Terrible Neurological Symptoms

[Jackie Garrett]

  On 4/5/2022 at 6:45 PM, Scott Adams said:

As far as I know @HectorConvector hasn't been diagnosed with lactic acidosis, and before altering your diet to treat something you haven't been diagnosed with, it would be best to first get tested for it. According to this article "Lactic acidosis is diagnosed through a fasting blood test."

https://www.healthline.com/health/lactic-acidosis#diagnosis

@Jackie Garrett have you been tested for lactic acidosis and diagnosed with it? I have no doubt that the diet seems to have helped you, but there is a difference between being self-diagnosed and officially diagnosed with something. Also, it seems that due to your personal lactic acidosis condition, you now seem to see that as a common in others here on a celiac disease forum, which isn't necessarily the case. Lactic acidosis is a rare, and potentially fatal condition, if left untreated.

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Lactose intolerance affects many, many people I never connected it to my symptoms, it was only when I increased my milk intake that I noticed my symptoms and pain/ inflammation got really bad it was only then that I thought what have I been doing lately that’s different and it was increasing the milk, so I removed Dairy and others things that had Lactic/ Citric acid in and everything got better, no Dr. found this out, I was never offered a Anion Test, I only ever had a standard blood test in previous years, I hadn’t heard of an Anion gap blood test until recently. But by removing the acids I got well, and because Hector has some symptoms similar to mine and the Drs. don’t seem to have an answer for him at the moment, I just thought maybe he could start removing the things contain Lactose/ Lactic acid just to see if it helps him if nothing else is working, it helped me, I know I would still be having so many symptoms if I hadn’t done this, like I said before this may or may not be Hectors case, it’s just something to consider if he’s not getting better.

[trents]

  On 4/6/2022 at 5:41 AM, Jackie Garrett said:

Lactose intolerance affects many, many people I never connected it to my symptoms, it was only when I increased my milk intake that I noticed my symptoms and pain/ inflammation got really bad it was only then that I thought what have I been doing lately that’s different and it was increasing the milk, so I removed Dairy and others things that had Lactic/ Citric acid in and everything got better, no Dr. found this out, I was never offered a Anion Test, I only ever had a standard blood test in previous years, I hadn’t heard of an Anion gap blood test until recently. But by removing the acids I got well, and because Hector has some symptoms similar to mine and the Drs. don’t seem to have an answer for him at the moment, I just thought maybe he could start removing the things contain Lactose/ Lactic acid just to see if it helps him if nothing else is working, it helped me, I know I would still be having so many symptoms if I hadn’t done this, like I said before this may or may not be Hectors case, it’s just something to consider if he’s not getting better.

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Jackie, how do you know it's not the protein in dairy that bothers you instead of the sugar in milk (lactose)? Have you tried lactose free milk?

[Jackie Garrett]

  On 4/6/2022 at 6:00 AM, trents said:

Jackie, how do you know it's not the protein in dairy that bothers you instead of the sugar in milk (lactose)? Have you tried lactose free milk?

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Yes Trents possibly both ?? I know Lactic acid affects me with nerve pain, I am very dubious to try Lactose free milk as they add something to it, and it is very sweet, I am ok with my Almond milk now,  I am waiting for an appointment with an immunologist  to tell them what happened to me and how I improved my health, as I think It would be good for research purposes and also for Drs. to maybe question Lactose intolerance to more of their patients, and yes Trent’s possibly Protein intolerance ?? by what I posted a few days ago, it did get me thinking, I am waiting for an  appointment,  I will let you know the outcome. In the meantime I am looking more into Protein intolerance which is something I haven’t heard of until recently, very interesting !!!

[Jackie Garrett]

  On 4/6/2022 at 6:00 AM, trents said:

Jackie, how do you know it's not the protein in dairy that bothers you instead of the sugar in milk (lactose)? Have you tried lactose free milk?

