Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Question for those avoiding dairy (casein)?


Jmg

Recommended Posts

Jmg Mentor
10 minutes ago, Victoria1234 said:

They work in shakes, puddings, baked items, coffee, most everything.

Are they like the coffee flavours you can get? I had this one ages ago

Open Original Shared Link

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Bit but these are unsweetened. More like a bakery extract minus the alcohol, you use 1 drop to each fluid oz. of base to flavor. I Just used the glazed doughnut and the sugar cookie >.> I got a 4oz of each. I used them in my homemade vegan ice cream. The glazed doughnut was....well dead on for the wrong kind of doughnut lol,  It tasted like one of those cheap mini doughnuts you buy in the bags at gas stations that have been sitting on a shelf for god knows how long. EVEN had that off taste of the fake glaze they dip them in.....NOTHING like the ones we used to get from the local doughnut shop as a kid....the sugar cookie....tasted like one of those soft flour sugar cookies....like the ones my mothers best friend used to make for us every Christmas.....just missing the icing.
I used the waffle this this morning 8 drops in my sweetened coffee....omg great. I also used the silver line biscuit in my eggs this morning....HOLY S))), ok it made my eggs taste like a buttery biscuit....I wanted bacon and jam with them SOOO bad....NEXT STOP, this is going in my Keto grain free roll recipe and my cheddar biscuit recipe (in my blog here) and I bet they will be dead on like the flaky buttery flavor of those Pillsbury canned pop biscuits lol GOD I MISS THOSE.

Link to comment
Share on other sites
Victoria1234 Experienced
2 hours ago, Jmg said:

Are they like the coffee flavours you can get? I had this one ages ago

Open Original Shared Link

No, those are flavored syrups. These are drops that are not sweetened, and highly concentrated. And tastes are excellent.

Capella Flavor Drops are water soluble, highly concentrated, multi-purpose flavor concentrates. Our Flavor Drops contain no fats, calories, sweeteners or sodium. The highly concentrated nature of our Flavor Drops allows us to deliver a superior flavor concentrate, free from preservatives and stabilizers. Many flavored syrups require the addition of preservatives to inhibit mold growth due to the syrup's high water and sugar content.

Link to comment
Share on other sites
Jmg Mentor
On 12/30/2017 at 11:25 PM, Victoria1234 said:

No, those are flavored syrups. These are drops that are not sweetened, and highly concentrated. And tastes are excellent.

Capella Flavor Drops are water soluble, highly concentrated, multi-purpose flavor concentrates. Our Flavor Drops contain no fats, calories, sweeteners or sodium. The highly concentrated nature of our Flavor Drops allows us to deliver a superior flavor concentrate, free from preservatives and stabilizers. Many flavored syrups require the addition of preservatives to inhibit mold growth due to the syrup's high water and sugar content.

It's a new one for me. I'm going to try and make more things from first principle this year, proper baking etc. So I'll maybe give one of these a try once I'm in the swing of things.

As for the casein revelation. Well I've spent the past few days eating some gluten-free mince pies, pudding and cake, all of which had trace elements of dairy, butter, milk, cream etc. They were delicious but I've had all my fears confirmed. The biggest revelation has been my breathing which really suffered, I've had asthma symptoms as well as a clogged up sinuses, phlegmy cough etc.

I have a couple of large spots on my face and some on the back of my scalp as well. That ties in with what I'd previously known about dairy being bad for my skin, but every reaction seems ramped up, maybe due to the dairy free time I spent in the run up to xmas. 

I had some stomach issues as well and just yesterday some joint pain in my fingers. I think just as happened with gluten, once I removed it completely my response became heightened in my mini dairy 'challenge'.  At times I've not felt well at all. 

So today with the new year I'm getting rid of all of it. It's not easy, emotionally at least.  I was given butter shortbread and chocolate cake at xmas :( but I now realise my dairy issues aren't limited to some lactose intolerance and I now think they may explain the high IGE readings that the doctor didn't seem to have a reason for.  Although the response is nowhere near as bad as gluten exposure, it's not something I want to risk again. 

I'm hoping with a stricter approach I'll see some wider health benefits, hopefully some mental ones too  :)

Thanks for all the help and support. This discovery has been something of a shock!

Link to comment
Share on other sites
  • 2 weeks later...
Jmg Mentor

Wow.

On New Years Day I eliminated all dairy. I was feeling crappy just from a week's indulgence in foods with dairy included, some gluten free cakes, pies etc. Even that week had left me with asthma, blocked sinuses, a hacking phlegmy cough, spots, itchy scalp, diarrhea and a brain fog. I noticed a difference within a couple of days and by now it's even more noticeable. The physical stuff has improved markedly, although my breathing isnt fully back to normal. 

