be me getting everything with the diet down correctly. I think the standard range for all the vitamins are ridiculous. Especially when they are on such a large scale like b12 it doesn't make sense for them to set it that low but like you said most people probably feel better at 1000 I know they say they like for the elderly to have numbers that high so I agree all people should have higher b12 too. I bought a spray for b12 I'm not sure how much it helps but I spray it once a day  

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1 minute ago, Jherm21 said:

The last time we did my b12 it was 250 and my primary said it was fine but my end started giving me monthly injections. I haven't noticed a difference yet with the injections but could just be me getting everything with the diet down correctly. I think the standard range for all the vitamins are ridiculous. Especially when they are on such a large scale like b12 it doesn't make sense for them to set it that low but like you said most people probably feel better at 1000 I know they say they like for the elderly to have numbers that high so I agree all people should have higher b12 too. I bought a spray for b12 I'm not sure how much it helps but I spray it once a day  

Most people should start off with weekly B12 and drop to monthly when they feel they are at the right level for them.  But I have read that celiacs may not be able to go that long in between.   I would say with monthly injections you will be a LONG time before you feel any difference.  Maybe try a sublingual in between if weekly feels like too much for you?

I know many people who eventually learn how to do it at home to save themselves the frequent visits.

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In 2011 I started off with Weekly injections, for one month then every other week for 5 months.   Retested my B12 was barely in the normal range.  Dr stopped the injections to see if my body could maintain (then I would have started oral) but it didn't.  I was taught how to do them monthly at home and have been doing that since.   My last test my B12 number was right in the middle of the normal range (which is where my dr wants it to be) BUT I had the blood drawn only a week after my injection and that affects it.  I normally like to get my blood drawn right before my injection because I feel that is a more true reading.  

My Vitamin D had to be prescription to get enough and is 5000 IU a week, but it was twice a week and I am just now in the middle of the normal range.  

 

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Jherm21,

The people on this board have all given  you some good advice.

I would suggest B- sublinguals because if you have low stomach acid or are taking PPI's your B Vitamins can still be absorbed through the blood vessels in your tongue.  People taking PPI's often have to take much higher levels of certain vitamin/minerals because they absorption can be limited.

Sadly Mermiad's Mom is right most vitamin levels are set at such a level that when you are "technically" low evidence of disease has already shown up so the doctor can diagnose it using only a few key clinical observations.

The earlier you can catch any vitamin/mineral deficiency the better the prognosis and quicker the recovery.

Take your B12 deficiency in it's most advanced state Pernicious Anemia the nerve damage you describe but it is not permanent.

It is just the sign of the deficiency.  I had the same nerve damage the doctor's describe (your words as permanent).

I would wake up in the night from my body's nerve endings tingling like my my the whole side of my body would go numb with pain.

a "classic" sign of a b12 deficiency but my nerve damage was not permanent.

When I took b12 sublinguals my nerve damage healed.

b1 deficiency is common and reversible.

see this link

https://www.ncbi.nlm.nih.gov/pubmed/16987159

entitled  "Thiamine (vitamin B1) deficiency and associated brain damage is still common throughout the world and prevention is simple and safe!"

Many B-Vitamins are like this.

see this link that explains how "Niacin treats digestive problems" unless you are taking PPI's then they block your bodies ability to produce stomach acid "locking you in" to continual usage.

http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm

Add Magnesium Citrate or Magnesium Glycinate and you can help your chronic fatigue 3/day (with each meal).  Just keep any doses 3 to 4 hours apart to limit Magnesium flushing your bowels.  Magnesium Glycinate doesn't do this but is harder to find than Magnesium Citrate.

Magnesium helps cramps, and provides for restful sleep.

There was even a book written about it's many great qualities "The Magnesium Miracle"

see this topic started by ennis_tx it has a great link in it listing all the benefits of Magnesium to the body.

I think once you start a sublingual and Magnesium you wont' believe how much better you feel.

And yes Vitamins can help us even when we are low normal.

They have already mentioned  this in this thread but other countries have much higher limits on their RDA.

The FDA sets the US' RDA of Magnesium at 400 mg where the Canadian RDA is 50% higher at 600mg.