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Lactose free milk doesn’t appeal to me, I think they add something to it, I’d rather avoid it. Yes Trent’s it could be the proteins too. The article I came across which I posted a few days ago, got me thinking about certain Proteins and was wondering if in some of us our bodies can’t process them too well, either because have we too much in our system through eating/ drinking too many things that have it in, or did we start off with a too much when we were born or are some us just plain intolerant, or do we need a good detox for a while, or are us sensitive people missing an enzyme, Are we designed to eat saturated fats from Animals, maybe tiny amounts, who knows ?  ?? I  would love to find out the answer.

[trents]

I think all they do is break down the lactose in the milk buy adding lactase. The enzyme lactase, which breaks down lactose, is produced by the epithelial cells that line our gut. But some people don't make enough of it to break down lactose well. Lactose cannot be absorbed by the gut so it must be broken down into simpler sugars that can be. When it isn't broken down it causes GI distress. Lactose free milk tastes sweeter because the lactose is broken down into simpler sugars, sugars that taste sweeter in the mouth and are easily digested.  So, there is nothing harmful in lactose free milk. You can buy a product called Lactaid that breaks down the lactose when you put some drops in your milk. 

Edited April 6, 2022 by trents

[Jackie Garrett]

  On 4/6/2022 at 1:50 PM, trents said:

I think all they add is lactase, the enzyme produced naturally by lactobacillus, a naturally occurring bacteria in the gut that breaks down the lactose (the sugar in the milk). Lactose cannot be absorbed by the gut so it must be broken down into simpler sugars that can be. The milk tastes sweeter because the lactose is broken down into simpler sugars, sugars that taste sweeter in the mouth and are easily digested. People who are lactose intolerant don't have enough lactobacillus in their gut to produce sufficient lactase. At least that's my understanding. So, there is nothing harmful in lactose free milk. You can buy a product called Lactaid that breaks down the lactose when you put some in your milk. 

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Thanks Trent’s for that explanation. I have been very sceptical to try anything like that, I suppose with what effect milk has had on my health, I know people take these tablets after they have consumed  Dairy, but I am very wary of these things, I just avoid it, which is a shame as nothing tastes as good as Dairy, Cheese is a big thing to give up, I do miss it, I will try it again and see how I go, if I get pain or any of my other symptoms then I will know I can’t have it. Are you ok with Dairy or is it just Gluten ?

[Wheatwacked]

  On 4/6/2022 at 5:41 AM, Jackie Garrett said:

I increased my milk intake that I noticed my symptoms and pain/ inflammation got really bad it was only then that I thought what have I been doing lately that’s different and it was increasing the milk,

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When you increased milk intake you also increased your intake of omega 6 fatty acids. Omega 6 increases inflammation and clotting. That's its job. Have you tried 100% Grass fed dairy or meat? The supplements used to increase milk in dairy and to fatten beef raises omega 6 content. Fortunately that is not the case with plant based foods. The issue is not that milk and red meat are intrinsically bad, it is how we raise them. We are after all omnivores.

Adding the antioxidant vitamins C and E as well as homocysteine-lowering B6, B12, folate and choline should help keep blood thin. 

 Antioxidant Vitamins Block Homocysteine's Acute Toxic Effects

  Quote

our meta-analysis demonstrated that high consumption of  n-3 PUFA decreases plasma Hcy concentration   https://www.hindawi.com/journals/tswj/2013/931626/

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The best way to increase lactobacillus is to eat naturally fermented foods (not vinegar pickled) like unpasteurized pickles, sauerkraut and yogurt and plenty of fiber.

[Jackie Garrett]

  On 4/6/2022 at 3:03 PM, Wheatwacked said:

When you increased milk intake you also increased your intake of omega 6 fatty acids. Omega 6 increases inflammation and clotting. That's its job. Have you tried 100% Grass fed dairy or meat? The supplements used to increase milk in dairy and to fatten beef raises omega 6 content. Fortunately that is not the case with plant based foods. The issue is not that milk and red meat are intrinsically bad, it is how we raise them. We are after all omnivores.

