Need help/insight - Vitamin deficiency symptoms appeared after going gluten free.

Posterboy · October 15, 2022

On 10/11/2022 at 3:31 PM, Wheatwacked said:

Solgar B1 as Thiamine HCL, 500 mg per cap. I am taking 2000 mg three times a day and it seems to be improving vision issues and peripheral neurapathy and stamina. It seems like my trigger point is 6000 mg/day. I am hoping that between the increase in prednisolone to 15 mg and the B1 it will pull my glucose and A1C back into normal territory. Fasting blood tests have drifted into the firmly diabetic range (124 and greater than 6.5) over the past year. At 1000 mg B1 it did not affect glucose so I hope 6000 mg will. Blood tests next month. Standing from a squat is improved.

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Wheatwacked,

Benfotiamine has a much higher absorption profile compared to Thiamine HCL or Thiamine Mononitrate another common form of Thiamine found in most B-1 supplements.

See this article about it...

Entitled "Thiamine Deficiency and Diabetic Polyneuropathy"

https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy

I will quote the relevant information so you won't have to read the whole article (if you don't want to or don't have the time to right now)....

quoting

"The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate"

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

Posterboy,

DiInNC · October 15, 2022

The first thing I noticed in the ingredients list for your multi is that B-12 is in the form of cyanocobalomin. This is THE cheapest form of B-12 available and not able to be methylated and used by the body of 67% of the population due to the MTHFR genetic defect. B-12 is critical to the Kreb's Energy cycle. It's not going to solve your stomach issues to change vitamins but you're going to definitely feel better. I use (and swear by) my multi designed by a chiropractor that has the usable forms of all B vitamins. Seeking Health is the brand name and it's available on Amazon. I know it is absorbable because I've had all the expensive vitamin and mineral stool tests to make sure.

Additionally, there is a test for cross reactivity with 8 different foods that the body can mistake as gluten. Mine is potatoes. Ugh. You absolutely need this test because I can eat a few French fries and seem like I had an intake of gluten. Or you can look up all 8 foods and cut them out of your diet. THAT could be the source of your stomach problems. Unlike a typical food sensitivity, you will not be able to ever add that food back into your diet. This isn't an allergy that can go away if you don't eat the item for 6 months. 12 years after finding out I couldn't have potatoes, eating 4 French fries one time per year will set me back for 3 months in my digestive health. This test is critical.

I also have occassional migraines but, being female, it's more likely mine are related to hormones even though I'm 65. High doses of potassium sometimes help mine. By "high" I mean 4 to 6 tablets where 1 is the normal dose. I found out last week that you can't let a mild headache fester for 3 days. The ER doc said I have to treat it and get rid of it before it blows up into a migraine.

I really think the cross-reactivity test is what you need if they haven't done it. When the gut straightens out, your migraines will likely go away or at least become less frequent. Best of luck to you.

rrmac · October 15, 2022

On 10/15/2022 at 4:59 AM, DiInNC said:

The first thing I noticed in the ingredients list for your multi is that B-12 is in the form of cyanocobalomin. This is THE cheapest form of B-12 available and not able to be methylated and used by the body of 67% of the population due to the MTHFR genetic defect. B-12 is critical to the Kreb's Energy cycle. It's not going to solve your stomach issues to change vitamins but you're going to definitely feel better. I use (and swear by) my multi designed by a chiropractor that has the usable forms of all B vitamins. Seeking Health is the brand name and it's available on Amazon. I know it is absorbable because I've had all the expensive vitamin and mineral stool tests to make sure.

Additionally, there is a test for cross reactivity with 8 different foods that the body can mistake as gluten. Mine is potatoes. Ugh. You absolutely need this test because I can eat a few French fries and seem like I had an intake of gluten. Or you can look up all 8 foods and cut them out of your diet. THAT could be the source of your stomach problems. Unlike a typical food sensitivity, you will not be able to ever add that food back into your diet. This isn't an allergy that can go away if you don't eat the item for 6 months. 12 years after finding out I couldn't have potatoes, eating 4 French fries one time per year will set me back for 3 months in my digestive health. This test is critical.

I also have occassional migraines but, being female, it's more likely mine are related to hormones even though I'm 65. High doses of potassium sometimes help mine. By "high" I mean 4 to 6 tablets where 1 is the normal dose. I found out last week that you can't let a mild headache fester for 3 days. The ER doc said I have to treat it and get rid of it before it blows up into a migraine.

I really think the cross-reactivity test is what you need if they haven't done it. When the gut straightens out, your migraines will likely go away or at least become less frequent. Best of luck to you.

