Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Terrible Neurological Symptoms


HectorConvector

Recommended Posts

Jackie Garrett Collaborator
Just now, Jackie Garrett said:

Tea,  was not good with me it has Tannin in (Tannic acid)

I know it is things we have always loved but to get well we have to swap them for things gentler on our bodies, there are alternatives, I craved tea for months and months but I didn’t give in and now I don’t even think about it, I have got used to my herbal tea I only have one day and many of them I don’t like but I do like Peppermint and Camomile, there are plenty out there if you are going to make some swaps. In time when your body hopefully recovers (this is what I found ) I can get away with some things but only in moderation and on  the odd occasion but i am used to my new way of living now and all the things I used to crave are diminishing as I have found new things that I like but it did take time as we are so used to our way of eating and drinking the things we have always loved and grown up with. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 308
  • Created
  • Last Reply

Top Posters In This Topic

  • HectorConvector

    101

  • Jackie Garrett

    67

  • Wheatwacked

    35

  • knitty kitty

    30

Top Posters In This Topic

  • HectorConvector

    HectorConvector 101 posts

  • Jackie Garrett

    Jackie Garrett 67 posts

  • Wheatwacked

    Wheatwacked 35 posts

  • knitty kitty

    knitty kitty 30 posts

Posted Images

Wheatwacked Veteran
On 11/24/2021 at 7:59 AM, HectorConvector said:

I can try the mega dose of vitamin D for a week, though basically everything at this point is guesswork

Was it helpful and what do you consider a megadose?

It's been a week since increasing my iodine intake to 3 sheets a day of nori. Today I got 8 hours sleep staight through. My usual is 2 1/2 hour batches. Vitamin D has an antidepressant effect in common with Duloxetine.

Lactic acid build up could fit with some toxin caused by eating quantity. It will be guess work until you or you doctors make the right guess. 

Quote

vitamin D supplementations improve peripheral diabetic neuropathy? Oral supplementation of vitamin D 3 (50,000 IU) once weekly for 12 weeks was associated with improvement in the serum level of vitamin D and significant decrease in the symptoms and sign of diabetic neuropathy.  https://pubmed.ncbi.nlm.nih.gov/30641826/

 

Jackie Garrett Collaborator
3 minutes ago, Wheatwacked said:

Was it helpful and what do you consider a megadose?

It's been a week since increasing my iodine intake to 3 sheets a day of nori. Today I got 8 hours sleep staight through. My usual is 2 1/2 hour batches. Vitamin D has an antidepressant effect in common with Duloxetine.

Lactic acid build up could fit with some toxin caused by eating quantity. It will be guess work until you or you doctors make the right guess. 

 

With me, by lowering my acids in my body, it then allowed my body to start to heal, absorbing the vitamin and minerals from food again that I had became deficient in. In my previous message I mentioned tea had tannic acid I meant to say  tannin acid. The doctors never guessed right with me Wheatwacked, I had to work it out for myself. As long as I don’t have things with too much acid in I’m ok.

HectorConvector Enthusiast
1 hour ago, Wheatwacked said:

Was it helpful and what do you consider a megadose?

It's been a week since increasing my iodine intake to 3 sheets a day of nori. Today I got 8 hours sleep staight through. My usual is 2 1/2 hour batches. Vitamin D has an antidepressant effect in common with Duloxetine.

Lactic acid build up could fit with some toxin caused by eating quantity. It will be guess work until you or you doctors make the right guess. 

 

I'm currently on 8,000iu of vitamin D each day. Not sure if it's had much effect or whether the slight reduction in symptoms is due to the duloxetine only, so it may have had some benefit.

  • 2 months later...
HectorConvector Enthusiast

Time for an update. Currently getting about 2200-2300 calories of a varied gluten-free diet using WheatWacked's spreadsheet template making sure I am hitting my 100% RDA for as much as possible. Still on 60mg duloxetine per day. Now on 4,000iu of Vit D per day and taking a B complex.

So, on duloxetine, during December/January symptoms were pretty minimal and well controlled.

