Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Sad, Overwhelmed, Discouraged.....


AutumnSong

Recommended Posts

AutumnSong Rookie

Hi everyone -- I'm new here, practicaly speaking. I joined here 2 years ago when my brother was diagnosed with celiac. I was trying to find out what sort of testing I needed. But I didn't have a doctor, money, or insurance, so I put the testing off. Last month when I was in for another bacterial infection my optometrist told me she wanted me to go off gluten because new studies have shown a link between chronic allergy-eyes and gluten. I knew I couldn't go off gluten until I was tested, so I picked a new naturopath who spcializes in this area and put all the tests on a credit card. So now now I'm back here, 2 years later, because I am feeling very sad and overwhelmed and isolated right now, with no one to talk to about my new diagnosis and challenges, and so thought I might look here for a little encouragement.

In addition to dairy and soy intolerances, I just found out 6 days ago that I also have very high pineapple, egg and gluten intolerances. I do not have my celiac results yet. Additionally, the test shows I have moderate intolerances to bananas, beef, shrimp, beets, garlic, kidney beans, green peas, string beans, cocoa, blueberries, and almonds, all of which I am to stay away from for the next year or so. My naturopath said all the test results show I have a very leaky gut as a result of the gluten, as well as adrenal exhaustion. She said after my gut heals (probably a year or longer), some of the intolerances might go away, but probably not the gluten, dairy, soy, eggs, or pineapple (the last two were off the chart!).

Knowing about the leaky gut and how serious the situation is has helped me to finally stand up to all of the food cravings. I'm crawling out of my skin though! I have had health issues since early childhood which have gotten progressively worse over the years. I am now 48 and haven't felt well or slept well for many years. I really want to get healthy and feel well, and am happy to finally know gluten is a problem (whether or not I have full celiac), but I am feeling really sad and depressed and overwhelmed trying to figure out what to eat, as well as mourning the loss of all I can never have again. Garlic is very hard right now but I know it's probably temporary. It eliminates hummus, salsa, pasta sauce, good-tasting soup, good-tasting salad dressing, and good-tasting lots of other things. I didn't realize how many things it's in or how many things I add it to for flavor or how many things I don't like without it. I always took it for granted.

The hardest things to let go of are my sprouted whole-grain bread, eggs (including spinach omelets), pizza, mac and cheese, oatmeal, whole-grain toast with flax seed oil and maple syrup, and especially my sandwiches in the summer of sprouted whole-grain bread with either hummus, fresh basil and tomatoes -- or hummus, spinach and fresh roasted red peppers. Unfortunately the gluten-dairy-soy-egg-free versions of these things are unedible and have pretty unhealthy ingredients, so I will have to learn to live without them. Gluten-free rock/cardboard so-called bread will never be able to replace my delicious (I thought healthy)organic sprouted seven-whole-grain bread!

In the past several years I have lost both of my parents, one of my doctors, and a number of relatives and friends to cancer, and my best friend in hospice right now. My dad is gone 6 years this month and my mom died 2 years ago. This feels like another death. What's wrong with me? Is it normal to feel so sad about this? Both times I went to Whole Foods this week I walked up and down the isles and cried, and wondered what to eat, what was contaminated and what wasn't? Sometimes I cry during the day because the more I read to try and figure out what I need to avoid to stay away from gluten the more overwhelmed I get. (I haven't even tackled egg or anything else yet in the fine details of ingredient lists.) It seems like everything either has gluten or is cross contaminated. I love oatmeal in the winter but can't find any that is both gluten-free and organic, just one or the other. With everything I have to give up it's not fair to lose something I love because of cross-contamination. Plus, knowing I have to investigate and call about all of my toiletry items, cleaning supplies, supplements, spices, and everything else I use and own is so completely overwhelming -- not to mention all of the work to clean the kitchen of gluten! How am I ever going to get well when it seems like everything has gluten and it is impossible to avoid? Battling the dairy intolerance over the years has been hard, but this is even harder. And now soy, dairy, gluten and eggs? How can I discover and avoid it all? Did anyone else feel this overwhelmed at first? Or this sad? It feels like I'm in an impossible situation -- is there really any way to be free of all gluten (or anything else)?