****this is not medical advice

I am glad you were able to find out about your deficiency's before they got so low the doctor's could recognize the "frank" case of Pernicious Anemia like me but . . . I got better when I supplemented with my "low" or missing nutrient like Magnesium and my chronic fatigue, muscle cramps etc.  And my b12 deficiency and my damaged nerve endings.

I hope this is helpful.

posterboy,

 

 

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Thanks everyone for the input, does anyone know of these sublingual brands. Has anyone ever taken sundown vitamins, or the garden life for b complex vitamins?

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I wonder if you have had your ferritin levels checked?  It's important to do if you haven't.

http://www.livestrong.com/article/478084-iron-levels-peripheral-neuropathy/

Also, I've just discovered I have low folate and I'm going to see if supplementing that might help - for some reason all my supplements contain very little and so it is the one vitamin I know I'm low on.

I gather low levels of folate can cause symptoms, too.

 

 

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Christina,

I did get my ferritin checked at diagnosis it was 27 and just got it rechecked and it was 47 so it went up a bit. I still think that is low especially because  I'm still  losing  hair.

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1 hour ago, Jherm21 said:

Christina,

I did get my ferritin checked at diagnosis it was 27 and just got it rechecked and it was 47 so it went up a bit. I still think that is low especially because  I'm still  losing  hair.

My ferritin level (iron store) was a 2 when I was diagnosed.  I was severely anemic with a  very low hemoglobin level (enough for docs to push for blood transfusions).   My last test, some three years later was a 61.  My lab range is 13 to 126.  I would say your level is pretty darn good, but I am not a doctor.   Consider ruling out a thyroid issue or just give the gluten-free diet time.....like six months.  

Patience.  You need a lot of it, when you are recovering from celiac disease.  ?

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Is there a brand I can take. I just want to start on a b complex vitamin. If anyone knows of a trusted brand possibly liquid/sublingual powder capsules. Instead of pill form just because I dont think it will get absorbed. I'm not eating dairy or soy so possibly one without lactase and any soy products. Ennis you seem to know about vitamins and what to take although your list is overwhelmingly long. I'm sorry you have to supplement so much. In reality I would probably feel better if I supplemented with that as well. Doctors don't tell you in specifics what to take a nutritionist don't know the celiac market quite like you celiacs so I thought I would try and get some simplistic brand lists. Also for a multivitamin too. Any advice is good advice.....by the way my diet is impeccable as far as fruits veggies and meats and nuts. I haven't tried quinoa and I know there is hype of that type of grain so I will try it sooner than later. I am still in the overwhelming stage and still not gaining the weight and my fat cells are depleted. 

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Do you know how you react to refined sugar? I have had very similar experience, started noticing numbness which spread, with low/ normal blood levels. Giving up refined sugar and gluten removed all numbness after about three weeks. Now if I eat something sweet by accident I feel it almost immediately in my mouth I'm still trying to explore what,  if any, relationship this has to gluten. 

 

Xx

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46 minutes ago, fionafionafiona said:

Do you know how you react to refined sugar? I have had very similar experience, started noticing numbness which spread, with low/ normal blood levels. Giving up refined sugar and gluten removed all numbness after about three weeks. Now if I eat something sweet by accident I feel it almost immediately in my mouth I'm still trying to explore what,  if any, relationship this has to gluten. 

 

Xx

The gluten probably caused the numbness along with a vitamin deficiency. My numbness is related to gluten ataxia reaction where my body targets nerve and brain as part of a gluten reaction. My mother is diabetic and complains about numbness in reaction to her blood sugar ....personally sugar makes me bloat, lazy, and bleed internal. But this is cause of a UC flare up where it triggers inflammation in my intestine. 

Idea, get a glucose monitor kit ($14 Walmart) test your glucose different times of the day for a base line. And check when you notice the numbness. See if there is a relation with your blood sugar and the symptoms.

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Whichever supplements you do choose, please read the label carefully. The only times I've gotten glutened since diagnosis almost 2 years ago is taking vitamins labeled "gluten free" but missed the very small fine print about them being produced in a facility that also processed wheat or other allergens. I've learned to stay away from those vits as they do cause me problems.  One of the vits that caused me problems was even from the naturopath.  Although it takes about 3 weeks of taking them before I realize my brain is all fogged up and I have muscle and joint aches, extra stomach and intestinal gurgling...then as soon as I stop, it all goes away. 

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