However, during the month of February, I have started a program of athletic training, a three day cycle as follows: Day 1 running, day 2 weight training, day 3 rest. Well towards the end of February and now early March the symptoms have aggressively flared up again, with nerve pain when I wake up and frequently through the day and evenings. It's gone from 0-60 in just a few days it seems, after starting my training. Diet and medication exactly the same. 

The outcome of my neurologist appointment in December was inconclusive but with an MRI scan of the head and spine that will be booked.

Jackie Garrett Collaborator

Hello HectorC 

Maybe look into (Exercise and Lactic acidosis)which can cause a lot of  pain and inflammation in the body, I wonder if this could be causing your symptoms ??? 

trents Grand Master

Is your athletic training outstripping your caloric intake, leaving the body malnourished?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



HectorConvector Enthusiast
20 minutes ago, trents said:

Is your athletic training outstripping your caloric intake, leaving the body malnourished?

No, I've actually gained weight (slightly) with measurably increased muscle mass (I use a tape measure) and slightly decreased fat weight. Also, the symptoms are considerably worse the more I eat. When I gained more weight last October it was extremely bad. 

 

3 hours ago, Jackie Garrett said:

 

That's an interesting possibility (lactic acidosis). I also know that weight training in particular increases inflammation and that could have something to do with it. Any kind of inflammation makes this stuff worse.

knitty kitty Grand Master
4 hours ago, HectorConvector said:

No, I've actually gained weight (slightly) with measurably increased muscle mass (I use a tape measure) and slightly decreased fat weight. Also, the symptoms are considerably worse the more I eat. When I gained more weight last October it was extremely bad. 

 

That's an interesting possibility (lactic acidosis). I also know that weight training in particular increases inflammation and that could have something to do with it. Any kind of inflammation makes this stuff worse.

Hector,

I re-read your past posts.  You mentioned you had been drinking alcohol heavily in September and due to liver damage, your doctor took you off duloxetine.  You also said your blood glucose levels were normal.  Did your doctor measure your A1C? 

Did you measure your blood glucose levels during the time when you were drinking alcohol?  Alcohol can lower blood glucose levels.  I'm wondering if your normal blood glucose levels might have been due to drinking alcohol during that time.

At what times were you measuring your blood glucose levels?   Did you measure glucose before eating and then two hours after eating?  Blood glucose levels should return to normal levels two hours after eating.  

Alcohol is known to reduce thiamine levels.  Thiamine deficiency is known to be involved in liver damage.

You mentioned you stopped drinking alcohol at the end of September and then experienced worsening of symptoms in October, especially when you are more.  

Thiamine is needed to process fats, protein, and carbohydrates into energy.  Your increased consumption of food while being thiamine insufficient or deficient would explain your worsening symptoms.  Thiamine insufficiency can also cause weight gain and inflammation.  In thiamine deficiency, the body switches to burning fats as a way to economize thiamine while preserving some thiamine for brain and heart function.  

Lactic acidosis is a classic symptom of Thiamine deficiency.

More thiamine is required when we do physical labor like exercising, when we fight infections like Epstein Barr virus, and when we are under stress, and when consuming alcohol.  

Thiamine deficiency or insufficiency symptoms can wax and wane depending on how much Thiamine we consume in our daily diet.  

The World Health Organization (WHO) says that a thiamine deficiency can be diagnosed if improvement is seen after giving 300-500 mg of thiamine for several days.  Many experience improvement within hours.  

The WHO's field test for thiamine deficiency is to see if you can rise from a squat.  If you have difficulty or cannot rise from a squat, you may well have thiamine deficiency.

I know I experienced improvement within hours of beginning thiamine supplementation.  I had extremely painful peripheral neuropathy which went away with thiamine supplementation.  I also could not rise from a squat.

Here's some interesting reading for you....

The relation between acute changes in the systemic inflammatory response and circulating thiamine and magnesium concentrations after elective knee arthroplasty

https://www.nature.com/articles/s41598-021-90591-y

Just being a curious cat....

