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

Bad Side Effects To Liver Cleanses And Then Some...


Nanjkay

Recommended Posts

Nanjkay Apprentice

Hi all-

I read a thread from two years ago, but I thought i would start a new one.

I am a little scared. Any herb, cleanse I try gives me terrible symptoms and I am very worried about my liver. In the past two months I have tried the following;

Nystatin, Glutathione cream because of terrible side effects, I tried a homeopathic liver cleanse called Apo-Hepat by Pekana, and then Itires by Pekana which is lymphatic drainage.

In each case I started with either worse than usual widespread body pain ( I have fibromyalgia) or overwhelming fatigue which leads to heavy, heavy limbs like I can't move and then a heavy feeling in my chest like a boulder is resting on it.

I then tried to soothe my liver with a mushroom complex which I only started yesterday and the symptoms are back.

I am concerned for three reasons-

1) A year ago, i tried the mushroom complex and didn't have this reaction, 2) My naturopath has not seen symptoms like this before and 3) what does this say about my liver and my ability to cleanse and how will I ever get heavy metals out of me if I can't even do a gentle cleanse?

It would make me feel so much better if any one else has experienced this and can shed some light. What does it all mean?

Thanks for any help or input!

Nancy


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie
Hi all-

I read a thread from two years ago, but I thought i would start a new one.

I am a little scared. Any herb, cleanse I try gives me terrible symptoms and I am very worried about my liver. In the past two months I have tried the following;

Nystatin, Glutathione cream because of terrible side effects, I tried a homeopathic liver cleanse called Apo-Hepat by Pekana, and then Itires by Pekana which is lymphatic drainage.

In each case I started with either worse than usual widespread body pain ( I have fibromyalgia) or overwhelming fatigue which leads to heavy, heavy limbs like I can't move and then a heavy feeling in my chest like a boulder is resting on it.

I then tried to soothe my liver with a mushroom complex which I only started yesterday and the symptoms are back.

I am concerned for three reasons-

1) A year ago, i tried the mushroom complex and didn't have this reaction, 2) My naturopath has not seen symptoms like this before and 3) what does this say about my liver and my ability to cleanse and how will I ever get heavy metals out of me if I can't even do a gentle cleanse?

It would make me feel so much better if any one else has experienced this and can shed some light. What does it all mean?

Thanks for any help or input!

Nancy

Dear Nancy,

If you have celiac or are otherwise gluten sensitive, you should not be taking homeopathics that have alcohol in them, as the Pekana does. They are wonderful, but not for us as far as I can tell. I tried writing to them but they never responded. I couldn't take them either.

This could be a problem with some of the other remedies also. Many heavy metal detox regimes have gluten in them I found out later on. No wonder they never worked for me! You may have some similar issues going on.

I got relief finally when I started taking co-enzyme B vitamins. They made all the difference since they are more absorpable than normal B vitamins. They go directly into your blood stream. Best taken away from food. I avoid the ones with sorbitol however since that sometimes has gluten in it. I take the Country Life brand and have had good success with them. B vitamins help with many of the enzymatic processes you need in your body to be OK. Esp. the nervous system as well as digestive etc. etc.!! If you are having the problems you say you have this could be part of it. I found these wonderful B vitamins made it so I could handle various detox regimes. Plus it made my heart stop acting up, as it sound like yours too now is.

You might want to just take the straight European detox herbs and see if they work for you. You could start slow and work yourself up. Dandelion and yellow dock combo is very good and usally safe for anyone. Best to alternate them every other week with Milk Thistle caps (silymarin) and Oregon Grape Root. I use 2 tablespoons of each in 2 quarts of water and put them on a slow boil for 20 to 30 minutes. At first just use in 1/2 a mug with the rest water. Then as the amount starts to get used up, add more water to the brew and reboil. Note that milk thistle does not brew up in water. Its better to take the caps since alcohol tinctures for us are OUT.

You can also put the herbs in a coffee maker, though you'll want to put the herbs straight in the pot. Let it brew for a long time before using and then just have on warm. Keep adding water when it gets to the half way mark. The virtue of this method is that you won't forget the pot and ruin it plus its always there when you need it.

If you have low blood pressure and low adrenals etc. I find adding licorice root to the mix makes it taste better. Plus its good for your glands etc.

Pao de arco will help counteract a fungal infection plus help with elimination. It too can be added to the brew or you can take caps. I noticed you were taking nystatin--so thought perhaps you are having yeast overgrowth. Barberry (start small doses) will help with killing both yeast and bad bacteria. I just get this powdered and adde a small amount to my cup of brewed tea, though you can also put it in the brew. Just make sure its not too strong for you first. There are other remedies along this line also if you want to pursue that.

