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Jm34

anxiety, celiac, problems, doctors, i'm lost

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1 hour ago, Gemini said:

Lastly...because I am on a roll here today.......caramel coloring is safe, safe, safe.  In the US, that is, it is most always made from corn. I would imagine its the same in Canada but I don't live there.  Even if it were from wheat, as Kareng has stated a number of times, the amounts are so small after processing, the ppm tally is negligible. I am very, very sensitive to small amounts and have never been glutened by negligible amounts. Relax.

I think that if anyone drinks Coke, worrying about it being gluten free is the least of your troubles. It is literally one of the worst things you can ingest and will really mess up your stomach, all on it's own., with no help from gluten.  If you need a carbonated beverage that is healthier, try sparkling water.  It is plenty carbonated and has zero sugar in it.  You can even add some fruit for more flavor.

 

I am sensitive to trace gluten, but when I was out with wider family and desperately hungry with no food or drink and found a can of coke, uncharacteristically I downed it with no ill effects.  I drink probably one can every two years, not a regular occurrence.  If it was going to give me problems I would have known about it.  In USA corn is a more commonly used starch, such as the derivative of dextrose, wheee as in the U.K. and Europe they often use either potato, maize or wheat, sometimes without knowing which because they are mixed sometimes.

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5 hours ago, Gemini said:

Lastly...because I am on a roll here today.......caramel coloring is safe, safe, safe.  In the US, that is, it is most always made from corn. I would imagine its the same in Canada but I don't live there.  Even if it were from wheat, as Kareng has stated a number of times, the amounts are so small after processing, the ppm tally is negligible. I am very, very sensitive to small amounts and have never been glutened by negligible amounts. Relax.

I think that if anyone drinks Coke, worrying about it being gluten free is the least of your troubles. It is literally one of the worst things you can ingest and will really mess up your stomach, all on it's own., with no help from gluten.  If you need a carbonated beverage that is healthier, try sparkling water.  It is plenty carbonated and has zero sugar in it.  You can even add some fruit for more flavor.

 

EU where he is from it is common for caramel coloring to use wheat not corn. and oddly enough it can sometimes be processed in a way in which the proteins that cause the ill effect are removed and sometimes not. So playing it safe he should stay away from it the guy seems to by hyper sensitive, much like me, I can get sick from residue cross contamination from door handles and knobs, I also can get sick form inhaled flours from a bakery at a grocery store.  As crazy as it might seem it is possible, while the huge gut pains and vomiting are not present with this form, I do get the brain fog, fatigue, slightly more numbing, and a bit of gut issues.

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JM34,  

Are you taking Niacin?  You seem to have had diarrhea for quite a while now.  You mentioned your acne came back.  You say you get irritated easily.  These are symptoms of Pellagra....diarrhea, dermatitis, and dementia.  

https://www.ncbi.nlm.nih.gov/pubmed/2084620

This is an article about irritated esophagus in people with Pellagra.  They responded to treatment with niacin within a week! 

Niacin is a water soluble B vitamin. It is lost quickly when one has diarrhea.  Dementia starts out with irritability and anxiety. Perhaps you could discuss pellagra with your doctor.  It should be considered in cases of malabsorption, but is often underdiagnosed.

You might want to reconsider eating corn.  Corn has proteins in it that can trigger a reaction in some people. Here's a study on that.

https://www.ncbi.nlm.nih.gov/pubmed/22298027

Try Organic Basmati rice.  

What is your Betaine HCL made from? Some comes from beets or spinach, but some comes from wheat. 

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3 hours ago, knitty kitty said:

Are you taking Niacin?  You seem to have had diarrhea for quite a while now.  You mentioned your acne came back.  You say you get irritated easily.  These are symptoms of Pellagra....diarrhea, dermatitis, and dementia.  

https://www.ncbi.nlm.nih.gov/pubmed/2084620

This is an article about irritated esophagus in people with Pellagra.  They responded to treatment with niacin within a week! 

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

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9 hours ago, Ennis_TX said:

EU where he is from it is common for caramel coloring to use wheat not corn. and oddly enough it can sometimes be processed in a way in which the proteins that cause the ill effect are removed and sometimes not. So playing it safe he should stay away from it the guy seems to by hyper sensitive, much like me, I can get sick from residue cross contamination from door handles and knobs, I also can get sick form inhaled flours from a bakery at a grocery store.  As crazy as it might seem it is possible, while the huge gut pains and vomiting are not present with this form, I do get the brain fog, fatigue, slightly more numbing, and a bit of gut issues.

So do I.  I even get glutened with brain fog, intestinal issues, fatigue, numbness and muscle spasms from aerosols or bakery or sometimes plaster dust and the gluten found in building materials.

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Here in Europe "Coke" uses "corn" based caramel coloring and the other big brand "Pepsi" uses "wheat" based coloring. I don't drink any type of sodas maybe a bottle a year or even less to be honest...

