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Can Someone Please Talk Me Off The Ledge


shacon-bacon

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shacon-bacon Apprentice

People I know this is stupid. But I am HATING this gluten-free stuff. It seems like no matter how hard I try, apparently I accidentally ingest gluten. And then for the next 4 days, no matter what I eat, everytime I eat, I get the big D. At least the pain isn't as bad as it was before but still, 4 days of the snakes is hardly fun.

Food is literally my faverite thing in the world, and now here I am hating it. All of it. I can't find anything I enjoy more than a big mac. Fruit and veggies are fine, but they're hardly my favorite. I swear everytime I turn on the tv, or open a magazine all I see is a big delicious juicy hamburger screaming for me to come attack it. I almost cried at the gas station staring at the stupid, beautifully iced krispy kreme donuts. I feel like I want to scream at every person I see just casually eating spaghetti, BREAD, cake, chips and all the other good stuff. I swear I hate people who can eat what they want. Apparently my friends and family (besides my mom) forget I can't eat things and they find it necessary to tell me about the best burger they ever had or some other wonderful dish or desert they tried. They have food day at work just about every other day and all they have is cakes, cookies, WHITE CASTLES and all my other old best friends. I'm disgusted. I seriously feel like if I just stop eating maybe I'll be fine. Then there's my mom who is CONSTANTLY asking me "can you eat this? what about this? is this ok? can you eat this?" Dear lord I just want everyone to disappear and leave me alone with a delivery pizza that I didn't have to spend 30 minutes cooking and cleaning up after.

I hardly have the time, energy, money or patience for this. And I cry when I think about how this is the rest of my life. And yes I know, it could be worse. But please this is just me whining.


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Lisa Mentor

Good Grief, I have had my share of tears, staring at a menu blubbering in front of my helpless husband and a totally bewildered waiter. Grocery shopping and getting down right mad as hell. The first loaves of bread I bought ended up as great substitutions to arm weights.

This too shall pass. Sometimes I had to remind myself how sick I actually was and that served as a reality check for myself.

Try to revisit your diet, shampoos, vitamines, meds or any other things that can get into your mouth. Remember that shared toasters, cutting boards, colanders and some utensils can be a great place for hidden gluten. Keep your diet simple until you have healed and then you can expand your diet.

Explore new things gradually and you will realize that there is a world out there where there is no need to feel deprived. In time you will realize that life is good and that there are other isssues to devote you time to, other than food.

Have faith and chin up. ;)

lizard00 Enthusiast

I've had those days too. Somewhere around 2 or 3 months after I went gluten-free, I almost broke down because I couldn't find gluten-free pizza (other than Amy's or homemade). My dear husband was trying desperately to find a place, but to no avail. I never thought I would get emotional over pizza...

Then in April, I went to a conference for work. The hotel catered lunch: sandwiches and wraps. We still had to buy it, and thank goodness I work for my mom... I was choking back tears at the prospect of her paying $10 for a sandwich that "maybe we could just take the bread off of." She quickly escorted me OUT of the hotel and we went to a nearby restaurant. But we missed eating lunch with our employees. The thing that really upset me was feeling so out of place and making people feel as though they must accomodate me. And that's the way it was. That day, I just wasn't so prepared for it.

I love food too. LOVE IT! Just wait, you'll see a whole new world of food opened up to you. There are so many things we get reliant on, and when we can't eat it anymore, we're forced to try new things. In a way, I'm thankful to the gluten-free diet for many things. First, I feel like a normal person again, and second, I have discovered so many new things to eat that I would probably never have. I eat much healtheir that most people I know, and eat much more variety. So be patient, and explore new foods.

missy'smom Collaborator

Here is what I can offer.

I have a copycat recipe for that sauce that they use on Big Macs, if you'd like it let me know and I'll post it.

Can you or have you given your mom a simple pre-printed handout on the diet. CSA will send someone a packet of info for free. I've done it. There may be other useful pages that you could print from their site or other sites. If you think she could handle it, you could print the list of forbidden ingredients from this site.

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Open Original Shared Link

Is there a support group in your area? I like the combination of the wonderful support here, in addition to what my local support group offers. They both offer different things, that together, more completely offer me what I need to navigate in this world and create an new gluten-free one.

Hang in there. The diet is hard but it's worth it and it does get better.

