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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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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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