I'm supposed to visit my former employers cross-country in May to see the little girl I nannied until they moved a year and a half ago. They are going to fly me out once a year to see her. I took care of her from the time she was a new-born until she was 5 and I miss her desperately, but now I will be a very high-maintenance guest and they probably won't want me to come anymore. I'll be too much of a hassle, especially since they eat-out or tak-out almost every meal. There won't be any pans, cooking utensils, grill, etc. for me to cook for myself on. The whole kitchen will be highly contaminated with gluten everywhere and all of their cooking things are non-stick and plastic, which I've read you can't get gluten out of. If I go, and skip the diet changes to make life easier and more pleasant, how much longer will it take my gut to heal? Even if I want to stick to the diet, it won't really be possible there, between the house and all the resteraunts. I can't bear to not go see my little Caroline!

Socially in general is going to be hard. I already have to bring my own food to social gatherings because of the dairy. This will make me even more different, and people seem to understand and receive this even less. Work is also difficult because I nanny for two little boys -- lots of stickers and glue and play-do, a kitchen full of gluten, a taster-oven and oven full of gluten, a car full of gluten from their snacks which they are not very neat with -- agaian, overwhelming!

I desperately want to get better and be healthy, especially since I'm getting older, but at the same time I feel devastated. Where do I go from here? I've already spent so many hours searching for hidden sources of gluten and organic alternatives with little results so far and I'm exhausted. How do I find all the information I need to avoid gluten and find suitable, organic replacements for shampoos and supplements and everything else? (Never mind all of the other hidden intolerances I have to research yet.) I feel so lost and discouraged. Has anyone else felt this way and does it ever get better? I'm drowning!!!!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



mushroom Proficient

First of all, welcome to the board, and I hope you find the help you are seeking :) We will do our best to provide it.

Sadness and grief at the loss of things you love is a perfectly normal feeling. People have said that giving up gluten is like grieving for a lost loved one - we go through all the stages until we finally come to the acceptance. One of the best ways I have found to get there quicker is not to think about what you can't have, but to sit down and make a list of the things you can have. Make that list the basis of your first shopping trip to the supermarket. You are not the first to have left a market in tears feeling totally overwhelmed by the decisions. So break it down, start slow and build on your knowledge day by day.

It is easiest to start with whole foods that are naturally gluten free - meat, fish, rice, vegetables, fruits, nuts (plain) and seeds, olive oil. Shop the outside walls of the market, and only venture into the middle for a few staples like the rice, perhaps try some Udi's bread, some Tinkyada pasta. Cook these with salt and pepper and single ingredient spices because some of the spice blends have gluten in them. Here the crockpot is your good friend because you can just brown the meat and onions and toss them into the pot with some cut up vegetables, maybe a tomato or some gluten free stock, set the temp. and it's ready when you get home. You can thicken it with some cornstarch if you wish.

Rice chex are gluten free for breakfast - you can try them with fruit and hemp milk which I find delicious. For lunch you can do a burger wrapped in lettuce, or a sandwich with Udi's bread.

Anyway, make a shopping list based on what you can eat and resolutely keep your eyes averted from everything else in the market :D - don't even look at them, think of them as rat poison (because to you they might as well be) and pretty soon you will find the cravings for this stuff diminish. You will start tasting the real flavors of foods, maybe for the first time. Enjoy exploring new vegetables and fruits. It's amazing what a limited range most of us have eaten in the past. Think of having vegetables like parsnips and rutabagas, jicama, swiss chard, kale, leeks. There are lots of exciting foods out there to explore.

For the inside of the store your list would probably incllude a cereal, gluten free broth, perhaps EarthBalance Soy-free spread, hemp milk (or another sub - not Rice Dream because it has been processed with barley), rice, Tinkyada pasta (a gluten free pasta sauce if you must (or you can easily make your own with canned gluten free tomatoes), Udi's bread - or Rudi's (whichever you can find) and some olive oil. With those you should be set to go.

But the really first thing you should do is rid your pantry and fridge of all gluten, or if you are living in a shared household, at least separate everything out, keep yourself separate shelves and cupboards (preferably the high ones to avoid things dropping on them) and buy your own jars of spread, mayo, anything that wil be contaminated by dipping in a knife that has touched gluten, and label your gluten free ones.

