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Joint Pain


Lgood22573

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Lgood22573 Rookie

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?


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Mskedi Newbie

I'm going to be making an appointment tomorrow to see my doctor about my knee pain. Last time I was there she messed around with my knee, didn't find anything special, and told me to work on the muscles around my knee. I have, and this knee pain is STILL both erratic and annoying. It follows no pattern -- sometimes it will hurt as I walk upstairs, sometimes as I walk across a flat surface, sometimes as I sit in a chair. It's truly bizarre. Sometimes it pops, sometimes it's just a throbbing pain, and sometimes it's debilitating. And last week I felt it in my left knee, which has never hurt before. I also have some wrist and thumb pain that seems to mimic arthritis, mostly on my right side, but sometimes on the left.

I've tried to match it up with accidental glutenings to see if that could be the cause, but I haven't had much luck there. (I did get glutened on Friday, and my knee does hurt a ton this weekend, but it also hurt Friday morning before said glutening). I kind of hope it's the gluten because then one thing could be the cause of all my woes and I can control it, but I really think my body is just broken a bit. We'll see.

sb2178 Enthusiast

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Join pain, definitely a problem. Hands and feet are the worst (sometimes I even avoid walking), then hips and occasionally a shoulder. No popping and only very mild swelling, though.

captaincrab55 Collaborator

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Lgood, Your not alone... I've suffered with shoulder, neck, arm, wrist, hand, knee, leg, foot, jaw and finger pain.... I've complained about finger pain for years... It felt like I had 10 thumbs instead of 2... I had a MRI of my shoulder and nothing stood out as a problem...My shoulder bothered me since I was in my 20s and that pain went down to 10% since going gluten-free.... I still have other issues that I'm dealing with, but life is much better then a year ago....
k2626 Explorer

I get migratory deep stinging pains in my joints, but also loose joints. My right knee is shot, sometimes I can hardly walk. Also I get a lot of joint grinding. At its worst, my joints would crack hundreds of times per day (no joke), along with muscle twitching all over

Gluten tests are tomorrow....so we will see if this is the reason why

Lgood22573 Rookie

Thanks for the replies. I'm so uncomfortable- ugh.

Lgood22573 Rookie

Last night got so bad, I thought I was going to end up going to the hospital. Today I'm back to normal. I VOW to be more diligent in reading labels!


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lynnelise Apprentice

I experience joint pain mainly in my hip, knee, and shoulder. It hurts a lot worse after getting glutened. I also experience loud popping joints. I sound about 90 years old. I suffered terrible TMJ and even have a stupid $200 mouthguard for it but I've noticed now that when I go long stretches without being contaminated it goes away!

YoloGx Rookie

Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

eastvangal Newbie

Thank you for the information on silica. Over the past year and a half I have been trying all sorts of mainly physical means to relieve chronic right inner "chicken wing" pain in my right upper back (worse when glutened)- stretching, exercising, yoga, ice packs, massage, rolling on an egg shaped rock (very effective), a new bed and mattress, and ibuprofen, as well as other supplements, but never heard of slicia. Thanks again. :)

eastvangal Newbie

I don't know if you'll see this, but could you tell me what is msm?

ali11 Newbie

I'm going to be making an appointment tomorrow to see my doctor about my knee pain. Last time I was there she messed around with my knee, didn't find anything special, and told me to work on the muscles around my knee. I have, and this knee pain is STILL both erratic and annoying. It follows no pattern -- sometimes it will hurt as I walk upstairs, sometimes as I walk across a flat surface, sometimes as I sit in a chair. It's truly bizarre. Sometimes it pops, sometimes it's just a throbbing pain, and sometimes it's debilitating. And last week I felt it in my left knee, which has never hurt before. I also have some wrist and thumb pain that seems to mimic arthritis, mostly on my right side, but sometimes on the left.

I've tried to match it up with accidental glutenings to see if that could be the cause, but I haven't had much luck there. (I did get glutened on Friday, and my knee does hurt a ton this weekend, but it also hurt Friday morning before said glutening). I kind of hope it's the gluten because then one thing could be the cause of all my woes and I can control it, but I really think my body is just broken a bit. We'll see.

