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Malabsorption, Depersonalization, Migraines And Gluten Oh My!


MIgrainePosterChild

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MIgrainePosterChild Newbie

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

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

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

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

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

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

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.


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Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MIgrainePosterChild Newbie

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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    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
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