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Malabsorption, Depersonalization, Migraines And Gluten Oh My!

MIgrainePosterChild

Recommended Posts

MIgrainePosterChild Newbie
MIgrainePosterChild
Posted

hey all, I am a Gluten free newbie and a member of the community suggested I should introduce myself and explain my situation in a new thread, so here goes:

 

The things you need to know about me:

I am in my early 30s. I have had hemiplegic migraines inherited from my dad since I was six or 7. Aura with the migraines usually runs the full gamut from visual distrurbances, to numbness, to disorientation to severe headaches. I have been overweight since puberty hit, and have had GI issues since middle school or high school, but I have dropped 16 pounds since moving from CA to OR in August and trying to start a healthier lifestyle and I am still having GI issues. 

 

Somehow the "out of body" feelings and visual disturbances that I used to associate with my migraine aura, became prolonged to the point where I am now feeling them every day. Doctors tried to treat for migraines rather than GI issues and since they couldn't understand what my "out of body feelings were", I lost a few jobs in a row as the result of not being able to be reliable. In doing my own research to find out why I was feeling inexplicably sick every day, my symptoms matched those of malabsorption. My picture could have been next to the description. Gluten and possibly lactose intolerance seemed to be the underlying causes for malabsorption  and possible depersonalization (my out of body feelings) so I am now attempting to go 100% gluten free to see if it will fix my issues. I am finding it really difficult for two reasons: #1 I don't know how to cook. I'm used to eating out and grabbing snacks or frozen foods. #2 I am a cheese-a-holic (not so good for avoiding dairy) and #3 hubby and I can barely pay the rent, let alone by all the food we need (though the financial assistance question someone asked in here was very helpful). My doctor just ran a test today for B12 deficiency and I am waiting on the results. She has recommended that I should see a psychiatrist, a GI Specialist and a neurologist, none of which I can do because I have no money!

 

So....I am basically in a constant state of zombie mode, fatigued, stressed, gassy, constipated, sleep deprived, starving, and feeling completely lost when anyone mentions cooking. I just really need some help and advice!

 

 

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mamat78 Apprentice
mamat78
Posted

hey all, I am a Gluten free newbie and a member of the community suggested I should introduce myself and explain my situation in a new thread, so here goes:

 

The things you need to know about me:

I am in my early 30s. I have had hemiplegic migraines inherited from my dad since I was six or 7. Aura with the migraines usually runs the full gamut from visual distrurbances, to numbness, to disorientation to severe headaches. I have been overweight since puberty hit, and have had GI issues since middle school or high school, but I have dropped 16 pounds since moving from CA to OR in August and trying to start a healthier lifestyle and I am still having GI issues. 

 

Somehow the "out of body" feelings and visual disturbances that I used to associate with my migraine aura, became prolonged to the point where I am now feeling them every day. Doctors tried to treat for migraines rather than GI issues and since they couldn't understand what my "out of body feelings were", I lost a few jobs in a row as the result of not being able to be reliable. In doing my own research to find out why I was feeling inexplicably sick every day, my symptoms matched those of malabsorption. My picture could have been next to the description. Gluten and possibly lactose intolerance seemed to be the underlying causes for malabsorption  and possible depersonalization (my out of body feelings) so I am now attempting to go 100% gluten free to see if it will fix my issues. I am finding it really difficult for two reasons: #1 I don't know how to cook. I'm used to eating out and grabbing snacks or frozen foods. #2 I am a cheese-a-holic (not so good for avoiding dairy) and #3 hubby and I can barely pay the rent, let alone by all the food we need (though the financial assistance question someone asked in here was very helpful). My doctor just ran a test today for B12 deficiency and I am waiting on the results. She has recommended that I should see a psychiatrist, a GI Specialist and a neurologist, none of which I can do because I have no money!

 

So....I am basically in a constant state of zombie mode, fatigued, stressed, gassy, constipated, sleep deprived, starving, and feeling completely lost when anyone mentions cooking. I just really need some help and advice!

I am also new to this whole thing but what I can say about gluten free eating is before you have to go spend a whole bunch of money to try to "replace" gluten foods (like pasta, breads etc) try going whole foods like fruits,veggies, meats, nuts. There are lots of gluten free deli meats as well. At least those are good, quick grabbing foods that arent too expensive or out of reach. Also rice crackers and such that are gluten free and easy snacks can be helpful. At this point, I am just adjusting my cooking  but not attempting yet to replace faviourites with gluten free substitutes as that is where I need to do some special shopping and planning! 

