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I Was So Hungry And Afraid I Am Really Sad Right Now


Cinnamon7778

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Cinnamon7778 Rookie

I am feeling really sad right now. I have never experienced hunger like today. I took my 10 year old daughter to a dr appt. this morning about 8:30 am. However, I decided to eat some rice chex with rice milk before leaving 8:am. I actually ate 2 bowls to ensure that I would be alright. I am SO GLAD THAT I DID!!!!!!! Around 11:30, we were racing down the subway stairs (15 steps) and all of a sudden I felt exhausted. I started shaking and trembling all over and felt extremely hungry. A hunger like no other. The train came and we reached our stop. I was out of breath, walking very slowly up the stairs and by the time I reached the top I had to lean on my daughter for support. She was concerned and so was I!! I felt as if I was going to fall out. I have not been diagnosed by a dr but I know that I do have celiac disease. And I am not sure that I would want to consume foods that are harmful just to be diagnosed. I am a vegan for 3 years because of food allergies and now somethings else.....DAMN IT!!!! I was afraid and I am now. I know deep down inside that I am going to be ok!! But OMG, the need to deal with this is unbelievable. I ate some veggies and brown rice last night and experienced shortness of breath, intense itching, abdominal pain and discomfort blah blah blah. Anyway, I am grateful that there is somewhere like this site that I can vent, get the info and encouragement i need to move towards healing and wholeness

Thank you


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Mother of Jibril Enthusiast

Sorry you felt so bad this morning :(

The first thing that struck me about your story is that "Rice Chex with rice milk" is not very filling... even if you eat two bowls. It converts to sugar VERY quickly in your body, so you get a surge of energy and then a crash. If you want longer-lasting energy, try combining that with some kind of protein. Are you able to eat things like nuts, seeds, beans, chickpeas (hummus), etc...? What kind of allergies do you have? If you're committed to being a vegan, then IMO you should be very careful about keeping other sources of protein in your diet unless you know 100% for certain that you can't eat them (for example, a peanut allergy). Healthy fats can help too. Coconut milk is awesome :P

tarnalberry Community Regular

Yup, I would have been starving about two to three hours after eating something like that. HUGE blood sugar crash in the making if you're in the least bit sensitive to these things.

Try making sure that EACH meal you have - and you may need to eat multiple, small meals - is balanced for protein, fiber, fat, and complex carbs. (That means that something like rice chex is now a treat, not a staple. Think of it king of like candy, because it'll have a similar effect on your blood sugar.) Honestly, I have not been able to eat vegetarian, let alone vegan, for anything more than a day or two with both hypoglycemia, gluten intolerance, and casein intolerance. (Though, after five years off dairy, I seem to be able to handle some now; I think. I'm still exploring that.) That doesn't mean it's impossible, but it means that it can be very hard to get that much protein. You have to engineer your meals. But it is well worth it in how you will feel.

missy'smom Collaborator

I'll just echo what everyone has said about blood sugar and protein! Very important to get protein with each meal. I have always wanted to be a vegetarian and never cared much for meat most of my life but my body demands that I be a carnivore. Beans have protein but when it comes to blood sugar, count more as a carb-a slow digesting one and therefore a better choice but some people still need a separate protein source. Everyone's different, but you may find that you do better with animal protein, if not meat, then eggs. I've read alot and seen it on my glucose meter, that brown rice can affect blood sugar as much as white rice. Quinoa seems to be a better choice.

The Fluffy Assassin Enthusiast
get the info and encouragement i need to move towards healing and wholeness

This is just going to be the encouragement part; no doubt reinforcements will show up momentarily with the info. Hang in there, it gets better. I was starving hungry all the time for the first six months or so on the gluten-free diet. Nobody diagnosed me, either, but like you I'm pretty convinced that I'm celiac. I am concerned about the itching; you mean all over your body? You may have some allergy, but I don't know about anything allergenic in either brown rice or vegetables. Maybe there was some kind of cross contamination. Have you been tested for allergies?

Other point to make is that persons with celiac disease are often anemic, as are women, as are vegans, so you get the triple threat. Anemia could explain your extreme weakness. If you haven't given up meat for ethical reasons, you may want to reintroduce it to your diet for the nutrition. Or at least take a multivitamin and maybe an iron supplement. You might want to look into Omega 3 supplementation, too; very hard to get enough as a vegan.

Again, good luck, hope you're feeling better soon, and I hope a gluten-free lifestyle works out for you, and you attain the healing and wholeness that you seek.

