Severe reaction to dark beer

[Chris91]

Hi Everyone! This is my first post. I'm desperate to find out if anyone on here has had a similar experience to what I'm going through. I have non-Celiac severe gluten sensitivity, but most of the time get away with eating certain forms of it. Can cause me bearable muscle pain. I have a stuck kidney stone and read that drinking beer helps to move it. So, back in June I tried drinking two Coronas (I should mention that I don't drink, but am desperate to rid myself of this stone). It gave me a headache and the stone didn't move. Guy at the liquor store said Corona is very low in gluten. So, I read another post somewhere that it has to be dark beer. So I drank a local craft dark beer (2 pints) similar to Guinness Stout (has barley in it) and the next morning my whole back was frozen, muscle spasms - worst of my life. They just kept getting worse as the days passed. Went to urgent care as my arm was numb and felt like the muscles were exploding and being torn from the bone at the same time. That was 10 days ago and it is only marginally better. Worse when I bend over, can't sit, can only lie down or stand-too painful. I have to hold up my left arm most of the time to reduce the pain. Only my left side, arm and upper back. I've rehydrated and taken electrolytes and minerals in case it was due to that. No improvement.

Has anyone experienced severe muscle spasms like this from beer? How long do they take to resolve? Thanks for any replies.

[trents]

I have never heard that drinking beer (of any kind) will move a kidney stone. That sounds like bogus info to me. Be careful that you don't take everything your read on the internet as gospel truth. Drinking any kind of alcohol will trigger a migraine for me.

That Corona is lower in gluten sounds like crap info to me as well. There are gluten free beer products available out there but any beer made from wheat or barley will have a full amount of gluten. Gluten-free beers are made from non gluten containing grains like sorghum. 

Forgive me for being blunt but you need to take your NCGS (Non Celiac Gluten Sensitivity) more seriously and stop cheating on your gluten-free diet. Obviously, gluten is very toxic to you. Having NCGS is not a license to be lax in avoiding gluten.

[Chris91]

15 minutes ago, trents said:

I have never heard that drinking beer (of any kind) will move a kidney stone. That sounds like bogus info to me. Be careful that you don't take everything your read on the internet as gospel truth. Drinking any kind of alcohol will trigger a migraine for me.

That Corona is lower in gluten sounds like crap info to me as well. There are gluten free beer products available out there but any beer made from wheat or barley will have a full amount of gluten. Gluten-free beers are made from non gluten containing grains like sorghum. 

Forgive me for being blunt but you need to take your NCGS (Non Celiac Gluten Sensitivity) more seriously and stop cheating on your gluten-free diet. Obviously, gluten is very toxic to you. Having NCGS is not a license to be lax in avoiding gluten.

Believe me, I have learned my lesson. This muscle pain is comparable to kidney stone pain and if you've had those, you know you never want to experience it again.

[Wheatwacked]

3 hours ago, Chris91 said:

Guy at the liquor store

In patients with celiac disease, treatment with a gluten-free diet lowers stone incidence comparably to control levels 

probably not your best source of medical advice. Hope ours at least makes more sense. 😄

Were the bubbles supposed to jiggle them loose? Then they would still have to pass through, leaving I think a trail of pain through your kidney, ureters, bladder, urethra. I had a friend years ago with kidney stones and more than once I saw him crumble to the floor in pain. He ended up getting the stones broken up with ultrasonic.  I don't know his ultimate outcome.

It is funny, one kidney specialist advises more food with oxalate, another less. It's like the wild west. The best thing you can do for right now is follow a strictly GFD diet. Products allowed/disallowed in the Gluten Contamination Elimination Diet. How much choline, an essential nutrient for fat metabolism, (eggs and beef are the best sources) are you eating? The minimumrecommended dietary allowance is at least 3 eggs a day, or 15 ounce of steak. Choline Fact Sheet for Health Professionals

"Intestinal malabsorption can cause urinary stone disease via enteric hyperoxaluria. It has been shown that celiac disease, a common malabsorption disorder, is associated with an increased risk of calcium oxalate kidney stones in adults."   https://pubmed.ncbi.nlm.nih.gov/22704115/#:~:text=Purpose%3A Intestinal malabsorption can cause,oxalate kidney stones in adults.

"Thus, the net effect of fat malabsorption from any cause is increased absorption of luminal oxalate into the blood.

