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Jm34

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

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Hi Jm34,

Recovery from celiac damage can take a 1 to a year and 1/2 or more.  We are talking about a stubbed toe or something minor like that.  The immune system doesn't stop attacking your gut and body just a couple hours after stopping gluten.  The immune reaction can keep going for weeks or months.  It takes time and a clean, gluten-free diet to stop the immune reaction and heal the damage.

You may start feeling better after a while but if you eat gluten again the entire immune system reaction will start up again and then continue for however long again.  So its real important for healing to avoid all gluten, even minor cross contamination.

Celiac disease is one condition where the healing process is very much affected by the person who has it.  We don't have to take expensive drugs or get expensive treatments like some other diseases require.  But we do have to eat gluten-free and take care of our bodies.  Many other diseases the patient can eat whatever they want and it doesn't matter.  But not us.

Our medicine really is our food.  You may have to learn to be patient with your body as it goes through the healing process.

Edited by GFinDC

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Now this crazy bad lump in the throat ~ irritation of my throat feeling has come on me in the last 2 days... It's so bad i can hardly drink or eat, i've had this yes i've had this already 6-7 years ago when i was diagnosed with celiac disease at the first time.

I tried to take sedatives and doing breathing techniques maybe it is stress or the rest?! But today i didn't even have any anxiety of any form... none at all, but my throat is crazy bad since the usual "machine" 16h-18h period... it even lasted until 22h or so... 

I even tried to take this weakest antacid chewing pill, it helped some on my throat but almost nothing.

I would like to try this antihistamine pill i've have here but i don't know if i can take it with the antibiotics i take now.

Then i went onto the net and read the 2 sites about "histamine intolerance" i found reliable, now this is one of it's symptoms listed in the first place... no wonders why nothing helps now and nothing helped 7 years ago... While the doctors call me stupid and so on...

As far as i can read out on these histamine intolerance sites i must take a 4 week long "rice only" diet ~ a histamine elimination diet but i would like to ask my doctor or some doctors because eating nothing but rice may cause deficiency diseases? Now even thinking about eating nothing but rice gives me nausea tho i really like eating rice, its one of my favorite food... ...

The same old story, like an open book i already know how i will feel or what i will feel it's the exact same process as it were 6-7 years ago since i don't know the exact dates but a really bad year of my life... maybe eating gluten free and trying to gain weight as the doctors stated me trully means i eat lots of histamine even tho in the last 2 weeks i'm trying to eat low histamine foods but there isn't any list or help exist...

Btw this nonstop "Hot flashes, attack of sweating, impaired temperature sensation" yeah i copied it out from http://www.histaminintoleranz.ch/en/symptoms.html is really bad. Like out of nothing like a rush or a flash i start to swell and feel like it's so warm then in the next moment the exact opposite i'm shivering like crazy... and this old acne thing came back from my teen times... :SIGH

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Man seems like you just keep hitting ALL HELL. Perhaps you should tell life to to screw off and not eat anything but prepackaged bottled gluten-free certified bone broth and sleep for 1-2 days. No pills, no other foods, nothing but prepackaged bone broth straight from the container. This means no contaminated cups, bowls, utensils, foods, pills, meds. Perhaps just a few days of rest and f$#% it all. Something in your daily life is messing with you and I think you need to lay to rest if it is something your eating or perhaps your being exposed to something in the air that is causing your body to go complete wacky. Ultimate process of elimination.

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Now another update on my symptoms.

It's all getting really worse now, my throat irritation is really bad which ends up in a huge chest pressure, it's so bad that i can't drink or eat anything. I'm scared as f$#% then i can relive it somehow sometimes with some of this weakest antacid or idk. Like after i eat i get this full stomach feeling, it's like i ate too much while i didn't then i drink some water and sooner or later my stoamch burns, however if i drink some of this Betain HCL this "full stomach" and bad feeling almost immediately goes away, but then in 2 days the throat and the chest pressure is really bad. So i immediately stopped taking betain HCL after lunch, then it get better in 4 days then everything started again, i have this pain in my jaws, ears, throat, chest and i keep burping after i eat or drink. The only way to relive it if i eat some of this weak antacid and i don't eat/drink/talk...