What's really thrown me for a six is the mental improvement. I feel far more alert and focussed. I've come to realise the last time I felt this was when I very first went gluten free, at that time I'd eliminated everything bar salad and fish, so dairy must've been removed also. I've never felt quite like that since and now I know why. 

So all this time by not completely removing dairy I've been living in denial and metaphorically shooting myself in the foot... :rolleyes:

I'm still a bit shocked, having  difficulty processing it and I'm also going through the same grieving stage that occurred when I went gluten-free. All of a sudden I can't even eat most of the stuff on the 'Free From' section. The treats which I used to console myself with have fallen like ducks at a funfair:

Ice cream :blink:

Chocolate :angry: even the dark kind is ****ing 'May Contain' :angry:

Puddings :(

Almost all the ***** nicest gluten-free cakes :wacko:

 etc etc.

 More importantly than any one food is a greater loss of freedom. There's so little I can ***** ******* eat! 

Still, I prefer knowing to not knowing, prefer this new feeling to how I felt before, can't see myself slipping from this diet unless the stuff I read about the GAPS diet potentially curing dairy protein allergies pans out. Mr GFinDC had it right, I'm starting to adjust to a new reality.

But I feel sad, and I feel stupid, because I've been in denial and what I thought was maybe lactose intolerance was a lot more. 

Wow... 

Link to comment
Share on other sites
Feeneyja Collaborator

I’m glad you figured things out. Yes, it’s all a bit painful. But when you feel great, it helps with the shock and disappointment. 

You might want to check out information on the Autoimmune Protocol (AIP). It’s a science based elimination diet designed to help you determine your food sensitivities, heal the gut, and provide your body with optimal nutrition and lifestyle for proper functioning.  There are foods that we can be sensitive to that we can add back once the gut has healed and immune system is not so active.  Check out the website for The Paleo Mom for the science and rationale behind AIP.

My daughter and I have been following AIP and the benefits have been amazing. Her psoriasis, joint pain, and breathing problems have gone into remission on it. My anxiety, focus, joint pain, heart palpitations, hair loss, dizziness have all gone. Her and I are also sensitive to dairy (as is another of my daughters) but we also can’t have eggs (I get anxiety and irregular heartbeat and it causes psoriasis flare for her).  We will begin the reintroduction phase soon, so hopefully some foods will come back into rotation.  

There are lots of great AIP recipes out there you might want to check out.  They are guaranteed to be dairy free and grain free. I have made some lovely homemade ice creams (like fig cranberry, mint, chocolate, lemon, cinnamon, ginger bread, vanilla, etc).

Link to comment
Share on other sites
Jmg Mentor

I have seen it, when I had my first 'revelation' about gluten I was a regular on all the Paleo sites and I devoured so much information I wound up overloaded and took a step back. 

I was also a bit scared by it, there's precious little left to eat once all those foods are taken out of the running. I guess I'm some of the way there now. I don't drink, dairy has gone, I don't have anywhere near as much processed foods as I did. So maybe with some planning I could go the rest of the way and try and see what impact it could have. 

You're right by the way, these look awesome:

Open Original Shared Link

I'd have to readjust to doing a lot more cooking than I have been used to though! 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kareng Grand Master
54 minutes ago, Jmg said:

Wow.

On New Years Day I eliminated all dairy. I was feeling crappy just from a week's indulgence in foods with dairy included, some gluten free cakes, pies etc. Even that week had left me with asthma, blocked sinuses, a hacking phlegmy cough, spots, itchy scalp, diarrhea and a brain fog. I noticed a difference within a couple of days and by now it's even more noticeable. The physical stuff has improved markedly, although my breathing isnt fully back to normal. 

What's really thrown me for a six is the mental improvement. I feel far more alert and focussed. I've come to realise the last time I felt this was when I very first went gluten free, at that time I'd eliminated everything bar salad and fish, so dairy must've been removed also. I've never felt quite like that since and now I know why. 

So all this time by not completely removing dairy I've been living in denial and metaphorically shooting myself in the foot... :rolleyes:

I'm still a bit shocked, having  difficulty processing it and I'm also going through the same grieving stage that occurred when I went gluten-free. All of a sudden I can't even eat most of the stuff on the 'Free From' section. The treats which I used to console myself with have fallen like ducks at a funfair:

Ice cream :blink:

Chocolate :angry: even the dark kind is ****ing 'May Contain' :angry:

Puddings :(

Almost all the ***** nicest gluten-free cakes :wacko:

 etc etc.