Adding the antioxidant vitamins C and E as well as homocysteine-lowering B6, B12, folate and choline should help keep blood thin. 

 Antioxidant Vitamins Block Homocysteine's Acute Toxic Effects

The best way to increase lactobacillus is to eat naturally fermented foods (not vinegar pickled) like unpasteurized pickles, sauerkraut and yogurt and plenty of fiber.

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Thanks Wheatwacked for info, I do eat Red meat, I have cut it down though I love all kinds of meat, but I do think we have to be careful how often and how much we eat as i believe it can increase our histamine levels inside of us,( my opinion) The only vitamin I take is a liquid vitamin D I try and get my vitamins from food I feel ok so I don’t think I’m lacking in anything at the moment, I try and avoid preservatives where I can,  I make sure I eat fruit, lots of veg, potatoes, meat, Salmon, Mackeral no Caffeine, drink water mainly herbal teas and vary my diet as much as I can, because I feel well I don’t want to change things. Things that do have higher histamine in, in my opinion, I really do think we have to limit. It has become so easy today to buy food that is full of things that the body is not designed  to have, we all need to look at what we are consuming and that very much includes drinks, high histamine drinks !!! I will take a look at what you have sent through. Thankyou.

[Geoff01]

  On 3/30/2022 at 1:26 AM, HectorConvector said:

I had an MRI scan last year which didn't show any signs of MS. I'm currently seeing a neurologist who is lining up another MRI scan including the spine as well as head.

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I’ve been struggling with peripheral neuropathy for 30 years but no doctor could work out the cause. Not too bad but has got a lot worse in the last ten years. Now I have significant numbness below the knees, esp in my feet and some burning sensations when in bed.  I’m 59 and very active but didn’t realise that I had gluten intolerance until I was about 50.  I started getting a severe gut reaction to gluten. My sister was diagnosed celiac at age 16, 1981. I got a DNA test 9 yrs ago and the results came back HLA DQ2.2. 9 yrs ago I tried a gluten free diet for 6 months then did a “gluten test” with approximately 3 slices of bread. I was terribly Ill for 10 days (stomach pain, diarrhoea, constipation, headaches, chills, brain fog, essentially bedridden) and I’ve been gluten-free ever since. I’ve noticed that if I get glutened by accident and normally cross contamination I lose my sense of balance and essentially get gluten ataxia as well as stomach pain etc.  I saw a neurologist some years ago and explained this to him. He ordered a brain MRI which showed I have a lot of UBOs ( essentially holes) at each end of the sinus in my cerebral cortex similar to an extreme migraine patient or an 80 yr old. Also damage to the perjinkie cells in my cerebellum which control balance.

Understandingly, I am now much more careful not to get glutened. I can’t fix the damage but perhaps I can slow or halt it. As Dr Hajivassileu has written, gluten intolerance is largely a neurological problem, of which a small percentage are classified as Celiac. 

[Geoff01]

  On 11/21/2021 at 1:26 AM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

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[Geoff01]

  On 11/21/2021 at 1:26 AM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

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Hi Hector, please see my other reply to you. Most writers note that gluten only occurs in wheat rye and barley.  This is not true or only half of the story.
 

Corn has zein, oats have ovenin and rice has something similar.  These are all proteins that do the same job as gluten, discourage animals from over grazing cereal seeds. Most Humans have evolved to manage these poisons. WE HAVE NOT! We are the last Hunter gatherers if you like. Additionally, beans and peas (all legumes) have lectins, proteins that are structurally similar to gluten. I believe that lactose from milk is similar or can aggravate already damaged and irritable\open intestines.  I react to all of them and have largely cut them from my diet. It’s not easy but it’s the only way. 

If you are eating processed, store bought “gluten free” food the you will find that it’s full of oats, corn, rice and legumes.  The gluten free manufacturers are not keeping up with the science and many celiacs only react to gluten and glutenin. This may be your problem. It may also be the problem for refractory celiacs, of which you may be one.