OptimisticMom42 Apprentice

Same answer. I'm celiac and hypoglycemic. Honestly, if cereal and rice milk were my only options I would just go hungry. The carbs would raise my sugar only to let it drop two hours latter making me hungry and sick. Repeating this process every two hours all day would make me fat and tired. Been there.

The smart thing to do is to eat a good protein source every 6 to 8 hours. Currently I'm eating two eggs at breakfast, peanut butter at lunch, meat with supper and coconut milk before bed. Slowly loosing those extra pounds and feeling pretty good.

Hope you are feeling better and that everything was A OK at your d's dr. appt.

Cinnamon7778 Rookie

Thanks for the reply. I am actually allergic to coconut milk and and peanuts. I usually put bananas in my cereal however, just recently, I've been expereincing acid reflux after eating them. Hummus upsets my stomach. And I'm afraid to eat pumpkin or anything else because of what happened last night. This is like my firts week on a gluten, wheat, coconut and soyfree diet and its strange. I also just purchased several cookbooks and "first year living with celiac disease and gluten free by Jules E. Dowler Shepard and I can't wait until they get here!!

Sorry you felt so bad this morning :(

The first thing that struck me about your story is that "Rice Chex with rice milk" is not very filling... even if you eat two bowls. It converts to sugar VERY quickly in your body, so you get a surge of energy and then a crash. If you want longer-lasting energy, try combining that with some kind of protein. Are you able to eat things like nuts, seeds, beans, chickpeas (hummus), etc...? What kind of allergies do you have? If you're committed to being a vegan, then IMO you should be very careful about keeping other sources of protein in your diet unless you know 100% for certain that you can't eat them (for example, a peanut allergy). Healthy fats can help too. Coconut milk is awesome :P


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Takala Enthusiast

My dear, you have to eat something.

Or you won't be able to function, period. Especially on rice and sugar.

You can't starve yourself out of this. You need protein, fruit, vegetables, and fat at every meal if you are going to pull this off.

Otherwise, if you have allergies to the mainstay foods used in vegetarianism, and can't tolerate dairy for cheese and yogurt, you are going to have to add in something like meat, fish, or eggs.

Jestgar Rising Star
I have always wanted to be a vegetarian and never cared much for meat most of my life but my body demands that I be a carnivore.

me too. Still don't like meat, but I can't really function without it. I eat mostly fish and chicken. I actively dislike beef, although I do eat it, and pork is kinda gross, so I eat very little of that. Lots and lots of eggs though....

ravenwoodglass Mentor

In addition to the great advice you have already gotten, how long have you been gluten free and do others in your home still eat gluten? With your symptoms the night before and the reaction you had this morning I am wondering if gluten could have snuck in someplace.

Also what rice milk do you use? Rice Dream is not gluten free so if you are using that brand you may want to switch to perhaps Pacific brand. Rice Dream uses barley enzymes but don't list them on the label and although the company that produces it considers it gluten free many, many of us have had reactions.

Nancym Enthusiast

Yeah, sounds like blood sugar to me too. I don't have those issues when I eat a meal with plenty of fat and protein and limited carbs. There's a reason our ancestors ate bacon and eggs for breakfast.

missy'smom Collaborator

Not sure why you are avoiding pumpkin unless I missed something. Pumpkin is suprisingly a very good carb choice. Has less impact on the blood sugar. I am on a lowcarb diet specifically designed for diabetes and it is one of the few carbs allowed. I have often have some as my breakfast carb choice. Mix it with some spices and butter, spread or cream, a bit of sweetener/or alternative if your body allows and warm it up. Earthbalance just came out with a new spread that is soy-free and may work for you.

Mother of Jibril Enthusiast

I know how scary it is to explore the other seeds and nuts when you're allergic to peanuts :( The best advice I've read recently is to buy nuts in the shell... very little chance of cross contamination. Some people with peanut allergies are also allergic to one or more of the tree nuts (like almonds, walnuts, pistachios, etc...), but it's not automatic. Worth a try. Nuts are very satisfying and they would give you both protein and fat. Walnuts in particular have lots of omega 3 fatty acids :)

YoloGx Rookie

Good comments so far, particularly the hypoglycemia angle and need for protein. You might also try going off rice for a while too--it might be an allergen for you--possibly severe. Some of us have to go off all grains at least for a while in order to heal. Try squash and roots as alternative carbs for a while.

Do consider eating meat, seeds and/or nuts. If your body requires meat to be healthy, you should listen to it rather than what your head says you "ought to do." We are all different. Some thrive on vegetarian fare and others do not. Do you know what blood type you are? If type O the chance you need meat is even higher.

