ive

You totally rock!!

Thanks, I hope it will be useful for someone

New Beginnings Nutritionals has B12 without sorbitol / mannitol / etc. Here is the link:

Open Original Shared Link

Other Ingredients: Purified water and potassium sorbate and citric acid.

Also I heard (but I am not sure) that Pure Encapsulations has pure B12 as well.

Hope that helps.

I can understand your friend, I am from Belarus (another ex-USSR country) and everybody I know has never heard of celiac disease / gluten intolerance there at all. Bread along with dairy are staple foods in Russian diet and culture. I live in Canada and I am intolerant to both gluten and dairy, so I actually dread my upcoming trip to visit my parents...

Here are some links that might help.

Open Original Shared Link - What is celiac disease?

Open Original Shared Link - What is Dermatitis H?

Open Original Shared Link - The list of allowed and prohibited food on gluten-free diet

Open Original Shared Link - Some brief rules to prevent cross-contamination

The first 2 links are not very good, unfortunately these pages were translated from English to Russian and were not edited properly, but it's easy to understand, Russian is slightly broken there. The 3d and 4th links are from the St Peterburg Celiac Society.

Unfortunately there is not a lot of information available on the Russian internet about celiac disease.

My husband is from Belarus as well and he tested positive for gluten intolerance as well. Here is a document that I prepared for my husband's parents when he went to visit them this fall. It explains what celiac disease is, where gluten can be found and how to prevent cross-contamination.

Диета без глютена и как предотвратить попадание глютена в еду

Целиакия, или непереносимость глютена - это автоимунная болезнь, часто передается по наследству. Вкратце - протеины пшеницы, ржи и перловки не усваиваются организмом и организм начинает атаковать свои же клетки, обычно кишечника, однако зачастую бывает, что поражен другой орган. Очень часто целиакия / непереносимость глютена проявляется наряду с другими заболеваниями, в частности, автоиммуными болезнями (люпус, артрит, диабет) часты случаи поражения щитовидки, нервной системы. Если этот диагноз игнорировать, то он нередко приводит к раку желудка или кишечника. Это заболевание не такой уж и редкое, но к сожалению, очень много недиагностированных. В России / Беларуси об этой болезни совсем мало что известно и естественно, диагностики тоже практически нет. Это не значит, что она не распространенна, это просто значит, что диагностика совсем не развита. Считается, что в Северной Америке целиакией болен 1 из 100-133 человек и только 3% из них продиагностированы.

Симптомы могут быть очень разными. Основные симптомы заболевания: боли в животе, проблемы с кишечником, изменение аппетита, рвоты, отставание показателей веса и роста, боли в костях, самопроизвольные переломы, агрессивное поведение, замкнутость, апатия, депрессивные состояния, кожный зуд, аллергические поражения кожи и органов дыхания, частые вирусные заболевания, анемии, носовые или другие кровотечения. Из редких проявлений целиакии отмечается ожирение.

Глютен

Lisa, you said you do not eat egg yolks. Can you eat other food that contains natural sulphur, e.g. cabbage, cauliflower, onion, garlic, etc?

Some people have sensitive stomachs and can not digest raw vegetables, may be that is your case too? I can not eat pretty much anything raw, I have to cook it first. As for the problem with bell peppers, I can not tolerate peppers with their skin on, they give me digestive issues. I have to roast them in the oven on 425F for 15 minutes, then put them in a ziplock bag and then in about 15 minutes it is very easy to peel peppers and you can use them for anything. I usually roast and deskin the whole bunch of peppers at once and freeze them so that I would have them on hand when needed.

Sorry to hijack your thread, but I'll be interested to hear any additional suggestions others may have, as they may apply to both me and your son.

Good luck!

Geoff.