Good luck. It’s not easy but it’s the only way.  I can refer you to scientific papers if that will help.

  On 11/21/2021 at 1:26 AM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

Expand Quote  

Hi Hector, please see my other reply to you. Most writers note that gluten only occurs in wheat rye and barley.  This is not true or only half of the story.
 

Corn has zein, oats have ovenin and rice has something similar.  These are all proteins that do the same job as gluten, discourage animals from over grazing cereal seeds. Most Humans have evolved to manage these poisons. WE HAVE NOT! We are the last Hunter gatherers if you like. Additionally, beans and peas (all legumes) have lectins, proteins that are structurally similar to gluten. I believe that lactose from milk is similar or can aggravate already damaged and irritable\open intestines.  I react to all of them and have largely cut them from my diet. It’s not easy but it’s the only way. 

If you are eating processed, store bought “gluten free” food the you will find that it’s full of oats, corn, rice and legumes.  The gluten free manufacturers are not keeping up with the science and many celiacs only react to gluten and glutenin. This may be your problem. It may also be the problem for refractory celiacs, of which you may be one.

Good luck. It’s not easy but it’s the only way.  I can refer you to scientific papers if that will help.

[HectorConvector]

  On 4/6/2022 at 3:27 PM, Jackie Garrett said:

Thanks Wheatwacked for info, I do eat Red meat, I have cut it down though I love all kinds of meat, but I do think we have to be careful how often and how much we eat as i believe it can increase our histamine levels inside of us,( my opinion) The only vitamin I take is a liquid vitamin D I try and get my vitamins from food I feel ok so I don’t think I’m lacking in anything at the moment, I try and avoid preservatives where I can,  I make sure I eat fruit, lots of veg, potatoes, meat, Salmon, Mackeral no Caffeine, drink water mainly herbal teas and vary my diet as much as I can, because I feel well I don’t want to change things. Things that do have higher histamine in, in my opinion, I really do think we have to limit. It has become so easy today to buy food that is full of things that the body is not designed  to have, we all need

Expand Quote  

 

  On 4/6/2022 at 3:56 PM, Geoff01 said:

 

Corn has zein, oats have ovenin and rice has something similar.  These are all proteins that do the same job as gluten, discourage animals from over grazing cereal seeds. Most Humans have evolved to manage these poisons. WE HAVE NOT! We are the last Hunter gatherers if you like. Additionally, beans and peas (all legumes) have lectins, proteins that are structurally similar to gluten. I believe that lactose from milk is similar or can aggravate already damaged and irritable\open intestines.  I react to all of them and have largely cut them from my diet. It’s not easy but it’s the only way. 

If you are eating processed, store bought “gluten free” food the you will find that it’s full of oats, corn, rice and legumes.  The gluten free manufacturers are not keeping up with the science and many celiacs only react to gluten and glutenin. This may be your problem. It may also be the problem for refractory celiacs, of which you may be one.

Good luck. It’s not easy but it’s the only way.  I can refer you to scientific papers if that will help.

Expand Quote  

Well that is interesting. Yeah I generally eat my own prepared food now so I know what's going in it. Mostly fish, meat, vegetables and some fruit. I'm taking cheese out of the diet today to see if that was causing problems but I have to replace it with something calorific though, so am using peanut butter, but that presumably would have lectins in it, which isn't good possibly.  I don't eat rice or oats really as I don't eat much carbs. Wouldn't mind seeing the scientific papers.

[Wheatwacked]

How to Remove lectins from Beans and legumes

 

[Scott Adams]

  On 4/6/2022 at 5:41 AM, Jackie Garrett said:

Lactose intolerance affects many, many people I never connected it to my symptoms, it was only when I increased my milk intake that I noticed my symptoms and pain/ inflammation got really bad it was only then that I thought what have I been doing lately that’s different and it was increasing the milk, so I removed Dairy and others things that had Lactic/ Citric acid in and everything got better, no Dr. found this out, I was never offered a Anion Test, I only ever had a standard blood test in previous years, I hadn’t heard of an Anion gap blood test until recently. But by removing the acids I got well, and because Hector has some symptoms similar to mine and the Drs. don’t seem to have an answer for him at the moment, I just thought maybe he could start removing the things contain Lactose/ Lactic acid just to see if it helps him if nothing else is working, it helped me, I know I would still be having so many symptoms if I hadn’t done this, like I said before this may or may not be Hectors case, it’s just something to consider if he’s not getting better.