HectorConvector Enthusiast
7 hours ago, knitty kitty said:

Hector,

I re-read your past posts.  You mentioned you had been drinking alcohol heavily in September and due to liver damage, your doctor took you off duloxetine.  You also said your blood glucose levels were normal.  Did your doctor measure your A1C? 

Did you measure your blood glucose levels during the time when you were drinking alcohol?  Alcohol can lower blood glucose levels.  I'm wondering if your normal blood glucose levels might have been due to drinking alcohol during that time.

At what times were you measuring your blood glucose levels?   Did you measure glucose before eating and then two hours after eating?  Blood glucose levels should return to normal levels two hours after eating.  

Alcohol is known to reduce thiamine levels.  Thiamine deficiency is known to be involved in liver damage.

You mentioned you stopped drinking alcohol at the end of September and then experienced worsening of symptoms in October, especially when you are more.  

Thiamine is needed to process fats, protein, and carbohydrates into energy.  Your increased consumption of food while being thiamine insufficient or deficient would explain your worsening symptoms.  Thiamine insufficiency can also cause weight gain and inflammation.  In thiamine deficiency, the body switches to burning fats as a way to economize thiamine while preserving some thiamine for brain and heart function.  

Lactic acidosis is a classic symptom of Thiamine deficiency.

More thiamine is required when we do physical labor like exercising, when we fight infections like Epstein Barr virus, and when we are under stress, and when consuming alcohol.  

Thiamine deficiency or insufficiency symptoms can wax and wane depending on how much Thiamine we consume in our daily diet.  

The World Health Organization (WHO) says that a thiamine deficiency can be diagnosed if improvement is seen after giving 300-500 mg of thiamine for several days.  Many experience improvement within hours.  

The WHO's field test for thiamine deficiency is to see if you can rise from a squat.  If you have difficulty or cannot rise from a squat, you may well have thiamine deficiency.

I know I experienced improvement within hours of beginning thiamine supplementation.  I had extremely painful peripheral neuropathy which went away with thiamine supplementation.  I also could not rise from a squat.

Here's some interesting reading for you....

The relation between acute changes in the systemic inflammatory response and circulating thiamine and magnesium concentrations after elective knee arthroplasty

https://www.nature.com/articles/s41598-021-90591-y

Just being a curious cat....

Hi thanks for your response.

I did a very comprehensive blood sugar panel back in October 2021. These were my results (below this post), tested at all sorts of times before and after eating, those times are marked on the picture (PP = postprandial). Blood sugar level is in mmol/litre. I was drinking no alcohol during this time.

My highest level was 6.8mmol/l / 122 mg/dl and the average for the day (24 hour would be lower overnight) was 5.8mmol/l / 104mg/dl.

This appears to be well in line with normal numbers. The daytime average equates to an A1C of 5.3% which matches lab values I've had done previously. 

Since November I've been taking a B complex which has 1800% of the RDA of Thiamine. I haven't had the blood levels tested recently. 

Regarding squats, they form the backbone of my weight training day on my 3 day cycle - I typically do a set of 50 weighted squats with lighter weights, then heavier weights for several sets of 20-30 squats totalling about 110-150 total squats on each weight training day. This takes a few minutes to achieve. I don't use very heavy weights though, generally about 50KG / 110lbs only. 

 

 

bglevels.png

Wheatwacked Veteran

1800% RDA of Thiamine is roughly 22 grams. 

7 hours ago, knitty kitty said:

The World Health Organization (WHO) says that a thiamine deficiency can be diagnosed if improvement is seen after giving 300-500 mg of thiamine for several days.  Many experience improvement within hours.  

I was getting 6 grams a day (500% RDA). I start shivering at 78F. To my surprise when I tried 500 mg B1 (41600%) for a few days my ambient temp comfort zone (the temp I turn on the heat because I am shivering) dropped from 78 degrees F to 69F. A sure sign to me of increased energy. I am now at 1000 mg a day and energy seems to be improving.

What I think happened to you. During Dec and Jan you were getting enough Thiamine to match your energy needs and to store some. In February you started exercising again, using more Thiamine and eventually using up your stored reserves putting you into B1 deficit, until your symptoms returned. Thiamine (vitamin B1) is an essential nutrient that serves as a cofactor for a number of enzymes, mostly with mitochondrial localization.