Good luck! 

cavernio Enthusiast
cavernio
Posted

Good of you to try the gluten free diet!

Firstly, I will suggest that you strongly consider getting tested for celiac disease BEFORE starting you gluten-free diet. Being diagnosed as a celiac will mean doctors will actually consider you one instead of potential dismissals of your health problems and personal gluten-eating experience. It could also make adhering to the gluten free diet easier if you have certainty. And finally, if you go gluten free now, as bad as you're feeling, if you decide later that you want to be tested for celiac disease, gluten might make you feel much worse. (You need to be eating gluten for accurate celiac test results.)

I can't help you with the money, but I have a pretty low opinion about psychiatry-they try to treat symptoms, often ineffectually using drugs that can have weird side-effects, instead of looking for a cause and then solving it. 

The only doctor necessary to diagnose celiac disease would be the gastroenterologist.  

If you find being strictly gluten free isn't helping, your symptoms largely seem neurological, and I'd opt to see a neurologist.

 

All that said, I personally find that because I don't eat out anywhere because I don't trust anywhere, I save money on food. Me and my husband both, actually, since he's gluten-free for me :-) Once a week pizza, once a week restaurant dinner, and regular daily snacks or lunches at work all adds up. Cheese is also expensive, (especially the good ones), and I also find that I hardly any food goes bad in the fridge for me now. Lots of ways being gluten-free saves me money.

As far as cooking goes, I can't relate to not knowing how to cook as an adult, but the best foods to eat as a celiac are really quite simple. Fresh vegetables, steamed or raw, and plain meat and seafood are always going to be safe, healthy staples. My weekly meals always consist of a roast early in the week with potatoes, then usually a meal or with leftover roast (some sort of casserole or stew or curry with veggies), a seafood dish, (shrimp, fried fish), a stir fry (just a bunch of veggies chopped and sauteed shortly in batches on a hot oiled pan, meat or tofu optional, add a gluten-free sauce or find a recipe and make your own), with or without plain rice, a soup using bones from said roast (with or without drippings) or shrimp peelings, a legume dish-lentils or baked beans/chili, and of course things like pork chops, chickent breasts, steaks, liver. Always have lots of greens and extra (cucumber, tomato, peppers, etc) for fresh salads, they make a great side to every meal and require little work, and plenty of other vegetables to steam or boil or munch on raw. Fruits are a big part of our snacking now, and some can get pricey, but if you stick with what's on special (which is usually what's in season), it's a lot cheaper. Making plain food tasty often relies on spices. Some may not be safe, but many brands, if you contact them, will let you know. (I just recently found a curry powder I think I can trust), The fresh ones are always safe.

If you're really strapped for cash, find the old produce section of the grocery store if you have one, and buy those veggies the day you need them. Some fruits like oranges and grapefruit last a long time in a fridge. Other ones like berries don't.

Lunches for me are leftovers from the night before, but I make my husband a sandwich using a gluten-free bread (he likes el peto potato or flax) with mayo or avocado and safe sandwich meat (or leftover roast....you can't go wrong with a roast...beef, porf, chicken, lamb, they're all good!), a gluten-free oat free nut bar he can eat (I'm not eating any of them atm), and at least 2 pieces of fruit/veggies.

Eggs are incredibly good and fast for breakfast, lunch  or dinner, and potatoes and sweet potatoes are excellent starch sides.

Smoothies make fast breakfasts. Almond Breeze is a tasty, safe milk substitute, and those cans of coconut milk subsitute well for cream in recipes.

 

There are a lot more options, like gluten-free pastas from rice flour or quinoa, (nothing's easier than boiling noodles and throwing on a jar of safe tomato sauce), whole grains for cereals like amaranth, crackers, muffins, breads. However, the more grains and manufactured products you eat, the more chances you have of getting too much gluten. Most of these products have safe traces of gluten, but a few of us react to even small amounts, or other various grains. It will be easier if, when you first adjust from a wheat-filled diet, to avoid these as much as possible, than to find you're still not feeling well and then try to change recipes you finally perfected, using products that you might react to.

 

As you begin to cook more, you'll find more foods that you'll always want around. Our household ones are potatoes, rice, garlic, onions, milk substitute, coconut milk, carrots, banana, apples, oranges, olive oil, sort sort of animal fat (I'm avoiding grain/sunflower oils,) eggs, bread, mayo, tomatoes, some sort of leafy green, frozen peas, lentils, beans, and enough spices that they're taking over the counter-top.