 More importantly than any one food is a greater loss of freedom. There's so little I can ***** ******* eat! 

Still, I prefer knowing to not knowing, prefer this new feeling to how I felt before, can't see myself slipping from this diet unless the stuff I read about the GAPS diet potentially curing dairy protein allergies pans out. Mr GFinDC had it right, I'm starting to adjust to a new reality.

But I feel sad, and I feel stupid, because I've been in denial and what I thought was maybe lactose intolerance was a lot more. 

Wow... 

I am wondering if, once you get yourself sorted out, you might not need to worry so much about a dark chocolate that has a "may contain" allergy statement.  A lot of times, those are just because they have dairy around.  Probably none in the chocolate.  And if we aren't talking allergy, maybe a speck of dairy once in a while won't make a difference.  

And we have a gluten-free dairy free bakery here with really yummy cake and frosting.  I serve them to gluten eaters and they don't know the difference.  so it is possible.  

 

And there are some yummy ice creams made with coconut here.  I haven't tried the almond milk based ones but I hear they are good. 

Link to comment
Share on other sites
Ennis-TX Grand Master
1 hour ago, Jmg said:

Wow.

On New Years Day I eliminated all dairy. I was feeling crappy just from a week's indulgence in foods with dairy included, some gluten free cakes, pies etc. Even that week had left me with asthma, blocked sinuses, a hacking phlegmy cough, spots, itchy scalp, diarrhea and a brain fog. I noticed a difference within a couple of days and by now it's even more noticeable. The physical stuff has improved markedly, although my breathing isnt fully back to normal. 

What's really thrown me for a six is the mental improvement. I feel far more alert and focussed. I've come to realise the last time I felt this was when I very first went gluten free, at that time I'd eliminated everything bar salad and fish, so dairy must've been removed also. I've never felt quite like that since and now I know why. 

So all this time by not completely removing dairy I've been living in denial and metaphorically shooting myself in the foot... :rolleyes:

I'm still a bit shocked, having  difficulty processing it and I'm also going through the same grieving stage that occurred when I went gluten-free. All of a sudden I can't even eat most of the stuff on the 'Free From' section. The treats which I used to console myself with have fallen like ducks at a funfair:

Ice cream :blink:

Chocolate :angry: even the dark kind is ****ing 'May Contain' :angry:

Puddings :(

Almost all the ***** nicest gluten-free cakes :wacko:

 etc etc.

 More importantly than any one food is a greater loss of freedom. There's so little I can ***** ******* eat! 

Still, I prefer knowing to not knowing, prefer this new feeling to how I felt before, can't see myself slipping from this diet unless the stuff I read about the GAPS diet potentially curing dairy protein allergies pans out. Mr GFinDC had it right, I'm starting to adjust to a new reality.

But I feel sad, and I feel stupid, because I've been in denial and what I thought was maybe lactose intolerance was a lot more. 

Wow... 

....many of those can all be found dairy and gluten free......I know....I make cakes daily....I make and eat dairy free ice cream everyday in my smoothies....puddings really? you make a rice pudding/congee by cooking it in almond or other nut milk then chill and serve you can also make a great one with chia seeds soaked over night in 1:4 ratio with a nut milk and flavor/sweeten to choice....not to mention the standard puddings made with god forsaken corn starch and nut milk....chocolate....HOLY s$#& man go check out the new 2018 food list I did the top few chocolates there are dairy free...I have lactose intolerance and whey allergy....sorta of a pretty quick test for me to see if it really is milk free.......cakes...what do you need to know how to make? Heck I got sources from dairy free cheeses, butter flavored coconut oil in them. etc.....you can take the gluten free cake mixes and substitute nut milk for milk and coconut oil for butter....it works about 1:1 EVERY TIME.....I think the whole dairy industry brain washed you well.....Here go watch this and tell yourself the stuff is evil....
Open Original Shared Link

 

Link to comment
Share on other sites
cyclinglady Grand Master
1 hour ago, Feeneyja said:

I’m glad you figured things out. Yes, it’s all a bit painful. But when you feel great, it helps with the shock and disappointment. 

You might want to check out information on the Autoimmune Protocol (AIP). It’s a science based elimination diet designed to help you determine your food sensitivities, heal the gut, and provide your body with optimal nutrition and lifestyle for proper functioning.  There are foods that we can be sensitive to that we can add back once the gut has healed and immune system is not so active.  Check out the website for The Paleo Mom for the science and rationale behind AIP.