Onto the other thing i'm not that paranoid person... ofc. i wash  my hands before i do anything with my own GF food, but then again i have to touch shared stuff to get water from the tap to get out foods from the refridgerator and plates, spoons, forks, flours etc from the cabinet... and i do have some problems which are with mefor this last 6-7 years, and it were somewhat better if i did eat wheat... and somehow worse from the gluten free diet BUT last year i've got so sick and after i went to my internist and even tho he was telling me before i'm not a celiac if the GF diet doesn't help me in a half year (2 other doctors said the same), again my serum tests came back positive "anti-transglutaminase IGG", "anti-transglutaminase IGA", "anti-gliadin IGA", "anti-gliading IGG". Without an increased C-reactive protein the doctor tells me i don't have any enteritis yet my gut hurts and have a lot of problems like even my hair is falling out still even on the GF diet...

Then i start to develop this terrible reflux like sypmtoms with frequent heartburns and swallowing problems, like you feel the food/drinks going down, then the pain goes into my jaw, my ears, insanely bad pressure in my chest somehow pushing up my throat or similar... which only gets better if i eat a lot. Even pouring some fresh water into my mouth without swallowing it causes me almsot an immediate heartburn... to be honest drinking fresh water (i almost didn't drink anything else but fresh water in the whole year of 2016) is most of the time feels terrible. I have this dry throat immediately afterwards, then again it's probably not a good idea to drink much because before i could drink around a maximum of 1dl water any time of the day, so i was drinking around 1l a day or maximum 1.5l of liquids but since this terrible constipation came on me and my doctor said i must drink more i keep drinking... Nowdays i can just pour down 3dl without a hassle but this reflux like crap is just killing me.

This reflux like terrible chest pressure, lots of saliva producing in my mouth, dry throat, sore throat, earache, pain in my jaws were the biggest symptoms which came on me after i drank a "soda that were left opened for 2 weeks and it were terribly fermented". Because i was a person who would care none for his own body just writing code 0/24 while attending his classes almost like a zombie. At that time i was just drank some sh*t and i run to my class, then these crazybad symptoms got on me in 20 mins and i was producing so much saliwa and everything else were so bad i couldn't swallow it because this pressure in your chest is so bad that when it is that bad you are like scared to swallow anything... It was the first time i've met symptoms like that i had other chronic symptoms before but i just didn't care since the doctors i went to said i shouldn't care.

So after i were bsing myself for straight 4 hours at my university and i went home, i were still having these terrible symptoms then i went to the doctor on duty he basically told me "Can you drink water from a glass?! ~ yes you can some so you don't have problems with swallowing GTFO. Go to your GP tomorrow". After i've got to a gastroenterologist and they did endoscopy / biopsy on me and everything were basically almost negative... the doctor gave me PPI pills which had almost no effect because i were still producing the symptoms, then basically every doctor and everybody around me started to harass me that i have anxiety. Yes harassing me every time i got up my mother were flooding me with her words i'm completely fine but i have a huge anxiety subconsciously. Every gddamn day i were listening this 0/24 until my condition even worsened from the GF diet exactly the same way like TODAY... Then i went to a nervous and psychiatrist then the diagnose was i should go to a gastroenterologist because it's not a nerv system problem but a gastric one. Yet my mother were still harassing me every day 0/24 that i have a serious anxiety  subconsciously, even tho i've had zero problems. So as the doctors said me i've stopped the GF diet and i've halted my studies for a year trying to somehow get myself together somehow i've recovered some, so i went back to the school and the first class i was having after i've travelled for 1.5 hours without eating (which i've almost never did in the past year at home) this reflux symptom came back after the first class ended. That time i was with an empty stomach for around 3.5 hours or 4 hours~... Then at the 2nd class i drank water it just got worse way worse just like it does get worse today... Then i went home my mother changed her harassment into i have a panic attack which is so long that i lasts 0/24 basically i live in a panic... Then she told to my doctors and then they started to harass me with this crap that i have a panic attack and  a huge anxiety subconsciously... So i should take pills for it then my mother were harassing me that i shouldn't take pills i should just stand up and lose my problems and crap like that. Then i ended up developing panic disease symptoms... i were writing my tests like i was holding the fking chair with one of my hands then grabbing my heart every 7 seconds or so because i thought it would stop, it beated so heavily... everything became so sh*t in my life... so i tried alternative ways to treat the panic problems nothing worked, then tried to take weak pills like valeriana etc... none worked really. Maybe a small placebo effect sometimes... but i were still listening 0/24 from my mother her straight bs... Since those days any doctor i've seen here doesn't even care... just say i have anxiety and panic disease i must take SSRI or the other doctors wanna put me on Xanax... I even tried Frontin (almost the same as Xanax) did nothing to me instead i just started to fear from the sideeffects of every pill... and the fking doctor were just telling me we need to raise the dose WE NEED TO RAISE THE DOSE... Before the doctor were lik i should try it out for a month and 2 and see if anything gets better by any means... after 2 months she were just trying to put me on stronger pills... i could barely learn for my uni classes at that time... It took me a half year to put down that sh*t and in the end i've just got worse... At least i didn't have any panic attack in the last 3 years yet my mother still harasses me every day and every moment.

