Foot swelling

[Bettyvan]

How bad does the swelling of feet get and when do I start to worry and where do I go for help ?  
I cannot stand in my feet right now.  For 4 days.  

[trents]

Welcome to the forum, Bettyvan!

Can you give us some more context? Some more information?

Do you have celiac disease? Are you recently diagnosed? Are you certain you are eating gluten free? May we ask your age range? Is this foot swelling a brand new condition for you? Do you have other significant medical conditions? I'm not trying to be nosy. I'm just trying to get enough information to get a better picture of what might be causing this as it is the first time I have run into foot swelling in the context of celiac disease.

[knitty kitty]

@Bettyvan,

Swelling of the extremities (hands, feet, ankles, calves) is a symptom of Thiamin deficiency. 

Thiamin deficiency is a serious medical condition.  Thiamin deficiency can worsen quickly and cause heart problems, ataxia, and brain dysfunction. It can result in death.  You should talk to your doctor about supplementing with thiamin.  Your doctor may choose to give intravenous thiamine.  

Thiamin deficiency is called Beriberi which means "I can't, I can't".  It refers to not being able to walk.    

Thiamin is Vitamin B1.  Malabsorption caused by damage to the small intestine in Celiac Disease prevents the absorption of many nutrients, vitamins and minerals.  

Thiamin and other B vitamins cannot be stored for long in our bodies.  The B vitamins are called essential vitamins because our bodies cannot live without them.   We must get them from our diet every day.  Since malabsorption can result in deficiencies, supplementing with the eight B vitamins, magnesium and other essential vitamins and minerals is beneficial while the intestines heal.

My feet and ankles became swollen.  My doctors prescribed a thiazide diuretic which only aggravated the problem.  Thiazide diuretics cause MORE loss of Thiamin in the urine.  Many doctors are ignorant about the importance of vitamins and minerals.  Mine were.  I relied on my education as a microbiologist to start supplementing with thiamin and other vitamins and minerals.  The swelling in my feet and hands resolved quickly.  

I took Thiamine Hydrochloride (available over the counter) 100 mg tablets, one tablet with each meal and snack until I was taking a minimum of 500 mg a day.  Thiamine is water soluble (excess is excreted in urine), nontoxic and safe in high doses.  Later I added another form of Thiamin (Tetrahydrofurfuryl disulfide or TTFD) like Allithiamine, Thiamax and Benfotiamine which helps with brain function, nerve transmission, and energy production.  

Thiamin and the other B vitamins work together.  I also took a B Complex supplement, magnesium and Vitamins D, A, and C.  

Definitely talk to your doctor about Thiamin deficiency and your Beriberi symptoms! 

Keep us posted on your progress!

[Bettyvan]

  On 4/23/2023 at 9:00 PM, trents said:

Welcome to the forum, Bettyvan!

Can you give us some more context? Some more information?

Do you have celiac disease? Are you recently diagnosed? Are you certain you are eating gluten free? May we ask your age range? Is this foot swelling a brand new condition for you? Do you have other significant medical conditions? I'm not trying to be nosy. I'm just trying to get enough information to get a better picture of what might be causing this as it is the first time I have run into foot swelling in the context of celiac disease.

Expand Quote  

I am just diagnosed in celiac and done no gluten since Feb 9.  
I am 60 years old. 
much of this flared since I am withdrawaling. From gluten . 
I had neuropathy.  But no swelling. 

[Bettyvan]

  On 4/23/2023 at 9:00 PM, trents said:

Welcome to the forum, Bettyvan!

Can you give us some more context? Some more information?

Do you have celiac disease? Are you recently diagnosed? Are you certain you are eating gluten free? May we ask your age range? Is this foot swelling a brand new condition for you? Do you have other significant medical conditions? I'm not trying to be nosy. I'm just trying to get enough information to get a better picture of what might be causing this as it is the first time I have run into foot swelling in the context of celiac disease.

Expand Quote  

I am just diagnosed in celiac and done no gluten since Feb 9.  
I am 60 years old. 
much of this flared since I am withdrawaling. From gluten . 
I had neuropathy.  But no swelling. 

I also am in naltrexone. But still struggling with pain and swelling. 

[Bettyvan]

  On 4/23/2023 at 10:39 PM, knitty kitty said:

@Bettyvan,

Swelling of the extremities (hands, feet, ankles, calves) is a symptom of Thiamin deficiency. 

Thiamin deficiency is a serious medical condition.  Thiamin deficiency can worsen quickly and cause heart problems, ataxia, and brain dysfunction. It can result in death.  You should talk to your doctor about supplementing with thiamin.  Your doctor may choose to give intravenous thiamine.  

Thiamin deficiency is called Beriberi which means "I can't, I can't".  It refers to not being able to walk.    

Thiamin is Vitamin B1.  Malabsorption caused by damage to the small intestine in Celiac Disease prevents the absorption of many nutrients, vitamins and minerals.  