In 2019 8% of the quarter million patients with Enteric Hyperoxaluria had Celiac Disease, 20% IBD and 60% were a result of were RYGB surgery for obesity. 

This article may help you understand what is going on. Pathophysiology and Treatment of Enteric Hyperoxaluria

"There are no specific therapies for enteric hyperoxaluria. Current management includes treating the underlying disease with the goal of reducing fat malabsorption... Examples include reducing dietary consumption of fat or oxalate, using calcium supplements to bind oxalate in the gut, and increasing daily fluid intake to reduce calcium oxalate concentration... Whenever possible, treatment of the underlying GI disease is critical for reducing fat malabsorption and resultant enteric hyperoxaluria... In patients with celiac disease, treatment with a gluten-free diet lowers stone incidence comparably to control levels 

 

Edited July 18, 2022 by Wheatwacked

[Scott Adams]

I agree with @trents and just want to add that kidney stones can be serious, so be sure to get medical help for your situation, as not all stones will pass no matter what you do.

Also, would you classify yourself as a self-diagnosed gluten sensitive person? Did you ever get screened for celiac disease?

[Chris91]

1 hour ago, Wheatwacked said:

In patients with celiac disease, treatment with a gluten-free diet lowers stone incidence comparably to control levels 

probably not your best source of medical advice. Hope ours at least makes more sense. 😄

Were the bubbles supposed to jiggle them loose? Then they would still have to pass through, leaving I think a trail of pain through your kidney, ureters, bladder, urethra. I had a friend years ago with kidney stones and more than once I saw him crumble to the floor in pain. He ended up getting the stones broken up with ultrasonic.  I don't know his ultimate outcome.

It is funny, one kidney specialist advises more food with oxalate, another less. It's like the wild west. The best thing you can do for right now is follow a strictly GFD diet. Products allowed/disallowed in the Gluten Contamination Elimination Diet. How much choline, an essential nutrient for fat metabolism, (eggs and beef are the best sources) are you eating? The minimumrecommended dietary allowance is at least 3 eggs a day, or 15 ounce of steak. Choline Fact Sheet for Health Professionals

"Intestinal malabsorption can cause urinary stone disease via enteric hyperoxaluria. It has been shown that celiac disease, a common malabsorption disorder, is associated with an increased risk of calcium oxalate kidney stones in adults."   https://pubmed.ncbi.nlm.nih.gov/22704115/#:~:text=Purpose%3A Intestinal malabsorption can cause,oxalate kidney stones in adults.

"Thus, the net effect of fat malabsorption from any cause is increased absorption of luminal oxalate into the blood.

In 2019 8% of the quarter million patients with Enteric Hyperoxaluria had Celiac Disease, 20% IBD and 60% were a result of were RYGB surgery for obesity. 

This article may help you understand what is going on. Pathophysiology and Treatment of Enteric Hyperoxaluria

"There are no specific therapies for enteric hyperoxaluria. Current management includes treating the underlying disease with the goal of reducing fat malabsorption... Examples include reducing dietary consumption of fat or oxalate, using calcium supplements to bind oxalate in the gut, and increasing daily fluid intake to reduce calcium oxalate concentration... Whenever possible, treatment of the underlying GI disease is critical for reducing fat malabsorption and resultant enteric hyperoxaluria... In patients with celiac disease, treatment with a gluten-free diet lowers stone incidence comparably to control levels 

 

Thanks for this info. I actually heard beer helps to move them from several sources, including one who said his urologist told him to drink beer. I figured it was worth a try (or two) but, it didn't work for me and ended up majorly hurting me. I think beer is a diuretic, so maybe that's why it works for some people. I'm still recovering 10 days later and still have the stone.

[Chris91]

1 hour ago, Scott Adams said:

I agree with @trents and just want to add that kidney stones can be serious, so be sure to get medical help for your situation, as not all stones will pass no matter what you do.

Also, would you classify yourself as a self-diagnosed gluten sensitive person? Did you ever get screened for celiac disease?

Yes, I am getting medical help as well throughout the process: X-rays, ultrasound, CT scan, bloodwork to monitor kidney swelling, function and location of the stone. It's almost in the bladder, but still stuck. I've taken several herbal formulas to move it along, but it is very stubborn.

I got the Alcat test years ago and it said I had "Non-Celiac severe gluten sensitivity." The beer was made with barley so, I am assuming this was a reaction to that. I just didn't know it could last this long (10 days and counting of severe pain).