Your knee pain sounds kind of like mine. My left knee has been hurting for over a year now, and my right for over 6 months. I have tried everything for it and nothing has touched the pain, and I've seen many different doctors who've all eventually said that I shouldn't still be in pain, but they don't know how to help me so they've let me go. But I also different types of pain, in different locations, and at seemingly random times. I'm really hoping that going gluten-free will be the answer. I've only been off gluten for only 6 days, and so far I really haven't seen any improvement. I'm hoping maybe the knees will just take longer to see improvement, even though my stomach symptoms are already doing better.

bridgetm Enthusiast

I don't know if you'll see this, but could you tell me what is msm?

MSM stands for methylsulfonymethane. It's reported to act as an anti-inflammatory, but its effectiveness is still debated. MSM is often added to those glucosamine and chondroitin joint supplements. Wiki has a pretty good summary if you're looking for more (I had to check it again; been a while since I've looked into that).

Are you looking into taking those supplements?

I tried Osteo Bi-Flex for about 2 months (January through Feb of this year before I went gluten-free). It didn't seem too effective on my chondromalacia and other patella symptoms and I ended up having more stomach pain from it. It aggravated the damage a month-long high-dose regimen of ibuprofen did to my stomach. However, I know a lot of people who swear by it. For the record, most of them are over 50 and I'm only 20 so it could have been a different problem.

Lgood22573 Rookie

My doctor pushes fish oil. I do think my joints feel better from it. Could be the placebo effect. I don't have pain unless I actually get into gluten. Normal every day is fine.

BethM55 Enthusiast

Wow, this all sounds a lot like fibromyalgia pain. Suppose it could all be related??? My general body aches and joint pain and brain fog are definitely less when I am vigilant about staying gluten free. I made a few more changes at home, including my own, labeled peanut butter jar and butter tub, which has helped.

Yolo, what brand of silica do you use? I'd like to try that. It would probably help with peeling, splitting fingernails too. There is an excellent discussion about nail problem on the board, too.

YoloGx Rookie

I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Black Sheep Apprentice

I think I'd like to try silica, as I have joint and back pain, too. I also have plantarfaciitis in both feet, and yesterday, after having been on my feet for a whopping couple of hours :rolleyes: , not only were my feet killing me but my hip, knee, and ankle joints were, as well. and the bones in my feet. Ugh. I try to stay away from drugs as much as I can, but last night before bed I gave in and took Tylenol.

Maybe silica would help. Btw, how much do you take, and how often? Do you just follow the directions on the bottle?

BethM55 Enthusiast

I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Bea, thanks for your reply. Have you tried drinking herbal infusions for the silica? Horsetail? Oat straw? Just wondering, looking for ways to make remedies at home.

I've never tolerated B-complex vitamins well, usually ended up with nausea from them. How are the co-enzyme B complex vitamins different?

I'm intrigued with your success with these things. BTW, I'm just up the Peninsula from you, in Pacifica.

--Beth.

Lynayah Enthusiast

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

Yes, BIG TIME. Feet, hips, hands and lower back are particularly intense.

Lynayah Enthusiast

Joint pain is very common with celiac--both due to inflammation from glutening as well as general poor absorption of minerals which often causes hypermobility making it easy to overstress joints. Vitamin D is important too. What has made a huge dif. for me is to take liquid silica drops as well as msm along with all my other minerals. Its good for building collagen as well as helping osteoblasts create bone. I can now do push ups etc. whereas before absolutely not--in addition my neck and back are way better too. This is amazing actually since I am now 60 and have had this problem all of my life... I just remembered seeing a panel I had done years ago that said I was low on silica...I finally decided to try taking some and yay what a difference!

Bea

Bea, thank you!

YoloGx Rookie

Bea, thanks for your reply. Have you tried drinking herbal infusions for the silica? Horsetail? Oat straw? Just wondering, looking for ways to make remedies at home.

I've never tolerated B-complex vitamins well, usually ended up with nausea from them. How are the co-enzyme B complex vitamins different?

I'm intrigued with your success with these things. BTW, I'm just up the Peninsula from you, in Pacifica.

--Beth.

Hi Beth and all,

I am glad my experience interests you. The following will I hope answer most of your questions.

Horsetail just might work--it does have tons of silica in it. I have no idea how much to take--so I suggest trying trial and error and see if its enough help\. I would stay away from oatstraw if it is related to the wheat family. Is it?? Or is it just coincidental about the name?