My daughter and I have been following AIP and the benefits have been amazing. Her psoriasis, joint pain, and breathing problems have gone into remission on it. My anxiety, focus, joint pain, heart palpitations, hair loss, dizziness have all gone. Her and I are also sensitive to dairy (as is another of my daughters) but we also can’t have eggs (I get anxiety and irregular heartbeat and it causes psoriasis flare for her).  We will begin the reintroduction phase soon, so hopefully some foods will come back into rotation.  

There are lots of great AIP recipes out there you might want to check out.  They are guaranteed to be dairy free and grain free. I have made some lovely homemade ice creams (like fig cranberry, mint, chocolate, lemon, cinnamon, ginger bread, vanilla, etc).

Scripps in San Diego just published a small study about the AIP diet.  It was tested on IBD sufferers (Crohn’s and UC).  Patients stayed on their meds and the diet was implemented.  Amazingly, a large percentage — 73% —  went into remission!  Okay, it was a small study, but those are pretty good results.  

Open Original Shared Link

 

Link to comment
Share on other sites
Jmg Mentor
18 hours ago, kareng said:

I am wondering if, once you get yourself sorted out, you might not need to worry so much about a dark chocolate that has a "may contain" allergy statement.  A lot of times, those are just because they have dairy around.  Probably none in the chocolate

Thanks Karen. You have no idea how much I want this to be the case, I love chocolate in a big way! However...

Open Original Shared Link

It's quite a shocking read. THe good news is that there are some dairy free versions of chocolate available in the UK and I went out yesterday and bought a couple of bars. I just hope they taste something like the real thing... :)

18 hours ago, kareng said:

And if we aren't talking allergy, maybe a speck of dairy once in a while won't make a difference.  

That's where I've just come from. I thought, 'hey dairy doesn't sit well with you, try to avoid it and the occasional trace element won't hurt. To be honest the past couple of months have been a big wake up call for me on that one, I know it doesn't apply to everyone but for me, at least for now, I think I have to be as strict as I am for gluten. The effects aren't as bad, but I think they're holding me back mentally  - and whilst I can stand a bit of tummy trouble or the odd spot I don't want to feel the way that dairy was making me feel and I definitely don't like having my breathing affected either! I've had some scary moments with asthma over the years...

17 hours ago, Ennis_TX said:

puddings really? you make a rice pudding/congee by cooking it in almond or other nut milk then chill and serve

Ok mate you've shamed me into it. One almond milk rice pudding is going to be on the way and photos will be posted!

Quote

Okay, it was a small study, but those are pretty good results.  

No kidding, amazing to see response from someone 19 years into their condition. I'm thinking at the moment that I'll give it a few months with zero dairy before I try anything else, maybe see if that helps inflammation / IGE response to subside and maybe for some changes in the intestinal biome before I have a go at an AIP diet. Frankly I think I'll need to psyche myself up for that a bit as I'm a bit thrown by the dairy discovery still...

17 hours ago, cyclinglady said:

Scripps in San Diego

It's funny how often I went past Scripps when I lived in La Jolla and never thought one day I'd be hanging on their research! 

Thanks everyone, very much appreciate the replies and support. :)

 

Matt

 

Link to comment
Share on other sites
GFinDC Veteran
1 hour ago, Jmg said:

Thanks Karen. You have no idea how much I want this to be the case, I love chocolate in a big way! However...

Open Original Shared Link

It's quite a shocking read. The good news is that there are some dairy free versions of chocolate available in the UK and I went out yesterday and bought a couple of bars. I just hope they taste something like the real thing... :)

That's where I've just come from. I thought, 'hey dairy doesn't sit well with you, try to avoid it and the occasional trace element won't hurt. To be honest the past couple of months have been a big wake up call for me on that one, I know it doesn't apply to everyone but for me, at least for now, I think I have to be as strict as I am for gluten. The effects aren't as bad, but I think they're holding me back mentally  - and whilst I can stand a bit of tummy trouble or the odd spot I don't want to feel the way that dairy was making me feel and I definitely don't like having my breathing affected either! I've had some scary moments with asthma over the years...

...

Geez Matt, you didn't have to post such a depressing study did you?  :)

That really is an eye opening review of dairy in chocolate and inaccurate package labels.  Per the industry rep, some of the problem seems to be cross contamination due to shared equipment that is used for making milk chocolate.

They didn't study gluten contamination.  But it seems like the same x-contamination could happen there.  And not be labeled at all like the dairy isn't in the label either.

It seems the only responsible thing is for all celiacs to stop eating any chocolate right away.  By the way, this isn't how rumors/myths get started!  Or is it? :)

Over here we have a brand called Enjoy Life that makes products that are free from most major allergens.  I think they are a pretty reliable company.  Not sure if you get Enjoy Life products over there though.  Their choc chips are in  a mostly yellow bag.