Sadly i'm not feeling that good either to just grab my stuff and rent a house and live alone, becuase i still feel these reflux like symptoms 0/24 and these gastric symptoms... :SIGH

So i was like no matter what anyone tells me now i'm going to be on a celiac diet for at least 2 years to see if this would do anything good to my already ruined life... Then again as i wrote before everything is just worse from the diet. :SIGH

I'm going to read again about pellegra i did before since somebody wrote about it in this topic but i can't really take b3 in the niacin form because it causes me insanely bad throat itching and sweating... maybe i should try the non flush type of b3...

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Gemini, you certainly WERE on a roll.  Firstly, the book was not the original Wheat Belly, BUT Wheat Belly Total Health as I stated.  I'm not sure if you actually read either book, but the physiological/metabolical pathways are described fully in the Total Health book.  It's not made up or fear mongering.  It's science.  I'm a nurse and it has been fascinating to find out these things.  And in case you want to say how our ancestors have been eating these things since Biblical days... it's not the same grains that are talked of in the Bible.  Those no longer exist.

JM34-

I get confused by your posts.  Have you ever gone fully gluten free for 6 months?  In spots you say you do, but when your Mother or Doctor says to eat gluten, you do.  As has been mentioned before, whole foods would be your safest route.  NOTHING out of a box or can... just fresh/frozen veggies/fruits and meat.  There are many foods that can cause reaction and until you FULLY eliminate for 28 days, you can't know which things are bothering you.  I understand we are losing something in translation, but you NEED to stick to the basics for more than a day or 2.  Sometimes the reaction to a food can be delayed for 2-3 days.  In some cases people react to pesticides or herbicides in food.  You could also be reacting to what the animals were fed.  You could be reacting to the mold spores on the grains.  Anything stored in bins can be contaminated.  Your case is not typical, and it will take some hard work on YOUR part.  You've gotten some good options here, but I don't see that you have fully committed to ANYTHING.  You seem to try something for a couple of meals and when it seems to fail... you drink COKE!  THAT certainly has no magical healing powers.  They do use it successfully to remove corosion from batteries, so that tells you what it can do to your stomach.  It would be great if just removing gluten would end your problems, as it seemed to for Gemini.  That didn't work for you and it didn't work for me or my husband.  When these feeble attempts fail, your anxiety gets worse.  It is a self-perpetuating cycle of illness... UNLESS you stop all of it and get to basics for 28 full days.  No home remedies, no COKE, no eating a bit of wheat to "feel better".  As one person said, I'd like to bring you to my house for a month.  You would certainly have a better handle on what you do and don't tolerate.  Just because tomatoes are listed as healthy, doesn't mean YOU can tolerate them or any food.  If you have high heavy metal levels, you will react differently to things.  Doctors only find what they are testing for.  That's how testing is done.  If you aren't looking for HIV, it won't jump out on a standard blood test.  Until YOU commit to eating consistently, you will continue this cycle of unwellness, I fear.  I can't imagine being so young and so ill.  I pray you find the strength to commit to sticking with a plan.  Best of Luck!

Debbie

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5 hours ago, deb_rn said:

Gemini, you certainly WERE on a roll.  Firstly, the book was not the original Wheat Belly, BUT Wheat Belly Total Health as I stated.  I'm not sure if you actually read either book, but the physiological/metabolical pathways are described fully in the Total Health book.  It's not made up or fear mongering.  It's science.  I'm a nurse and it has been fascinating to find out these things.  And in case you want to say how our ancestors have been eating these things since Biblical days... it's not the same grains that are talked of in the Bible.  Those no longer exist.

 

I tried reading the original Wheat Belly but couldn't get through the book as it had too much incorrect and yes, fear mongering, information.  The actual science of Celiac Disease is very well understood today and the original book was just nonsense in many parts.  You can call anything science today without actual proof of anything and people will believe it.  I am in the science field, but not medical science, and I see it happen all the time.  If people want to go grain free, I have no problem with that.  But to take the leap and say that all grains are damaging to everyone today is just not true and is pseudo-science.

As far as grains being different today, yes they probably are.  That stands to reason but wheat is wheat is wheat.  If you have Celiac then or now, you can't eat the stuff.  We had this same "discussion" a while back about eating wheat in Italy.  Some people have said that they don't react to the wheat in Italy because, they think, it is less processed than American wheat and contains less gluten. I can say from 12 years experience as a very sensitive Celiac, whether you feel the reaction or not, if you eat the wheat in Italy, you have just inflicted damage on your gut. What I have noticed over time from my perspective, is that once you really heal well, reactions change. My reactions are now less severe and they should be, because my gut has healed well and it isn't a total wasteland anymore. But I am sure if I continued to cheat, over time, I would right back to square one and my reactions would revert back to horrible and debilitating.