Silica drops are pretty natural however. The bottle says just take x no. of drops a day (it varies depending on the brand). I have been taking twice the recommended amount, i.e., I take the regular amount twice a day. Graeme just follows the directions and it seems to be working for him, so I may be overdoing it. I think I should drop the dosage down probably. I just was so anxious at first to have more minerals due to this problem having been so long term for me.

The msm I think is also important, at least for me. As is the E-zorb for the calcium (I get it from Elixer Industries out of L.A.--just Google it and you will find it with lots of info about it. The Chinese invented it some years ago due to 20% of their population having a real a problem with poor calcium absorption). I have noticed a real negative difference when I go off of it after a couple of weeks or so and just use the calcium citrate instead. Many folks with celiac do not need the E-zorb. I have had celiac my whole life however and was put back onto gluten when I was four years old -- so its a very long term situation I have been dealing with and no doubt I have some semi permanent scarring despite all the enzymes and fibronylitic agents I take like nattokinase.

Besides my bones, hair, nails, teeth and collagen having been negatively impacted, lack of sufficient minerals also seem to have been very hard on my nervous system. Now people remark how calm I am. If I get glutened however I often get migraines and can easily become very irritable and mentally confused and out of it.

I also seem to need to take magnesium citrate. I just use the powder from Now. Otherwise I still get constipated. It is also supposed to help with all kinds of enzymatic processes in the body and helps balance the calcium. Historically I have also been taking Concentrace Trace Mineral drops for some years to help with my electrolyte balance which otherwise is off and too low. I just ordered a new kind of trace minerals however online.

I also eat a lot of home made yogurt I ferment for 24 hours in order to get more calcium while avoiding the lactose which I still seem to be allergic to. In addition the casein in the yogurt is also great for repopulating good bacteria in the gut -- plus I was reading the casein (in the yogurt) helps with the body producing its own co-Q10 and thus mitochondrial energy production (assuming of course you are not allergic to the casein of course!). This is important particularly as one ages I have discovered.

As far as where I get a lot of my other supplements, I often order them through herbs-pro. The prices are often inexpensive compared to store bought at least, esp. if I make a largish order. I tend to favor NOW products due to them being mostly gluten free (gluten-free). Country Life is as I said good for the co-enzyme B's. They are also gluten-free. Can't say if you all can tolerate them but they are fine for both me and Graeme--and Graeme had trouble with many B vitamin brands. There is some soy Lecithin in them however which could be a problem for some. I couldn't handle the sorbitol that the sublingual B's usually have.

If you can't take B vitamins, I suggest you eat a lot of chicken liver or calves liver and have more fermented food if you can tolerate it. I hear home made sauerkraut is very healing and helpful. You can make a version that is just inoculated with yogurt or acidophilous. If you can tolerate braggs apple cider vinegar that may help too.

In addition, as far as all this goes (concerning fibromyalgia like symptoms), I find having freshly blended (made in my blender in other words) vegetables as a pick me up. I remember a biologist (who massively resurrected her health after being allergic to almost everything) say that taking fresh uncooked chlorophyll like that is like getting a blood transfusion. It helps regulate all kinds of systems as well as gives extra energy and cleanses the blood. Juicing is nice too, but the blended veggies also give us the roughage we need. I find blended vegies also helps me get over any CC problems from gluten I might have faster--along with the yogurt and things like bromelain/papain caps (or eat fresh pineapple and papaya) and detox tea (I have talked about detox tea endlessly elsewhere, just do a search on it here).

Hope all this helps. It amazes me how all this stuff I thought was just me and my own peculiarities are not actually that uncommon!

Bea

PS--Beth I am thinking of starting some kind of support group one of these days when I have a little more time. Maybe we should talk sometime? And yes I love herbs too. Couldn't do without them...

BethM55 Enthusiast

Bea, a support group is an excellent idea. Have you thought about how to go about starting it?

I hadn't thought about oat straw as possibly containing gluten. It's the dried stalk of the oat plant. I'll see what I can find out about that. I'll be offline most of the weekend, though, so it will have to wait til next week.

--Beth.

YoloGx Rookie

Bea, a support group is an excellent idea. Have you thought about how to go about starting it?