Thiamin and other B vitamins cannot be stored for long in our bodies.  The B vitamins are called essential vitamins because our bodies cannot live without them.   We must get them from our diet every day.  Since malabsorption can result in deficiencies, supplementing with the eight B vitamins, magnesium and other essential vitamins and minerals is beneficial while the intestines heal.

My feet and ankles became swollen.  My doctors prescribed a thiazide diuretic which only aggravated the problem.  Thiazide diuretics cause MORE loss of Thiamin in the urine.  Many doctors are ignorant about the importance of vitamins and minerals.  Mine were.  I relied on my education as a microbiologist to start supplementing with thiamin and other vitamins and minerals.  The swelling in my feet and hands resolved quickly.  

I took Thiamine Hydrochloride (available over the counter) 100 mg tablets, one tablet with each meal and snack until I was taking a minimum of 500 mg a day.  Thiamine is water soluble (excess is excreted in urine), nontoxic and safe in high doses.  Later I added another form of Thiamin (Tetrahydrofurfuryl disulfide or TTFD) like Allithiamine, Thiamax and Benfotiamine which helps with brain function, nerve transmission, and energy production.  

Thiamin and the other B vitamins work together.  I also took a B Complex supplement, magnesium and Vitamins D, A, and C.  

Definitely talk to your doctor about Thiamin deficiency and your Beriberi symptoms! 

Keep us posted on your progress!

Expand Quote  

Ok.  I will look into that.  Thanks. 

[trents]

  On 4/23/2023 at 11:02 PM, Bettyvan said:

much of this flared since I am withdrawaling. From gluten . 
I had neuropathy.  But no swelling. 

I also am in naltrexone. But still struggling with pain and swelling. 

Expand Quote  

I don't need to embarrass you or to be nosy but I note that the primary use of naltrexone is to address withdrawal from drug and alcohol dependence. Like many medications it may have other uses. Is this why it is being prescribed for you? Or are you being prescribed this med to help with your gluten withdrawal? Let me explain why I am asking and the connection of this with what knitty kitty brought up about thiamine deficiency.

Celiac disease damages the villi that line the small bowel. This is area of the gut where essentially all of our nutrition is absorbed. Therefore, people who have celiac disease many years before being diagnosed will invariably develop vitamin and mineral deficiencies. Neuropathy also is often the result of vitamin deficiencies. Thiamine is one of the B vitamins.

Alcohol and drug abuse also often result in vitamin deficiencies since they typically disrupt normal eating patterns and I believe alcoholism can also leach thiamine from the body. Physicians routinely prescribe concentrated thiamine supplements for those battling alcoholism.

We routinely recommend to those newly diagnosed with celiac disease late in life to start taking vitamin and mineral supplements: Multivitamin, B-complex, D3, Magnesium (glycinate form) and zinc. All these in this list contribute to neurological health with the possible exception of zinc. Any vitamins and supplements should be confirmed to be gluten free since wheat starch is sometimes used in pills.

[Bettyvan]

I thought it odd too.  But did research and the pharmacist said it’s not uncommon.  And there is not much out there to help. 
thanks 

 

[A. Alber]

I have celiac, but even when young and thin I would get gout. I love fish, too much fish and that toe would hurt, now the entire foot. Drinking lots of water and a few cherries, frozen, fresh or dried, might help you. Look at gout diet for list of yes and no besides our celiac plan. Hope this helps.

[NinaS]

  On 4/23/2023 at 9:00 PM, trents said:

Welcome to the forum, Bettyvan!

Can you give us some more context? Some more information?

Do you have celiac disease? Are you recently diagnosed? Are you certain you are eating gluten free? May we ask your age range? Is this foot swelling a brand new condition for you? Do you have other significant medical conditions? I'm not trying to be nosy. I'm just trying to get enough information to get a better picture of what might be causing this as it is the first time I have run into foot swelling in the context of celiac disease.

Expand Quote  

Injections of b complex would help you

 

[knitty kitty]

  On 4/24/2023 at 12:39 AM, Bettyvan said:

I thought it odd too.  But did research and the pharmacist said it’s not uncommon.  And there is not much out there to help. 
thanks 

 

Expand Quote  

Neuropathy is a classic symptom of Thiamine deficiency.  Doctors do not recognize Thiamine Deficiency Diseases yet.  

I had improvement in my peripheral neuropathy, in my feet and hands within an hour of taking Thiamine Hydrochloride.

@trents,

Naltrexone can be used to help with pain...

The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

 

@A. Alber,

Gout is another Thiamine Deficiency Disease.  Thiamine is needed to clear uric acid.  

The World Health Organization recommends trying 500 mg per day of Thiamine Hydrochloride for several weeks.  If improvement is seen, a thiamine deficiency can be diagnosed.  

Thiamine is safe and nontoxic and water soluble (easily excreted in urine).   Doesn't hurt to try it.  No harm, no foul.