I think everyone needs to make their own decisions about what they eat but no Celiac should ever be told that they should ditch all grains because they are being damaged by them.  Ditto for non-Celiac's.  If you have a reaction that can be traced back to a particular grain, every time you eat it, then common sense should prevail and you drop that grain from your diet. You may trial it again down the road when you heal.  I do not do well without grains.  I exercise hard to combat osteoporosis and without grains, I run out of steam. They are an important part of many athletes diet.  That does not imply I am in any way an athlete because I am not. But my first cousin is a triathlete who does Iron Man competitions and grains are an important part of her training diet. I think it is a very individualistic decision. One mans pleasure is another's poison. I just don't think we need to cut any more food groups out of our diets without knowing for sure whether they are actually a problem.

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1 hour ago, Gemini said:

I do not do well without grains.  I exercise hard to combat osteoporosis and without grains, I run out of steam. They are an important part of many athletes diet.  That does not imply I am in any way an athlete because I am not. But my first cousin is a triathlete who does Iron Man competitions and grains are an important part of her training diet. I think it is a very individualistic decision. One mans pleasure is another's poison. I just don't think we need to cut any more food groups out of our diets without knowing for sure whether they are actually a problem.

That is the point, Gemini.  You do not do well without grains, but some people are reacting to lots of foods, without knowing what to.  Some people need to cut out food groups in order to heal and then bring them back one at a time.  Without elimination we don't know what we are reacting to.  Some people are suffering and confused because something is causing them symptoms in addition to gluten, probably because their guts need to heal by eating only easily absorbed and digested foods.  If that means cutting out all grains for a month it is worth it.  Nuts are a great source of energy and so are bananas and other fruits and veg.

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I agree, JM34, you would probably benefit from simplifying your diet.  It's up to you to make diet changes that will help your body.  You can blame your mother and doctors but they aren't forcing you to eat foods that make you sick, right?  It may be you have other medical issues besides gluten, but it still makes sense to treat your gluten issue anyway.  The treatment for celiac and NCGS is simple, eat gluten-free and don't cheat on the diet.  If you don't improve in 6 months then it may be time to look at other possible medical issues.

Simple, whole foods are your friend.  Why not give them a serious try and see what happens?

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JM34,  I recommend the book "Niacin: the real story" by Dr. Abram Hoffer.  Yes, when you first start taking niacin, you will experience flushing, but the longer you take it, the more the flushing subsides.  The flushing is simply the blood vessels in your skin opening. The non-flushing/extended release niacin may cause gastrointestinal upsets that you would want to avoid right now. Make sure you get a gluten free brand of niacin. Start with a low dose (say 50mg) once a day, with one meal, working up to three times a day with each meal, then increasing the dosage as needed. Be consistent.  Keep taking it and the tingling flushing WILL go away.  

The doctors didn't believe me either. They prescribed all different kinds of anti-anxiety meds and nothing worked because that wasn't the problem.  It was pellagra.  It was niacin deficiency.  To correct a deficiency, you need more than the recommended daily amount.  

You said you felt worse on a gluten free diet.  This may be because after removing gluten and its irritations, you are left with the symptoms of niacin deficiency.  You may feel better after eating a little gluten because gluten based products are enriched with added B vitamins, including niacin.  Your body may be craving the vitamins, but don't cheat. Stay gluten free and take the Niacin instead.  

I really hope you feel better soon.  

 

 

 

 

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To prevent and/or treat pellagra, prescribe a protein-rich diet with adequate calories. The addition of meats, milk, peanuts, leafy green vegetables, whole or enriched grains, and brewer's dry yeast can enhance niacin intake.

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I went gluten free for 6 months, by that i meant completely gluten free in the exact way the dietetic and the doctor said. Then my symptoms didn't improve and i had newer serum tests and they were negative due to the diet. Then the doctor told me my tied was good BUT my symptoms kept being the same... Nothing improved, so the doctor told me to eat gluten then... I've had newer serum tests which were negative. Which lead me to this current state of being that after about 3 years i realised i'm lactose intolerant and another 2 years later i developed an insane constipation lasting for 5-6 days with terrible stomach cramps.  Which happened 3 times during 1 year. Then after the 3rd time i went back to my internist (because i don't run to the doctors with everything...) and my serum tests were positive again: "anti-transglutaminase IGG", "anti-transglutaminase IGA", "anti-gliadin IGA", "anti-gliading IGG".