MIgrainePosterChild Newbie
MIgrainePosterChild
Posted
  • Author

Good of you to try the gluten free diet!

Firstly, I will suggest that you strongly consider getting tested for celiac disease BEFORE starting you gluten-free diet. Being diagnosed as a celiac will mean doctors will actually consider you one instead of potential dismissals of your health problems and personal gluten-eating experience. It could also make adhering to the gluten free diet easier if you have certainty. And finally, if you go gluten free now, as bad as you're feeling, if you decide later that you want to be tested for celiac disease, gluten might make you feel much worse. (You need to be eating gluten for accurate celiac test results.)

I can't help you with the money, but I have a pretty low opinion about psychiatry-they try to treat symptoms, often ineffectually using drugs that can have weird side-effects, instead of looking for a cause and then solving it. 

The only doctor necessary to diagnose celiac disease would be the gastroenterologist.  

If you find being strictly gluten free isn't helping, your symptoms largely seem neurological, and I'd opt to see a neurologist.

 

All that said, I personally find that because I don't eat out anywhere because I don't trust anywhere, I save money on food. Me and my husband both, actually, since he's gluten-free for me :-) Once a week pizza, once a week restaurant dinner, and regular daily snacks or lunches at work all adds up. Cheese is also expensive, (especially the good ones), and I also find that I hardly any food goes bad in the fridge for me now. Lots of ways being gluten-free saves me money.

As far as cooking goes, I can't relate to not knowing how to cook as an adult, but the best foods to eat as a celiac are really quite simple. Fresh vegetables, steamed or raw, and plain meat and seafood are always going to be safe, healthy staples. My weekly meals always consist of a roast early in the week with potatoes, then usually a meal or with leftover roast (some sort of casserole or stew or curry with veggies), a seafood dish, (shrimp, fried fish), a stir fry (just a bunch of veggies chopped and sauteed shortly in batches on a hot oiled pan, meat or tofu optional, add a gluten-free sauce or find a recipe and make your own), with or without plain rice, a soup using bones from said roast (with or without drippings) or shrimp peelings, a legume dish-lentils or baked beans/chili, and of course things like pork chops, chickent breasts, steaks, liver. Always have lots of greens and extra (cucumber, tomato, peppers, etc) for fresh salads, they make a great side to every meal and require little work, and plenty of other vegetables to steam or boil or munch on raw. Fruits are a big part of our snacking now, and some can get pricey, but if you stick with what's on special (which is usually what's in season), it's a lot cheaper. Making plain food tasty often relies on spices. Some may not be safe, but many brands, if you contact them, will let you know. (I just recently found a curry powder I think I can trust), The fresh ones are always safe.

If you're really strapped for cash, find the old produce section of the grocery store if you have one, and buy those veggies the day you need them. Some fruits like oranges and grapefruit last a long time in a fridge. Other ones like berries don't.

Lunches for me are leftovers from the night before, but I make my husband a sandwich using a gluten-free bread (he likes el peto potato or flax) with mayo or avocado and safe sandwich meat (or leftover roast....you can't go wrong with a roast...beef, porf, chicken, lamb, they're all good!), a gluten-free oat free nut bar he can eat (I'm not eating any of them atm), and at least 2 pieces of fruit/veggies.

Eggs are incredibly good and fast for breakfast, lunch  or dinner, and potatoes and sweet potatoes are excellent starch sides.

Smoothies make fast breakfasts. Almond Breeze is a tasty, safe milk substitute, and those cans of coconut milk subsitute well for cream in recipes.

 

There are a lot more options, like gluten-free pastas from rice flour or quinoa, (nothing's easier than boiling noodles and throwing on a jar of safe tomato sauce), whole grains for cereals like amaranth, crackers, muffins, breads. However, the more grains and manufactured products you eat, the more chances you have of getting too much gluten. Most of these products have safe traces of gluten, but a few of us react to even small amounts, or other various grains. It will be easier if, when you first adjust from a wheat-filled diet, to avoid these as much as possible, than to find you're still not feeling well and then try to change recipes you finally perfected, using products that you might react to.