NorthernElf Enthusiast

I love food too - & I totally understand where you are coming from. I've been dealing with this for over five years and have gotten a pretty good handle on it - most of the time. I'd say that 99% of the time I'm ok and I can "suck it up". There is that one percent when I get po'd. That one percent is usually when I am at a restaurant, a social function, or even in a grocery store trying to pick things I can eat - ha, usually when I'm reading labels on a newer product to see if it's "legal" and it's not !

Having said that, my DH & I are not really big social folks. My socializing usually comes at work and around my kids & DH. At work, meetings do seem to include so many gluten snack but I'm a coffee drinker so I console myself with coffee ! People do sometimes regal me with descriptions of some food they ate that was so good (and full of gluten) and I just usually smile & nod...or if it's someone I know a bit better I just say how I can't eat it but maybe my DH or kids would like it.

My biggest fighting tactic is to travel with food & make a lot of my own. I have a gluten free corner in the kitchen (even printed off a little "Mom's Gluten Free Corner" sign to hang there to make sure everyone remembers!). It is easy to get into food ruts but hit the internet for recipes and ideas - it really helps ! Make batches of stuff & freeze it in smaller bags. Yeah, it takes some work but it is worth it - I hate being sick !

What's in my freezer right now - Bob's Redmill sorghum scones (added almonds & cranberries), Kinnikinnick sunflower & flaxseed bread, chocolate chip cookies (from receipezaar.com - search gluten free - I make a 4x batch & freeze), carrot muffins (not sure where I got that recipe), Kinnikinnick pizza shells & english muffins, and sticks of Grimm's gluten free honey garlic pepperoni.

In my pantry - Thai Kitchen soup packs, quinoa, brown rice, rice crackers in different flavors, small tins of tuna, Ricework chips, Glutino brownie mix (yum!), gluten-free cookies (Kaytoos or something). I also have my own squeezable honey and pure maple syrup, my own jar of peanut butter. In the fridge are my various flours in containers, my own jam, mayo, and margarine container. I also have a drawer of baking pans and sheets.

I fought separating things for awhile but it IS necessary. I also have my own colander and only use common stainless steel bowls, not my family's plastic ones, for mixing.

You know, it does suck - and it just is not fair - but for me, part of coping, has been to find ways around things and do what is necessary because as much as it sucks to have to eat differently, miss out on things, and do all this extra works - I SO do not like being sick !

Fiddle-Faddle Community Regular
Then in April, I went to a conference for work. The hotel catered lunch: sandwiches and wraps. We still had to buy it, and thank goodness I work for my mom... I was choking back tears at the prospect of her paying $10 for a sandwich that "maybe we could just take the bread off of." She quickly escorted me OUT of the hotel and we went to a nearby restaurant. But we missed eating lunch with our employees. The thing that really upset me was feeling so out of place and making people feel as though they must accomodate me. And that's the way it was. That day, I just wasn't so prepared for it.

I am just getting to the point where I insist that my employer accommodate me for this sort of thing, at least, when it is work-related. They accommodate vegetarians, which is a CHOICE. Even if it's just a salad plus separately packed sandwich innards, they can either attempt to do that for me, or they can arrange to not charge me for their food and let me know in advance so that I can bring my own food.

If it's not officially work-related (in other words, if I can choose not to be there), I send a note saying how sorry I am that I can't attend, but that I cannot eat anything containing gluten (and an explanation of gluten), and how frustrating it is for me to come to these events when I'm unable to eat anything, and yes, even a little can make me very sick.

Obviously, they wouldn't want me to get sick, because that would mean I'd miss work!

curlyfries Contributor

Definitely go back and recheck your foods, toiletries, and food handling and utensils (CC). Also, start a food journal. Perhaps it is something else that is making you sick. I think that if you can get yourself feeling better, you won't be so frustrated. It is quite a liberating experience when you realize that you've gone 2, 3 , 4........weeks without pain. All those silly food crutches don't seem to matter so much when you are feeling healthy.

I promise :D! I LOVED bread, cakes, cookies, pasta, CHEESE, PIZZA, KFC......and now I don't do any of it....except for the occassional gluten-free spaghetti. No replacements for anything else. I may add back dairy later on...and gluten-free cookies....but for now, I'm playing it safe....loslng weight...and feeling great.


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shacon-bacon Apprentice

You guys are absolutely genius. Thank you all for your help. I decided to venture out to Whole Foods today. I am lucky enough to live pretty closely. It was an interesting experience. I spent 70$ and left w/ 2 bags. I then went to a regular grocery store for milk and such and spent 70$ for about 10 bags of groceries...I guess Whole Foods will be a once in a while type of thing.

