Protein?

[bobbymoon]

I know this post is a bit lengthy, but please bear with me as I am sincerely lost.

I am a 22 year old male. Gluten began seriously affecting my life around the age of 17. It was four years of constant doctor visits until I found out what Celiac disease was. I suffered all the common gastro symptoms but to be honest never noticed them because they were always there. When your bowels are always acting weird I suppose it becomes normal in a way. What got me was the mental symptoms. Anxiety, depression, depersonalization, extreme fatigue, near catatonic states, intense brain fog, the sensation that everything around me was moving, irritability, that weird buzzing feeling in the head, etc. I was actually diagnosed with schizophrenia before I found out about gluten. I can't say that I can recall a single moment of mental clarity in these past years.

Now I have never been diagnosed with celiac disease. My mother has always had the same symptoms as me to a lesser degree and heard about gluten so we both started the diet about a year ago. Things seemed to get a little better but not completely. I began reading and studying gluten and found that many Celiacs are intolerant of other foods as well. I became obsessed with having a normal life and trying to figure out what would work for me.

Since then I have gradually cut out:

-ALL processed foods

-Nightshades (tomatoes, eggplants, peppers, potatoes, but I still smoke)

-Cashews

-Soy, peanuts and any other foods high in lectin

-All tropical fruits

-Meat (except fish)

-Corn

-Alcohol

-Any food not prepared by me at home

I was basically only eating rice, fish, nuts, dairy, and certain fruits/vegetables. Still I was feeling quite strange all the time. Finally my mom got tested. She was positive for gluten and scored a 22 for Casein. Having cut out dairy I began having these brief moments of clarity in between the constant mental weirdness. Now I have been feeling especially weird these past few days and the only new thing I have added to my diet is kidney beans which I prepared myself from scratch.

I know this is a crazy notion, but could it be protein? I mean gluten, casein, lectin. They are all proteins. They all provoke similar reactions. Beans are high in protein.

I am at a loss. All my friends and family are beginning to worry about the amount of foods missing from my diet, and I think cutting out all major protein sources is borderline crazy at best. The point is I am willing to eat a bowl of plain rice a day if that's what it takes to feel normal. I have long since given up the silly notion of actually getting pleasure out of eating. Seeing a doctor is not a possibility as I am living in Europe without health insurance. Plus I find that they don't seem to know much about Celiac disease anyway.

Advice? I'm willing to try anything.

[KimmyJ]

First of all, I'm really sorry that you're feeling so awful. It sure is a frustrating process of trying to figure out what will make you feel better. Secondly, I know several people have talked about eliminating certain foods at first to allow your body a chance to heal and then reintroducing them one at a time several months later to see which ones you are truly able to tolerate once your gut heals. I'm not sure what to tell you about the protein thing, I've never heard of that. Have you been to see a nutritionist? If you can find one that is very familiar with Celiac disease, it's even more beneficial, but even if the nutritionist is not, they are very good at figuring out how to balance out your diet, even with restrictions because they often think of things that I know I haven't thought of. That might be a good place to start. Also bear in mind that if you're deficient in certain vitamins and minerals, you won't be feeling 100%, so it might also help to have your vitamin levels checked if you haven't already and to get some good supplements. I hope that helps. Good luck and keep us posted on how you're doing!

[Ursa Major]

It could be all lectins. Meat protein is NOT the same thing, so you might want to cut out all the lectin foods (which you have pretty much done except for legumes and rice) and put the meat back in!

Here is a link that might be of interest to you. Open Original Shared Link

You may want to eliminate all grains (including rice) as well.

Tobacco is a nightshade. I am severely allergic to tobacco smoke. If you really have a lectin intolerance, then you may not feel better until you stop smoking.

[scotty]

"When your bowels are always acting weird I suppose it becomes normal in a way."