[LCAnacortes]

My daughter starting getting kidney stones in her 20's.  Her doctor put her on Flomax to pass them.  It is a prostate drug but it dialates things so that the stones can pass through.  The pharmacist looked at her funny when she picked up the prescription but she said "kidney stone" and they said ohhhhhhhh, okay.  They told her low oxalate diet to avoid forming them. Since then - we found out that we have celiac running strongly in the family.  We have not been diagnosed yet but celiac is strongly suspected for both of us. She is already lactose intolerant.  I suspect lactose is a problem for me too.  

[Chris91]

25 minutes ago, LCAnacortes said:

My daughter starting getting kidney stones in her 20's.  Her doctor put her on Flomax to pass them.  It is a prostate drug but it dialates things so that the stones can pass through.  The pharmacist looked at her funny when she picked up the prescription but she said "kidney stone" and they said ohhhhhhhh, okay.  They told her low oxalate diet to avoid forming them. Since then - we found out that we have celiac running strongly in the family.  We have not been diagnosed yet but celiac is strongly suspected for both of us. She is already lactose intolerant.  I suspect lactose is a problem for me too.  

Yeah, I tried Flomax and it didn't work for me. I've been using herbal formulas with chanca piedra in them and other stuff. Lemon juice took away the original attack/flank pain because I guess it breaks down the stone depending on what it is made of (makes the urine alkaline). I've gone through 10 bags of lemons and it is almost out of the ureter. My last stones 6 years ago were made of calcium oxalate but, since this one didn't show up on the x-rays it is unlikely to have calcium in it. It may be a uric acid stone. You can avoid making calcium oxalate stones by consuming lots of citrates in your diet, that has been clinically proven. Also, there is research on vinegar (acetic acid) preventing stone formation. Uric acid stones can be somewhat dissolved by making the urine alkaline. They usually prescribe potassium citrate. Sometimes stones can be made of other things or a combo. I won't know until this one is out and it is sent to a lab.

[trents]

1 hour ago, Chris91 said:

Yes, I am getting medical help as well throughout the process: X-rays, ultrasound, CT scan, bloodwork to monitor kidney swelling, function and location of the stone. It's almost in the bladder, but still stuck. I've taken several herbal formulas to move it along, but it is very stubborn.

I got the Alcat test years ago and it said I had "Non-Celiac severe gluten sensitivity." The beer was made with barley so, I am assuming this was a reaction to that. I just didn't know it could last this long (10 days and counting of severe pain).

I do not believe there is really a test for NCGS. Celiac disease must first be ruled out and the ALCAT testing is not designed for that. There are specific serum antibody tests designed to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ I would strongly suggest you get some actual celiac disease testing done.

[Chris91]

1 hour ago, trents said:

I do not believe there is really a test for NCGS. Celiac disease must first be ruled out and the ALCAT testing is not designed for that. There are specific serum antibody tests designed to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ I would strongly suggest you get some actual celiac disease testing done.

Ok, will do. That's what ALCAT said on the results. It was about 6-8 years ago.

[knitty kitty]

@Chris91,

It would be a good idea to get proper Celiac testing done, like @trents suggests.  You could be doing serious damage to your long term health.  Some scientific studies are suggesting that NCGS symptoms may be preliminary to Celiac Disease in some people.  Genetic testing or antibody testing after gluten challenge would be beneficial. 

Malabsorption of vitamins and minerals is a hallmark of Celiac Disease.  Deficiency in Thiamine Vitamin B1 may occur within nine days because the B vitamins cannot be stored in the body very long.  Deficiencies in other B vitamins may occur as well.  

Thiamine deficiency is connected to oxalates and kidney stone formation...

https://www.hormonesmatter.com/marginally-insufficient-thiamine-intake-oxalates/

 

See how your symptoms compare to these examples of Thiamine deficiency....

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And...

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

Thiamine deficiency goes under-recognized by doctors.  You may want to discuss this with them.

[Chris91]

14 minutes ago, knitty kitty said:

@Chris91,

It would be a good idea to get proper Celiac testing done, like @trents suggests.  You could be doing serious damage to your long term health.  Some scientific studies are suggesting that NCGS symptoms may be preliminary to Celiac Disease in some people.  Genetic testing or antibody testing after gluten challenge would be beneficial. 