Hello Geoff,

I do not have hives (knock on wood), but I do have certain "allergic-like" reactions to chemicals in foods, specifically histamine and amine. Did you consider Chronic Urticaria? Histamine-restricted diet is known to help manage this condition without antihistamines or with the minimal amount of antihistamies. You can read more about urticaria and histamine-restricted diet here: Open Original Shared Link

Also here is an article that describes Histamine Intolerance and also might be helful: Open Original Shared Link

If that's not enough and you still have symptoms on a histamine-restricted diet, you may look into Failsafe diet (a diet low in salicylates, amines, glutamates, etc). You can read more about Failsafe here: Open Original Shared Link

and here: Open Original Shared Link

That is what I did, I started with histamine-restricted diet and it did seem to help, but even when I was avoiding histamine-rich food completely I would still have reactions. I was able to correlate my reactions with the amount of animal protein I ate the previous day and then one of the members here (Rachel-24) gave me a link to the Failsafe diet (a diet low in salicylates, amines, glutamates, etc). Apparently I am sensitive to amines as well so I have to watch my amine intake also.

Hope that helps.

Thanks for recreating the thread Patti

How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? I've known for a while that I can't handle soy because every time I cook with earth balance, it made me feel gross. I also have found that I can tolerate limited amounts of grains at one time.

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.

I am too intolerant to gluten, dairy, soy and corn. My other sensitivities are not as bad, meaning that I can handle limited amount of nuts / legumes, e.g. on holidays.

But it would make my life so much easier if I would be just intolerant to gluten, dairy, soy and corn and wouldn't have my additional amine / histamine intolerance! I have some kind of threshold that if I eat too much food that is high in amine / histamine I would start to have unpleasant allergic reactions that may last for 2-3 days (depending on the amount of histamine / amines I ate). It looks like it did get better when I went gluten-free, but I still have these reactions... In addition to that for some unknown reason I do not tolerate almost all vitamins / supplements, even hypoallergenic ones and even the ones that other failsafers tolerate.

And yes, I too was able to eat anything, didn't have any allergies / intolerances whatsoever. In fact, nobody in my family has any known allergies. It all started 2 years ago, first dairy, then gluten, then soy and corn. I also had cats and a dog thoughout all my childhood / youth without any issues, but now I have "allergic" type reactions if I am in the same room with a cat or a dog. It is not a true IgE allergy, it doesn't show up on any tests. My body is reacting in a weird way to a lot of different things...

I am too one of the very sensitive celiacs. In my case sometimes it is hard to determine if I was glutened because I have very similar reactions to corn as well, my symptoms are mostly non-digestive, I get very depressed and tired. In addition to that I still do not feel well most of the time, I have other issues, so it is hard to determine whether I feel bad / depressed etc because I was glutened or it's just a bad day. Fortunately my husband is gluten-free as well and his symptoms are more obvious, so I usually look at how he feels if I am in doubt.

Just recently we had to change our baking flour supply. I had too much trust in one of the local companies that sells gluten-free flours and mixes. As it turned out, this company manufactures only some of their flours; they outsource the majority of their flours to other vendors and I do not think they make sure these outsourced flours are milled in a gluten-free environment. Of course, when I wrote to them I got a standard reply that they test all of their products and find them to be gluten-free, but this is not enough for me. It's too sad that I didn't figure it out earlier. People on this board did not have any problems with this brand; that's why I was in denial and was using these products for a year. I kept getting mysterios "glutenings / cornings". One time my husband started to have his glutening symtpoms after I made a new batch of gluten-free flour mix and opened a new box of potato starch from this local company and baked some cookies. That was the only new thing I baked / cooked so I started to investigate. From now on I am buying all my baking supplies from Authentic Foods, they mill all of their flours themselves. The flours are really good but expensive, the shipping to Canada is expensive too, but I feel like there is no other choice.

It's hard to be so sensitive. For now my strategy is to cook from scratch and buy products only from the trusted and tested by trial and error companies, like Jerseyangel does. I will not go to a restuarant any time soon; I was glutened by a straight iced Americana coffee in Starbucks. I will try to host all dinner parties at my house too.

Here is a list of corn-free products: Open Original Shared Link

Here is a list of corn-free and gluten-free products: Open Original Shared Link

These lists are outdated (they were current as of December 2007 and October 2007 respectively) but still they might be helpfull.

Also here is the list of the ingredients that are derived or might be derived from corn:

Open Original Shared Link

It is really hard to avoid corn, it is everywhere. In addition to my other food intolerances I cook from scratch most of the time and buy a very limited amount of processed food.