Once you are comfortable with the food issues you can set about dealing with toiletries, cosmetics, hair care, cleaning and other products in the house. It is too much to do all at once - you will drive yourself nutz and it is not necessary to be so stressed.

Good luck on your gluten free journey and come back often and ask as many questions as you like. And let us know how you are doing. :)

Link to comment
Share on other sites
Metoo Enthusiast
Link to comment
Share on other sites
navigator Apprentice

Welcome to the forum. I understand how overwhelmed you are feeling just now, but Mushroom has given you lots of good advice. Check Josh's farewell post (he's decided to stay) for lots of positive affirmation. I know that it may seem totally insurmountable just now but honestly it will get better.

Stick with it. Use the forum for support and informstion.

Link to comment
Share on other sites
health nut Newbie

Just an FYI- Rice Dream is safe even though it is processed with barley- it tested to less than 5 ppm...

Open Original Shared Link

Link to comment
Share on other sites
mushroom Proficient

Just an FYI- Rice Dream is safe even though it is processed with barley- it tested to less than 5 ppm...

Open Original Shared Link

Regardless of what the testing says, we have had so many posters state they had a gluten-type reaction to this milk that we routinely warn newbies to avoid it at first. If they want to experiment later and find that it is okay for them, that is fine, but the number of reactions to this rice milk, and no other, is just impossible to ignore.

Link to comment
Share on other sites
notme Experienced

you are in good company here :) you are sooo completely normal when faced with the whole gluten-free lifestyle change! right down to the supermarket trip - did exactly the same thing, as have many on this board. keep in mind that you might be having withdrawal symptoms - feels like the flu, w/irritability, fatigue, i even had night sweats! - pay attention to the good side of things. i was amazed at how much better i felt! i am 48, too (49 in a week or so, or "pushin' 50!!" my husband is so annoying...) and when the fog finally lifted, i felt at least 10 years younger. i continue to improve and it has been 18 months now - last week i noticed my sense of smell has been returning. who knew gluten affected so much???

anyway, my suggestion for your trip is to bring whatever you can eat with you. it's a visit, right? just break it down by how many days you will be eating there and plan it that way. maybe they could lay off the restaurants for your visit this time. i always bring a loaf of gluten-free bread and something to put on it. if i need to, i can live on boars head turkey and udi's bread. when we got stuck at the airport (el paso), and then we got stuck at the airport (dallas/ft worth) i was ok with it. i even got a little worried about the meat getting too warm so i got a cup with ice in it (w/ a lid) and jammed it in there (in a ziplok baggie) my anxiety levels are getting back to normal, so there is less panic involved when plans change. i just roll with it - i keep a backpack loaded with stuff to eat that i can grab and go. i put gluten-free meal portions in the freezer in case anybody wants to go out to eat i just pop one into my backpack or nuke it to take with me.

the personal care stuff - i would replace your toothbrush, shampoo/conditioner/gel (etc) and lipgloss/lipstick. i don't worry about my makeup so much - i use physician's formula anyway because of so many skin issues. plus i like it :) but eye makeup i use anything because i take that off with baby oil so it never runs down my face.

you can do it! and you will feel better! this forum is a great place to be to ask questions. alot of times i am wondering about 'this' or 'that' and i get on this site to ask only to find my same exact question already asked and answers rolling in. these people are priceless! oh, and also if you need meal ideas, go to the cooking/baking forum. we have some awesome cooks :D

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

Hello..and welcome!

It's all very overwhelming at first. Having to give up foods you've enjoyed is hard, and a lot of us go through a bit of a greiving process. Our bodies go through a withdrawl too, which adds to the depression of it all. If your vitamin/mineral levels are off they add into your mood too. Just be sure to check the ingredients carefully if you want to add supplements.

I remember the first few times I went to the grocery store I fought back tears thinking of all of the things I couldn't have. I felt a bit angry too.

My best advice to you is to make a list of what you CAN have, rather than focus on what you can't. Shop the outer perameter of the store and get veggies, fruits, and unproccessed meats. I tried new fruits/veggies I never had before as my "treats"

I'm gluten soy and dairy free so I know there are some things we have to give up. Soy is actually harder than gluten for me. It's a challenge.