Expand Quote  

I just want to mention that lactic acidosis and lactose intolerance are two very different things, and you often switch back and forth when describing them, and when you give advice to others. You've not been diagnosed with either, so it's really hard to know for sure exactly why cutting out dairy is help you, but like @trents mentioned, I strongly suspect you have lactose intolerance, rather than lactic acidosis. 

In any case, as was mentioned, adding the missing enzyme you may lack via Lactaid might give you an answer. I do think you should try figure out exactly what your issues are before offering specific advice, and especially before suggesting that others might have conditions like lactic acidosis.

[knitty kitty]

  On 4/6/2022 at 3:31 PM, Geoff01 said:

I’ve been struggling with peripheral neuropathy for 30 years but no doctor could work out the cause. Not too bad but has got a lot worse in the last ten years. Now I have significant numbness below the knees, esp in my feet and some burning sensations when in bed.  I’m 59 and very active but didn’t realise that I had gluten intolerance until I was about 50.  I started getting a severe gut reaction to gluten. My sister was diagnosed celiac at age 16, 1981. I got a DNA test 9 yrs ago and the results came back HLA DQ2.2. 9 yrs ago I tried a gluten free diet for 6 months then did a “gluten test” with approximately 3 slices of bread. I was terribly Ill for 10 days (stomach pain, diarrhoea, constipation, headaches, chills, brain fog, essentially bedridden) and I’ve been gluten-free ever since. I’ve noticed that if I get glutened by accident and normally cross contamination I lose my sense of balance and essentially get gluten ataxia as well as stomach pain etc.  I saw a neurologist some years ago and explained this to him. He ordered a brain MRI which showed I have a lot of UBOs ( essentially holes) at each end of the sinus in my cerebral cortex similar to an extreme migraine patient or an 80 yr old. Also damage to the perjinkie cells in my cerebellum which control balance.

Understandingly, I am now much more careful not to get glutened. I can’t fix the damage but perhaps I can slow or halt it. As Dr Hajivassileu has written, gluten intolerance is largely a neurological problem, of which a small percentage are classified as Celiac. 

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I'm curious about your UBO's on your MRI.  Dr. H.'s article talks about ataxia and MRI changes, but doesn't mention thiamine deficiency.  Thiamine deficiency can cause bright spots on MRIs.  Just curious if your bright spots might be caused by thiamine deficiency as well.  

 

Vestibular signs of thiamine deficiency during the early phase of suspected Wernicke encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6082353/

 

Thiamine Deficiency Increases Intrinsic Excitability of Mouse Cerebellar Purkinje Cells

https://pubmed.ncbi.nlm.nih.gov/33098550/

 

MR Imaging Findings in Alcoholic and Nonalcoholic Acute Wernicke's Encephalopathy: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4094710/

 

Diagnosis and management of progressive ataxia in adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6585307/

 

 

[HectorConvector]

FWIW my upcoming MRI scan in June will be my second, on my first there was no sign of any abnormalities (unlike in Geoff's case). Of course there could still be (or have been) thiamine deficiency, so I'm keeping the supplement going to see if any improvements occur.

[Jackie Garrett]

  On 4/6/2022 at 6:33 PM, Scott Adams said:

I just want to mention that lactic acidosis and lactose intolerance are two very different things, and you often switch back and forth when describing them, and when you give advice to others. You've not been diagnosed with either, so it's really hard to know for sure exactly why cutting out dairy is help you, but like @trents mentioned, I strongly suspect you have lactose intolerance, rather than lactic acidosis. 