Hope that helps.

have you ever tested Miss Robens products like their flours, guar gums, baking powders, etc.? If not, have you ever tested any companies who carry a full line of baking ingredients we can trust?

Gentleheart,

Authentic Foods states on their website: "Authentic Foods manufactures Gluten-Free Flours, Mixes, and Baking Supplies. All of our flours are stone milled and packaged in a wheat-free and gluten-free environment." Open Original Shared Link)

They carry a whole line of baking supplies. Their products are somewhat expensive, but their flours are really good. I am extra sensitive to gluten as well and just recently had to switch all my baking supplies to Authentic Foods.

Is it possible that you are sensitive to corn / cornstarch? Glutino bagels and all of their bakery products contain corn in some form. Corn gives me a very similar reaction to glutening (not always digestive issues), so in the beginning of my gluten-free diet I thought I was getting glutened a lot, until I excluded corn from my diet.

I've seen one brand of coconut that is organic and unsulfured.

I think "Let's Do Organic" Coconut doesn't have any sulfites in it: Open Original Shared Link

Ryza rice milk is gluten free. It is available in Loblaws (at least in Ontario) and health stores in the refrigerated section as well as shelf-stable:

Open Original Shared Link

It is called fructose malabsorption or Dietary Fructose Intolerance (there is another type Hereditary Fructose Intolerance which is genetic). Wikipedia has a nice article about it: Open Original Shared Link

It is diagnosed with a hydrogen breath test, very similar to the lactose intolerance testing. I am surprised the doctor doesn't know about this.

If you want to go one step further and eliminate foods that are high in fructans as well, you can read this article here: Open Original Shared Link

Hope that helps.

I actually eliminated casein almost 1 year before eliminating gluten. And even before that I was dairy-lite for 1 year, i.e. I figured out I was lactose intolerant and ate only sour cream / yogurt / cottage cheese occasionally. However, only after eliminating gluten I started to feel better, so this theory about casein being the culprit definitely does not apply to me.

Oh dear...why did she tell you to take BEFORE your meal???? The packages I have say "during" or "after". I can see how this irritated your stomach (especially if you did not eat within seconds of taking that pill). No food in there and a hefty dose of acid right in. If you even waited a few minutes with that pill in there, it would cause irritation.

It might also be that your stomach was damaged to begin with. For that there is a product called PepZin GI. It heals the stomach. One could take that for a month with a lower protein diet to allow the stomach lining to heal. Then if there is still a problem, try the HCL.

**As always please do your own research and/or consult your Dr. before taking any supplements.

Thanks, ShayFL. I am sure my stomach was damaged / irritated before HCL, probably from gluten consumption, but I didn't have any symptoms of digestive issues before I started taking HCL. I did have (I still have some of them) a bunch of weird and unexplained symptoms which I realized were connected to digestion only in the summer of 2007 and that's why I went to naturopath. I suspect that HCL burned my stomach lining and it's still not back to normal.

Thank you for the suggestion of PepZin GI. I will look into it further.

Thanks Ali, This is me to a T but I also seem fructose intolerant. I collapsed last week after a tomato soup containing fructose. Apples are bad for me etc.

Hi Georgie,

Apples are usually high in salicylates. Tomatoes are high in salicylates, amines and naturally occuring glutamates. So may be it is possible that you are actually not fructose intolerant but can not tolerate salicylates. You can read more about salicylates intolerance and Failsafe diet here: Open Original Shared Link

Here is a list of foods containing high amount of salicylates: Open Original Shared Link

I think there is a breath test for fructose intolerance (very similar to lactose intolerance), so you might ask your doctor to prescribe you this breath test and then you will know for sure whether you have fructose intolerance or something else.

Hope that helps.

But taking HCL is not dangerous in anyway (unless you go crazy with it taking tons of it). Take 1 tab with a protein meal. If you feel fine or better...no worries. If you get "some" improvement but not enough, the next meal try 2 tabs. If you get a burning in your stomach simply take a little water with baking soda (1/2 tsp) to neutralize the acid. This works quickly. (The burning indicates that you DO NOT need the extra acid), but a few trial times will not cause problems at all. If you get the mild burning after a few goes...you dont need the supplement.