I hadn't thought about oat straw as possibly containing gluten. It's the dried stalk of the oat plant. I'll see what I can find out about that. I'll be offline most of the weekend, though, so it will have to wait til next week.

--Beth.

Beth,

I just looked up oatstraw and it is part of the oat plant. I personally wouldn't touch it. Years ago I tried using oats as a kind of sedative to help me sleep at night. After a few months of this I ended up getting the shakes as well as worsened health in general. Out of that experience I eventually figured out that I had celiac from reading the Merck Manual and then going off most gluten for three months (after which my fingernails and teeth got a little stronger--which I took as a sign I did probably have it), although I didn't realize the full extent of it. The shaking scared me.

Unfortunately Kaiser was of no help even though I told them my suspicions--even after I had a frozen shoulder etc. later on. 4 years ago or so my nerves were diagnosed by an alternative doctor (from blood lipid tests) as only having 50% of the usual thickness of the myelin sheath on them. Fortunately the co-enzyme B vitamins helped counteract some of the worst problems from that (racing heart etc.). But going off all trace glutens did most of the rest--though as said the extra minerals (and oils) were also really needed.

I have had to be a health sleuth--and have actually gotten pretty good at it. Its for this reason I want to become some kind of healer...which I am working on developing these days.

Bea

Korwyn Explorer

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints. I go from feeling completely normal to being an arthritic crumpled up popping, hurting, barely able to function debilitated person. Not only do they hurt, but they must actually be swollen or something because they pop and make funny noises. It hurts so bad I can't lift a jug of milk. It seems to affect my knees, hips, and elbows the worst. I am a violinist and it is AGONY when this happens. I am wondering what is going on to make them not only hurt, but make noise, and loose function. Does anyone know about this, or have this problem?

I don't have much joint pain from glutening, but my boss is so sensitive that he has had to call in sick a couple of times due to the joint pain and swelling after being glutened. The last time (that I know of) he had three bites of mole sauce at a Mexican restaurant, then someone told him the waiter had been wrong and they used flour not corn starch. He said he couldn't even get out of bed by the next morning. I guess his wife is even more sensitive than he and also gets severe joint pain. Gluten is an inflammatory agent, and RA doctors that are current on their journals and open to the idea of dietary agents affecting health often put their RA patients on a gluten, casein, nightshade, and sometimes soy free diet right out the gate. There are a couple people where I work who are on a similar diet and their arthritic pain has been eliminated in one case, and incredibly reduced in another.

* Edited for clarity.

Lynayah Enthusiast

I use the Jarro liquid silica brand (Jarrosil -- I think). Previously I used "Biosil." Both work.

I continue to be amazed at the improvement I am noticing... I used to peel my nails in the old pre-supplement and pre-awareness days that the wheat family bothered me. I improved but had to go off all trace gluten to do better. And even with all my other mineral and vit. D supplements after going off all trace gluten, my joints were still too easily messed up by any physical strain at all.

Yes this looked and felt very much like fibromyalgia... I think it often goes with joint hyper-flexibility which I have had too. Now with the silica even my neck and trick back as well as old hip injury areas have stabilized finally and are doing well. It is amazing! Of course I still exercise--but now that means I can actually do so...and if I don't, it isn't as much of an emergency.

Interestingly, my good celiac co-worker and house buddy started taking the silica and msm as well as liquid sea minerals, magnesium citrate and E-zorb (best absorbaple Calcium you can get online) and he too has stabilized and is no longer having to constantly see the chiropractor!! Its worth the extra pennies just for that alone...

By the way, taking co-enzyme B vitamins on an empty stomach also help me and my buddy immensely too. I don't seem to absorb regular b vitamins very well--nor does he. But these co-enzyme ones by country life bypass the usual route and go directly into the blood stream. Great for the nerves, brain, heart, restless legs, wired forearms, anxiety and poor memory etc.!

Bea

Hi, Bea!

For ease of reference: Would you mind indulging an attention-challenged, brain-fogged "old lady" and list every supplement you speak of here, with the brand name next to it?

ABC Multi - Funforyou Labs

DEF Calcium - Horsepills, Inc.

Oh, that would be so very much appreciated. Please feel free to add any additional supplements you use that may not have been mentioned here. THANK YOU MY FRIEND!

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    • 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 
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