In any case, as was mentioned, adding the missing enzyme you may lack via Lactaid might give you an answer. I do think you should try figure out exactly what your issues are before offering specific advice, and especially before suggesting that others might have conditions like lactic acidosis.

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https://pubmed.ncbi.nlm.nih.gov/10230483/ 

Scott, I know what happened to me. I am now well.

[knitty kitty]

  On 4/6/2022 at 10:13 PM, Jackie Garrett said:

https://pubmed.ncbi.nlm.nih.gov/10230483/ 

Scott, I know what happened to me. I am now well.

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That article says of the infant "Her mother attempted to reintroduce cow milk on the 59th and 64th day, but this was immediately followed by allergic manifestations which supported the diagnosis of cow milk allergy."

Cow Milk allergy is an allergic reaction to the protein casein in milk.  

NOT because the milk had lactic acid, but because of the allergic immune response to the Casein.

[Geoff01]

  On 4/6/2022 at 4:33 PM, HectorConvector said:

 

Well that is interesting. Yeah I generally eat my own prepared food now so I know what's going in it. Mostly fish, meat, vegetables and some fruit. I'm taking cheese out of the diet today to see if that was causing problems but I have to replace it with something calorific though, so am using peanut butter, but that presumably would have lectins in it, which isn't good possibly.  I don't eat rice or oats really as I don't eat much carbs. Wouldn't mind seeing the scientific papers.

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I love cheese and don’t have a problem with it. I believe that the fermentation process for strong cheeses destroys the protein that is the problem. I don’t drink much milk. 

[trents]

  On 4/7/2022 at 2:41 AM, Geoff01 said:

I love cheese and don’t have a problem with it. I believe that the fermentation process for strong cheeses destroys the protein that is the problem. I don’t drink much milk. 

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I think the aging process can do that, at least to some extent. How much is converted may vary from aged cheese to age cheese. By the way, this happens with Buttermilk to some extent.

[Jackie Garrett]

  On 4/6/2022 at 11:52 PM, knitty kitty said:

That article says of the infant "Her mother attempted to reintroduce cow milk on the 59th and 64th day, but this was immediately followed by allergic manifestations which supported the diagnosis of cow milk allergy."

Cow Milk allergy is an allergic reaction to the protein casein in milk.  

NOT because the milk had lactic acid, but because of the allergic immune response to the Casein.

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I know I can not have milk and because I didn’t realise this for many many years, having different symptoms, and found out myself that milk was the underlying cause, definitely Lactose affected me, I know it made my body become acidic I would react with anything acidic, no test standard blood test ever picked this up, knowing what I know now I would have requested an Anion gap test that may have picked things up, when I realised milk was my problem I removed it and in time symptoms started to go, some fairly quickly, I was very bad on my meds,( I didn’t know at that time I was on them that Lactose/milk was a problem) they contained lactose so when I found out about my intolerance to milk that all made sense, I believe the Lactose had made my body acidic, and yes Casein can too, I know how bad I was on the meds it seemed to heighten my symptoms and they contained lactose so in my case I know how Lactose alone affected me and caused a lot of inflammation , a histamine reaction, which I believe causes more acid release in the body leading to higher acid levels leading to possible Acidosis that can cause various different symptoms in our bodies and one of them being pain, the histamine reaction from the build of too many acids, from the Lactose and yes, protein reaction too in some cases, I really believe both cause a histamine reaction in some of our bodies, I removed milk and become well, I keep higher acid intake low. Because I got myself well and in all the years no one else had found the answers, the only way I got well is how I’ve worked it out myself,  so I replied to Hector and others as  I thought it helped me it may help some one else who is struggling, and if they also are not getting the answers to their health problems to pass on what had worked for me,  and yes I believe lactose can cause higher acid levels in the body as much as Casein, because of what Lactose alone had done to me it heightened my symptoms. And as Hector was getting symptoms similar to me I thought I would mention it to see if it helps him it’s worth a try whether he chooses to or not is his Choice, it may be the answer or it may not. 