Stir fry with any variety of veggies you choose is easy. Baked or grilled meats with veggies, potatoes, or rice are good. Use Olive oil on your veggies, or get the Earth Balance tub of butter replacement.(I get at Kroger's in the health food dairy case) It's soy and dairy free. Great on a baked potato.

I use So Delicious coconut milk. It comes in a carton and I get it at Kroger's in their health food dairy case. There's soy free/gluten free cereals too. Corn Chex are good, Gluten Free Rice Krispies are good too in the main stream cereal aisle. I smash the Rice Krispies in a mini food processor and use them as bread crumbs for meatloaf and meatballs, and for making Salmon patties from canned Salmon.

There are a lot of blogs that have recipes for various food intolerances. Google Gluten free/soy free/dairy free/egg free for recipes that replace some of the foods you used to eat.

Ground flax seeds can replace eggs in baked goods.

You're going through an adjustment phase and it seems so hopeless, but I promise you it will get better!

(((hugs)))

Link to comment
Share on other sites
Skylark Collaborator

I know exactly how you feel. I'm off gluten, dairy, most soy because of my thyroid, and just discovered I'm reacting to nightshades. I'm also trying to eat low-starch and minimal refined sugar to heal my gut. I'm going on a trip this month and I'm looking at eating an awful lot of salad. *sigh* I miss cheese something fierce, and losing nightshades means I can't cook with tomatoes or pepper.

I'm trying GAPS diet Open Original Shared Link to heal leaky gut. I haven't been doing it long enough to know whether it's going to help the intolerances but my digestion is much better now. I cook big batches of meat and vegetable soup and freeze in single servings to reheat easily. My non-soup meals are usually greens, a veggie, some homemade sauerkraut, and some fish or meat cooked on a Foreman grill. If you wanted to try GAPS you would probably have some fruit and nuts for breakfast. Fruit, dried coconut, and nuts (not almonds) is really good.

Otherwise, you might consider porridge from buckwheat or amaranth. Cream of Rice makes a good breakfast, or grits flavored with a little sausage. Here are mail-order organic, gluten-free oats. Open Original Shared Link :)

To sub for garlic, you can try asafoetida resin, a traditional Indian spice. You have to crush a little and sautee it in ghee to make the flavor/smell milder before you add it to your food. (Avoid asafoetida powder or hing unless you find hing made with rice flour and not wheat.)

You sound like you're anxious and depressed. It comes with the territory since food intolerance affects our minds. Don't let yourself freak out about CC. Stick to mostly natural, whole foods and just do your best with processed foods. Make sure your B-vitamins are OK and I find fish oil really helpful to keep my mind working well.

Link to comment
Share on other sites
pricklypear1971 Community Regular

I'm sorry its so rough.

You may also try picking up a copy of Living Without magazine. They have great hints on how to substitute and work around intolerances.

Link to comment
Share on other sites
health nut Newbie

Regardless of what the testing says, we have had so many posters state they had a gluten-type reaction to this milk that we routinely warn newbies to avoid it at first. If they want to experiment later and find that it is okay for them, that is fine, but the number of reactions to this rice milk, and no other, is just impossible to ignore.

Huh, I have not heard of anyone reacting to that before- but that is good to know! Thanks mushroom! See, this is the stuff you can't learn from books :)

Link to comment
Share on other sites
Adalaide Mentor

It's been close to a month for me. Everyone here was so nice to assure me that crying over smelling KFC didn't make me a complete lunatic. I've cried in the grocery store myself, but I think I have at least that under control now. Yeah, it sucks, is hard and overwhelming. It gets easier, just over a few weeks I've found myself coping a bit better. I know it's easier said than done but it comes down to a simple choice. You can choose to let this defeat you, make you miserable and sick or you can choose to overcome and have a positive outlook. Changing my attitude was the first thing that has really helped me so far.

Dragging a bunch of food along on a trip may be a completely reasonable thing to do, but to me seems a bit overwhelming. (I haven't traveled yet but I know I will.) Instead of swearing off eating out, research local restaurants before you leave so you know where and what you can safely eat. Find a local health food store where you'll be going so you can pick up some stuff there instead of spending half your luggage space on food.