Malabsorption of vitamins and minerals is a hallmark of Celiac Disease.  Deficiency in Thiamine Vitamin B1 may occur within nine days because the B vitamins cannot be stored in the body very long.  Deficiencies in other B vitamins may occur as well.  

Thiamine deficiency is connected to oxalates and kidney stone formation...

https://www.hormonesmatter.com/marginally-insufficient-thiamine-intake-oxalates/

 

See how your symptoms compare to these examples of Thiamine deficiency....

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And...

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

Thiamine deficiency goes under-recognized by doctors.  You may want to discuss this with them.

Thanks much for that info. I have been taking B complex since this happened. Doesn't appear to help and I don't seem to have the symptoms of thiamine deficiency. I think/guess it is inflammation from the barley in the craft beer. The only symptom I have is SEVERE muscle cramping/spasms and they are only marginally better than 10 days ago. Literal torture and I've had muscle spasms my whole life. I just took a natural antihistamine (quercetin, bromelain and vit c) to see if I can bring down the inflammation. I will need to get tested for celiac's.

[trents]

Chris91, you need to know that if you start the gluten-free diet before all testing is complete you will invalidate the test results. The Mayo Clinic pretest gluten challenge guidelines are the daily consumption of two slices of wheat bread (or the equivalent amount of gluten) for 6-8 weeks before the antibody testing and if you should go on to get an endoscopy/biopsy, the same amount of gluten for a minimum of two weeks.

[Chris91]

4 minutes ago, trents said:

Chris91, you need to know that if you start the gluten-free diet before all testing is complete you will invalidate the test results. The Mayo Clinic pretest gluten challenge guidelines are the daily consumption of two slices of wheat bread (or the equivalent amount of gluten) for 6-8 weeks before the antibody testing and if you should go on to get an endoscopy/biopsy, the same amount of gluten for a minimum of two weeks.

Oh right. Well, I need to get over this painful hump, I'm not eating gluten right now. Once the inflammation goes down I will eat it again and then test. No more beer though! It must've been the barley. I don't have too terrible reactions to some wheat if it's refined, so I can stand eating a small amount before the test. Thanks!

[knitty kitty]

1 hour ago, Chris91 said:

Thanks much for that info. I have been taking B complex since this happened. Doesn't appear to help and I don't seem to have the symptoms of thiamine deficiency. I think/guess it is inflammation from the barley in the craft beer. The only symptom I have is SEVERE muscle cramping/spasms and they are only marginally better than 10 days ago. Literal torture and I've had muscle spasms my whole life. I just took a natural antihistamine (quercetin, bromelain and vit c) to see if I can bring down the inflammation. I will need to get tested for celiac's.

Have you tried a magnesium citrate supplement?  Magnesium helps muscles relax.  And magnesium is a catalyst for Thiamine.  

As you may have noted in the studies I posted, higher than RDA amounts of Thiamine are needed to help in an insufficiency or deficiency of Thiamine (500 mg or more).  Thiamine Hydrochloride, Allithiamine and Benfotiamine are beneficial bioavailable forms of Thiamine.  

I noticed some of the marketed chanca piedra kidney cleanse supplements also contain Thiamine and Pyridoxine Vitamin B6 which works with Thiamine.

Hope you feel better soon.

[Chris91]

7 minutes ago, knitty kitty said:

Have you tried a magnesium citrate supplement?  Magnesium helps muscles relax.  And magnesium is a catalyst for Thiamine.  

As you may have noted in the studies I posted, higher than RDA amounts of Thiamine are needed to help in an insufficiency or deficiency of Thiamine (500 mg or more).  Thiamine Hydrochloride, Allithiamine and Benfotiamine are beneficial bioavailable forms of Thiamine.  

I noticed some of the marketed chanca piedra kidney cleanse supplements also contain Thiamine and Pyridoxine Vitamin B6 which works with Thiamine.

Hope you feel better soon.

Yes, I've been taking magnesium citrate too. I think it didn't help that chanca piedra (I hear) can strip other vitamins out of you while cleansing. So, I'm sure I am depleted since I've been taking it for 2 months. Tks!

[Wheatwacked]

6 hours ago, Chris91 said:

his urologist told him to drink beer.

When my wife was pregnant back in 1976 it was recommended she drink non alcoholic "black beer" for its folate. It is full of B vitamins. Unfortunately all those B vitamins are wrapped in gluten.