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That is very interesting is there a name for this course reactivity test and what kind of doctor gives it?

trents · October 15, 2022

On 10/15/2022 at 1:11 PM, rrmac said:

That is very interesting is there a name for this course reactivity test and what kind of doctor gives it?

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I think you meant to type "cross reactivity" instead of "course reactivity".

Posterboy · October 15, 2022

On 10/11/2022 at 3:31 PM, Wheatwacked said:

Solgar B1 as Thiamine HCL, 500 mg per cap. I am taking 2000 mg three times a day and it seems to be improving vision issues and peripheral neurapathy and stamina. It seems like my trigger point is 6000 mg/day. I am hoping that between the increase in prednisolone to 15 mg and the B1 it will pull my glucose and A1C back into normal territory. Fasting blood tests have drifted into the firmly diabetic range (124 and greater than 6.5) over the past year. At 1000 mg B1 it did not affect glucose so I hope 6000 mg will. Blood tests next month. Standing from a squat is improved.

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Wheatwacked,

I meant to mention this last night......but I suddenly had a key go dead on my keyboard and made it near impossible to type what I wanted to say.

If you don't test your blood sugars normally then I would say wait until you have your new A1C number and then try this regimen.

Taking some Chromium Polynicotinate can help your blood sugar levels.......when I was prediabetic taking it helped me forestall my diabetic A1C numbers into to the diabetic numbers for years....

I dropped my A1C numbers by 2.0 (two) whole points in as little as 2 months of taking Chromium.

It does this by acting as a catalyst for Insulin increasing its efffictiveness by a factor of 100x....

I was low in Chromium at the time!

I do reccommend the Poly form......Picolinate is the one commonly found in most supplementns but it can cause unwanted kidney issues.....it is the most commonly found form because their is a patent on this form......sadly this is the way it often works......every body has a "Patented" form.....and thus make more money when you take there form etc...

If your numbers keep creeping up and I think you will be happy with the results!

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

Posterboy,

trents · October 15, 2022

It would take approximately 3500 cyanocobalomin B12 tablets consumed in a single day in order to ingest a lethal amount of cyanide. Cyanide is found naturally in the seeds of many fruits. The same amount of cyanide in 3500 B12 tablets is found in only 18 crushed apple cores. https://www.multivitaminguide.org/blog/is-cyanocobalamin-vitamin-b12-toxic/

Assimilation efficiency is probably more of an issue.

plumbago · October 16, 2022

On 10/15/2022 at 1:11 PM, rrmac said:

That is very interesting is there a name for this course reactivity test and what kind of doctor gives it?

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I am also interested in more detail of the cross reactivity test, ie, blood test? Thanks.

LCAnacortes · October 16, 2022

I am so sorry you are going through this. I have had a whole host of issues over the course of my life but only recently tied it to gluten. I have not been officially diagnosed. I went gluten free in April and then figured out a few months later that dairy is also a problem for me. I can eat hard cheeses and some skim milk cheese but everything else gives me a hard time. I had D with dairy. Gluten made it explosive - and I had a lot of intestinal rumbling, bloating and pain after I ate too as well as rashes in various places. I started taking supplements and went gluten free and then dairy free too. The one thing to keep in mind - is don't eat anything in your household that could be contaminated. Anything where a knife could have touched bread and then touched the product is dangerous. For me it was relish, butter, mayonaise, jelly, peanut butter, etc. And you can't use the toaster if it has had grain products in it. There are a lot of nuances to learn. Good luck on your journey. You have lots of friends here and the moderators are smart, wise people.

DeannaM · October 28, 2022

Just came home from the hospital again…electrolytes are out of whack….my sodium is low again….and I eat lots of salt…

and drink electrolyte drinks every day….I was diagnosed my years ago with celiac disease….is this a common problem because of problems with absorbing nutrients ?

plumbago · October 28, 2022

I'm not sure about that @DeannaM. What diagnosis did they give you in the hospital? How low was your sodium? Is your kidney function ok?

DeannaM · October 28, 2022

Pretty low…gave me iv…it seems that most times I have been hospitalized ,they say I have low salt….I drink salted drinks ,pumpkin seeds,even potato chips….that is why I’m thinking im not absorbing minerals properly….just curious ….I can’t be the only one….Thanks

DeannaM · October 28, 2022

On 10/28/2022 at 1:41 AM, plumbago said:

I'm not sure about that @DeannaM. What diagnosis did they give you in the hospital? How low was your sodium? Is your kidney function ok?