 

As you begin to cook more, you'll find more foods that you'll always want around. Our household ones are potatoes, rice, garlic, onions, milk substitute, coconut milk, carrots, banana, apples, oranges, olive oil, sort sort of animal fat (I'm avoiding grain/sunflower oils,) eggs, bread, mayo, tomatoes, some sort of leafy green, frozen peas, lentils, beans, and enough spices that they're taking over the counter-top.

Thank you for the detailed advice. =)

GFinDC Veteran
GFinDC
Posted

Hi MPC,

 

Try simplifying your diet for a while.  Processed foods are full of various chemicals that your body needs to detoxify and remove.  While you are healing it is better not to put that extra strain on your system.  Instead eat whole foods like veggies, meats, fruits, nuts.  gluten-free bread is usually quite expensive but  a cheap sub is Mission corn tortillas.  You can warm them up a little so they fold easier, and use a couple to make a wrap.

 

Gluten can cause brain damage via gluten ataxia.  That may be a cause of your migraines, don't know tho.  But it is something to research anyway.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

 

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes
https://www.celiac.com/forums/topic/97786-thread-for-gluten-free-dairy-soy-corn-and-nightshade-free-recipes/

Super Easy Meal Ideas Anyone?
https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/

eyebbb Newbie
eyebbb
Posted

hey all, I am a Gluten free newbie and a member of the community suggested I should introduce myself and explain my situation in a new thread, so here goes:

 

The things you need to know about me:

I am in my early 30s. I have had hemiplegic migraines inherited from my dad since I was six or 7. Aura with the migraines usually runs the full gamut from visual distrurbances, to numbness, to disorientation to severe headaches. I have been overweight since puberty hit, and have had GI issues since middle school or high school, but I have dropped 16 pounds since moving from CA to OR in August and trying to start a healthier lifestyle and I am still having GI issues. 

 

Somehow the "out of body" feelings and visual disturbances that I used to associate with my migraine aura, became prolonged to the point where I am now feeling them every day. Doctors tried to treat for migraines rather than GI issues and since they couldn't understand what my "out of body feelings were", I lost a few jobs in a row as the result of not being able to be reliable. In doing my own research to find out why I was feeling inexplicably sick every day, my symptoms matched those of malabsorption. My picture could have been next to the description. Gluten and possibly lactose intolerance seemed to be the underlying causes for malabsorption  and possible depersonalization (my out of body feelings) so I am now attempting to go 100% gluten free to see if it will fix my issues. I am finding it really difficult for two reasons: #1 I don't know how to cook. I'm used to eating out and grabbing snacks or frozen foods. #2 I am a cheese-a-holic (not so good for avoiding dairy) and #3 hubby and I can barely pay the rent, let alone by all the food we need (though the financial assistance question someone asked in here was very helpful). My doctor just ran a test today for B12 deficiency and I am waiting on the results. She has recommended that I should see a psychiatrist, a GI Specialist and a neurologist, none of which I can do because I have no money!

 

So....I am basically in a constant state of zombie mode, fatigued, stressed, gassy, constipated, sleep deprived, starving, and feeling completely lost when anyone mentions cooking. I just really need some help and advice!

Hi MigrainePosterChild.  I am brand new to this site.  Yours is the first post I've read, and I totally relate to your plight because it's almost identical to mine.  Here's the brief version of my story and what has helped me.  After being increasingly ill for about 15 years, to the point of severe gastritis, down to 92 pounds, and only able to eat a few veggies and rice for 2 1/2 years til the gastritis healed... blah, blah...  I finally recently found a doctor who got me diagnosed.  I have celiac, but the test/biopsies show negative or low likelihood of having it because my IaG is low - meaning I have a weak immune system.  At any rate, as a result of being sick for so long, my cholesterol is through the roof, my liver enzymes are elevated, my blood calcium is high, and some other stuff.  But I'm working on healing.  Here is what I've done and has worked for me.

 

Here is the celiac diet you need to follow at least for now.  Eat only meat, dairy, veggies, rice, and fruits.  Avoid grains other than rice for now.  I also can't eat oatmeal or oats of any kind.  If you have trouble digesting meat, avoid it for now too.  Eat as much as you want though.  Also, if you're hungry a lot and not able to get enough calories through eating, drink Ensure for muscles.  You can buy it in the grocery store.  You need a lot of protein right now unless you're having kidney problems, then you need to ask your doctor about diet.