If I might ask, do you know your vitamin D plasma? One sign of D toxicity is stones.

Edited July 19, 2022 by Wheatwacked

[Chris91]

25 minutes ago, Wheatwacked said:

When my wife was pregnant back in 1976 it was recommended she drink non alcoholic "black beer" for its folate. It is full of B vitamins. Unfortunately all those B vitamins are wrapped in gluten.

If I might ask, do you know your vitamin D plasma? One sign of D toxicity is stones.

My vit D levels were checked a few months ago and they were the bare minimum, like 32.

[trents]

Chris, D3 is an extremely important vitamin that is involved in many biochemical bodily processes. Bare minimum is certainly not optimum. I would add about 5000IU daily to your supplementation. That is certainly a safe amount.

[Chris91]

41 minutes ago, trents said:

Chris, D3 is an extremely important vitamin that is involved in many biochemical bodily processes. Bare minimum is certainly not optimum. I would add about 5000IU daily to your supplementation. That is certainly a safe amount.

Agreed, but I also read that taking too much can cause kidney stones.

[Wheatwacked]

I figured you'd have seen that. One study I read pointed out that in those results Calcium was also supplemented and questioned could the Calcium have been the factor. After all it is Calcium Oxalate.

"There remains concern, however, that increasing vitamin D intake even by 400 IU/d increases the risk for kidney stones, especially in patients with a history of kidney stones. Despite this concern, there is no credible scientific literature suggesting that such vitamin D intake increases the risk for kidney stones... The evidence is clear that vitamin D toxicity is one of the rarest medical conditions and is typically due to intentional or inadvertent intake of extremely high doses of vitamin D (usually in the range of >50,000-100,000 IU/d for months to years).  Mayo Clinic Proceedings: Vitamin D Is Not as Toxic as Was Once Thought:

Quote

Surge of information on benefits of vitamin D,

Several previous studies have also questioned whether excess vitamin D causes kidney stones. A Women’s Health Initiative (WHI) study in 2006 examined 36,282 women and found that those assigned to active calcium and vitamin D had 17% more kidney stones compared with women assigned placebo (34 cases per 10,000 women vs. 29 cases per 10,000 women).

However, many experts believe it was more likely that the stones were due to calcium rather than vitamin D in the combined supplement.

"McCarthy... said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL in adults and children. ...

According to McCarthy, his target range is based upon several factors:

A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;  https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s  

 

 

Edited July 19, 2022 by Wheatwacked

[Wheatwacked]

And straight to the point:

"However, a study of 2,012 participants – published in the American Journal of Public Health –found no statistically relevant association between 25-hydroxyvitamin D (25 (OH)D) serum level in the range of 20 to 100 ng/mL and the incidence of kidney stones."   Vitamin D Does Not Contribute to Kidney Stones, Study Asserts October 17, 2013  

Vitamin D in the higher plasma range has benificial effects on autoimmune diseases, Seasonal Affective Disorder (winter blues) and much, much more.

[Chris91]

9 hours ago, Wheatwacked said:

And straight to the point:

"However, a study of 2,012 participants – published in the American Journal of Public Health –found no statistically relevant association between 25-hydroxyvitamin D (25 (OH)D) serum level in the range of 20 to 100 ng/mL and the incidence of kidney stones."   Vitamin D Does Not Contribute to Kidney Stones, Study Asserts October 17, 2013  

Vitamin D in the higher plasma range has benificial effects on autoimmune diseases, Seasonal Affective Disorder (winter blues) and much, much more.

Ok, got it. Tks.

[Chris91]

12 hours ago, Wheatwacked said:

And straight to the point:

"However, a study of 2,012 participants – published in the American Journal of Public Health –found no statistically relevant association between 25-hydroxyvitamin D (25 (OH)D) serum level in the range of 20 to 100 ng/mL and the incidence of kidney stones."   Vitamin D Does Not Contribute to Kidney Stones, Study Asserts October 17, 2013  

Vitamin D in the higher plasma range has benificial effects on autoimmune diseases, Seasonal Affective Disorder (winter blues) and much, much more.

After a bad "glutening" which, in my case was presumably the barley in the beer (I checked their website for ingredients) what's the longest you've ever heard or experienced to show some marked improvement? It's been 11 days for me so far, only minor improvement.