Do also eat lots and lots of vegetables. Many vegetarians I know are actually what I call "pastafarians" and eat far too few green leafy veggies. Vegetables help with the blood sugar balance amongst other things.

As far as the possible candida overgrowth angle--that too should be looked into and is highly suspect given your response...If so, also try avoiding all sugar and fruit for a while...Its not that uncommon. Use powdered stevia as a sweetner instead. Its made from the stevia plant and is not harmful--it just tastes sweet but adds no sugar.

Another angle is soy--some really cannot tolerate it.

Hope some of the advice given here by us all helps...

A test by a doctor sometime if any of this continues in such a severe fashion despite all efforts might be in order. It wouldn't hurt to get tested for celiac either... as well as for your blood sugar etc.

However I think it might be wise to give a non gluten, non quick carb and non sugar, anti candida diet a couple of weeks first to see what happens. Often the first 5 days are the worst with all kinds of strange symptoms, crankiness and desires for carbs, light headedness and fuzzy thinking etc., so bear with it. If you are bloated, fart a lot, have a white coated tongue in the morning, and just have to have sweets or carbs and perhaps have some fungus etc. somewhere or other this could be you. But in case its just hypoglycemia, be sure to eat several small meals a day. A snack of sunflower seeds for instance might be good if you start to feel faint... Chew well!

Bea

ang1e0251 Contributor

I know someone mentioned anemia and that's a possibility but what you described would be a typical hypoglycemic crash for me. Add to that shakiness and breaking out in a dripping sweat and there you go.

Every has given you great advice and I'm just going along with it. I cannot function without more protein than most people. I've also been more careful about adding extra dietary fats lately to cotrol blood sugar and lose weight. I feel much better this way too. It does entail planning though. I eat 3 meals and small snacks throughout the day to avoid crashing.

I have 3 scrambled eggs at breakfast with onion and tomato and now I'm eating cheese and grapes for a snack. I need to eat something almost every hour. If I can get in that extra fat, I can go longer. Like the others have said I rely heavily on meats, eggs and nuts. I would try to never go out like you did on all carbs plus I try to have something in my purse to fall back on, a Lara bar or nuts.

I know you said you cannot tolerate some of the foods I eat but I'm showing you my diet so you can get and idea of how much protein you need to look for. You must have that balance or you will continue to have those crashes. Also if you are very hungry, indulge it with safe food. Your body is telling you it needs more nutrients right now. Later that constant hunger may pass but for now, listen to your body and give it what it needs.

samcarter Contributor

You stated that you were a vegan due to food allergies...are you allergic to eggs? if not, I would really recommend adding eggs to a morning meal. If you are allergic to eggs, are you allergic to all meats? It's rare to be allergic to all meats. Some people are allergic to pork or beef, but rarely are people allergic to chicken.

I completely understand *wanting* to be a vegetarian. I was vegetarian from age 14 till 25, and then I went vegan. Unfortunately, by the time I had my third child, I was suffering a severe carnitine deficiency (a chemical mostly available in red meats and other animal products). Because I was, as another poster put it, a "pastatarian", I ate a lot of wheat which probably wasn't good.

I now eat a gluten free, dairy free, soy free diet that incorporates veggies and meat and the fruits I'm not allergic to, and feel much better.

Cinnamon7778 Rookie

Thank you

Last night I actually ate something that was fulfiiling. I made the Lime mint quinoa (Karina receipe) with yam cinnamon, walnuts, raisins, agave and I baked it in olive oil. It was delicious. For breakfast I am going to have hot quinoa cereal with blueberries and walnuts etc. So I'm getting there. My question however is what can I substitue beside meat for the fat intake? Its beyond the animal rights thing. My body does not function well when I eat meat or flesh it just doesn't.

My dear, you have to eat something.

Or you won't be able to function, period. Especially on rice and sugar.

You can't starve yourself out of this. You need protein, fruit, vegetables, and fat at every meal if you are going to pull this off.

Otherwise, if you have allergies to the mainstay foods used in vegetarianism, and can't tolerate dairy for cheese and yogurt, you are going to have to add in something like meat, fish, or eggs.

Cinnamon7778 Rookie

I am not allergic to meat I just lethargic and heavy when I eat meat. The frequency of my bowel movement change and so I become clogged and I experience mood swings. It may sound crazy but this is what I've noticed. I really don't like those feelings or symptoms coupled with the ones I am experiencing now. OMG So, I am not sure what I should do!!! :blink:

You stated that you were a vegan due to food allergies...are you allergic to eggs? if not, I would really recommend adding eggs to a morning meal. If you are allergic to eggs, are you allergic to all meats? It's rare to be allergic to all meats. Some people are allergic to pork or beef, but rarely are people allergic to chicken.