[shadycharacter]

  On 4/23/2023 at 10:58 PM, Bettyvan said:

I am just diagnosed in celiac and done no gluten since Feb 9.  
I am 60 years old. 
much of this flared since I am withdrawaling. From gluten . 
I had neuropathy.  But no swelling. 

Expand Quote  

Gluten is a protein. Even though wheat is mostly carbs it's also quite rich in protein, about 10 %. Many gluten-free products on the other hand are based on starch and sometimes contain much less protein. Low protein can cause edema. Is it possible you're getting less protein with your gluten-free diet? 

"Low protein levels in the blood caused by malnutrition, kidney and liver disease can cause edema. The proteins help to hold salt and water inside the blood vessels so fluid does not leak out into the tissues. If a blood protein, called albumin, gets too low, fluid is retained and edema occurs, especially in the feet, ankles and lower legs."

https://www.health.harvard.edu/a_to_z/edema-a-to-z

 

[Blue-Sky]

I would see a doctor, as swelling could be a serious condition that isn't related to celiac disease or vitamin deficiencies and it is best not to take chances with that sort of thing. Celiac disease, or another autoimmune disease, may aggravate an underlying condition but it is important that a doctor knows so that you can get treatment as soon as possible if necessary.

https://www.celiac.com/celiac-disease/gluten-is-not-responsible-for-everything-r5513/

[B.J.]

I was diagnosed a year ago with celiac disease by biopsy. Now, I am experiencing swelling and joint pain in my feet and ankles. Has anyone experienced this and what should I do.  A three dose of Bumex did not help...only made me pee a lot and feel dehydrated.  I need some relief.  Thanks!

[knitty kitty]

@B.J.,

Thiamine deficiency can cause edema of the extremities.  It happened to me.  

Thiamine Deficiency in a Nondrinker and Secondary Pulmonary Edema after Thiamine Replenishment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7028406/

 

[B.J.]

  On 8/16/2023 at 1:24 PM, knitty kitty said:

@B.J.,

Thiamine deficiency can cause edema of the extremities.  It happened to me.  

Thiamine Deficiency in a Nondrinker and Secondary Pulmonary Edema after Thiamine Replenishment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7028406/

 

Expand Quote  

Thank you for responding. I am definitely going to look into this. I take a Vitamin B-12 every day, but not the B-1 (Thiamine). I am also not absorbing iron. I am taking a supplement for that every day. This whole celiac thing is very complex and many primary doctors do not understand it, which is very sad. Now I have to be my own advocate and I love this celiac.com forum. I just discovered it today!  

[NinaS]

  On 8/16/2023 at 1:30 PM, B.J. said:

Thank you for responding. I am definitely going to look into this. I take a Vitamin B-12 every day, but not the B-1 (Thiamine). I am also not absorbing iron. I am taking a supplement for that every day. This whole celiac thing is very complex and many primary doctors do not understand it, which is very sad. Now I have to be my own advocate and I love this celiac.com forum. I just discovered it today!  

Expand Quote  

Also we do not absorb vitamins like other people , due to damage of celiac

So I fell cocktails of vitamins would Work better for us vs intake by mouth till  stomach is not healthy enough 

[B.J.]

  On 4/24/2023 at 1:39 AM, knitty kitty said:

Neuropathy is a classic symptom of Thiamine deficiency.  Doctors do not recognize Thiamine Deficiency Diseases yet.  

I had improvement in my peripheral neuropathy, in my feet and hands within an hour of taking Thiamine Hydrochloride.

@trents,

Naltrexone can be used to help with pain...

The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

 

@A. Alber,

Gout is another Thiamine Deficiency Disease.  Thiamine is needed to clear uric acid.  

The World Health Organization recommends trying 500 mg per day of Thiamine Hydrochloride for several weeks.  If improvement is seen, a thiamine deficiency can be diagnosed.  

Thiamine is safe and nontoxic and water soluble (easily excreted in urine).   Doesn't hurt to try it.  No harm, no foul.

Expand Quote  

Thank you both. Question---can thiamine hydrochloride be purchased a pharmacy OTC or is it a prescription from a doctor?

 

  On 8/16/2023 at 1:42 PM, NinaS said:

Also we do not absorb vitamins like other people , due to damage of celiac

So I fell cocktails of vitamins would Work better for us vs intake by mouth till  stomach is not healthy enough 

Expand Quote  

Thank you Nina!

 

[knitty kitty]

@B.J.,

Thiamine Hydrochloride and Benfotiamine is available over the counter and online. 

Doctors can also give thiamine hydrochloride in an IV.  Since you may have electrolyte imbalance due to the water pill, you may want your doctor to give an IV under medical supervision.  Magnesium and potassium help Thiamine work properly.  

Thiamine is harmless and nontoxic even in high doses.  No harm, no foul.  

My doctors were clueless about Thiamine deficiency, so I took High dose Thiamine Hydrochloride at home.  My symptoms improved within an hour.  Benfotiamine is helpful in glucose regulation for my diabetes.

Keep us posted on your progress!