90% of the mitochondrial membrane is made of phosphatidyl choline. Duloxetine, like other psycotropic drugs may cause mitochondrial damage, so you may want to increase choline in addition to the Thiamine. The improvement from choline will be more subtle that the thiamine. I found 840 mg Phosphatidyl Choline helpful, though just eating more liver, eggs and meat may suffice.

http://psychrights.org/research/digest/nlps/DrugsCauseMitochondrialDamage.pdf

https://www.sciencedirect.com/science/article/pii/S0261561418324269

Quote

Conclusion: Choline supplementation has the ability to affect muscle metabolism    https://www.researchgate.net/publication/51506242_The_impact_of_choline_availability_on_muscle_lipid_metabolism

Thanks for the update.

HectorConvector Enthusiast
1 hour ago, Wheatwacked said:

1800% RDA of Thiamine is roughly 22 grams. 

What I think happened to you. During Dec and Jan you were getting enough Thiamine to match your energy needs and to store some. In February you started exercising again, using more Thiamine and eventually using up your stored reserves putting you into B1 deficit, until your symptoms returned. Thiamine (vitamin B1) is an essential nutrient that serves as a cofactor for a number of enzymes, mostly with mitochondrial localization.

I was getting 6 grams a day (500% RDA). I start shivering at 78F. To my surprise when I tried 500 mg B1 (41600%) for a few days my ambient temp comfort zone (the temp I turn on the heat because I am shivering) dropped from 78 degrees F to 69F. A sure sign to me of increased energy. I am now at 1000 mg a day and energy seems to be improving.

 

That's interesting, I'll see if I can get a blood test done for Thiamine then, I get a fairly consistent daily intake so whatever result it gives should be accurate. The only difference I notice are my temperatures inside, which average about 61-64°F, though I do wear 3 layers in winter.

trents Grand Master

I would not put much trust in tested Thiamine levels since tested vitamin and mineral level blood test results are not necessarily indicative of what is going on in the cells, just what the blood levels are as compared to medical whatever standards have been established for low or high, which may not be optimum levels. And if you have been supplementing, actual cellular deficiencies may be masked by current high blood levels. On the other hand, thiamine uptake tends to be rapid and quickly therapeutic. Not so with all vitamins, however.

HectorConvector Enthusiast

OK, so tomorrow I'll get myself a high dose B1 Thiamine supplement and try that for a few weeks to see if there's a difference. 

If it's any help; I'll add that along with increased nerve pain the following things always happen: skin goes sticky, get cold flushes and heavy underarm sweat. All these things I never usually get.

knitty kitty Grand Master

Hector, 

You'll want to take 300-500 mg of thiamine Hydrochloride with each meal or about every three to four hours.

The sticky sweat and flushing is what I get when blood glucose is high and there's not enough thiamine to burn glucose off for energy.  I'm Type Two diabetic.

I started off taking thiamine hydrochloride (thiamine HCl).  It's probably the cheapest form of thiamine if you're not inclined to shell out for the more expensive fat soluble forms of thiamine,  allithiamine and benfotiamine, to experiment with.  But because I reacted so positively to thiamine HCl and my body wanted more, I chose to go with allithiamine and benfotiamine.  

Allithiamine can cross the blood brain barrier (gets rid of the brain fog), while benfotiamine is beneficial for intestinal healing, blood glucose levels and hence diabetes. The thiamine HCl had made my urine smell fishy at 1000 mg a day because of the high sulfur content and how the body processes it leaving a methyl-byproduct that smells fishy, but I never got that with benfotiamine and allithiamine at high doses since they are fat soluble and the body processes it differently (without the fishy exhaust) and lower doses of these work because they can get into the cells easily without thiamine transporters.  

Thiamine transporters are special doorways into cells that only allow thiamine (and folate) into cells.  These shut down when there's a thiamine deficiency.  To get them to turn back on, you have to flood the system with thiamine so the concentration of thiamine moves from areas of higher concentration (outside the cells) to areas of lower concentration (inside the cells).  Allithiamine and benfotiamine can merge with the lipids in the cell membranes and get through that way, so more gets into the cells easily bypassing the transporters.  I found I could reduce my dosage with the fat soluble forms.  