It was the same like this 6-7 years ago somehow the celiac diet again led me into this state, i don't get it why tho. I'm writing a food diet now and i ate some cottage cheese and some butter while genetically i'm not intolerant to lactose, and i don't have a milk allergy and i didn't eat any form of milk/lactose for the past 2 years or so... and eating lactose doesn't give me a diarherra this time...

On top of this really bad symptom my anxiety is in a 5-6 days rotation like i feel good then after 5-6 days i start to have anxiety problems... but this throat irritation is there all the time while the chest pressure is like a rotation or i don't know... :SIGH

Even after eating some foods like apples i get this huge sweating almost immediately which is another symptom thats here with me since a half year...

The gastroenterologist used to tell me i'm stupid that i have these symptoms because PPI pills didn't help on them...

Since the weather is really bad here -10, -15 celsius in the morning i'm trying to wait some but i may just go and see another gastroenterologist but they do nothing but endoscoping and giving me PPI pills and those just doesn't work... :SIGH

Idk if i can even get prepackaged gluten-free certified bone broth here... :SIGH

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Shop for pacific bone broth  on your local amazon.

https://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=pacific+bone+broth+&rh=i%3Aaps%2Ck%3Apacific+bone+broth+

Something like that, unsure on European brands myself. But a diet of just drinking a broth for a few days would be a good way to eliminate a lot of possible issues. Since you mentioned apples causing it I am wondering if it could be a allergy to fruits/sugars like fructose.  If nothing else I am wondering if you should try moving for a few days to another location, as it might be a mold or some kind of spores your inhaling messing up your throat. Times like this I wish I could offer to put people up in a hotel and help them address their issues -_-. I recall the hell of trying to find out what the frack is up with my body before I learned it was gluten, or my other intolerance's. So I really feel for your issues, and yours sound like something out of a nightmare.

Top it off I know the exact throat feeling, as I got into something with corn the other day and my entire throat got inflammation, blood blisters, and went raw including on my uvula. Had issues swallowing, gagging, and fluid issues with my own spit and mucus my body kept producing to protect the throat for a few days.

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1 hour ago, Jm34 said:

Idk if i can even get prepackaged gluten-free certified bone broth here...

It's easy to make your own. You just need some beef bones. Put them in baking tray and add a little water. Roast them for hr or so at a high heat then put them in a slow cooker for as long as you can manage up to 2 days.

You can add whatever vegetables you like:

http://nourishedkitchen.com/beef-stock-recipe/

I add some cider vinegar but you may want to avoid that if there's a potential issue there.  

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@Jm34It doesn't really make sense to take PPI's and antacids while also taking Betaine HCL.  They are directly conflicting with each other.  PPI's and antacids reduce stomach acid, while Betaine HCL increases stomach acid.  So making a choice on which direction you want to move your stomach acid level is the first thing to do IMHO.  No point wasting your money on taking medicines that have opposite affects.

**************************************

http://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

Low histamine level foods:

  • Fresh meat (cooled, frozen or fresh)
  • Freshly caught fish
  • Chicken (skinned and fresh)
  • Egg yolk
  • Fresh fruits – with the exception of strawberries, most fresh fruits are considered to have a low histamine level (also see histamine liberators below)
  • Fresh vegetables – with the exception of tomatoes
  • Grains – rice noodles, yeast free rye bread, rice crisp bread, oats, puffed rice crackers, millet flour, pasta (spelt and corn based)
  • Fresh pasteurised milk and milk products
  • Milk substitutes – coconut milk, rice milk
  • Cream cheese, butter (without the histamine generating rancidity)
  • Most cooking oils – check suitability before use
  • Most leafy herbs – check suitability before use
  • Most non-citric fruit juices
  • Herbal teas – with the exception of those listed below

High histamine level foods:

  • Alcohol
  • Pickled or canned foods – sauerkrauts
  • Matured cheeses
  • Smoked meat products – salami, ham, sausages….
  • Shellfish
  • Beans and pulses – chickpeas, soy beans, peanuts
  • Nuts – walnuts, cashew nuts
  • Chocolates and other cocoa based products
  • Vinegar
  • Ready meals
  • Salty snacks, sweets with preservatives and artificial colourings

Histamine liberators:

  • Most citric fruits – kiwi, lemon, lime, pineapple, plums…
  • Cocoa and chocolate
  • Nuts
  • Papaya
  • Beans and pulses
  • Tomatoes
  • Wheat germ
  • Additives – benzoate, sulphites, nitrites, glutamate, food dyes

Diamine Oxidase (DAO) blockers:

  • Alcohol
  • Black tea
  • Energy drinks
  • Green tea
  • Mate tea

Debatable:

  • Yoghurt – depends on the bacteria culture used
  • Egg white – it is a histamine liberator only when in its raw state

Other

  • Yeast – even though it does not contain histamine as such, yeast serves as a catalyst for histamine generation during manufacture. There is no yeast in the end product.

*********************************************

 

 

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Ofc i didn't take PPIs with Betaine HCL, the last time i ate a PPI pill were "6-7 years ago".

Now i got this huge abdominal cramps for today i took some pills for it. :SIGH My throat is still hurting but it got better but my stomach still hurts after eating... :SIGH

Later this day my knees started to hurt badly, i don't get it i used to have this strong knee pain since i was a little kid. Somehow i didn't have it for 14 years or so now it's here again... weird but this time also my ankles are hurting...

Also the skin on my stomach is really sensitive it's almost like it hurts to touch it even wearing my clothes kinda hurt... :SIGH

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Today i didn't eat anything but chicken broth. I've found a stainles steel pot in the house which were just sitting in the cabinet, and never been used before. So i cleaned that out and made some chicken broth. I didn't eat anything else at around 17:00 my throat started to be tired again... while my stomach is still feeling pretty s$#& the gut pain is way better. I took some digestive enzymes before eating my lunch and some probiotics. I've had a headache the whole day almost but it wasn't that bad and my whole belly is pretty much tired. Even after i was sitting at the stool for 4-5 hours yesterday i still had 3 times today. Once some diarherra but not that bad either...

Maybe i was glutened badly?! Idk. but my mother just keeps shouting at me that i didn't eat any gluten she is sure... The dietetics said to her that one can't get glutened through the skin so even if you touch gluten you can eat with your hand...  so it seems like she only talk to hypocrite people who have experienced zero problems... talk bs about how to keep a clean gluten free diet... :SIGH

I really don't know i eat some valeriana but it doesn't help on my throat and i have some chest pressure, mby i should try to take one antacid again... Seems like the only way to stop my throat problems is to eat plently of solid foods like bread biscuits and so on but i'm not even sure, at the first go of my diagnose i ate exactly what i was told to eat. Gluten free bread and gluten free pasta and lots of milk and cottage cheese, as my gastroenterologist and dietetic said while i was eating PPI pills prescribed and my throat problems and chest pressure were really bad. Now 6-7 years later when i'm here again trying to go gluten free i have the same problems but this time i don't really eat milk/cottage cheese i don't take PPI pills and i don't eat gluten free breads...

I just can't seem to understand what can fk up my throat so badly... :SIGH Every time i've had a panic attack before in my life it always went away by going out to the fresh air walking and taking some valeriana yet this fking throat problem just doesn't go away no matter how i try to relax. It's just this huge chest pressure feeling with this burning / dry throat feeling and makes me feel like my throat is tired... then my saliva keeps generating and... Somehow i manage to stop it 5-7 days ago but idk how, mby eating some homemade tortillas got the stuff in my stomach together?! But i really have no clue... my stomach burns badly randomly during the whole day. Like 2 days ago i didn't have any heartburn but then when i went to sleep at night i had a bad one... :SIGH