You guys made me realize too there probably is something I've over looked...I wonder, could it be my diet 7up? Could it be my mary kay night cream that I use as lip gloss? Could it be my ice tea? My cigarettes? My envelopes??? Could I also be lactose intolerant??

Today so far I ate a plum and gluten free mac and cheese (Amy's) and w/in 5 minutes I was in the bathroom.

Thank you guys for the advice. A food journal is a good idea and I'll start that too. I'll also check and recheck everything I thought was safe.

Oh yeah and I was super exicted about the losing weight thing at first. But now I've lost 15 pounds and I can barely recognize myself in the mirror anymore! It just doesn't seem right. I haven't been this size since, probably 10 years. I want my meat back!

Lisa Mentor

Your immediate reaction does not mean an immediate reaction to what you just ate. A gluten reaction can begin within 15 minutes to over 48 hours. Everyone is different. A food journal is an excellent idea.

Also, it takes time to heal. If you have been gluten free in your meal, but wearing lipstick or gloss with wheat germ oil, you have not been gluten free and it has hindered the healing process. Reaction to gluten free foods can mimic gluten when the gut is not healed. You can react to everything that you eat until your intestines have healed a bit.

When I have problem, I go back to the basics. Simple meals and researched product that I am 100% certain.

If you have any question regarding products, please feel free to ask. Here is a listing of companies who will clearly list all forms of gluten to include barley, malt and rye.

Open Original Shared Link

Copy this and take it to the store with you. Go easy at Whole Foods (Whole Paycheck) and stick to breads and pastas ( Whole Foods Prairie Bread is wonderful) .

See, it does get easier.

ShayFL Enthusiast

You got 2 bags for 70.00 at WF?? I would do a happy dance if that ever happened to me. I never get out of there for under 300.00 Never!! And it is usually like 4 bags. And 70.00 at a regular grocery store will only get me about 2 bags of food....it aint right.....

confusedks Enthusiast

I just wanted to say...it really gets easier over time! I PROMISE!!!!! :)

I used to be really bitter about all the stuff I couldn't have, but it's an investment I'm making in my body. All the people who are unaware of what they are eating, aren't doing their bodies any good. So, for today, I make good decisions about what I eat. :)

RiceGuy Collaborator
I wonder, could it be my diet 7up? Could it be my mary kay night cream that I use as lip gloss? Could it be my ice tea? My cigarettes? My envelopes??? Could I also be lactose intolerant??

Tobacco is a nightshade, to which I react. I guess you already know you cannot come into contact with the glue on envelopes or stamps, stickers, etc. And yes, lactose, or dairy in general might be a problem right now.

Today so far I ate a plum and gluten free mac and cheese (Amy's) and w/in 5 minutes I was in the bathroom.

I'm thinking the dairy is the most likely culprit.

Oh yeah and I was super exicted about the losing weight thing at first. But now I've lost 15 pounds and I can barely recognize myself in the mirror anymore! It just doesn't seem right. I haven't been this size since, probably 10 years. I want my meat back!

Losing fat and losing muscle mass are two very different things. If you are losing fat, be happy unless you become too thin, which is probably when it gets to less than 10% of your weight (if I understand correctly). You don't want to lose structural fat, just the excess. And most certainly don't want to lose muscle mass.

So, what I'd try in order to narrow down the culprit, is to have some Tinkyada brand gluten-free pasta, with maybe a non-tomato sauce (to rule out nightshades), and no cheese. If there isn't a reaction, then try the same thing with tomato sauce. There are all sorts of sauces you could make, or just melt some non-dairy gluten-free margarine on it. To be sure that this test is free of the most common allergens, use a margarine without soy or corn. That might not be so simple, but coconut oil is so yummy, I'd just do that if you like coconut. It melts like butter too.

You could also just have some homemade tomato soup to test for any reaction to nightshades. Again, leave out any other common allergens.

And above all, keep a positive attitude. This comes from someone who literally ate an entire pound of pasta and half a loaf of bread EVERY DAY! Gluten was the last thing in the world I thought I could give up. Now I don't care, and I don't miss it one tiny bit. You probably already know this, but gluten does have a strong addictive effect, especially when you're intolerant to it. Cheese is the same way. I've also had to give up dairy too, along with nightshades, sugar, meats, and eggs. Yet today my diet is worlds more diverse than it ever was before. Looking back, I see that I had been ignoring just about everything except the stuff that was making me ill. Ironic, isn't it?!

missy'smom Collaborator

Just some things to think about.

