chrisinpa

The only best thing I do is try to find gluten free substitutes.....example....gluten free pizza etc.

9 hours ago, knitty kitty said:

Look at the ingredients.  Thiamine Mononitrate is in that ingredients list. 

OMG.....you're right.  I am going to study and try to remember all that info. you have provided.     From B1 to B12....and different names for each one and how well they are absorbed etc    I had previously learned about the different forms of Magnesium.  Like most people I just assumed that magnesium is magnesium.  Maybe they should come out with a book or movie entitled......."Everything you always wanted to know about all the B vitamins but were afraid to ask".   LOL

Just checked....the Centrum Silver men 50 plus multiple vitamins have Thiamin and lots of other vitamins and minerals.  There are Centrum Silver 50 plus for women also.  If some of the vitamins and minerals listed don't meet the daily recommended requirement you can add to those specific ones with additional extra supplements.

30 minutes ago, knitty kitty said:

Peripheral neuropathy (nerve pain iincluding numbness, tingling, buzzing in the feet or hands) can be caused by deficiencies in several vitamins, not just B 12 Cobalamine.  

Thiamine B 1, Pyridoxine B 6, and Riboflavin B 2, zinc, magnesium and calcium are also needed to work with B12.  With Celiac Disease, the absorption of all the micronutrients are affected.  Supplementing just B12 isn't going to resolve the nerve pain.

Thiamine is the B vitamin that runs out first because it cannot be stored long (2 weeks) and can run out in as little as three days when we're ill.  

Try a B Complex and Benfotiamine, A form of Thiamine shown to promote intestinal healing. Benfotiamine will improve peripheral neuropathy as well.

Thiamine Mononitrate found in most vitamin supplements and enriched foods, (including that Nervive Nerve Relief), is not bioavailable, the body cannot utilize it well.  Thiamine Mononitrate is "shelf-stable" meaning it won't break down when exposed to heat and light.  Thiamine Mononitrate is poorly absorbed, only 30% of the amount on the label will be absorbed, less than that is utilized by the body.  That "shelf-stable" form is difficult for the body to turn into an active form of Thiamine that the body can use.  

Interesting Reading:

The importance of thiamine (vitamin B1) in humans

https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/

https://pubmed.ncbi.nlm.nih.gov/38018774/

https://pubmed.ncbi.nlm.nih.gov/35810577/

https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/

31 minutes ago, knitty kitty said:

Peripheral neuropathy (nerve pain iincluding numbness, tingling, buzzing in the feet or hands) can be caused by deficiencies in several vitamins, not just B 12 Cobalamine.  

Thiamine B 1, Pyridoxine B 6, and Riboflavin B 2, zinc, magnesium and calcium are also needed to work with B12.  With Celiac Disease, the absorption of all the micronutrients are affected.  Supplementing just B12 isn't going to resolve the nerve pain.

Thiamine is the B vitamin that runs out first because it cannot be stored long (2 weeks) and can run out in as little as three days when we're ill.  

Try a B Complex and Benfotiamine, A form of Thiamine shown to promote intestinal healing. Benfotiamine will improve peripheral neuropathy as well.

Thiamine Mononitrate found in most vitamin supplements and enriched foods, (including that Nervive Nerve Relief), is not bioavailable, the body cannot utilize it well.  Thiamine Mononitrate is "shelf-stable" meaning it won't break down when exposed to heat and light.  Thiamine Mononitrate is poorly absorbed, only 30% of the amount on the label will be absorbed, less than that is utilized by the body.  That "shelf-stable" form is difficult for the body to turn into an active form of Thiamine that the body can use.  

Interesting Reading:

The importance of thiamine (vitamin B1) in humans

https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/

https://pubmed.ncbi.nlm.nih.gov/38018774/

https://pubmed.ncbi.nlm.nih.gov/35810577/

https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/

Anong the vitamins and minerals I supplement with on a rotating basis....not all of them everyday except a daily multiple vitamin,  , I'll have to see if my Centrum silver daily vitamin has Thiamine in it.  I was buying the B vitamins separately now I just get the B Complex.   Other than that the small amount of tingling/numbness especially in my right foot supposedly could be caused by something else.....maybe a pinched nerve and the doctor recommended what I think is an EMG test.  I'll still supplement but I may get that test done.  I already had a peripheral blood (flow?) test done which was good.  Apparently a pinched nerve in the lower back could cause it also?

I will add my thanks also.  My list of supplements are very similar also..  

44 minutes ago, DonnaNM said:

Thanks for that information.  I'll check it out.

You betcha!

20 minutes ago, chrisinpa said:

BTW.....I am going to check out a new med being advertised,,,,,Nervive.

Nervive Nerve Relief Review: Is It Safe and Effective? - WellnessVerge

2 minutes ago, chrisinpa said:

Bingo.  I guess we all do what we can with what we know and hope for the best.     Would be nice if the human body had a reset button and we could put in a new operating system.   LOL

BTW.....I am going to check out a new med being advertised,,,,,Nervive.

Bingo.  I guess we all do what we can with what we know and hope for the best.     Would be nice if the human body had a reset button and we could put in a new operating system.   LOL

41 minutes ago, DonnaNM said:

After understanding all the deficiencies one can get from having Celiac disease, I take B12, but still have nerve pain.  It's frustrating. 