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I am reading a book right now that has  YOU  written all over it!  It is Wheat Belly- Total Health by William Davis, MD.  All grains, and not just wheat are extremely damaging.  YOU seem to fit this totally.  Even though you are avoiding wheat, you are having  TERRIBLE  symptoms.  Rice, millet, sorghum, corn, etc., are all causing problems in the human race.  The beginning of modern diseases can be traced to when we all started relying on the grains for much of our daily food intake.  Even tooth decay was almost non-existant before we started eating grains.  I would highly recommend this book to all GLUTEN SENSITIVE people... which is everyone on the planet!  It's a real eye-opener!  I now realize why I didn't have as much recovery after going GF for the last 3.5 yrs.  It's much more!  I was diligent in my GF baking and food preparation... however... I still had many symptoms.  In early Nov. we started eating low carb/high fat/moderate protein and had some improvement.  My husband had BIG improvements in overall health.  Eating this way naturally eliminated all the grains and led to more improvement.  Those of you still struggling would do well to read this book.  I can recommend others that I've read as well to fill in some more blanks.  We are the only ones that can get our health back!

Debbie

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I hadn't thought of that for this poor person, but you may be onto something.  I have cut out all grains except for corn tortillas, and feel I'm doing much better.  Each person is so different in what they can tolerate.

I have watched a lot of the youtube's by another guy that talks about some with Celiac's not getting improvements until they totally eliminate ALL grains.  All grains have a gluten protein, some are more similar to wheat, like rye and barley, some a little less like oats, and some can't tolerate that.  The other grains are less like wheat, but can still cause problems, sometimes the body can't tell the difference and attacks anything remotely similar.  Dr. Peter Osborne, author of "No Grain No Pain."  Web site:  https://www.glutenfreesociety.org/.     And search on youtube for his videos. Good luck, we're all pulling for you!

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After 2 days of eating nothing but chicken broth, my heartburn worsened to terrible levels and my chestpain at nght ~ 18h 19h were so bad again i couldn't even drink because of the pressure i was feeling. This pressure comes into my nose, my ears, like something pushes up my throat its very bad. Later at night when i went to sleep an insanely bad heartburn then i ate an antacid pill, a simple non PPI pill that turns acid into water... the heartburn got better then today i got up my stomach was full of something which caused an insanely bad nausea i almost vomitted, so i drank some Coca-Cola that my mother suggested me since it has some folic acid in it and it should be gluten free. I tried to do some stuff i couldn't because the nausea were very bad then i laid back to my bed it got better i also ate some homeopatic pill to nausea also my mother gave it to me. I slept about 3 hours then the nausea got better...

Somehow this is the thing if i eat a lot, i don't have this heartburn / throat problem but i have to eat a whole lot especially some kind of bread/biscuit/tortilla but really i eat 2 times any of my parents eat then my stomach is better it's really weird because i always feel that my stomach is full but if i keep eating and eating the heartburn is like nonexistent... while antacids just cause me nausea. It used to be like this 6-7 years ago, the doctor prescribed me PPI pills i had worse and worse heartburn and chest pressure symptoms i could barely eat at this 17h-20h period then he endoscoped me and my early morning stomach were full of fluid. Then he told me thats acid and i must eat more and more PPIs... So i ate more and more PPIs without any success he told me i'm stupid and gtfo, or i take pills for an undiagnosed Chron disease...

So the less i eat the worse i feel... which is very weird, thenmy internist tells me to stop eating that much because thats what causing me problems that my guts feel always full and i release stool 6-7 times a day huge amounts... :SIGH

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I take it the neck pain, headaches, mucus, skin, etc. issues all disappeared on this diet? And just leaves you with really bad heartburn. If this is the case you learned something you where eating was causing all the other reactions. From here you can try introducing some other food perhaps another ingredient like rice, making a rice gruel in the broth, This would tell you if it is a carb issues or a grain in general issue while making you quite full. I think this might be a good next step, if your other issues come back you try a different introduction in place of it after 2-4 days. Another poster mentioned grains so I think seeing how a simple easy to digest one like rice will be a trigger.  After that I might suggest removing the rice and trying boiling potatoes in the broth for another check.