Did you drain that mac in a strainer that has previously been used for gluten? Did you stir that mac and cheese with a wooden spoon that has previously been used for gluten? Did you add butter that could be contaminated with bread crumbs from others that have used the same tub or stick? If you answered yes to any of these questions you have cross-contamination.

Someone requested the big mac sauce recipe so I'm posting it in the recipe forum.

shacon-bacon Apprentice

Thank you missys mom. It was a frozen premade mac n cheese, so none of those things applied. But the more I've been thinking about it, I do think it could be my mary kay cream that I've been using on my lips. I was doing really good for a while (wasn't using it) and just the past 2 or 3 weeks (using it) I've been experiencing symptoms...I emailed them so hears hoping that's the cause of it...I guess I do really need to be more careful about my cosmetics and toiletries, which up until now I haven't been.

You guys rock. Thank you.

By the way, what kind of bread would you eat that big mac with???

missy'smom Collaborator
Thank you missys mom. It was a frozen premade mac n cheese, so none of those things applied. But the more I've been thinking about it, I do think it could be my mary kay cream that I've been using on my lips. I was doing really good for a while (wasn't using it) and just the past 2 or 3 weeks (using it) I've been experiencing symptoms...I emailed them so hears hoping that's the cause of it...I guess I do really need to be more careful about my cosmetics and toiletries, which up until now I haven't been.

You guys rock. Thank you.

By the way, what kind of bread would you eat that big mac with???

Whole Foods makes gluten-free hamburger buns. In the store nearsest me, they are kept in the frozen case. They aren't dairy free.

pele Rookie

I think you might enjoy Shauna James Ahern's blog and book Gluten-free Girl. She is a major foodie and writes wonderfully about her pre- and post-celiac discoveries of food beyond what she grew up with. You can find her blog at

glutenfreegirl.blogspot.com

Things do get better. There are lots of great, simple, non-grain foods out there waiting for you to enjoy. And dealing with people and social situations will become easier.

sickchick Community Regular

OH MY GOD I can't tell you how many times I have BURST into TEARS! :ph34r:

The longer you go (and start to FEEL better) it will SO be worth it, Love Love.

Fiddle-Faddle Community Regular

Do you live near any medium-to-large cities? There are more and more gluten-free options popping up.

Pizzafusion is a gourmet, organic pizza chain with GLUTEN-FREE pizza that tastes like real pizza. They deliver.

Many cities have gluten-free BAKERIES, with bread, cakes, cookies, muffins, all gluten-free, all tasting like the real thing.

Best of all, there are recipes everywhere (here on this board, on www.celiac.com, on www.gfutah.org, on www.foodphilosopher.com, etc.) that are straightforward, easy to follow, and they all taste WAY WAY WAY better than the premade gluten-free stuff you find at the market.

There's a terrific pre-mixed gluten-free flour blend at www.betterbatter.org--that's the one I use. Or you can mix your own in bulk, with brown rice flour, potato starch, tapioca starch, cornstarch, and xanthan gum.

You don't even need to make breads and pizza crusts from scratch--you can buy corn tortillas in nearly every large supermarket. Heat them in a frying pan for a minute or two on each side, and they soften up enough to use as a wrap for sandwiches.

For great pizza in less time than it takes to get one delivered, heat a corn tortilla on high for a couple of minutes on each side. Then, while it's still in the pan, spread tomato sauce right out of the can (I usually stir in some bottled chopped garlic, some basil, and a little sugar), top with shredded mozzarella, and sprinkle with dried Italian seasoning. Cover with a sheet of aluminum foil, wait a minute or 2 for the cheese to melt, and--

PIZZA! (Devour without sharing.)

The tortilla will have become nice and crispy, and makes for a very easy crust.

You can do this on the grill, too.

And, best of all, it's WAY cheaper than delivery!!!!!

JNBunnie1 Community Regular
Whole Foods makes gluten-free hamburger buns. In the store nearsest me, they are kept in the frozen case. They aren't dairy free.

I actually hate those rolls. They're way too heavy. I got the Against the Grain rosemary flavored rolls, oh my god... those make AWESOME burger rolls.

I second the Gluten-Free girl recommendation, she's an awesome writer and makes you happy about food.

LuvMoosic4life Collaborator
You got 2 bags for 70.00 at WF?? I would do a happy dance if that ever happened to me. I never get out of there for under 300.00 Never!! And it is usually like 4 bags. And 70.00 at a regular grocery store will only get me about 2 bags of food....it aint right.....

hmm. I went to wegmans, spent $56 dollars and left with 3 full bags of stuff....I'm set for 2 weeks. but then I'm a poor college student shopping for myself.

shacon-bacon Apprentice

Thank you guys again! I will definately try these ideas. Thank you!