[Jackie Garrett]

  On 4/6/2022 at 11:52 PM, knitty kitty said:

That article says of the infant "Her mother attempted to reintroduce cow milk on the 59th and 64th day, but this was immediately followed by allergic manifestations which supported the diagnosis of cow milk allergy."

Cow Milk allergy is an allergic reaction to the protein casein in milk.  

NOT because the milk had lactic acid, but because of the allergic immune response to the Casein.

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I believe the lactose intolerance has the same effect on the body as casein intolerance from milk and then histamine reactions occur which causes an acidic environment and then  in SOME cases progressing onto Acidosis or the body just being in an  higher acidic state like I believe like mine was, maybe only a slight change in acid levels is just enough to tip our healths over ??? Because I went on for years never connecting my symptoms to milk I believe my body became acidic, a long time of build up, I then had my Heart attack, so was that a another clue ?? what happened to me and how I recovered made all logical sense to me. Maybe more research is needed on how  raised acid levels,  and at what point these levels starts to affect our healths needs more research, and look into what foods and drinks causes histamine   release, Liberators, I know this is becoming more talked about now which is very good news, and will solve a lot of peoples problems, I wish this was talked about years ago, maybe it wasn’t recognised,  What  I question is if milk is doing that to our bodies should we really ingest it regularly, I know what I think !! 

 

[HectorConvector]

  On 4/7/2022 at 2:41 AM, Geoff01 said:

I love cheese and don’t have a problem with it. I believe that the fermentation process for strong cheeses destroys the protein that is the problem. I don’t drink much milk. 

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 I've never noticed problems with it myself but am taking it out to begin with owning to what Jackie said about the lactic/lactose relationship, in case it's a hidden cause of the problems. So, I'm trying one thing at a time to begin with before making any completely drastic changes to my diet. 

Still taking 400mg of thiamine a day.

[Jackie Garrett]

  On 4/7/2022 at 12:29 PM, HectorConvector said:

 I've never noticed problems with it myself but am taking it out to begin with owning to what Jackie said about the lactic/lactose relationship, in case it's a hidden cause of the problems. So, I'm trying one thing at a time to begin with before making any completely drastic changes to my diet. 

Still taking 400mg of thiamine a day.

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🤞🤞

[Scott Adams]

  On 4/7/2022 at 10:47 AM, Jackie Garrett said:

I believe the lactose intolerance has the same effect on the body as casein intolerance from milk and then histamine reactions occur which causes an acidic environment and then  in SOME cases progressing onto Acidosis or the body just being in an  higher acidic state like I believe like mine was, maybe only a slight change in acid levels is just enough to tip our healths over ??? Because I went on for years never connecting my symptoms to milk I believe my body became acidic, a long time of build up, I then had my Heart attack, so was that a another clue ?? what happened to me and how I recovered made all logical sense to me. Maybe more research is needed on how  raised acid levels,  and at what point these levels starts to affect our healths needs more research, and look into what foods and drinks causes histamine   release, Liberators, I know this is becoming more talked about now which is very good news, and will solve a lot of peoples problems, I wish this was talked about years ago, maybe it wasn’t recognised,  What  I question is if milk is doing that to our bodies should we really ingest it regularly, I know what I think !! 

 

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You were never tested for any of what you are claiming here, but are throwing around lots of ideas like "my body became acidic" and that milk caused this condition, as though it is generally accepted by doctors and science, but I can assure you that the alkaline diet is currently looked at as psuedoscience by the scientific community:

https://www.webmd.com/diet/a-z/alkaline-diets

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The alkaline diet claims to help your body maintain its blood pH level. In fact, nothing you eat is going to substantially change the pH of your blood. Your body works to keep that level constant.

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I suspect that in your case you have casein intolerance and/or allergy, which caused your issues, and many of our site's participants, including myself and the board moderators, definitely recognize this, and often recommend excluding cow's milk/casein to those who have ongoing symptoms after going gluten-free.