 

Here is the migraine treatment you need to follow for now.  Avoid all alcohol, anything with vinegar or that has been fermented, like yogurt.  Don't eat cheese of any kind.  Don't use meat tenderizer or marinate meat.  You want to avoid any food that has been "aged."  Don't eat any produce with red or pink skin.  It has an enzyme that sets off your migraines.  Take 400 mg of B2 daily, and 400 mg of magnesium daily.  It will help with the headaches and auras.  Eat only canned or frozen produce.  The "fresh" produce in stores is not fresh.  It has been on trucks and shelves for a week or so and has started breaking down (meaning it is aging), so don't eat it.  If you eat lunch meats, buy only the ones that have no nitrites or nitrates added to them.  It will say so on the package.

 

Buy gluten free Rice Krispies, Rice Chex or Corn Chex for quick cereals.   For soup, I buy packages of Thai Kitchen soups.  They cook up in just a few minutes and taste good.  I add meat or veggies to them.  Keep some canned or cooked meat on hand for quick meals.  I use canned veggies, so it just takes a minute or two to heat them up.  Be sure the ingredient labels say just the veggies and water to avoid possible gluten contamination.  I also use Betty Crocker gluten free instant potatoes to make mashed potatoes.  I use gluten free Bisquick to make biscuits, pancakes, and also to make milk gravy, and recipes are on the box or you can find them on internet.

 

I've developed an allergy to eggs, so when I cook, I use unflavored gelatin in place of eggs.  Two packets replace one egg.

 

Cooking:  you don't have to know much.  For one person only, buy 3 packages of hamburger, a beef roast, a pork roast, a turkey breast, 2 packages of chicken breasts and a ham.  That will be enough meat to last you a month or two, depending on how much you eat.  Buy some Pam non-stick spray.  Buy a small roaster pan to cook with.  Spray the pan with Pam, just a light coating.  Turn oven to 300 degrees.  Stick meat in the roaster, put the lid on it, put it in the oven.  Let it cook for an hour or two, depending on the size.  Check it to see how it's cooking.  Then turn oven to 350 or 400 degrees to finish it off.  When checking, cut into the meat in the middle to see how pink it is.  I like meat well done, so I cook it longer on low heat to keep it moist and avoid it burning.  If you like lean meat (more pink), you won't need to cook it as long.  You'll just have to do it to learn it.  But really, once you do it a couple of times, it's pretty easy.  I use garlic, salt or Picante Sauce to season meat.

 

We also eat a lot of spaghetti.  Buy the gluten free pasta and sauce.  I use hamburger to roll meat balls and cook them in the sauce.

 

I used to shop a lot at Vitamin Cottage because that was the only place where I live that had gluten free foods, but now I'm finding things at a small local grocer we have here and also a few things at some of the large chain grocers, so it is getting easier to find products.  I also get a lot of stuff on Amazon.  Just search for "gluten free"

 

So, cook some meat, or open a can of meat, heat up a can or two of veggies and you have dinner.

 

You will learn to read labels carefully when you're grocery shopping, and before long, you'll spot ingredients on labels that you want to avoid and won't waste much time reading the labels.

 

Hope this helps!

MIgrainePosterChild Newbie
MIgrainePosterChild
Posted
  • Author

Hi MigrainePosterChild.  I am brand new to this site.  Yours is the first post I've read, and I totally relate to your plight because it's almost identical to mine.  Here's the brief version of my story and what has helped me.  After being increasingly ill for about 15 years, to the point of severe gastritis, down to 92 pounds, and only able to eat a few veggies and rice for 2 1/2 years til the gastritis healed... blah, blah...  I finally recently found a doctor who got me diagnosed.  I have celiac, but the test/biopsies show negative or low likelihood of having it because my IaG is low - meaning I have a weak immune system.  At any rate, as a result of being sick for so long, my cholesterol is through the roof, my liver enzymes are elevated, my blood calcium is high, and some other stuff.  But I'm working on healing.  Here is what I've done and has worked for me.

 

Here is the celiac diet you need to follow at least for now.  Eat only meat, dairy, veggies, rice, and fruits.  Avoid grains other than rice for now.  I also can't eat oatmeal or oats of any kind.  If you have trouble digesting meat, avoid it for now too.  Eat as much as you want though.  Also, if you're hungry a lot and not able to get enough calories through eating, drink Ensure for muscles.  You can buy it in the grocery store.  You need a lot of protein right now unless you're having kidney problems, then you need to ask your doctor about diet.