Find which form works best for you.  

Remember to take some Magnesium (after meals) because thiamine in any of these forms needs magnesium to work properly.  Magnesium citrate glycinate is a form that is easily absorbed and doesn't have the harsh laxative effect some other forms have.  

Keep us posted on your results! 

HectorConvector Enthusiast
1 hour ago, knitty kitty said:

Hector, 

You'll want to take 300-500 mg of thiamine Hydrochloride with each meal or about every three to four hours.

The sticky sweat and flushing is what I get when blood glucose is high and there's not enough thiamine to burn glucose off for energy.  I'm Type Two diabetic.

I started off taking thiamine hydrochloride (thiamine HCl).  It's probably the cheapest form of thiamine if you're not inclined to shell out for the more expensive fat soluble forms of thiamine,  allithiamine and benfotiamine, to experiment with.  But because I reacted so positively to thiamine HCl and my body wanted more, I chose to go with allithiamine and benfotiamine.  

Allithiamine can cross the blood brain barrier (gets rid of the brain fog), while benfotiamine is beneficial for intestinal healing, blood glucose levels and hence diabetes. The thiamine HCl had made my urine smell fishy at 1000 mg a day because of the high sulfur content and how the body processes it leaving a methyl-byproduct that smells fishy, but I never got that with benfotiamine and allithiamine at high doses since they are fat soluble and the body processes it differently (without the fishy exhaust) and lower doses of these work because they can get into the cells easily without thiamine transporters.  

Thiamine transporters are special doorways into cells that only allow thiamine (and folate) into cells.  These shut down when there's a thiamine deficiency.  To get them to turn back on, you have to flood the system with thiamine so the concentration of thiamine moves from areas of higher concentration (outside the cells) to areas of lower concentration (inside the cells).  Allithiamine and benfotiamine can merge with the lipids in the cell membranes and get through that way, so more gets into the cells easily bypassing the transporters.  I found I could reduce my dosage with the fat soluble forms.  

Find which form works best for you.  

Remember to take some Magnesium (after meals) because thiamine in any of these forms needs magnesium to work properly.  Magnesium citrate glycinate is a form that is easily absorbed and doesn't have the harsh laxative effect some other forms have.  

Keep us posted on your results! 

I see, although I never get high blood sugar personally, my highest recorded level was 122mg/dl after 100 grams of sugar was eaten (I no longer eat anywhere near that much), and the sticky skin (it's not actually the sweat that's sticky, any water on my skin feels sticky when this happens) also occurs with low blood sugar levels of 75mg/dl and anything in between as well. It happens regardless of blood sugar levels and just when my nerve pain is generally worse. My energy is generally excellent FWIW, but I'll be interested to see if a megadose of Thiamine does anything with my symptoms. Thiamine HCl is the only one they have around here and I am pretty lacking in finances at the moment so that will have to do though! 

knitty kitty Grand Master
(edited)
2 hours ago, HectorConvector said:

I see, although I never get high blood sugar personally, my highest recorded level was 122mg/dl after 100 grams of sugar was eaten (I no longer eat anywhere near that much), and the sticky skin (it's not actually the sweat that's sticky, any water on my skin feels sticky when this happens) also occurs with low blood sugar levels of 75mg/dl and anything in between as well. It happens regardless of blood sugar levels and just when my nerve pain is generally worse. My energy is generally excellent FWIW, but I'll be interested to see if a megadose of Thiamine does anything with my symptoms.

Do you eat high glycemic foods?

https://www.hsph.harvard.edu/nutritionsource/carbohydrates/carbohydrates-and-blood-sugar/

 

I found eating high glycemic foods made my blood glucose levels spike quickly and then drop quickly.  And I will get the sweaty palms while my blood glucose levels are going up and down, even though they are within "normal" range.  High fructose corn syrup in soda pop will do this, too.  