SO TRUE SO SO TRUE

"I am willing to eat a bowl of plain rice a day if that's what it takes to feel normal."

i tried the rice diet for almost two years and became so utterly pale my lips were pasting. grant it i was still eating gluten in my bread, but for two years it was gobs of rice, tuna, bananas and mushrooms since they were the only things not giving me D or pain. now it is cod and cauliflower. not fish! Cod. not cauliflower...Calorganic brand cauliflower only. otherwise i have a vague feeling for two days or so. spots, loss of motor controls, etc. as far as trying the rice diet again now that i know about gluten...the Candida makes me reconsider. whenever i eat any kind of carbs or grains my circulation corrodes and i get cold and the flu infests me like an achy web of cobwebs in-throughout my tremoring nervous system; stems from my digestive track, the attachments are crazy how my gut winces at some pinch then my calf cramps or swells, my elbow gets soar. i can't get my feet warm on a moderate day........---underlying issues is the theme round here---

[gabby]

Keeping a food journal is a great tool that can help you hunt down those things that are bothering you. Yes, they are a bit of a pain in the neck to do, but it is a very worthwhile pain in the neck. So, if you can do a food journal for 2 weeks, you should be able to spot the problem areas.

Here's how to set up a journal (either by computer, or just in a notebook)

-one page per day

-14 pages (for 2 weeks....more pages for more days)

-Now, make headings and columns for the following information in this order:

-what time did you wake up this morning:

-how did you feel upon waking:

-how did you sleep last night:

-special notes: (this is where you would write in anything special going on: a dentist appointment, exams, have the flu, there's a snowstorm, etc)

Now make columns for the following:

-Time Eaten:

-Food Eaten & Amount

-Reason for Eating

-Effects during eating

-Effects after eating

-Cigarettes: time smoked, number smoked, brand

At the bottom of the page, leave a section called Toiletries, and here jot down what you used during the day and the amount. i.e. Colgate winterfresh toothpaste, Dove shiny conditioner, hand cream, shampoo, deodorant, mouthwash, hand soap, etc.

That's it. Be sure to write down exact amounts of food. Write down the brand of anything you are using. And all the ingredients: fruit salad should be: fresh green seedless grapes, 1 orange, 1 banana, etc.

At the end of 3 days, look over the journal entries and note anything suspicious. Like if you had nightmares the night after eating certain beans, or something like that. After a week, review again. After the 2 weeks is up, you should start seeing definite patterns to foods that are causing problems.

I know it sounds like lots of work...but it isn't really. Just tell yourself to do it for 2 weeks.

Hope this helps! It has helped me tremendously. I never would have caught several things that were making me sick without doing a food journal.

[dbmamaz]

I've always been to spacey to keep a food journal. I'd start one, keep it up for a day and a half, and suddenly, 2 weeks later, I notice that I had stopped.

I did a lot of testing (A.L.C.A.T and allergist) to find the foods I was probably reacting to. I have 3 kids and just didnt have the energy and patience to figure it out on my own. I do believe the A.L.C.A.T is available in europe, but its not cheap (and almost never covered by insurance anyways). Dont spell it without the dots or the word gets changed into an insult . . . someone used to spam it.

Anyways, I can relate to some of your issues - when I quit gluten and casien, 2 mo in to it my anxiety and depression lifted. Now if I find myself muttering, I hate my life, under my breath, I wonder what I ate cuz i'm sure it was gluten.

I have a 12 yo son who is on antidepressants and 2 antipsychotics (but they say he's bipolar and aspergers, not schizophrenic) and i'm going to order the test for him soon too. I"m really, really hoping that getting him off the right foods will make a huge difference.

That said . . . i'm not expecting full recovery. although our food intolerences can make us much worse, i'm not so convinced that, after all these years and whatever other genetic issues we have, we can become 'totally normal'. So while its good to find a way to feel as good as you can . . . dont lose track of the fact that you do have to balance nutrition against mental clarity. You may not be able to achieve perfect mental stablity and maybe that has to be ok.

Of course, they say excersize is also a very important part of recovery, as excersize (hmm, can i spell, or what) releases all sorts of good brain chemicals. For now, i just walk my 12 yo dog 3x a day, but i'm really hoping to get in to a regular excersize routine next year when my youngest goes to school

Best of luck to you . . . just remember balance . . .

[aikiducky]

It could be all lectins. Meat protein is NOT the same thing, so you might want to cut out all the lectin foods (which you have pretty much done except for legumes and rice) and put the meat back in!