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My kidney urea was a bit high..So they put me on IV..just seems to to be strange to always be so low in sodium when I drink gator ade or pedilite every day…plus salty snacks…🤷🏼‍♀️

trents · October 28, 2022

Are you a celiac, DeannaM and if so are you diligent about eating gluten-free?

DeannaM · October 28, 2022

On 10/28/2022 at 4:54 AM, trents said:

Are you a celiac, DeannaM and if so are you diligent about eating gluten-free?

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Yes Trent…I am…I really try to be careful….packaging is tricky…was diagnosed by chance,when I was 40…

I was sick most of my life …I’m in my late 60s now… lots of celiacs in my family….I tell my sibling there is a chance for it …we have so many auto immune things…

I really wonder if I’m being exposed somehow for my sodium is so out of whack…

just hoping to find some answers …Deanna😉

Scott Adams · October 28, 2022

@DeannaM, it's possible your issue could be celiac disease related, if you are somehow getting trace amounts of gluten in your diet on a regular basis, for example if you eat outside your home regularly at restaurants or at the homes of non-celiacs. Definitely follow up with your doctor about this, and make sure your kidney function is good, but also re-examine your diet to make sure it is 100% gluten-free. You may also ask your doctor to do another celiac disease panel on you which could show elevated antibody levels if you are getting gluten in your diet.

plumbago · October 28, 2022

On 10/28/2022 at 4:21 PM, DeannaM said:

I really wonder if I’m being exposed somehow for my sodium is so out of whack…

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Can I ask again what diagnosis you left with when you were discharged from the hospital?

DeannaM · October 29, 2022

On 10/28/2022 at 8:56 PM, plumbago said:

Can I ask again what diagnosis you left with when you were discharged from the hospital?

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They said my sodium is very low….no real reason… I told the doctor salt capsules make me vomit, within 10 mins of taking them…,I asked if I was caused by getting glutenized…she didn’t know… so again ..,gave me sodium chloride …. Again I emptied my stomach….🤮

just tired of this ….thanks….and curious if this happens anyone else?

trents · October 29, 2022

Causes for hyponatremia: https://www.mayoclinic.org/diseases-conditions/hyponatremia/symptoms-causes/syc-20373711

plumbago · October 29, 2022

Thanks @DeannaM. No, it hasn't happened to me, and if it's a complication of celiac disease, I haven't heard it expressed much on these boards. However, if you are vomiting regularly, that could be a big contributor to electrolyte abnormalities including low sodium. I'm not sure what level your sodium was, how severe was the hyponatremia, but it sounds like it would be good to have that worked out by your doctors. It's frustrating that you left the hospital without a firmer plan from your doctors to guide you to an answer.

Posterboy · October 29, 2022

On 10/29/2022 at 12:36 AM, DeannaM said:

They said my sodium is very low….no real reason… I told the doctor salt capsules make me vomit, within 10 mins of taking them…,I asked if I was caused by getting glutenized…she didn’t know… so again ..,gave me sodium chloride …. Again I emptied my stomach….🤮

just tired of this ….thanks….and curious if this happens anyone else?

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DeannaM,

I don't have much time tonight.....nor this weekend (I am attending an online theoconference) but you deserve a good answer to your question.

(My following messages are not currently working) So I might not know when you respond .......so if you need a quicker (more detailed response) you can always PM me......but I also reccommenad @knitty kittyon this site she is the Thiamine Queen! on this site and I mean that as a compliment! and she will probably been on here sooner than me and she will back me up on you having a Thiamine issue....

As you already know you have a serious medical probblem!!!

I have been you.....electrolyte abnormalities are tied to Low Magnesium and Low Thiamine!!!

It is called Refeeding Sydnrome but is usually not recognized in people who don't drink.....but happens more than doctors realize!!!! because they (doctors) dont' study Nutrition and/or Vitamins and Minerals much these days!

See this research about it (Refeeding Syndrome) 30+ years old (I am trying to be nice) it has been more than 38 years since this was known and the doctor's still don't know about it sadly!

Entitled "Hypokalemia, Hypophosphatemia, Hyponatremia, and Hypocalcemia are Predictors of Clinical Hypomagnesemia" ......I paraphased the title so it read easier....

https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/604813

If you are a diabetic you are more prone to develop Refeeding Syndrome with electrolyte abnormalities being a key (Classic) sign you have developed Refeeing Syndrome....

If your are allergic to certain Antibiotics (Like I am) this can also cause it...