I completely understand *wanting* to be a vegetarian. I was vegetarian from age 14 till 25, and then I went vegan. Unfortunately, by the time I had my third child, I was suffering a severe carnitine deficiency (a chemical mostly available in red meats and other animal products). Because I was, as another poster put it, a "pastatarian", I ate a lot of wheat which probably wasn't good.

I now eat a gluten free, dairy free, soy free diet that incorporates veggies and meat and the fruits I'm not allergic to, and feel much better.

samcarter Contributor
I am not allergic to meat I just lethargic and heavy when I eat meat. The frequency of my bowel movement change and so I become clogged and I experience mood swings. It may sound crazy but this is what I've noticed. I really don't like those feelings or symptoms coupled with the ones I am experiencing now. OMG So, I am not sure what I should do!!! :blink:

Then I would recommend adding eggs. If you have quinoa in the morning, one thing I love with quinoa is a gently poached egg (more digestible than hardboiled or scrambled). Or perhaps you could have a smoothie with some protein powder.

Bottom line is, you need more protein in your diet. It will keep your blood sugar levels on an even keel. If you can digest any beans at all (I can't, they go right through me) try experimenting with different types of beans. Lentils can be very digestible. You mentioned not tolerating nuts, can you tolerate sunflower seeds? Sunflower "butter" (a substitute for peanut butter) is very tasty and high in protein.

I don't notice problems with meat, but I try to eat veggies when I eat meat. More veggies, drink lots of water--if you're not hydrated you'll get clogged for sure!, and fruit. Eating fresh pineapple with meat can help digest the meat, if you lack the enzymes.

Cinnamon7778 Rookie

Oh my goodnees, I use rice dreams and was unaware of the barley mix. Also, should I purchase separate cooking utensils from those I use for family so as not to cross contaminate? :blink:

In addition to the great advice you have already gotten, how long have you been gluten free and do others in your home still eat gluten? With your symptoms the night before and the reaction you had this morning I am wondering if gluten could have snuck in someplace.

Also what rice milk do you use? Rice Dream is not gluten free so if you are using that brand you may want to switch to perhaps Pacific brand. Rice Dream uses barley enzymes but don't list them on the label and although the company that produces it considers it gluten free many, many of us have had reactions.

Cinnamon7778 Rookie

I can have pumpkin and I did not think to mix it withspices and butter. I was trying to find a brand of butter for vegans thats soyfree. Thank you for this post. I will definitely look for the brand you named. :lol:

Not sure why you are avoiding pumpkin unless I missed something. Pumpkin is suprisingly a very good carb choice. Has less impact on the blood sugar. I am on a lowcarb diet specifically designed for diabetes and it is one of the few carbs allowed. I have often have some as my breakfast carb choice. Mix it with some spices and butter, spread or cream, a bit of sweetener/or alternative if your body allows and warm it up. Earthbalance just came out with a new spread that is soy-free and may work for you.
Cinnamon7778 Rookie

TYhanks for this post. I am actually afraid to try other nuts because of the symptoms I experience after eating them i.e. peanuts, pistachios, cashews, brazil nut (feel like rocks in my stomach) etc. So far I've been abble to eat walnuts and almonds. WHEW! But who knows only time will tell if it will last. I also purchased some pumkin seeds of which I am afraid to try but will do so today as a snack :o. Smile Sometimes all i can do is smile or laugh because this celiac disease is no jjoke but comically when I look at what I have to do to maintain. Thank you Jibril for this post. Especially in regards to getting the fats and protein I need as a vegan and etc. ;)

I know how scary it is to explore the other seeds and nuts when you're allergic to peanuts :( The best advice I've read recently is to buy nuts in the shell... very little chance of cross contamination. Some people with peanut allergies are also allergic to one or more of the tree nuts (like almonds, walnuts, pistachios, etc...), but it's not automatic. Worth a try. Nuts are very satisfying and they would give you both protein and fat. Walnuts in particular have lots of omega 3 fatty acids :)
Cinnamon7778 Rookie

My blood type is O positive. I also believe that I have a candida isuue as well. How do I address this on top of the gluten free diet? Oh my goodness, I am really going to starve. No fruit, rice, agave and stuff. I'm open for advice if you have more information. What will eat while trying to address the above? :blink:

'

Good comments so far, particularly the hypoglycemia angle and need for protein. You might also try going off rice for a while too--it might be an allergen for you--possibly severe. Some of us have to go off all grains at least for a while in order to heal. Try squash and roots as alternative carbs for a while.