Simple as that doctor diagnosed me with celiac -> my symptoms only get worse by the gluten-free diet (terrible reflux like symptoms i've never had before insane chest pressure, swallowing problems, feeling the solids and liquds going down my throat, everything is worse if i taste "minty" stuff, heartburns all over the place, sour taste in mouth with caustic feeling in my mouth, pain in my jaws and my ears and like pressure coming out of my opened left eardrum and my nose then the prescribed PPI pills didn't do anything. -> my serum levels went back to normal -> they told me i am a celiac -> they told me to stop the gluten-free diet -> i stopped the gluten-free diet -> 1-2 months later i've got tested again -> the serum tests were negative -> they told me i'm not a celiac -> 1 year passed -> i've developed anxiety and panic disease -> i was treated with frontin (xanax) -> it didn't help me at all just worsened everything -> the doctors were trying to force me to take increased doses -> i slowly stopped taking the pills -> 2 years passed -> little later i've realised that i have developed a lactose intolerance -> 2 years later i've developed a terrible constipation -> i've got tested again -> all of my serum tests were positive again for celiac disease -> they told me i'm a celiac -> i've started the gluten-free diet -> i've instantly felt better in 2 days of the diet -> after 6 months these reflux like symptoms exact symptoms as before started to develop again...

See the cycle here?!

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Yeah the test will show normal on a gluten-free diet cause there is no gluten for the body to react to....Your a celiac, Anyway how is that elimination diet working. Mucus and joints and neck issues under control on the broth and potato only diet so far? Or did something happen and you get off the elimination diet. I still think you might be having a reaction to something else. Thought the B-vitamin issue could something,....I keep wanting to invite you over here and put you on my regime for a few weeks. -_-

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I'm on the diet strictly for now, broth, potatoes, small amounts of rice and some meat. Plain without any seasonings other than plain salt. The join pains disappeared at least for now but my stomach / gut isn't feeling good. Even if i was eathing nothing but chicken broth i've had some problems, like random duodenal pain... on top of that some new pain near my pancreas or so and this whole belly discomfort feeling... Monday i will see this new internist / gastroenterologist doctor... ... ... :SIGH

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2 hours ago, Jm34 said:

I'm on the diet strictly for now, broth, potatoes, small amounts of rice and some meat. Plain without any seasonings other than plain salt. The join pains disappeared at least for now but my stomach / gut isn't feeling good. Even if i was eathing nothing but chicken broth i've had some problems, like random duodenal pain... on top of that some new pain near my pancreas or so and this whole belly discomfort feeling... Monday i will see this new internist / gastroenterologist doctor... ... ... :SIGH

Hi Jm34.

You got some really bad advice from your doctor.  Celiac disease doesn't go away.  Celiac disease is a chronic, incurable, AI (auto-immune) disease.  Once you have it, you always have it.  We do know the trigger for the auto-immune reaction though, which is gluten.  So we can get the antibodies to decline by stopping eating gluten.  But that takes weeks to months for some people.  But anytime we consume gluten the immune attack will start up again.

The only way to keep the immune reaction from attacking our bodies is to avoid all gluten for life.  The immune system doesn't forget.  It can take from 6 months to a year and a half to recover from celiac damage.  Symptoms can vary throughout that time, but should be on an improving trend.

Celiac disease is the only AI condition where we know the trigger,  So we can treat our condition by controlling what we eat.  Other AI conditions they don't know the trigger and can't control them without drugs.  People with AI conditions are prone to getting another AI condition.  It seems like the longer people with celiac disease eat gluten, the more AI conditions they contract.  So it's real important to get off gluten and stay off it for life.  Gluten is a protein in wheat, rye, and barley.  About 10% of people with celiac also react to the protein in oats.

I'd avoid the potatoes myself.  Potatoes have chemicals in them that are poisonous in larger amounts.  That's why they say not to eat the green eyes of potatoes.  But those chemicals are present in smaller amounts throughout the potato.  So eating potatoes constantly can makes us sick.  It's just one more hit on the body you don't need while trying to heal.  Sweet potatoes are a different family of plant and don't have any of the bad chemicals in them.  They are also much better for us nutrition wise than regular white potatoes.  So maybe you can try them as a substitute.

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3 hours ago, Jm34 said:

I'm on the diet strictly for now, broth, potatoes, small amounts of rice and some meat. Plain without any seasonings other than plain salt. The join pains disappeared at least for now but my stomach / gut isn't feeling good. Even if i was eathing nothing but chicken broth i've had some problems, like random duodenal pain... on top of that some new pain near my pancreas or so and this whole belly discomfort feeling... Monday i will see this new internist / gastroenterologist doctor... ... ... :SIGH

Well seeing some improvement is a good thing, As mentioned perhaps sweet potato instead if you can get it, just change them out. You can even bake the sweet potato and have it that way for a on the go meal, wrapping it in foil while baking and carefully unwrapping add another level of safety to CC. Might remove the rice, and stick to the sweet potatoes for your carbs see if you notice anything in the next 48 hours.

Few more days we can try adding in boiled eggs and for more protein and fats.

I have a thought on how to b-vitamin supplement without pills. Might want some feed back from others. But perhaps using KAL or BRAGGS Brand Nutritional Yeast in the broth 2-4 tbsp in a bowl stirred in or sprinkled over the potatoes, Both brands are safe for Celiacs and many of us use them for nutrient supplementation. It is different from baker or brewers yeast being inactive and grown on molasses , both versions suggested are fortified.