See this researcha about it entitled "Hypomagnesemia associated with hypokalemia, hyponatremia and metabolic alkalosis. Possible complication of gentamycin therapy]"

https://pubmed.ncbi.nlm.nih.gov/1340968/

I wrote a Posterboy blog post about how and why a "Celiac in Crisis" develops Refeeding Syndrome.....

Maybe it will help you too read it!

I also reccommend Knitty Kitty's blog post on Thiamine, Thiamine, Thiamine....

Here is great article the need for Doctor's today to "Awaken" to the issues a Thiamine deficiency causes today!

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

If I was you.....I would RUN not walk to get you some Magnesium Citrate as either the ionic powder Natural Calm and/or Magngesium Citrate as a Tablet/or Capsule and the Fat Soluble Benfotamine or use this link as posted by Knitty Kitty to buy this special form of Thiamine as reccomened by the Hormones Matter website and Dr. Derrick Londsdale.

https://www.objectivenutrients.com/products/thiamax/

Benfotiamine as doctor's best (Usually in a blue bottle) is pretty easy to find in most diabetic sections.....so I would try and find it first!

If you can't find Natural Calm (Powdered Mangesium Citrate) easily......in a pinch you can use Epsom Salts (it has a special form of Magnesium) than can be asorbed transdermally...

Both these (Magnsesium and Benfotiamine) should be taken with meals and I would also add a B-Complex to this regimen.......because B-Vitamins deficiency never happen in an uncomplicated way......

They are like Domino's........when one falls......you are low in many other B-Vitamins as well!

And they build like a Crescendo.......B1 takes out B2 which takes B6, which takes out B3 and B9, and B12 etc...

And Magnesium takes out B1aka Thiamine!

If you have a STRESS problem you have B-Vitamin(s) problems and a Magnesium problem!....and probably a Vitamin D problem as well.....which I don't have time to explain tonight.....because Magnesium deficiency and low Vitaind D also goes hand in hand!

See how the Stress builds up when you get low in your Vitamins and Minerals IE.....Poor Nutrition triggers poor health and the doctor's just don't get that today!

See also this blog post where I explain why as a Celiac you should be taking Thiamine for a Season in Time....

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

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

knitty kitty · October 29, 2022

@DeannaM,

I believe you will be interested in this case study of two children, one that drank lots of isotonic drinks (like the Gatorade and Pedialyte you are drinking) and one that had a limited diet due to allergies (and nutritional deficiencies as also occurs in Celiac Disease).

https://www.sciencedirect.com/science/article/abs/pii/S038776040900223X

This case study discusses a patient that was at first diagnosed with hyponatremia....

https://www.koreamed.org/SearchBasic.php?RID=2254611

And another case study of a man with poor absorption who also had hyponatremia.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2426368/?page=1

In all these cases, thiamine Vitamin B1 deficiency was diagnosed.

Doctors don't recognize thiamine deficiency today.

Discuss with your doctor the possibility you have a thiamine deficiency. Thiamine is safe and nontoxic. Because your sodium is so low, medical supervision should be sought to correct your Thiamine deficiency.

Scott Adams · October 29, 2022

Someone in a comment on an article here just mentioned this condition: Food protein-induced enterocolitis syndrome

which I had not heard of before:

https://acaai.org/allergies/allergic-conditions/food/food-protein-induced-enterocolitis-syndrome-fpies/

trents · October 29, 2022

What's scary is that we can add this to the growing list of frequently misdiagnosed medical problems. And this makes me aware of how important it is to both do your own research and to find a doctor who knows how to think outside the box.

margaretiisabel · November 2, 2022

I use Andrew Lessman Essential 1 with CoQ10, plus multiple B plus B12 separate on Home Shopping Club. But I can and have called them direct at 800-332-7799 with any questions you have. They are wonderful to talk to and are very helpful. I sure hope this helps you. When you don’t feel good it’s awful. We all need those wonderful vitamins to support our Diet.

Best Regards.

DeannaM · November 3, 2022

On 10/28/2022 at 4:45 PM, Scott Adams said:

@DeannaM, it's possible your issue could be celiac disease related, if you are somehow getting trace amounts of gluten in your diet on a regular basis, for example if you eat outside your home regularly at restaurants or at the homes of non-celiacs. Definitely follow up with your doctor about this, and make sure your kidney function is good, but also re-examine your diet to make sure it is 100% gluten-free. You may also ask your doctor to do another celiac disease panel on you which could show elevated antibody levels if you are getting gluten in your diet.

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Thank you so much Scott, I really wish they would dig deeper….I will ask again to be sent to a specialist…still waiting since March to see a migraine specialist…🥺