 

Here is the migraine treatment you need to follow for now.  Avoid all alcohol, anything with vinegar or that has been fermented, like yogurt.  Don't eat cheese of any kind.  Don't use meat tenderizer or marinate meat.  You want to avoid any food that has been "aged."  Don't eat any produce with red or pink skin.  It has an enzyme that sets off your migraines.  Take 400 mg of B2 daily, and 400 mg of magnesium daily.  It will help with the headaches and auras.  Eat only canned or frozen produce.  The "fresh" produce in stores is not fresh.  It has been on trucks and shelves for a week or so and has started breaking down (meaning it is aging), so don't eat it.  If you eat lunch meats, buy only the ones that have no nitrites or nitrates added to them.  It will say so on the package.

 

Buy gluten free Rice Krispies, Rice Chex or Corn Chex for quick cereals.   For soup, I buy packages of Thai Kitchen soups.  They cook up in just a few minutes and taste good.  I add meat or veggies to them.  Keep some canned or cooked meat on hand for quick meals.  I use canned veggies, so it just takes a minute or two to heat them up.  Be sure the ingredient labels say just the veggies and water to avoid possible gluten contamination.  I also use Betty Crocker gluten free instant potatoes to make mashed potatoes.  I use gluten free Bisquick to make biscuits, pancakes, and also to make milk gravy, and recipes are on the box or you can find them on internet.

 

I've developed an allergy to eggs, so when I cook, I use unflavored gelatin in place of eggs.  Two packets replace one egg.

 

Cooking:  you don't have to know much.  For one person only, buy 3 packages of hamburger, a beef roast, a pork roast, a turkey breast, 2 packages of chicken breasts and a ham.  That will be enough meat to last you a month or two, depending on how much you eat.  Buy some Pam non-stick spray.  Buy a small roaster pan to cook with.  Spray the pan with Pam, just a light coating.  Turn oven to 300 degrees.  Stick meat in the roaster, put the lid on it, put it in the oven.  Let it cook for an hour or two, depending on the size.  Check it to see how it's cooking.  Then turn oven to 350 or 400 degrees to finish it off.  When checking, cut into the meat in the middle to see how pink it is.  I like meat well done, so I cook it longer on low heat to keep it moist and avoid it burning.  If you like lean meat (more pink), you won't need to cook it as long.  You'll just have to do it to learn it.  But really, once you do it a couple of times, it's pretty easy.  I use garlic, salt or Picante Sauce to season meat.

 

We also eat a lot of spaghetti.  Buy the gluten free pasta and sauce.  I use hamburger to roll meat balls and cook them in the sauce.

 

I used to shop a lot at Vitamin Cottage because that was the only place where I live that had gluten free foods, but now I'm finding things at a small local grocer we have here and also a few things at some of the large chain grocers, so it is getting easier to find products.  I also get a lot of stuff on Amazon.  Just search for "gluten free"

 

So, cook some meat, or open a can of meat, heat up a can or two of veggies and you have dinner.

 

You will learn to read labels carefully when you're grocery shopping, and before long, you'll spot ingredients on labels that you want to avoid and won't waste much time reading the labels.

 

Hope this helps!

Thank you, you have given me a lot to think about.

Celiac.com Sponsor (A8):
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Celiac.com Sponsor (A8-M):


MIgrainePosterChild Newbie
MIgrainePosterChild
Posted
  • Author

Hi MPC,

 

Try simplifying your diet for a while.  Processed foods are full of various chemicals that your body needs to detoxify and remove.  While you are healing it is better not to put that extra strain on your system.  Instead eat whole foods like veggies, meats, fruits, nuts.  gluten-free bread is usually quite expensive but  a cheap sub is Mission corn tortillas.  You can warm them up a little so they fold easier, and use a couple to make a wrap.

 

Gluten can cause brain damage via gluten ataxia.  That may be a cause of your migraines, don't know tho.  But it is something to research anyway.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?

https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

 

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

https://www.celiac.com/forums/topic/97786-thread-for-gluten-free-dairy-soy-corn-and-nightshade-free-recipes/

Super Easy Meal Ideas Anyone?

https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/

Thank you! I have visited some of these threads already, but the others will be helpful too.

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    • Pablohoyasaxa
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Pablohoyasaxa · Posted

      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By ElisaL · Posted

      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Ocd making gluten fears unmanageable. Need advice

      By Wends · Posted

      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
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