Here is a link that might be of interest to you. Open Original Shared Link

You may want to eliminate all grains (including rice) as well.

Tobacco is a nightshade. I am severely allergic to tobacco smoke. If you really have a lectin intolerance, then you may not feel better until you stop smoking.

I so completely agree with Ursa I wanted to quote her in full. It would be a good idea to try cutting out lectins and adding a bit of meat back. That way you do get the protein you need but you have a good chance of avoiding the kinds of proteins you seem to react to.

Pauliina

[missy'smom]

I spoke to my sister just today and she said that the bag of Goya dry kidney beans that she bought said "may contain wheat" on it. I tend to get mental/emotional symptoms from cross-contamination.

[KimmyJ]

Keeping a food journal is a great tool that can help you hunt down those things that are bothering you. Yes, they are a bit of a pain in the neck to do, but it is a very worthwhile pain in the neck. So, if you can do a food journal for 2 weeks, you should be able to spot the problem areas.

Here's how to set up a journal (either by computer, or just in a notebook)

-one page per day

-14 pages (for 2 weeks....more pages for more days)

-Now, make headings and columns for the following information in this order:

-what time did you wake up this morning:

-how did you feel upon waking:

-how did you sleep last night:

-special notes: (this is where you would write in anything special going on: a dentist appointment, exams, have the flu, there's a snowstorm, etc)

Now make columns for the following:

-Time Eaten:

-Food Eaten & Amount

-Reason for Eating

-Effects during eating

-Effects after eating

-Cigarettes: time smoked, number smoked, brand

At the bottom of the page, leave a section called Toiletries, and here jot down what you used during the day and the amount. i.e. Colgate winterfresh toothpaste, Dove shiny conditioner, hand cream, shampoo, deodorant, mouthwash, hand soap, etc.

That's it. Be sure to write down exact amounts of food. Write down the brand of anything you are using. And all the ingredients: fruit salad should be: fresh green seedless grapes, 1 orange, 1 banana, etc.

At the end of 3 days, look over the journal entries and note anything suspicious. Like if you had nightmares the night after eating certain beans, or something like that. After a week, review again. After the 2 weeks is up, you should start seeing definite patterns to foods that are causing problems.

I know it sounds like lots of work...but it isn't really. Just tell yourself to do it for 2 weeks.

Hope this helps! It has helped me tremendously. I never would have caught several things that were making me sick without doing a food journal.

Don't want to steal the thread, but I wanted to say thanks to Gabby for posting this - having a definite format like this is super helpful.

[tarnalberry]

...

Since then I have gradually cut out:

-ALL processed foods

-Nightshades (tomatoes, eggplants, peppers, potatoes, but I still smoke)

-Cashews

-Soy, peanuts and any other foods high in lectin

-All tropical fruits

-Meat (except fish)

-Corn

-Alcohol

-Any food not prepared by me at home

I was basically only eating rice, fish, nuts, dairy, and certain fruits/vegetables. Still I was feeling quite strange all the time. Finally my mom got tested. She was positive for gluten and scored a 22 for Casein. Having cut out dairy I began having these brief moments of clarity in between the constant mental weirdness. Now I have been feeling especially weird these past few days and the only new thing I have added to my diet is kidney beans which I prepared myself from scratch.

I know this is a crazy notion, but could it be protein? I mean gluten, casein, lectin. They are all proteins. They all provoke similar reactions. Beans are high in protein.

I am at a loss. All my friends and family are beginning to worry about the amount of foods missing from my diet, and I think cutting out all major protein sources is borderline crazy at best. The point is I am willing to eat a bowl of plain rice a day if that's what it takes to feel normal. I have long since given up the silly notion of actually getting pleasure out of eating. Seeing a doctor is not a possibility as I am living in Europe without health insurance. Plus I find that they don't seem to know much about Celiac disease anyway.

Advice? I'm willing to try anything.

Proteins in general - be they major sources or minor sources, are what generally get the immune system going. Just because they are longer, more specific chemicals than sugars. I wouldn't say it in any way means you need to cut all major sources of protein out of your diet. Heck, it's the protein in strawberries that people allergic to that fruit react to - that doesn't mean they have a problem with protein.