I noticed on your blood glucose levels your two hour postprandial levels are not back down to your fasting glucose levels.  How long do they stay up before returning to the fasting glucose levels?   I know I would be uncomfortable when my levels stayed up for more than two hours after eating.  But, I've got to be strict with my levels because I cannot tolerate Sulfonylureas and I do not want to have to take insulin shots.  Everyone is different.

And all of your readings are within range for "normal" which is great!  It's just the length of time before returning to fasting glucose levels I'm concerned about.

The pancreas uses lots of thiamine to make and secrete insulin.  

Thiamine deficiency doesn't manifest as low energy levels until severe deficiency is reached.  

Good luck on your thiamine challenge!

Edited by knitty kitty
Add more information
HectorConvector Enthusiast
57 minutes ago, knitty kitty said:

Do you eat high glycemic foods?

https://www.hsph.harvard.edu/nutritionsource/carbohydrates/carbohydrates-and-blood-sugar/

 

I found eating high glycemic foods made my blood glucose levels spike quickly and then drop quickly.  And I will get the sweaty palms while my blood glucose levels are going up and down, even though they are within "normal" range.  High fructose corn syrup in soda pop will do this, too.  

I noticed on your blood glucose levels your two hour postprandial levels are not back down to your fasting glucose levels.  How long do they stay up before returning to the fasting glucose levels?   I know I would be uncomfortable when my levels stayed up for more than two hours after eating.  But, I've got to be strict with my levels because I cannot tolerate Sulfonylureas and I do not want to have to take insulin shots.  Everyone is different.

And all of your readings are within range for "normal" which is great!  It's just the length of time before returning to fasting glucose levels I'm concerned about.

The pancreas uses lots of thiamine to make and secrete insulin.  

Thiamine deficiency doesn't manifest as low energy levels until severe deficiency is reached.  

Good luck on your thiamine challenge!

RE: the bit in bold: that was on the one day when I had 100g sugar/refined carbs with fat at lunch time, and did not happen again when I the carbs in half. It didn't happen after dinner because that had relatively few carbohydrates in it. 

For comparison these were my numbers the next day:

image.png.d107011bc65bfd9878e65249465a11f1.png

Two hour numbers being similar to 1 hour numbers is apparently not unusual if you also ate a lot of fat with the meal and if both are within the normal range, because fat blunts the 1hr spike but prolongs the increase a bit. Those meals had high carbs and fat.

When I did an oral glucose tolerance test (1 litre of high glucose liquid) my 1 hour level was 150 and the 2 hr level was 95. That was just carbs with no fat. If it had been 50/50 carbs/fat the 1hr+2hr numbers would be more like 130 and 120 based on experimentations with the sugar meter. Still within normal values, mind you. 

As for the foods themselves in the meals on that table, none of the foods I ate were high glycaemic. The highest GI of all the foods on the day I showed first was 33 but it was a high carb load (100g) for one meal.

I don't eat high GI foods at all, in fact I actively avoid them. For the last 3 months my total sugar intake (including "hidden") has averaged 60g per day with a carbohydrate intake of 120g per day, average.

 

 

 

 

knitty kitty Grand Master

Good to  know! 

Jackie Garrett Collaborator
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?