It is a slow and painful process of elimination but we can get to the bottom of all your issues this way. But you have to stick to a pure diet without adding any other sauces, foods, seasonings, or potential contaminants. I know this might seem bland and hard but this is for the best. And yes avoid seasonings, premade bullion,  and non GF Certified broths in European countries it is common to add MSG etc from wheat to them, and it might be a seasoning you were reacting that was used everyday.

You can cook the rice in the broth just like water and it will take on the flavor. Or if you can get a new slowcooker/crock pot you can do a very nice over night gruel in it along with other dishes in the future that are simple.

I have acid reflux myself, not bad as yours it seems. But I know if I stop taking my meds and aloe vera for 48 hours I just start burping up acid, all day (literally just burping up acid been like this since I was like 14) Elevating the head of you bed with a brick under the legs helps when sleeping.

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Why did you think that Coca Cola is gluten free?  It's not labeled gluten free in the USA, is it there? The formula for big brands like that can be different in different countries. Anything with caramel coloring can be derived from wheat, so it would not be gluten free.  Unless it is labeled gluten free, I would not put it in my body. According to the manufacturer, in the USA, it is supposed to be gluten free meeting the FDA guidelines of 20ppm, but if they are not going to label it that way, I am not even going to take a chance of it here.  Until you figure things out, please do not put anything in your body unless it is a whole food. Make sure the broth is certified gluten free.  Or if it is homemade, make sure it is made in a purely clean environment, all pans scrubbed first, NO wooden spoons, etc.

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According to the manufacturer here its under 20ppm ~ Coke.

I made broth myself using stainless steel cookware... I even grabbed a completely new, never used before pot from the cabinet... Sadly this 2 day diet didn't eliminate all of my problems because this strange pain in my gut is still here, i used to think it's because my food must be cross contaminated but it shouldn't be. Its like i can't cook a chicken broth any cleaner than the way i did. This duodenal pain is really weird since the moment i stoped eating gluten it came back (just like 6-7 years ago when i used to take PPIs prescribed by a gastroenterologist) while both my CRP and EMA values are good in my serum tests... Some stuff is just weird how antacids doesn't work or how my stomach is way better if i eat Betain HCL... but then the chest pressure gets bad in 2 days... If i try the other way around and take some antacids to reduce these reflux like symptoms it's the exact same but with insane nausea... :SIGH

Then i started to have this weird fainting thing which were probably because i didn't eat enough food...

Basically now if i look at a bowl of chicken broth i'm almost vomitting... It's very hard to make a very strict diet when you get fed with food by your mother who can't understand that i want to make sure that it's not the food thats causeing me problems. Anywhere i look i see food.... :SIGH

The really weird thing is if i eat gluten free i'm basically more sick than if i'm eating normal food, maybe because my diet is narrow... while the doctors tell me to eat lots of cottage cheese, gf bread, fat, chocolate, even the celiac starter kit the dietetic and the doctor gave me is way more wide ~ is way less strict on kitchen stuff and food than what i'm actually trying to do or eat... which causing insanely bad enviroment at home. Since my mother keeps telling me it isn't gluten it isn't gliadin it isn't celiac i must have some other problem yet i still don't have any other diagnosis... they even did a radioactive contrast x-ray thing on me and it turned out that i don't have reflux... yet these symptoms still develop the less stuff i eat. Like when before i tried eating rice for 2 days on the 3rd day i were vomitting all over the house like when i saw rice i had a bad nausea...

Now my mother keeps nagging me again to see another doctor so i will go and ask one more but it's probably no use... I will see... :SIGH

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Hmm so rice did bother you, lets try boiling some potatoes chopped with a fresh knife in the broth and getting some carbs in there and no grains, Or you can just baked a Sweet Potato wrapped in foil and have it and drink the broth, Should help fill you up a bit. Might try boiling some eggs for perhaps breakfast the next day for some fats and protein. Hard boiling them will avoid using a contaminated skillet or cooking oil. We can see about eliminating eggs this way as a potential suspect. But let me ask to be sure, your joint issues, mucus, stuff have gone away? Taking your diet down this far is going to cause some gut distress as your body detoxes and adjust to the sudden change. The bacteria in your gut are going to be a little crazy for a week or so. But again we are trying find what foods are safe and what is not and build a list that you can later use for a regular diet,    I am a bit concerned about the reflux like issues, but I am thinking it might just be temporary and taper off ones your body clears and regulates to the new diet.