However if you do have afungal infection, taking more fungus products like mushrooms might not be the best thing. Plus its best to avoid remedies that boost your immune system, since if you have celiac its very likely you have an over-active immune system, not an under-active one! this actually is one reason why for most of us exercise is so key to help calm down the dangers of an over active immune system with no place to go since most of us no longer hunt for dinner.

When you have already done the above for a while then add Cleavers. Its the best lymphatic drain I know plus its cheap and easy to take as a tea. Just pour boiling hot water over the leaves.

Do not forget the virtues of exercise and saunas. They can really help. I couldn't take a sauna without fainting. But I completely changed after I started taking the co-enzyme B vitamins. Now its a snap. Make sure you drink lots of water.

Also mud packs with a little lemon juice or (non glutenous) apple cider vinegar mixed in with the water will pull out all kinds of toxins through your skin, thus bypassing the liver and intestines. You still get tired after, but its a lot safer if you have really bad stuff in there. You should start with mud packs just on your hands and feet, 20 minutes at a time once every few days.

It helps too to eat lots of green vegetables.

As far as the fibro., I too was getting that. I found the best thing I could do against it was to avoid all trace glutens, including lipstick, lotions, soaps, anything with tocopherol in it that is cosmetic since it is made from pure wheat germ, gluten contaminated cooking gear and chopping boards, toasters etc. I recently reacted to a toaster oven -- which I really wasn't expecting since it had been cleaned and we cooked the fish on aluminum foil.

And wash your hands after handling dog or cat food. Try to get a kind that is gluten free. However I have yet to find any that doesn't have tocopherol in it. Tocopherols are OK if gluten free, but believe me I doubt they use that more expensive kind of vitamin E for pet food.

It has made a huge difference for me to be off all those things (and more). See the list they have here in the general pages to avoid gluten contaminants. Helps too to make sure your significant other brushes his or her teeth and washes also with gluten free soaps etc. Taking high quality gluten free acidophilus also helps as do the digestive enzymes--bromelain/papain and pancreatin.

Hope this helps!

Bea

Rachel--24 Collaborator

Nancy,

I have had similar experiences but I'm not sure if its for the same reasons.

My system is very overwhelmed so that many things which (under normal circumstances) should be beneficial actually cause more stress.

For example...glutathione. I cant tolerate it because my sulfur metabolism is impaired. If not for that...obviously glutathione would be very beneficial as it is the body's primary antioxidant and critical for detoxification. However, if sulfur metabolism is down....it can cause more harm than good.

With sulfur metabolism being impaired my sulfation pathway is also impaired. This means that one critical enzyme is deficient...as that enzyme relies on the body's ability to convert sulfur to sulfate. As a result of this enzyme deficiency my body is unable to metabolise certain food chemicals....including salicylates.

Salicylates are found primarily in spices, herbs, fruits and veggies. So by taking these things in I would actually be increasing the toxicity in my body and therefore placing an even heavier burden on my liver. By taking an herbal cleanse I would not be helping my liver....I would be causing more stress as the toxicity builds. If salicylates cannot be metabolised they are toxic to the body....if they cannot be processed out they accumulate and cause symptoms.

I do not have Celiac and have not had alot of problems with homeopathic remedies. I dont take the drops without first letting them sit in warm water as this can allow for much of the alcohol to evaportate (I dont tolerate alcohol at all).

If you dont typically have any of those symptoms when consuming spices, herbs or fruits then I would not think that your problem would be related to salicylates.

In that case you may need to figure out what is going on as far as underlying issues, possible imbalances or other factors which may be causing these problems.

I'm more inclined to believe that the negative reactions are caused by an intolerance of these treatments.

I do MUCH better since all of these things came to light and I have a better understanding of what my body will accept and what it wont. I cant force my body to do things which it is not able to do at this time. So I actually seem to detox alot better without taking any cleanses or anything else which would furthur inhibit my sulfation pathway.

Also, I've had lots of energetic testing which was able to let me and my Dr.'s know what my body needs/wants....and what it doesnt. So that has helped tremendously. I would highly recommend it if you can find a very experienced doctor/practitioner who does this type of testing.

purple Community Regular

I am not sure if this will help... 4 months ago my 19 yr old daughter was diagnosed allergic to gluten by an osteopath. I thought she had endometriosis. I studied it alot and she had all the symptoms. The doc said it was gluten. Treatment: no more gluten, he gave her complex vitamin B with magnesium, weekly glutathione injections. Her extreme PMS is almost normal again(she had cramps during the month too). The glutathione was to help her liver b/c it wasn't doing its job. Her allergies have calmed down now. She had greasy hair after the first injection. The doc said the liver drains at the back of the head. Her hair stooped being greasy. No surgery! Now to stick to the gluten-free diet and to go gluten-free for the other family members.