I emailed mary kay to see if their cream was gluten free. They emailed me back and told me to call. I called. They told me they can't say for sure if it contains gluten or not...

I had a beef jerky stick. I shouldn't have. On the label it said "flavorings, seasonings". I called. They told me they can't say for sure if it contains gluten or not...

Is that normal? How do you get to the bottom of something like that? Or, do you just avoid it?

luvs2eat Collaborator

I don't chance it. If I don't know what the ingredients are, I don't eat it. It does become a matter of habit... but I've been doing it for years... even those who love me have become master label readers.

I still get teary when I think of real French bread and Pizza Hut stuffed crust pizza and all the things I've never tasted (Blooming Onion or a panini).

Fortunately, I like to cook. Pamela's bread mix makes awesome bread AND great burger rolls. Ya gotta learn to cook and then there's nuthin' you can't recreate.

It's a process. Let yourself be miserable for a while... then pick yourself up... dust yourself off... and you'll be okay.

pele Rookie
hmm. I went to wegmans, spent $56 dollars and left with 3 full bags of stuff....I'm set for 2 weeks. but then I'm a poor college student shopping for myself.

Wegman's. You lucky thing, you. I wish Wegman's would expand out here to the west coast.

pele (formerly from Greece, NY)

FoxersArtist Contributor

Great big hugs to you. I know we have all had these moments and it's so very, very hard. As a general rule I do ok. I have been baking so many gluten free goodies that taste like regular food or better than what I used to eat so it has been hard to miss my old life when I'm at home. I can tell you though that I get really exhausted with cooking and curse the never ending pile of dishes. Won't they ever go away? I had a little melt down when I went to walmart the other day. They have a subway inside and they were baking bread. I smelled that for the rest of the day and cried because I would never have a subway again and they were one of my favorites. Hubby came home and told me that he went off his gluten free diet and ate a doughnut. I wanted to punch him.

-Anna

People I know this is stupid. But I am HATING this gluten-free stuff. It seems like no matter how hard I try, apparently I accidentally ingest gluten. And then for the next 4 days, no matter what I eat, everytime I eat, I get the big D. At least the pain isn't as bad as it was before but still, 4 days of the snakes is hardly fun.

Food is literally my faverite thing in the world, and now here I am hating it. All of it. I can't find anything I enjoy more than a big mac. Fruit and veggies are fine, but they're hardly my favorite. I swear everytime I turn on the tv, or open a magazine all I see is a big delicious juicy hamburger screaming for me to come attack it. I almost cried at the gas station staring at the stupid, beautifully iced krispy kreme donuts. I feel like I want to scream at every person I see just casually eating spaghetti, BREAD, cake, chips and all the other good stuff. I swear I hate people who can eat what they want. Apparently my friends and family (besides my mom) forget I can't eat things and they find it necessary to tell me about the best burger they ever had or some other wonderful dish or desert they tried. They have food day at work just about every other day and all they have is cakes, cookies, WHITE CASTLES and all my other old best friends. I'm disgusted. I seriously feel like if I just stop eating maybe I'll be fine. Then there's my mom who is CONSTANTLY asking me "can you eat this? what about this? is this ok? can you eat this?" Dear lord I just want everyone to disappear and leave me alone with a delivery pizza that I didn't have to spend 30 minutes cooking and cleaning up after.

I hardly have the time, energy, money or patience for this. And I cry when I think about how this is the rest of my life. And yes I know, it could be worse. But please this is just me whining.

jparsick84 Rookie
You guys made me realize too there probably is something I've over looked...I wonder, could it be my diet 7up? Could it be my mary kay night cream that I use as lip gloss? Could it be my ice tea? My cigarettes? My envelopes??? Could I also be lactose intolerant??

Some envelopes do have gluten on them - I never take a chance and always use a wet paper towel to seal an envelope.

The other thing could be your diet soda. I too was completely gluten-free (eating only whole, non-processed foods as proof), and I couldn't figure out what it was. I finally figured out it was artificial sweeteners, which would include your diet soda. Apparently it isn't that uncommon for Celiacs to also have trouble with artificial sweeteners, but it was still incredibly frustrating - being deprived of my afternoon diet soda, I now have a snack instead, which means more calories but no more D. I suppose that's a good trade off... ;)

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      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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