Sure, the bread isn't the same. This was hard for me because what I want is a replacement and what we get is something similar yet different. Again, it is simply a matter of accepting the fact that no, bread won't ever be the same but it doesn't have to be bad. I had success with my first loaf of Udi's, maybe you'll like it maybe you won't but there is good bread to be had. I tried Glutino pizza crusts, which imo are gag me with a maggot bad. Maybe worse. I've decided that there has to be a good pizza option and haven't given up hope. (I almost have my husband talked into buying from Venice Bakery, it's a bit pricey but I want pizza!)

Link to comment
Share on other sites
Skylark Collaborator

Oh, there is something else I always try to say to new people about cross-contamination. All the research on people healing from celiac disease gluten-free is on real-life people who are doing their best, sometimes getting glutened, sometimes getting CC, sometimes even misreading a label and eating wheat by mistake. Nobody is perfect at this diet but we do still heal! Just do your best and you will be fine.

Link to comment
Share on other sites
Melissa Palomo Apprentice

heh. I just started blogging about my gluten-free journey and my second post was so relevant to this post. :) Yes, it gets better. A lot better. It's ok to feel sad and frustrated at first. But "we" (the celiac community at large) get it - we've been there. It's normal. hugs.

Link to comment
Share on other sites
AutumnSong Rookie

Thank you, Mushroom! Yes, that is the first thing I told myself -- that I wasn't going to think about what I can't have but instead focus on what I can have, and I made a list. Then I threw out, or bagged to donate to food pantry, everything I can no longer have. Then I went to Whole Foods and had a mini-meltdown, which I didn't anticipate. Then I went home and started researching on the Internet and have felt like I'm under a blanket of black clouds ever since. So much for my initial plan of be brave and just do it. I'm trying so hard to keep a positive attitude and not be discouraged, but so far I'm not doing very well. I keep wishing my parents were here to talk to. They went way too young. I still need them!

When not being overcome by food cravings, an organic, whole-foods diet is basically what I've strived for the past 20 years. If I was told I could no longer have artificial sweeteners, sugar, cookies, pastries, soda, etc., there would be no problem. I don't eat those anyway. Being told I can't have healthy foods is very difficult. Unless I'm on a dairy binge, I usually shop the perimeter of the store. I love most veggies (including rainbow chard and red, purple or lacinto kale), extra-virgin olive oil (everywhere I used to use butter years ago, except toast), chicken, turkey, grass-fed beef, wild Alaskan salmon, lamb, brown basmati rice, most beans, goat butter/cheeses/kefir, berries, lots of different fruits, (love to make smoothies with the kefir), oatmeal (with chopped, fresh apple, cinnamon, nutmeg, cloves and rice milk), whole-grain high-fiber cereals like Cascadian Farms Raisin Bran or Trader Joe's Raisin Bran Clusters, Rice Milk (used Rice Dream for almost 20 years and just switched to a whole brown rice milk a few months ago), Amy's No-cheese pizza (with added spinach and goat chevre on top), coconut oil/butter/ice cream.... a lot of healthy things.

Things I LOVE I can now no longer have are: sprouted whole-grain toast w/goat butter dipped in the creamy, warm yolk of pastured eggs, spinach and chevre omelets, sprouted whole-grain toast with flaxseed oil and maple syrup, Amy's Lentil Soup, kale saut

Link to comment
Share on other sites
AutumnSong Rookie

I do need a hug, MeToo -- thank you!!! I can't have almonds anymore but I've been using rice milk for years and love it. Thank you so much for the hug and the encouragement!!! So appreciated!!!

Link to comment
Share on other sites
mushroom Proficient

Thank you, Mushroom! Yes, that is the first thing I told myself -- that I wasn't going to think about what I can't have but instead focus on what I can have, and I made a list. Then I threw out, or bagged to donate to food pantry, everything I can no longer have. Then I went to Whole Foods and had a mini-meltdown, which I didn't anticipate. Then I went home and started researching on the Internet and have felt like I'm under a blanket of black clouds ever since. So much for my initial plan of be brave and just do it. I'm trying so hard to keep a positive attitude and not be discouraged, but so far I'm not doing very well. I keep wishing my parents were here to talk to. They went way too young. I still need them!