Nanjkay Apprentice
I am not sure if this will help... 4 months ago my 19 yr old daughter was diagnosed allergic to gluten by an osteopath. I thought she had endometriosis. I studied it alot and she had all the symptoms. The doc said it was gluten. Treatment: no more gluten, he gave her complex vitamin B with magnesium, weekly glutathione injections. Her extreme PMS is almost normal again(she had cramps during the month too). The glutathione was to help her liver b/c it wasn't doing its job. Her allergies have calmed down now. She had greasy hair after the first injection. The doc said the liver drains at the back of the head. Her hair stooped being greasy. No surgery! Now to stick to the gluten-free diet and to go gluten-free for the other family members.

I have endometriosis and severe PMS. I have been off gluten for 9 months now and very little has improved other than my vestiblular neuritis. I am much older than your daughter, so healing for me will take much longer. But, thanks.

Nanjkay Apprentice
Nancy,

I have had similar experiences but I'm not sure if its for the same reasons.

My system is very overwhelmed so that many things which (under normal circumstances) should be beneficial actually cause more stress.

For example...glutathione. I cant tolerate it because my sulfur metabolism is impaired. If not for that...obviously glutathione would be very beneficial as it is the body's primary antioxidant and critical for detoxification. However, if sulfur metabolism is down....it can cause more harm than good.

With sulfur metabolism being impaired my sulfation pathway is also impaired. This means that one critical enzyme is deficient...as that enzyme relies on the body's ability to convert sulfur to sulfate. As a result of this enzyme deficiency my body is unable to metabolise certain food chemicals....including salicylates.

Salicylates are found primarily in spices, herbs, fruits and veggies. So by taking these things in I would actually be increasing the toxicity in my body and therefore placing an even heavier burden on my liver. By taking an herbal cleanse I would not be helping my liver....I would be causing more stress as the toxicity builds. If salicylates cannot be metabolised they are toxic to the body....if they cannot be processed out they accumulate and cause symptoms.

I do not have Celiac and have not had alot of problems with homeopathic remedies. I dont take the drops without first letting them sit in warm water as this can allow for much of the alcohol to evaportate (I dont tolerate alcohol at all).

If you dont typically have any of those symptoms when consuming spices, herbs or fruits then I would not think that your problem would be related to salicylates.

In that case you may need to figure out what is going on as far as underlying issues, possible imbalances or other factors which may be causing these problems.

I'm more inclined to believe that the negative reactions are caused by an intolerance of these treatments.

I do MUCH better since all of these things came to light and I have a better understanding of what my body will accept and what it wont. I cant force my body to do things which it is not able to do at this time. So I actually seem to detox alot better without taking any cleanses or anything else which would furthur inhibit my sulfation pathway.

Also, I've had lots of energetic testing which was able to let me and my Dr.'s know what my body needs/wants....and what it doesnt. So that has helped tremendously. I would highly recommend it if you can find a very experienced doctor/practitioner who does this type of testing.

Rachel-

Thanks for getting back to me. I have seen your picture a lot and have read many of your posts on the thread "OMG...I think I am on to something." I think it was your posting that I learned about high oxalate foods - as I have fibromyalgia. Anyway, I always remember you because I too, have Graves and have had radioactive iodine.

You wrote a lot of good info for me...a lot for me to digest (no pun intended). And from reading your posts in the past, I have a ton of questions for you.

1) How did you find out about the sulphur metabolism? What kind of doctor, a naturopath? And where are you located?

2) How do you find a practitioner who does energetic testing?

3) Also, I just think I had a little bout of gout in my knee, so that sheds more light on what is going on with my kidneys, etc.

I thank you for saying that the problems I am having are more from the form of treatmen and not necessarily with the liver as a whole. I have had many liver enzyme panels done, all fine. So this is a relief.

Because of the Grave's and the glutathione problems i am sure we share others as well. I don't know where I weigh in on the Celiac scale, but I will stay off of gluten forever. Would you be open to e-mailing directly?

Thanks again-

Nancy

Nanjkay Apprentice
Dear Nancy,

If you have celiac or are otherwise gluten sensitive, you should not be taking homeopathics that have alcohol in them, as the Pekana does. They are wonderful, but not for us as far as I can tell. I tried writing to them but they never responded. I couldn't take them either.

This could be a problem with some of the other remedies also. Many heavy metal detox regimes have gluten in them I found out later on. No wonder they never worked for me! You may have some similar issues going on.

I got relief finally when I started taking co-enzyme B vitamins. They made all the difference since they are more absorpable than normal B vitamins. They go directly into your blood stream. Best taken away from food. I avoid the ones with sorbitol however since that sometimes has gluten in it. I take the Country Life brand and have had good success with them. B vitamins help with many of the enzymatic processes you need in your body to be OK. Esp. the nervous system as well as digestive etc. etc.!! If you are having the problems you say you have this could be part of it. I found these wonderful B vitamins made it so I could handle various detox regimes. Plus it made my heart stop acting up, as it sound like yours too now is.