I just wanted to warn people. My stomach "crisis" which led to my gluten intolerance diagnosis actually started from me taking 1 tab of Betaine HCl before dinner (once a day) on the advise of my naturopath. It was in October 2007. I did not have any burning sensations in my stomach after taking Betaine HCl. Actually in the first 2 days everything was great, I though it was working. I also did not have any stomach pain at all before this "treatment". After 4 days of taking it I developed sharp stomach pain after eating pretty much any food and for 3 months I could eat only rice, potatoes, buckwheat and cooked carrots and zucchini without having stomach issues. Eventually in December 2007 I discovered that when I eat bread my stomach pain is worse and that lead me to this site and to my gluten intolerance diagnosis. I was gluten intolerant my whole life, I am sure of it, but for some reason it took 4 days of Betaine HCl ingestion to bring stomach issues on the surface and eventually led to my diagnosis. Unfortunately even now, more than 1/2 year later I still have issues with my stomach. Even now I can not eat almost all raw vegetables or hard to digest items. I still can not comprehend how just 4 days of HCL screwed up my stomach.

I know that a lot of people take Betaine HCL without any problem or issues, but please think twice about it if you have sensitive stomach. I do not want to scare anybody, I realize that probably my experience is unique and the vast majority of people would not have any problems with it. I just wanted to write my negative experience so that you would have 2 sides. Better safe than sorry.

As for issues with meat, I too have them. I have to follow low-protein diet. One of the reasons is that I react to amines in meat. Amines are the result of protein breaking down and so any cured / processed meat will give me a reaction (not GI issues though, more allergic-like reaction). Also any meat that is older than 2-3 days will give me reactions as well. These reactions are the reason why I acutally started to take Betaine HCL, I knew I had reactions after eating meat, I just didn't know why and my naturopath thought that Betaine HCL would help. If you want to research this info about amines further, you can read more about it here: Open Original Shared Link

Also FAILSAFE diet eliminates salicylates and most amines and glutamates. There are more than 4 FAILSAFE helpful Yahoo groups if you are interested. And it looks like amine intolerance can cause gastrointestinal upset as well. You can read more about FAILSAFe here: Open Original Shared Link

Hope that helps.

I react to all the food chemicals....salicylates probably being the worst. Oxalates are probably a big problem as well. The oxalates can be detected in urine....the test is OAT and its done by Great Plains Laboratory. They test for several organic compounds in the urine (most unrelated to food).

I avoid foods which contain significant amounts of salicylates, amines, oxalates, glutamates, sulfur/sulfites....and in addition to that I avoid the food dyes, preservatives, additives, nitrates, BHT, BHA, TBHQ and other synthetic chemicals.

Rachel,

Thank you very much for your answer. I too do a lot of my own research. Your post gives me a lot of material to think about and to research.

I too react to the food dyes, preservatives, additives, nitrates, BHT, BHA and other synthetic chemicals. Also perfumes, tobacco smoke, household cleansers (non-natural), etc. That was actually the first thing that I discovered and so I cook almost everything from scratch for more than a year now.

Thanks again for your informative post.

For me allergy testing was not helpful since I have intolerances...not true allergies. Even though I reacted to everything...including environmental stuff...I dont test positive for anything in allergy testing.

Even IgG testing for delayed food sensitivities didnt help me. I reacted to nearly every food and yet in the testing nothings showed up...out of about 130 foods...there was only a handful of things that I had a mild intolerance to.

It ended up that I dont react to the foods themselves...I have difficulty breaking down the chemical compounds which are found naturally in the foods. So its an enzyme problem and an inability to process food chemicals. Thats the reason my intolerances are so extensive....and yet nothing shows up when the foods are tested. I dont actually have antibodies to these foods. I cant process the chemicals and they accumulate in my system causing reaction.

Rachel,

My allergy tests did not show anything either, even wheat / gluten sensitivity. I got tested positive through Enterolab for gluten sensitivity / intolerance. I do feel better on gluten-free diet, however, my issues didn't go away after almost 6 months on this diet and I am starting to think that gluten is just one answer, not the complete answer to my issues.