BTW Good luck with the new doctor and I hope and pray he is not some crazy quack or someone who does not understand your disease.

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7 hours ago, Peaceflower said:

To prevent and/or treat pellagra, prescribe a protein-rich diet with adequate calories. The addition of meats, milk, peanuts, leafy green vegetables, whole or enriched grains, and brewer's dry yeast can enhance niacin intake.

Watch the "brewer's yeast".  It is usually not considered gluten free.  I usually stay away from it as it can be hard to tell.

 

Here is a good explanation.

"The (sometimes) exception to yeast being gluten-free, is with true brewer’s yeast, which is a by-product of beer and thus not considered gluten-free.  To make things a little more complicated, however, there are some “brewer’s yeast” brands that are grown on another medium, such as sugar beets, so these products may be gluten-free. "

https://www.beyondceliac.org/answers-from-a-dietitian/Answer/1392/postid--12748/

 

 

Edited by kareng

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5 hours ago, kareng said:

Watch the "brewer's yeast".  It is usually not considered gluten free.  I usually stay away from it as it can be hard to tell.

 

Here is a good explanation.

"The (sometimes) exception to yeast being gluten-free, is with true brewer’s yeast, which is a by-product of beer and thus not considered gluten-free.  To make things a little more complicated, however, there are some “brewer’s yeast” brands that are grown on another medium, such as sugar beets, so these products may be gluten-free. "

https://www.beyondceliac.org/answers-from-a-dietitian/Answer/1392/postid--12748/

 

 

Yes, good point, thank you, Kareng.  I lifted that quote, should've been more careful.  The only yeast I am able to eat is Dove's Farm Yeast.

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Jm34,

This is to your OP.

It sounds like you have low stomach acid to me.

We become low in a host of vitamin/minerals because your/our stomach acid is not strong enough to extract our nutrients.

see this thread where I talk about why strong stomach acid is important.

As to your Potassium problem/deficiency.  This too can be explained by low stomach acid.

Think of Vitamin/Minerals as seesaw.  Absorption of one is controlled by the relationship to its sister nutrient.

Axiomatic is the word if you don't know what a seesaw is.

When one's zinc levels go up in a person copper levels go down as an example.

And why Calcium and Magnesium are sold together in Calcium supplements.

In many cases we have enough  of particular vitamin/mineral it just not bio-available (locked up) to us. 

Iron is in the same boat.  Taking beta carotene unlocks the door for Iron absorption.

See this link about where I talk about how betac arotene helps Iron absorption.

this is why taking more potassium does not help a potassium deficiency.

You need it's sister nutrient to get out of the way so your body can absorb the potassium you are taking.

In this case Magnesium is our Hero!

This link explains it very well.

http://www.mgwater.com/schroll.shtml

It is called refractory potassium deficiency and with out some Magnesium to help you absorb your Potassium then homeostasis or cell equilibrium can not be attained or achieved with Potassium alone.

They give several examples of why I call Magnesium the King mineral.  Without Magnesium on the throne (if you will) the other electrolytes in the court (cell) don't know where to stand and an imbalance is created than only be corrected with/by Magnesium supplementation.

They say in summary their many examples quoting

"All these examples show convincingly that magnesium alone plays a leading part for development of an electrolyte imbalance as well as for the recovery of electrolyte homeostasis. With respect to the fact that the electrolyte balance cannot happen suddenly, potassium and magnesium should be given as soon as possible. This will appply to all patients whose anamnesis suggests a magnesium deficiency or who show typical symptoms of it. All patients who are treated with diuretics, cardiac glycosides or cyclosporin need a regular potassium-magnesium supply."

Read the whole article for your self but basically by taking Magnesium as a CITRATE or Glycinate will restore your electrolyte balance.

But with low stomach acid you will want to take it Magnesium Citrate 200mg 4/day (with each meal and bedtime) to overcome your low absorption.

Begin with 2/day for the first week and work up to 3 to 4/day over a couple weeks.

You will notice your energy levels go through the roof.  Chronically fatigued people are low in Magnesium and the doctor's don't understand the connection.

I know because I had a friend like yourself who was taking massive Potassium amounts and the doctor's were confounded that taking Potassium did not help a potassium deficiency.

When he started taking Magnesium based on my research about a refractory potassium deficiency he has not had a Potassium deficiency since.

Potassium/Magnesium is a classic twin deficiency scenario.  Both are low but one is confused for the other.

This happens because Magnesium deficiency is not easily determinable by most standard blood panels.

But Potassium is and therefore is identified as the cause of the fatigue, muscle cramps, etc but since our bodies need Magnesium in every cell in the body to make energy taking Magnesium overcomes the refractory potassium deficiency by acting as catalyst for Potassium electrolyte balance thus repairing the electrolyte imbalance.