I honestly want to try cooking for you and provide you with a GF environment, and work with you on diagnoses on with my dietician. The hell your going through sounds like what I did over 3 years ago finding all my intolerances and allergys while living in a shared household where food/poison was everywhere.....bloody maddening.

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In the US, and probably all of the world, Coke is gluten free.  Caramel color is considered gf, even on the off  chance it was derived from wheat.  It's so highly processed, there is nothing resembling wheat left in the end.  

 

https://www.beyondceliac.org/gluten-free-diet/is-it-gluten-free/caramel-color/

"

Yes, caramel color in North America is typically gluten-free, although you should read labels just to be sure.

According to celiac disease expert Tricia Thompson, MS, RD, of Gluten-Free Dietitian, caramel color is an additive made by heating any number of carbohydrates, which could include dextrose, invert sugar, lactose, malt syrup, molasses, starch hydrolysates (like glucose syrup) and sucrose.  In North America, wheat is typically not used as a starting ingredient in caramel coloring.  Instead, corn is generally used in the U.S.  If wheat is used in caramel coloring, the label must say so per the Food Allergen Labeling and Consumer Protection Act (FALCPA).  In general, if caramel coloring is included on an ingredients label, but does not list wheat as an allergen, it should be safe for people with celiac disease or gluten sensitivity."

 

Edited by kareng

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1 hour ago, Jm34 said:

Since my mother keeps telling me it isn't gluten it isn't gliading it isn't celiac i must have some other problem yet i still don't have any other diagnosis... they even did a radioactive contrast x-ray thing on me and it turned out that i don't have reflux... yet these symptoms still develop the less stuff i eat.

Gluten caused the damage. Getting rid of the gluten should stop further damage, but your insides still need to heal.

I cannot take most pills/medicines due to other issues so I've learned how to use food for gastro issues instead of meds. I'll tell you what I've used for digestive issues, but everyone is different and you could be sensitive to the very ingredients that help me.

I eat small amounts of food no sooner than 2 hours apart. Any more than that and I get nausea.

I use Dreyers(Edys) slow churned 1/2 fat classic vanilla ice cream to coat an empty stomach. Eat only 4oz.

4 oz Morning Moos chocolate drink also coats. It comes in a large can so Swiss Miss hot chocolate might be a good substitute.

2 to 4 Lays potato chips helps me with stomach acid. No more than a 1 oz bag in a day.

 

Not the healthiest, but these things seem to work for me.

 

And you can try adding a tsp of butter and some american cheese to plain broth to make it taste better.

 

Good luck.

 

 

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Hi Jm34,

If it is a celiac reaction you are having you can't expect it to resolve in a couple days.  The immune system response is not going to stop that fast.  Generally it will take weeks to months for the immune response to slow down or stop.

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10 hours ago, Jm34 said:

According to the manufacturer here its under 20ppm ~ Coke.

I made broth myself using stainless steel cookware... I even grabbed a completely new, never used before pot from the cabinet... Sadly this 2 day diet didn't eliminate all of my problems because this strange pain in my gut is still here, i used to think it's because my food must be cross contaminated but it shouldn't be. Its like i can't cook a chicken broth any cleaner than the way i did. This duodenal pain is really weird since the moment i stoped eating gluten it came back (just like 6-7 years ago when i used to take PPIs prescribed by a gastroenterologist) while both my CRP and EMA values are good in my serum tests... Some stuff is just weird how antacids doesn't work or how my stomach is way better if i eat Betain HCL... but then the chest pressure gets bad in 2 days... If i try the other way around and take some antacids to reduce these reflux like symptoms it's the exact same but with insane nausea... :SIGH

Then i started to have this weird fainting thing which were probably because i didn't eat enough food...