Link to comment
Share on other sites
Ennis-TX Grand Master
18 minutes ago, GFinDC said:

Geez Matt, you didn't have to post such a depressing study did you?  :)

That really is an eye opening review of dairy in chocolate and inaccurate package labels.  Per the industry rep, some of the problem seems to be cross contamination due to shared equipment that is used for making milk chocolate.

They didn't study gluten contamination.  But it seems like the same x-contamination could happen there.  And not be labeled at all like the dairy isn't in the label either.

It seems the only responsible thing is for all celiacs to stop eating any chocolate right away.  By the way, this isn't how rumors/myths get started!  Or is it? :)

Over here we have a brand called Enjoy Life that makes products that are free from most major allergens.  I think they are a pretty reliable company.  Not sure if you get Enjoy Life products over there though.  Their choc chips are in  a mostly yellow bag.

Enjoy life just did a repackaging on all their lines. All enjoy life foods are now made in teal packages. They just rolled this out as teal is a allergen awareness things, IE the teal pumpkin etc. 

I posted a whole bunch of other free from chocolates also....Enjoy life...not free from sugar....I have been pitching the sugar free option at them for 2 years now. I honestly prefer the Lakanto Chocolate bars.....I snack on one and have a square or 2 every meal as a treat since I discovered them back in December while shopping for chocolate bars for my diabetic mother. Things are like god sends, dairy free, sugar free, gluten free....and better then a Hershey bar.

Link to comment
Share on other sites
Jmg Mentor
3 hours ago, GFinDC said:

It seems the only responsible thing is for all celiacs to stop eating any chocolate right away. 

 

Good luck delivering that message :P

simpsons-villagers-pitchfork-torches.jpeg

 

It's a very depressing study though. I've little doubt that similar results would be found here in Europe and I do wonder what a similar gluten study would find. 

On the positive side I've just eaten a lovely dairy free dark chocolate with orange bar from UK retailer M&S. It cost me my arm and my leg but it's reassured me that chocolate will not completely be a thing of the past...

Link to comment
Share on other sites
Wheatwacked Veteran

It is sad to say goodbye to old friends. I finally gave up M&M Peanut, my lifetime favorite, when post GFD I discovered that it has added lactose bringing that issue, and that peanuts cause my prostate BPH to flare up. The gluten free diet cured my Benign Prostate Hypertrophy diagnosed originally in 1972 after about three months wheat free, but I would have flare-ups. I eventually realized it happened whenever I ate peanut butter. 

On ‎12‎/‎12‎/‎2017 at 2:30 PM, Feeneyja said:

Also some dizziness/eye focus thing.

I had that a few times too. It is like both eyes are looking in different directions at once and everything is swirling. It is scary.

On ‎12‎/‎27‎/‎2017 at 3:49 AM, Jmg said:

I'm just having a bit of a moan

Is that what you guys call whingeing? That seems to be our lot in life. Whinge and move on to the next challenge.

Link to comment
Share on other sites
Jmg Mentor
23 minutes ago, Wheatwacked said:

I finally gave up M&M Peanut, my lifetime favorite, when post GFD I discovered that it has added lactose bringing that issue, and that peanuts cause my prostate BPH to flare up. The gluten free diet cured my Benign Prostate Hypertrophy diagnosed originally in 1972 after about three months wheat free, but I would have flare-ups. I eventually realized it happened whenever I ate peanut butter. 

Interesting. I got an above range PSA level recently and am supposed to be monitored now, though I've not heard anything. I have a family history of prostate cancer so it does cross my mind from time to time. I'm wondering if all this inflammation has maybe affected it and if this diet change will help...

 

25 minutes ago, Wheatwacked said:

Is that what you guys call whingeing? That seems to be our lot in life. Whinge and move on to the next challenge.

Yes! Great word whinge! It's my go to when I'm not carping, complaining, grousing or even better yet, grumbling! :D

 

Link to comment
Share on other sites
Wheatwacked Veteran

At 21, I went to the doctor complaining of some pain on urination. He stuck his finger up my rear and said my prostate was enlarged. He then said it would get worse with age. He also said that prostate cancer was rare in patients with BHP. He also said I should tell my wife we need to have more sex as treatment. That did not go well. So all these years I have lived with it and eventually I had to treat it. Those supplements do work and have no side effects. The side effects of the prescriptions scare me. Three months after GFD Thanksgiving 2014, when the current bottle of Swanson Herbal Prostate ran out I decided to see what happen. Except for the peanut butter issue I've been fine since.

From what I've read the PSA tests are wildly inaccurate.

 

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748

    TT24
    Newest Member
    TT24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...