Do consider eating meat, seeds and/or nuts. If your body requires meat to be healthy, you should listen to it rather than what your head says you "ought to do." We are all different. Some thrive on vegetarian fare and others do not. Do you know what blood type you are? If type O the chance you need meat is even higher.

Do also eat lots and lots of vegetables. Many vegetarians I know are actually what I call "pastafarians" and eat far too few green leafy veggies. Vegetables help with the blood sugar balance amongst other things.

As far as the possible candida overgrowth angle--that too should be looked into and is highly suspect given your response...If so, also try avoiding all sugar and fruit for a while...Its not that uncommon. Use powdered stevia as a sweetner instead. Its made from the stevia plant and is not harmful--it just tastes sweet but adds no sugar.

Another angle is soy--some really cannot tolerate it.

Hope some of the advice given here by us all helps...

A test by a doctor sometime if any of this continues in such a severe fashion despite all efforts might be in order. It wouldn't hurt to get tested for celiac either... as well as for your blood sugar etc.

However I think it might be wise to give a non gluten, non quick carb and non sugar, anti candida diet a couple of weeks first to see what happens. Often the first 5 days are the worst with all kinds of strange symptoms, crankiness and desires for carbs, light headedness and fuzzy thinking etc., so bear with it. If you are bloated, fart a lot, have a white coated tongue in the morning, and just have to have sweets or carbs and perhaps have some fungus etc. somewhere or other this could be you. But in case its just hypoglycemia, be sure to eat several small meals a day. A snack of sunflower seeds for instance might be good if you start to feel faint... Chew well!

Bea

Cinnamon7778 Rookie

Do you have a particular kind of protein powder that you could suggest. I am afraid to eat meat. :unsure: Just thinking about it scares me. I can't eat sunflower seeds but I do eat alot of veggies. I was not aware of the rice chex thing. Aslo, someone just informed me that Rice Dreams (milk) has barley enzymes and of course this is the brand I've been using!! I eat wanust and almonds and so far no problems. I ordered cooks books Susan O Brian Wheat free, gluten free cookbook for vegan and Donna Klein cookbook so hopeful I'll find receipes that are not only nutritious but delicious. ;)

Then I would recommend adding eggs. If you have quinoa in the morning, one thing I love with quinoa is a gently poached egg (more digestible than hardboiled or scrambled). Or perhaps you could have a smoothie with some protein powder.

Bottom line is, you need more protein in your diet. It will keep your blood sugar levels on an even keel. If you can digest any beans at all (I can't, they go right through me) try experimenting with different types of beans. Lentils can be very digestible. You mentioned not tolerating nuts, can you tolerate sunflower seeds? Sunflower "butter" (a substitute for peanut butter) is very tasty and high in protein.

I don't notice problems with meat, but I try to eat veggies when I eat meat. More veggies, drink lots of water--if you're not hydrated you'll get clogged for sure!, and fruit. Eating fresh pineapple with meat can help digest the meat, if you lack the enzymes.

Cinnamon7778 Rookie

Thank you for sharing your experiences. They are very helpful. I was unaware of the results I would experience after eating 2 bowls of rice chex with rice milk (rice dreams which contains barley). I figured if my daughters could eat cereal and make it through so can I. Also, until recently I've always been able to eat one main meal with a sald and some fruits and nuts for years. This drastic change is sudden. I guess it was accumalating and it reached its point. So, this was a shock to me. I tried to do my best to eat healthy; especially after becoming a vegan.

I know someone mentioned anemia and that's a possibility but what you described would be a typical hypoglycemic crash for me. Add to that shakiness and breaking out in a dripping sweat and there you go.

Every has given you great advice and I'm just going along with it. I cannot function without more protein than most people. I've also been more careful about adding extra dietary fats lately to cotrol blood sugar and lose weight. I feel much better this way too. It does entail planning though. I eat 3 meals and small snacks throughout the day to avoid crashing.

I have 3 scrambled eggs at breakfast with onion and tomato and now I'm eating cheese and grapes for a snack. I need to eat something almost every hour. If I can get in that extra fat, I can go longer. Like the others have said I rely heavily on meats, eggs and nuts. I would try to never go out like you did on all carbs plus I try to have something in my purse to fall back on, a Lara bar or nuts.

I know you said you cannot tolerate some of the foods I eat but I'm showing you my diet so you can get and idea of how much protein you need to look for. You must have that balance or you will continue to have those crashes. Also if you are very hungry, indulge it with safe food. Your body is telling you it needs more nutrients right now. Later that constant hunger may pass but for now, listen to your body and give it what it needs.

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      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. 
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      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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