You have enough Potassium it is just stuck in the wrong place.  Magnesium opens the door for the Potassium to now come into your cells. 

Calcium is the opposite.  Without Magnesium in the Cells Calcium takes over and runs Magnesium out of the cell.

So take Magnesium and restore your electrolyte balance ie, homeostasis where peace between these warring electrolytes have been restored. 

The King Mineral Magnesium is back in it's rightful place on the Mitochondria throne and the Kreb Cycle is working again to make energy for the cell.

The Kreb Cycle also known as the Citric Acid Cycle is how we burn/metabolize energy.  Think photosynthesis for a plant.

And why drives photosynthesis in a plant.  Chlorophyll right?  The green color of plants.

Well as Chlorophyll is to a the Plant for Photosynthesis Magnesium is to the Kreb Cycle for the animal.

Magnesium makes it work properly.

And when your stomach acid is too low you can't absorb Magnesium very well.

I hope this is helpful.

As to the mucus in your stool this typically is a sign of poor fat absorption another sigh of low stomach acid.

Prousky wrote the reference work on this topic 15+ years ago but still people suffer from it (low stomach) typically diagnosed as high stomach acid today...... and people get locked into PPI's because of the rebound affect of stopping the stomach acid reducer too quickly causing symptom's so severe they go back on them (usually for years) instead of getting off of them for good.

Note: the next TV Ad you see for Prilosec, Nexium, etc.  In the fine print they say if taken for more than 6 months a Magnesium deficiency will develop.

See his full paper about this topic.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

where he explains or proposes a cause and effect action of supplementing with Niacinamide to restore/treat low stomach acid.

And that too will help your Magnesium deficiency by restoring your bodies ability to again absorb Magnesium, Iron, B-Vitamins, Fats etc.

Summarized well in the abstract for this paper as "Niacin(amide) treats digestive problems" Niacinamide is the non-flushing form of Niacin.

http://www.yourhealthbase.com/database/a124b.htm

and it does so by restoring your stomach acid production to a healthy level.

Gluten free works has a great summary article that talks about the Niacin deficiency that occurs in Celiac's.

https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/

I hope I haven't rambled too long.  I had a lot of ground to cover.

****** this is not medical advice.

Only my own personal research and experience with celiac disease and it's many vitamin/mineral deficiencies.  You want to know more about my journey visit my profile and read my blog post about my experience with Niacinamide (Pellagra) in Celiac's.  The disease's are eerily similar but most people don't even know what Pellagra is much less ever heard of it today.

P.S. one more link that explains how mood disorder's (anxiety, depression etc) can be attributed to a Niacin deficiency for those who are a Celiac and those who are not but are only NCGS but are still struggling with anxiety.

http://blog.healthybynaturehwc.com/niacin-deficiency/

Taking Niacinamide really helped my anxiety/depression.

I am including it because it has nice summary chart of the different types of Niacin and each form's flushing affect's if any.  The Niacinamide form does not flush.

good luck on your journey.

“Consider what I say; and the Lord give thee understanding in all things” this included 2 Timothy 2: 7

posterboy by the grace of God,

For all those who have digestive problems and who still struggle with them.

2 Corinthians (KJV) 1:3,4  3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

 

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I was at this doctor ~ internist gastroenterologist. I explained all of my symptoms and problems it took me about 12 mins and i was fast and i missed some stuff, i've asked some questions and i gave him all of my test results, my biopsy results every serum test result i've had. He checked them and after 2 mins he prescribed me a new PPI pill to take. While telling me i have an uncurable autoimmun celiac diseasem, then he gave me a diagnose of" reflux with oesophagitis". Even tho my endoscopy with biopsy stated that "i may have a reflux but without oesophagitis"... The whole diagnose took him 2 mins then he answered all of my questions by saying "it's normal for celiacs"... Constant stoamch cramps... it's normal for celiacs... reflux like symptoms ... it's normal for celiacs.... undigested stuff in my stool... it's normal for celiacs... headaches with vibrating eyesight... .... it's normal for celaics.... everything is normal for celiacs it seems... i've even told him i was eating PPIs for 2 years it did nothing... then he replied by he can't believe it i must lie but even antacids doesn't work... antacids are bs he told me, i must eat PPIs... I've asked him about b3 ~ niacin deficiency he told me thats bs, DAO deficiency is bs too, basically everything is either normal for celiacs or bs.... Then he told me to go to a psychiatrist... Then he started the usual bs. about how should i live my life just like every other doctor did before...

Another wasted trip and money... :SIGH I really wish that i could find a place here to check this b3 deficiency because what some of you wrote before really made me think about it. It must be a very high possibility for me since the way i lived and ate during my chidlhood basically skipping almost everything with niacin...  :SIGH I've ordered some of this non-flush niacin pills with "inositol hexanicotinate" 500mg dose... but i really wish somehow i could be tested here... :SIGH

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1 hour ago, Jm34 said:

... but i really wish somehow i could be tested here...