Basically now if i look at a bowl of chicken broth i'm almost vomitting... It's very hard to make a very strict diet when you get fed with food by your mother who can't understand that i want to make sure that it's not the food thats causeing me problems. Anywhere i look i see food.... :SIGH

The really weird thing is if i eat gluten free i'm basically more sick than if i'm eating normal food, maybe because my diet is narrow... while the doctors tell me to eat lots of cottage cheese, gf bread, fat, chocolate, even the celiac starter kit the dietetic and the doctor gave me is way more wide ~ is way less strict on kitchen stuff and food than what i'm actually trying to do or eat... which causing insanely bad enviroment at home. Since my mother keeps telling me it isn't gluten it isn't gliadin it isn't celiac i must have some other problem yet i still don't have any other diagnosis... they even did a radioactive contrast x-ray thing on me and it turned out that i don't have reflux... yet these symptoms still develop the less stuff i eat. Like when before i tried eating rice for 2 days on the 3rd day i were vomitting all over the house like when i saw rice i had a bad nausea...

Now my mother keeps nagging me again to see another doctor so i will go and ask one more but it's probably no use... I will see... :SIGH

Hi,

Your gut will take time to heal and some foods are more difficult to digest than others, so during the healing process foods that encourage bad bacteria should be avoided.  This book was written by someone who had been given an ultimatum by doctors, who said removal of the colon was the only option for her daughter.  She fought that and researched the molecular structure of foods we eat and put her daughter on a diet linked to encouraging good bacterial growth and her symptoms disappeared without medication.  Sometimes other grains that do not contain gluten are hard to digest, until your body is healed.  Read this and consider trying the diet for a month.  It is not as hard as it sounds and has had amazing effect on various symptoms from neurological to intestinal.

http://www.breakingtheviciouscycle.info/p/about-the-author/

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How come a gastroenterologist tells my mother that if she uses a knife on a butter and a slice of standard wheat bread, i mustn't use the knife or eat the butter but if i touch a wooden cabinet handle with wheat stuff on it with my bare hands and then i touch my food during the preparation thats completely fine?!

Then in the end my mother tells me i'm a dipsh*t and i must go to psychiatrist if i don't agree with this doctor... :SIGH :FKINGFUNNY

What to do in a stupid situation like this?! :SIGH Enough banter for today since my mouth is full of saliva and a sour taste with a sore throat... :(

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And please be careful with anything with caramel coloring as I mentioned already. 

20ppm is not necessarily ok for you.  I do not do well on all foods, even those labeled gluten free.  I prefer CERTIFIED gluten free if I am going to eat a processed food.  Many studies have shown that sometimes foods labeled gluten free are at the high end of the 20ppm or even exceed it, not good.

There is lots of info about Coca Cola, some conflicting, but it is not labeled gluten free.  If it is not a whole food and at is not labeled gluten free, it shouldn't be put in your body.

http://glutenright.com/2011/06/04/is-coca-cola-gluten-free/

If you stomach gets upset and you need a carbonated drink to help you, please take one of the clear ones instead, like 7 up.

 

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On 2/3/2017 at 3:29 PM, deb_rn said:

I am reading a book right now that has  YOU  written all over it!  It is Wheat Belly- Total Health by William Davis, MD.  All grains, and not just wheat are extremely damaging.  YOU seem to fit this totally.  Even though you are avoiding wheat, you are having  TERRIBLE  symptoms.  Rice, millet, sorghum, corn, etc., are all causing problems in the human race.  The beginning of modern diseases can be traced to when we all started relying on the grains for much of our daily food intake.  Even tooth decay was almost non-existant before we started eating grains.  I would highly recommend this book to all GLUTEN SENSITIVE people... which is everyone on the planet!  It's a real eye-opener!  I now realize why I didn't have as much recovery after going GF for the last 3.5 yrs.  It's much more!  I was diligent in my GF baking and food preparation... however... I still had many symptoms.  In early Nov. we started eating low carb/high fat/moderate protein and had some improvement.  My husband had BIG improvements in overall health.  Eating this way naturally eliminated all the grains and led to more improvement.  Those of you still struggling would do well to read this book.  I can recommend others that I've read as well to fill in some more blanks.  We are the only ones that can get our health back!