I wonder if I too react not just to foods but to their chemical compounds. I know that if I eat too much animal protein I will have a reaction either this or next day. Also if I eat too much food rich in histamine I will be more reactive in general. My reactions are not gastrointestinal, they are more like allergy-like reactions. I found it out by myself, mostly by trial and error. There are no knowledgeable doctors helping me. Could you please tell me how you found out to which exact chemical compounds / foods you react? And which chemical compounds / foods you react to? If you prefer, you can send me a PM.

Thank you very much!

Hi Leslie,

In my original e-mail to them I asked about shared equipment too; they completely ignored my question and just wrote that they test their enzymes after processing and they are gluten free.

Also as I wrote in a different topic my V-Gest bottle has statement "Manufactured for Enzymedica, Inc." May be I read too much into this statement but judging by this they might actually outsource the production of their enzymes and that is why they just don't know wheather the equipment is shared with wheat / rye / barley / oats. I might be completely wrong of course, but there are some people who react to Maltase. And I am very sensitive. And I do take different more powerful digestive enzyme without problems now.

Also I found this post before ( Open Original Shared Link):

I used the Tepnel home gluten test kit on Enzymatica Digest Gold and it recorded a strong positive (greater thatn 10%). I am trying to contact Enzymatica to see what they have to say.

I asked eroralaeta if she heard anything back from Enzymedica but she did not get back to me.

I take their digestive enzymes without issues. You know their whole deal is helping people with intolerances (especially gluten). So there is a possibility that you were reacting to something else in them.

I react to their V-Gest enzymes as well. I stopped taking it and now take a different more powerfull digestive enzyme and I don't have any side effects, no die-off effects. I thought it was a die-off effect in the beginnining, may be because of Candida. But no, I am fine with different digestive enzyme. I suspect I react because it contains 300 Dp of Maltase and Maltase can be derived from barley. There was a topic recently about it here: Open Original Shared Link

Also my V-Gest bottle says that "Manufactured for Enzymedica, Inc". I might be wrong, but judging by this statement they do not actually produce their enzymes themselves; they might outsource their manufacturing of enzymes to some other company so they might just not know about whether their equipment is shared with wheat / rye / barley / oats. May be I am reading too much into this statement. They test their enzymes and therefore consider them to be gluten free, but some sensitive people like Leslie and I do react to them.

Hello All,

Does anybody use Dr Ken mouthwash? Is it safe? I contacted the company about a week ago but I didn't get any reply yet. The ingredients seem to be OK, but I am very sensitive and I thought may be someone here uses this product.

Here is their website: Open Original Shared Link

Here are the ingredients of Maximum Care Mouthwash:

Green Tea Extract Infusion, Aloe Vera, Natural Flavor (plant) and Menthol, Vitamin C, Zinc Chloride, Sodium Bicarbonate, Papain (papaya plant), Citric Acid Cleanser, Propionic Acid, Vegetable Glycerin (kosher).

Thanks!

Leslie-FL, did you hear anything back from Enzymedica?

I read this topic: Open Original Shared Link and apparently malt diastase or maltase can be made from barley. V-Gest has 300 Dp of Maltase. I wonder if that is why I react to V-Gest. I guess it tests below the 20 ppm or whatever threshold they use to test it, but it's enough for me to react. My current digestive enzyme does not have Maltase in it.

I don't have children and I don't know how old your son is, so my advice might be irrelevant.

If your son is old enough, may be you can make a deal with him that he will not eat anything with gluten for a month and you will revisit this question of eating gluten-free in a month. Hopefully in a month his major symptoms will clear up and he will see that he does feel a lot better without gluten in his life. I really hope he will not cheat though in this month, may be yu can promise some kind of reward to him if he doesn't cheat, I don't know.

Also try to get your son and your husband to read book by Dr Green called "Celiac Disease: Hidden Epidemic". This books gives you a clear picture of different diseases in undiagnosed celiacs or people with celiac who do not follow gluten free diet.