If you're in the US and over 18 you can order a blood test via an online store. I do that at one that works with Labcorp. Your insurance won't cover it though.

 

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3 minutes ago, tessa25 said:

If you're in the US and over 18 you can order a blood test via an online store. I do that at one that works with Labcorp. Your insurance won't cover it though.

 

If only he was in the US he would not have half these issues with finding gluten-free foods, supplements, and doctors......wish the poor guy was in the US I would offer the guy a place to live  and cook for him for a few weeks.

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33 minutes ago, Ennis_TX said:

If only he was in the US he would not have half these issues with finding gluten-free foods, supplements, and doctors......wish the poor guy was in the US I would offer the guy a place to live  and cook for him for a few weeks.

Looks like you have him on a good diet anyway. As far as deficiencies go, my doc wants to wait until my numbers finish going down before checking for deficiences as many will resolve on their own.

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Jm34,  oh, how frustrating your doctor visit was! 

Could you have a sulfa drug allergy?  Those PPI's often are sulfa drugs.  Many Celiacs develop a reaction to drugs containing sulfur.  It's got something to do with an inability to metabolize them properly.

Perhaps your doctor could recommend a different medication, one without sulfur.

It's great you're trying the Niacin! I'm sure it will help. 

Be strong! We know that it's not all in your head.  We're all supporting you!  

 

 

 

 

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    • If someone is doing an elimination diet and not having dairy for a while, would I still be able to eat some cheese since it is low in lactose? Or is best to give up any and all dairy during elimination trials?  Oh,and for cheese, I think it was the Cabot website for hard cheeses that mentions almost all theirs is gluten free. But sounds like most cheeses are.  Still, it can be nice when the company's website mentions it. 
    • Thanks, Ennis.  Do you know, is corn considered one of the top 8 allergens?  I am not sure yet if dairy bothers me, but if it does not, I still need to look for corn starch or corn syrup in ice cream.  Luckily, some Haagen Dazs seems to be corn-free.   Thanks for the links.  
    • As your vitamin d and iron levels are low it suggests celiac disease because if I am not wrong ,your iron levels is low without any reason.  To rule out confusion you should go for celiac gene test. Because if your gene test is positive then you should go for  biopsy of small intestines to confirm the diagnosis about celiac disease.   I also have heaviness,nausea and various other symptoms I am on gluten diet since one year and my gene test is positive for celiac disease and symptoms also suggest.  So, according to my knowledge your all symptoms will get better after you start gluten free diet if you have celiac disease or gluten sensitivity.   Best of luck! 
    • I would avoid those "noodles" starches = gas right now.
      I avoid most stuff like cabbage, broccoli in all but the smallest amounts (1 leaf or 2-4 sprigs) and cook til mush. I found higher density vitamin greens to be best to avoid wasting the room I had for food, stuff like spinach, kale, butter leaf, romaine all have much higher ratios of vitamin A and K then other greens with less sugar, starches, carbs. So you can cram more in there.

      Soups, during flares, I find using meat and herbs to flavor them best, I got a Pots de Herb blend that is nice from The Spice House, tested gluten free for me. But gentle herbs instead of spices...think of Italian and french cuisines. Bit of oregano, basil, rosemary, thyme, etc. Avoiding peppers, spices, and going very limited to no garlic and onions. Funny fact they make bonito flakes (dried fish) like Eden Foods, that makes a good fish flavoring if you boil them into water. Not now but later you can do this with coconut secret aminos,  wakame, or kambu for a asian fish stock for soups.

      I would seriously suggest trying eggs...they have been my savoir for flares, I just cook them soft with almond milk in them in a microwave so they are moist...and soft.

      I treat myself about once a month with either canned tuna, salmon, or millers crab meat (the real stuff), I found the crab easiest to digest and a super strong flavor in soups or with eggs.

      But again step back and say "I will try this for the first week" "Try this the second week" etc. Step by step on how you will try stuff, I know you want to jump to it and try to see what all you can eat but you have to space it and take it every few days for your testing of yourself to be accurate.

      Simple foods, the fewer ingredients the better, give yourself a low single digit number and stick to it so you do not get overwhelmed.
    • I think turkey would be great!  I am sort of thinking you might just want to do a sort of bland diet - as if you were getting over the stomach virus.  So a simple chicken soup with some cooked veggies like carrots and green beans or peas - you can then put it over rice or rice noodles if you want.  I like your idea of staying away from dairy, etc.  You can do that for a few weeks.   Grill the chicken on the grill or cook with a little olive oil in a pan - you can get a nice brown on the outside that adds a lot of flavor.  then put  little water in the pan and boil it and scrape the bottom and dump that in with the rice or veggies that are cooking.  You can throw that chicken in your soup/ rice.  If you cook fresh spinach in things - it can add a lot of spinach flavor.   I think cooked fruits or veggies are usually the easiest to digest.  But really keep it to a few things for a couple of weeks then add then when you are feeling a bit better.
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