Debbie

Wheat Belly is not the best book to follow with regards to what is safe for a Celiac to eat. It is another book that fear mongers. For example...... Rice, millet, sorghum, corn, etc., are all causing problems in the human race. Really???????  These grains, which many people eat safely, are causing problems in the human race?????? That's a bit melodramatic, don't you think?  And to even imply that all grains are extremely damaging, to use your term, is just plain not true.  The only grains a Celiac or gluten sensitive person needs to avoid are wheat, barley and rye. Unless of course you have an actual, proven allergy or intolerance to another grain.  That can easily be determined by challenge testing in an allergist or doctor's office, for best results.  But grains are not damaging to all and anyone who puts this nonsense in a book is not being responsible.  As you can see from the posts of late on this forum, there are many confused people out there who do not know what to eat and this type of book is not helping at all. I will add that there are some people who may actually have a problem with grains but usually they are diabetics who need to limit or omit them for good blood sugar control.  That makes total sense.  But no one with Celiac should eliminate all grains without first seeing if they have another problem with their GI tract that may be causing the problem.  Why eliminate a food group that comes with nutritional advantages when you may not have a problem with them?

In the beginning, my gut was so far gone and damaged I could not eat fats.  It took quite awhile for me to heal well enough to be able to do that.  Same with grains for many people. They are harder to digest and that alone could be the problem.

Many times, people notice they feel better when they eliminate grains but I also noticed from those who I knew that did so, did not eat very healthy to begin with so you are bound to feel better when you clean up your diet.  `

As far as the reference to tooth decay, sorry, but tooth decay can be traced back to when the human population began to eat  sugar.  It was introduced in Europe around 1100 AD.  When excavating remains from archeological sites, before that time period, people had fully intact teeth with no decay.  Not so much after sugar was introduced.  I know grains will break down as sugar in the body but it was the white stuff itself that started the whole tooth decay issue in humans.

 

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57 minutes ago, Jm34 said:

How come a gastroenterologist tells my mother that if she uses a knife on a butter and a slice of standard wheat bread, i mustn't use the knife or eat the butter but if i touch a wooden cabinet handle with wheat stuff on it with my bare hands and then i touch my food during the preparation thats completely fine?!

Then in the end my mother tells me i'm a dipsh*t and i must go to psychiatrist if i don't agree with this doctor... :SIGH :FKINGFUNNY

What to do in a stupid situation like this?! :SIGH Enough banter for today since my mouth is full of saliva and a sour taste with a sore throat... :(

Your first scenario with the knife and butter is direct contamination and is a big no-no for us.  You either have a dedicated gf house or you have dedicated condiments.  The second scenario may have some merit to it but think about it........I can't honestly say that I let my cabinet handles/knobs become that dirty where it might even be plausible for it to happen. When you do food prep, the first thing you should do before touching anything is wash your hands well. That eliminates the problem....as long as you don't have chunks of bread hanging from the cabinet handle.  ;)  With all honestly and seriousness, in the 12 years I have been strictly gf, I never have had to worry about knobs or handles anywhere....even when I travel.

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1 hour ago, Beverage said:

And please be careful with anything with caramel coloring as I mentioned already. 

20ppm is not necessarily ok for you.  I do not do well on all foods, even those labeled gluten free.  I prefer CERTIFIED gluten free if I am going to eat a processed food.  Many studies have shown that sometimes foods labeled gluten free are at the high end of the 20ppm or even exceed it, not good.

There is lots of info about Coca Cola, some conflicting, but it is not labeled gluten free.  If it is not a whole food and at is not labeled gluten free, it shouldn't be put in your body.

http://glutenright.com/2011/06/04/is-coca-cola-gluten-free/

If you stomach gets upset and you need a carbonated drink to help you, please take one of the clear ones instead, like 7 up.

 

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.

 

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