Hector 

Have you become Lactose intolerant ? It happens to so many people especially as they get older, if I have Dairy I get hot and sweat more, sticky skin just like you described and many other symptoms and I believe the Lactose/Histamine in  Dairy can make our bodies produce more Lactic acid hence joint pain/inflammation  and other symptoms, now when I realised the connection with Dairy and my horrendous pain I stopped having it and my symptoms went away some very quickly, I cut out a lot of acidic things from my diet, fermented things ie vinegars, sauces, and cheese (that was hard to do, I loved cheese) alcohol not that I drank much, Tea and Coffee I gave up a while before I realised I was Lactose intolerant, I drank mainly water and herbal Teas to get myself out of the acidic state my body was in, I now follow a lower histamine diet most of the time, I do occasionally have something higher in histamine  but not very often as I believe when you get a build up that’s when the problems start, so, I gave up a lot of things that  I love to get myself well, but I did it, I started to feel a lot better quite quickly, but I know there was a lot of healing to do inside my body but the pain and inflammation went very quickly and WITHOUT ANY MEDICATION at all, so by eating Fresh Honeydew Melon, Water Melon, lots of veg, lean good quality meats and only small portions, low histamine fish and nuts, plenty of fresh fruits, plenty of water but not over drinking too much water as that’s not good either, herbal Tea, and meals made from scratch, limit preservatives as much as possible, I believe by lowering my acid intake gave my body a chance to work again pain free, I try and eat more Alkaline foods. Lactose is in some medication,  supplements and protein drinks, it’s no wonder so many of us all getting problems with our health, if we eat the right things i believe  we can turn our health around, it worked for me.  So maybe this may work for you, I’m no Dr. But it sounds to me you have become acidic too much acid in your body, no test picked it up on me I  worked it out for myself and got my myself well. Food is thy medicine but it has to be the right balance more Alkaline plenty of greens and less acids, it’s getting the balance right. Maybe this could help you, if you have tried everything else what’s there to lose it’s all healthy, you could also speak to a nutritionist but if you have become Lactose intolerant you could swap for Almond milk or one of the alternatives out there. I didn’t connect Lactose/Dairy in all the years I had many symptoms I never questioned it as I thought it was good for me, it was only when I was drinking more of it that I had chronic inflammation and I thought what have I been doing lately that’s different and I thought I have been drinking a lot more milk, so I removed it from my diet, and that included all Dairy and I noticed that not only did all the pain and inflammation disappear but so did all my life long symptoms disappear as well. And when you have lowered things in your body in time you could maybe have little amounts now and again as long as you keep an eye on histamine levels. I hope you find what works for you. 
Take Care

Jackie

Wheatwacked Veteran
8 minutes ago, Jackie Garrett said:

Have you become Lactose intolerant

Most of the lactase we need as adults is made by our gut microbes. While quick pickles (pickled with vinegar) carry the name and taste like fermented foods, they don't have the pre and pro biotics, vinegar sterilizes them. Homemade dill pickles are easy and helps. Commercial milk has more omega 6 than grass fed so it aggravates inflammation, while grass fed does not.

A good guide to homemade fermented foods. https://www.makesauerkraut.com/fermented-pickles/ 

HectorConvector Enthusiast
1 hour ago, knitty kitty said:

Good to  know! 

FWIW, the blood sugar numbers I took last October were compared to Normal values of non-diabetics as established in this study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769652/

I put these values vs. my own into a spreadsheet in the following situations. The "normo glycaemic" values from the study are on the left, mine to the right. The difference is in the right hand column. So for normal people it seems the 2hr blood sugar is not as low as fasting values, which is the lowest of the entire day, but it is slightly less than the 1 hour number. The second lowest of the day for the people in the study was the "random" value.

image.png.5f16b2fc292520ab5962c1e6b84e29ca.png

 

HectorConvector Enthusiast
1 hour ago, Jackie Garrett said:

Hector 

Have you become Lactose intolerant ? It happens to so many people especially as they get older, if I have Dairy I get hot and sweat more, sticky skin just like you described and many other symptoms and I believe the Lactose/Histamine in  Dairy can make our bodies produce more Lactic acid hence joint pain/inflammation  and other symptoms, now when I realised the connection with Dairy and my horrendous pain I stopped having it and my symptoms went away some very quickly, I cut out a lot of acidic things from my diet, fermented things ie vinegars, sauces, and cheese (that was hard to do, I loved cheese) alcohol not that I drank much, Tea and Coffee I gave up a while before I realised I was Lactose intolerant, I drank mainly water and herbal Teas to get myself out of the acidic state my body was in, I now follow a lower histamine diet most of the time, I do occasionally have something higher in histamine  but not very often as I believe when you get a build up that’s when the problems start, so, I gave up a lot of things that  I love to get myself well, but I did it, I started to feel a lot better quite quickly, but I know there was a lot of healing to do inside my body but the pain and inflammation went very quickly and WITHOUT ANY MEDICATION at all, so by eating Fresh Honeydew Melon, Water Melon, lots of veg, lean good quality meats and only small portions, low histamine fish and nuts, plenty of fresh fruits, plenty of water but not over drinking too much water as that’s not good either, herbal Tea, and meals made from scratch, limit preservatives as much as possible, I believe by lowering my acid intake gave my body a chance to work again pain free, I try and eat more Alkaline foods. Lactose is in some medication,  supplements and protein drinks, it’s no wonder so many of us all getting problems with our health, if we eat the right things i believe  we can turn our health around, it worked for me.  So maybe this may work for you, I’m no Dr. But it sounds to me you have become acidic too much acid in your body, no test picked it up on me I  worked it out for myself and got my myself well. Food is thy medicine but it has to be the right balance more Alkaline plenty of greens and less acids, it’s getting the balance right. Maybe this could help you, if you have tried everything else what’s there to lose it’s all healthy, you could also speak to a nutritionist but if you have become Lactose intolerant you could swap for Almond milk or one of the alternatives out there. I didn’t connect Lactose/Dairy in all the years I had many symptoms I never questioned it as I thought it was good for me, it was only when I was drinking more of it that I had chronic inflammation and I thought what have I been doing lately that’s different and I thought I have been drinking a lot more milk, so I removed it from my diet, and that included all Dairy and I noticed that not only did all the pain and inflammation disappear but so did all my life long symptoms disappear as well. And when you have lowered things in your body in time you could maybe have little amounts now and again as long as you keep an eye on histamine levels. I hope you find what works for you. 
Take Care

Jackie

Hi,

I eat 100 gram of cheese a day to get my calcium requirements. I haven't noticed a clear connection between this and the symptoms, but I can't rule out a possible connection, and the acid thing sounds like an interesting one to look at, is there some kind of blood test to determine how acidic my body is? Anyway if I do have some lactose intolerance that might result in some of my symptoms. After I've tried the thiamine supplement to see if that reduces symptoms I can try taking the cheese out if nothing else works. 

Jackie Garrett Collaborator
2 hours ago, Wheatwacked said:

Most of the lactase we need as adults is made by our gut microbes. While quick pickles (pickled with vinegar) carry the name and taste like fermented foods, they don't have the pre and pro biotics, vinegar sterilizes them. Homemade dill pickles are easy and helps. Commercial milk has more omega 6 than grass fed so it aggravates inflammation, while grass fed does not.

A good guide to homemade fermented foods. https://www.makesauerkraut.com/fermented-pickles/ 

Thank you for the info Wheatwacked. Something needs to be done to sort out the Commercial milk then, why do you think it is high in Omega 6 ?

Jackie Garrett Collaborator
1 hour ago, HectorConvector said:

Hi,

I eat 100 gram of cheese a day to get my calcium requirements. I haven't noticed a clear connection between this and the symptoms, but I can't rule out a possible connection, and the acid thing sounds like an interesting one to look at, is there some kind of blood test to determine how acidic my body is? Anyway if I do have some lactose intolerance that might result in some of my symptoms. After I've tried the thiamine supplement to see if that reduces symptoms I can try taking the cheese out if nothing else works. 

Maybe the normal readings should be reset lower to pick up problems with acidosis because I know that was my problem and sorted it out myself, and become well, so maybe they are not picking up on it, like they didn’t with me,you have to try for your self, if you are eating Cheese every day you are adding to your levels of acid  and your pain will continue, if it is the cheese, I know it would cause a lot of pain with me, I know cheese is hard to give up but if you want good health and a pain free body try avoiding it and see how you go,  (there are other foods to give you Calcium) it will take a while for your body to change but symptoms should go with in weeks, every time I had it the pain was excruciating. Maybe give up the Cheese and take the Thiamine at the same time,and if I’m wrong we’ll I’m wrong, I am only trying to help, through what happened to me. And maybe in time when you are healed you may have a little Cheese on the odd occasion.

Good luck Hector.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,861
    • Most Online (within 30 mins)
      7,748

    Priscilla Buxton
    Newest Member
    Priscilla Buxton
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.