I would say, though, that based on what you've got listed there, you should consider if you've got a legume sensitivity/allergy, that possibly extends to all legumes. Heck, you may find that if you remove all of those, there are some other foods you can bring back in (maybe, maybe not). Either way, worth checking on.

Also, are you including eggs as a source of protein? Those can be very useful.

[Ursa Major]

Also, are you including eggs as a source of protein? Those can be very useful.

That is very true. But if he appears to be lectin intolerant, he may not be able to eat eggs, as they are a lectin food.

[gfpaperdoll]

Why are you not eating meat? I also agree with Ursa.

some of us cannot even tolerate rice - especially on a regular basis. If you will stay off the dairy & cut out the grains & eat more meat - I eat pork, chicken, turkey, fish, shrimp, crab - I am allergic to beef - a couple of your other food intolerances might get better, like corn & more fruits...

be sure to get some fat in your diet, meat fat (bacon & the fat), olive oil, coconut oil...

a lot of us are sensitive to beans - I only eat pinto beans & no peas. Try almond butter to replace peanut butter.

welcome to our group & let us know if you need any meal ideas etc. BTW you might want to check out the Paleo way of eating - that is the way I eat with a few little exceptions like sweet potatoes & the occasional corn bread & corn tortilla. Just google paleo & you will get some info.

[YoloGx]

I agree you could have a big problem with beans and rice. Certainly best not to have together in my experience. I usually limit my beans. Depends of course on how healed your gut is.

Apart from all that, I found that I was low in B-1 which creates a kind of Beri Beri situation. Including the visions, spaciness, heart palpitations, aches and burning of feet and legs and arms etc. B-1 is needed for basic carbohydrate and protein metabolism. You get my drift?

Deal was I was taking B complex but it was doing me little good since I have difficulty with malabsorption esp. of B vitamins (as well as D and minerals and Essential Fatty Acids) common with celiac. I got almost immediate good effects from taking co-enzyme B vitamins. Initially I used sublinguals but found I didn't like the sorbitol. So instead I take Country LIfe co-enzyme B complex twice a day once at night and once early in the morning an hour before I eat--idea is to take it on an empty stomach for best effect. It made a huge effect for me. No longer racing heart, legs and feet etc. calmed down, brain functioning etc. etc. Taking B complex works better than just taking the individual B-1 for me since my understanding is that the B vitamins should be balanced with each other for best effect.

Also found I am very sensitive to trace glutens from shampoos, lotions, hand soap etc.

Taking dandelion root caps or tea or milk thistle caps really helps--as does yellow dock alternated with oregon grape root or barberry also either tea or caps not tinctures due to the grain in alcohol. Clears body and brain of inflammation from toxins due to leaky gut syndrome etc.

Good idea too to look into your teeth situation. If you have silver amalgams they may be really messing you up. Take out only one at a time once a month however since the process releases all kinds of toxins into your system. There are various protocols you should take to protect yourself that you can look up on the internet -- or just ask me later.

Saunas, mud packs etc. will also help get rid of excess toxins--which with your symptoms is likely.

Regular ingestion of freshly ground flax seed (1 tbsp.) with 1/4 tsp apple pectin mixed into the fresh seed before grinding in your clean coffee grinder then mixed in water, drunk and chased with more water will help pull out toxins from your intestines plus act as a gentle bulking agent--while giving you much needed Omega 3's for your mental health etc. Best done once a day.

Meanwhile I am surprised about hearing that you can't get good health care with this in Europe. My understanding that it is very good most places. Where are you located? Maybe you should make a trip to England? Italy is also quite aware I hear as well as northern Europe.

Bea

[Takala]

Gluten in the cigarette papers.

Cutting out protein will be a disaster.

Your diet is also lacking fats unless you didn't mention something like olive oil or coconut oil.

Add in a gluten free B complex, a gluten-free calcium, magnesium supplement, multivitamin.

Always rinse before cooking, then soak dry beans in boiling water, then rinse again before cooking. And drain well. Rinse off canned beans well. Gets rid of the starches which are hard to digest. Try a different type of bean, or lentils.

If you are on any medication, check to see if it is gluten free.