You might want to just take the straight European detox herbs and see if they work for you. You could start slow and work yourself up. Dandelion and yellow dock combo is very good and usally safe for anyone. Best to alternate them every other week with Milk Thistle caps (silymarin) and Oregon Grape Root. I use 2 tablespoons of each in 2 quarts of water and put them on a slow boil for 20 to 30 minutes. At first just use in 1/2 a mug with the rest water. Then as the amount starts to get used up, add more water to the brew and reboil. Note that milk thistle does not brew up in water. Its better to take the caps since alcohol tinctures for us are OUT.

You can also put the herbs in a coffee maker, though you'll want to put the herbs straight in the pot. Let it brew for a long time before using and then just have on warm. Keep adding water when it gets to the half way mark. The virtue of this method is that you won't forget the pot and ruin it plus its always there when you need it.

If you have low blood pressure and low adrenals etc. I find adding licorice root to the mix makes it taste better. Plus its good for your glands etc.

Pao de arco will help counteract a fungal infection plus help with elimination. It too can be added to the brew or you can take caps. I noticed you were taking nystatin--so thought perhaps you are having yeast overgrowth. Barberry (start small doses) will help with killing both yeast and bad bacteria. I just get this powdered and adde a small amount to my cup of brewed tea, though you can also put it in the brew. Just make sure its not too strong for you first. There are other remedies along this line also if you want to pursue that.

However if you do have afungal infection, taking more fungus products like mushrooms might not be the best thing. Plus its best to avoid remedies that boost your immune system, since if you have celiac its very likely you have an over-active immune system, not an under-active one! this actually is one reason why for most of us exercise is so key to help calm down the dangers of an over active immune system with no place to go since most of us no longer hunt for dinner.

When you have already done the above for a while then add Cleavers. Its the best lymphatic drain I know plus its cheap and easy to take as a tea. Just pour boiling hot water over the leaves.

Do not forget the virtues of exercise and saunas. They can really help. I couldn't take a sauna without fainting. But I completely changed after I started taking the co-enzyme B vitamins. Now its a snap. Make sure you drink lots of water.

Also mud packs with a little lemon juice or (non glutenous) apple cider vinegar mixed in with the water will pull out all kinds of toxins through your skin, thus bypassing the liver and intestines. You still get tired after, but its a lot safer if you have really bad stuff in there. You should start with mud packs just on your hands and feet, 20 minutes at a time once every few days.

It helps too to eat lots of green vegetables.

As far as the fibro., I too was getting that. I found the best thing I could do against it was to avoid all trace glutens, including lipstick, lotions, soaps, anything with tocopherol in it that is cosmetic since it is made from pure wheat germ, gluten contaminated cooking gear and chopping boards, toasters etc. I recently reacted to a toaster oven -- which I really wasn't expecting since it had been cleaned and we cooked the fish on aluminum foil.

And wash your hands after handling dog or cat food. Try to get a kind that is gluten free. However I have yet to find any that doesn't have tocopherol in it. Tocopherols are OK if gluten free, but believe me I doubt they use that more expensive kind of vitamin E for pet food.

It has made a huge difference for me to be off all those things (and more). See the list they have here in the general pages to avoid gluten contaminants. Helps too to make sure your significant other brushes his or her teeth and washes also with gluten free soaps etc. Taking high quality gluten free acidophilus also helps as do the digestive enzymes--bromelain/papain and pancreatin.

Hope this helps!

Bea

Bea-

Thanks for all of your help. I do some of the things you wrote about. And I am a bit confused about the Pekana stags. They claim to be gluten free and for a time their renal remeday - Renelix helped me. I think I just had my first case of gout so who knows if that was helping me. I went on the Renelix because my amino acid panel showed my Cystiene levels as very high.

I do take milk thistle and have for years but because so much is going on right now, I am stopping almost everything and reintroducing one at a time.

You mentioned the co-enzyme B vitamins. Is there any downside to taking activated B vitamins and if not why doesn't everyone take them that way? I only ask because I am afraid to be a guinea pig of painful side effects again. The brand you buy by Country Life, I assume you feel confident about their gluten-free status. (I usually buy supplements including my B complex from Pure Encapsulations or Freeda as they make me feel very secure regarding gluten-free)

You mentioned so many things to help me and I appreciate it very much. One category I have yet to take on is the skin care products. I only use Burt's bees lipstick but I should look up the tocopherols. How did you find out these had gluten in them? Many of my supplements have this ingredient in them but say they are gluten-free.

Anyhow, I am more overwhelmed than I can say especially when I feel this badly and start panicking and looking for answers. Would you be open to talking or e-mailing directly?

Nancy


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



Celiac.com Sponsor (A8-M):



  • 8 years later...
TerPar Newbie

Why should celiac people NOT take homeopathics containing alcohol? 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.