BTW.....Other than vitamin D supplementation,  it's amazing how much vitamin D levels in the body can be increased by even short periods of sunlight exposure.    I have to ask if there is a limit to how much vitamin D would be harmful?   Apparently there are some supplements that will be stored in the body and above a certain level can be toxic.....and some vitamins/minerals that are disposed of by what the body doesn't need or use.

Interesting observation of the possible association of a symptom that can be affected either positively or negatively by minerals or nutrients.  I have some numbness and tingling on my right foot apparently the result of neuropathy.  From what I've read there can be a number of causes and vitamin B12 deficiency and supplementation has helped some people. It wIll be interesting to see what Scott has to say.  In my opinion if something makes something seem better keep doing it or vice versa. The big question is "why".

13 minutes ago, trents said:

Or at least with a form of gluten that did not cause reaction. If that could be accomplished then I would assume the same could be done for the barley, rye and those cultivars of oats that contain gluten.

Yep...we'll keep our fingers crossed.   🙂

I guess that is the ultimate goal...a new strain of gluten free wheat.  That  would still leave barley and maybe (oats?) (etc?) with gluten.

8 minutes ago, ShariW said:

My understanding is that ancient grains that are wheat-related are still to be avoided by all of us with gluten sensitivity. These include Einkorn, Emmer, Spelt and Kamut.

Thanks much!

After reading all this scientific research info.,  it is interesting and I am impressed with the research thus far although I must confess that with some of that info. my eyes were glazing over. :-).    One positive thing I can say at this point, I can buy gluten free pizza's in the grocery store that aren't bad.  

Was reading that a certain probiotic bacteria might be able to break down gluten.....but the real solution might be to develop a new strain of  wheat etc that is gluten free?      And..... is it true that in ancient times wheat etc. didn't have gluten until the advent of the new (GMO)? strains. of wheat etc? 

5 hours ago, JoJoColes said:

❤️

I guess we're all doing the best we can with what we know.  Maybe one day there will be a cure of some kind.    Stay tuned!

Just now, chrisinpa said:

I'm not an expert but if it were me I would return to gluten for a short period of time and see if the symptoms return.  Apparently there is just a difference between gluten intolerance and Celiac where antibodies attack your system...a form of autoimmune disease.  One thing I believe...gluten isn't good for anyone....hard to digest.

BTW...it's possible that Scott Adams might weigh in on this one.

2 hours ago, Anne65 said:

I was tested after 50, and years of enduring irritable bowel disease,  but this time it had already been suggested that gluten intolerance was the culprit. I had removed all gluten from my diet for 6 weeks. The symptoms were better and my blood tests (no scope) we negative. Now I  read I should have kept on eating gluten even though I had a pain free life?

I'm not an expert but if it were me I would return to gluten for a short period of time and see if the symptoms return.  Apparently there is just a difference between gluten intolerance and Celiac where antibodies attack your system...a form of autoimmune disease.  One thing I believe...gluten isn't good for anyone....hard to digest.

3 hours ago, JoJoColes said:

70 and diagnosed with celiac disease   Diagnosed with discord lupus and skin lupus three years prior. I have had stomach issues since the birth of my first child in 1978. Constipation, bloating, swelling, always gassy. I was told to eat more roughage and drink more water. My blood test numbers were so high there was no need for biopsy. My endocrinologist told if you have one autoimmune disease you probably have two.  

WOW.......all I can say is keep on hangin on.

3 minutes ago, trents said:

Probably more than have even heard of "celiac disease".

True......I'll give you that one.   

16 hours ago, trents said:

It's usually better to use the term "gluten intolerance" rather than celiac disease when talking to the uninitiated about these things. Gluten intolerance covers both celiac disease and NCGS (Non Celiac Gluten Sensitivity or just gluten sensitivity for short). 

True......but then I wonder how many people even know what gluten is and where it comes from etc.

4 hours ago, trents said:

That's why we have the term "silent celiac". And it might not be a stretch to say that most of us have fit into that category. But when you see those early symptoms in friends or family and try to encourage them to get tested, you usually get blown off.

I had that same thought......if a friend has some symptoms that seem familiar to me I would certainly mention that possibility.  I can imagine if you mentioned about getting tested to some people you might have them give you that "deer in the headlights" look.  I do know that with some people you even mention Celiac and they have no clue.    One good thing...I keep seeing an increasing amount of foods in the grocery store labeled "Gluten Free".   🙂

22 minutes ago, Russ H said:

Data from NHS England shows that most people are diagnosed between the ages of 40 and 60, with the mean age of diagnosis 45.

For those diagnosed later in life, I wonder at what age the condition actually begins? Blood screening suggests that most people with the condition are not diagnosed, and that is likely because they have no symptoms or because their symptoms are non-specific and unrecognised.

I had clear symptoms stretching back more than 4 decades before I was diagnosed. Perhaps many people have the condition for decades before something leads to testing and diagnosis.

Absolutely.  As I had mentioned before,  if it were feasible and/or possible,  perhaps diagnosis of children by doctors and/or pediatricians for the antibodies would be very beneficial.  Perhaps it could be considered a silent disease doing it's damage until really serious symptoms occur?