When not being overcome by food cravings, an organic, whole-foods diet is basically what I've strived for the past 20 years. If I was told I could no longer have artificial sweeteners, sugar, cookies, pastries, soda, etc., there would be no problem. I don't eat those anyway. Being told I can't have healthy foods is very difficult. Unless I'm on a dairy binge, I usually shop the perimeter of the store. I love most veggies (including rainbow chard and red, purple or lacinto kale), extra-virgin olive oil (everywhere I used to use butter years ago, except toast), chicken, turkey, grass-fed beef, wild Alaskan salmon, lamb, brown basmati rice, most beans, goat butter/cheeses/kefir, berries, lots of different fruits, (love to make smoothies with the kefir), oatmeal (with chopped, fresh apple, cinnamon, nutmeg, cloves and rice milk), whole-grain high-fiber cereals like Cascadian Farms Raisin Bran or Trader Joe's Raisin Bran Clusters, Rice Milk (used Rice Dream for almost 20 years and just switched to a whole brown rice milk a few months ago), Amy's No-cheese pizza (with added spinach and goat chevre on top), coconut oil/butter/ice cream.... a lot of healthy things.

Things I LOVE I can now no longer have are: sprouted whole-grain toast w/goat butter dipped in the creamy, warm yolk of pastured eggs, spinach and chevre omelets, sprouted whole-grain toast with flaxseed oil and maple syrup, Amy's Lentil Soup, kale saut

Link to comment
Share on other sites
AutumnSong Rookie

you are in good company here :) you are sooo completely normal when faced with the whole gluten-free lifestyle change! right down to the supermarket trip - did exactly the same thing, as have many on this board. keep in mind that you might be having withdrawal symptoms - feels like the flu, w/irritability, fatigue, i even had night sweats! - pay attention to the good side of things. i was amazed at how much better i felt! i am 48, too (49 in a week or so, or "pushin' 50!!" my husband is so annoying...) and when the fog finally lifted, i felt at least 10 years younger. i continue to improve and it has been 18 months now - last week i noticed my sense of smell has been returning. who knew gluten affected so much???

anyway, my suggestion for your trip is to bring whatever you can eat with you. it's a visit, right? just break it down by how many days you will be eating there and plan it that way. maybe they could lay off the restaurants for your visit this time. i always bring a loaf of gluten-free bread and something to put on it. if i need to, i can live on boars head turkey and udi's bread. when we got stuck at the airport (el paso), and then we got stuck at the airport (dallas/ft worth) i was ok with it. i even got a little worried about the meat getting too warm so i got a cup with ice in it (w/ a lid) and jammed it in there (in a ziplok baggie) my anxiety levels are getting back to normal, so there is less panic involved when plans change. i just roll with it - i keep a backpack loaded with stuff to eat that i can grab and go. i put gluten-free meal portions in the freezer in case anybody wants to go out to eat i just pop one into my backpack or nuke it to take with me.

the personal care stuff - i would replace your toothbrush, shampoo/conditioner/gel (etc) and lipgloss/lipstick. i don't worry about my makeup so much - i use physician's formula anyway because of so many skin issues. plus i like it :) but eye makeup i use anything because i take that off with baby oil so it never runs down my face.

you can do it! and you will feel better! this forum is a great place to be to ask questions. alot of times i am wondering about 'this' or 'that' and i get on this site to ask only to find my same exact question already asked and answers rolling in. these people are priceless! oh, and also if you need meal ideas, go to the cooking/baking forum. we have some awesome cooks :D

Notme, thank you for the tips and encuragement! I don't think I am going trough any type of withdrawl -- the symptoms you describe I have all the time. My hot flashses and night sweats aren't from gluten, just old-fashioned menopause. :)

Unfortunately I can't have Udis bread because it has egg. Haven't found much "grab and go" stuff I can have. I think the closest I've found so far is an apple. Not sure there is much I can bring with me on the trip in the way of food. Everything I eat is perishable. Hadn't thought about not being able to buy anything at the airport. :(

Thankfully I don't wear make-up or lipstick so I don't have to worry about that. I only use Badger lip balm, which I think is ok but haven't checked yet, and a moisturizer which has to go because it has almond oil in it. :( I haven't checked my shampoo and conditioner yet.

Thank you for letting me know about the cooking forum. I will look for it and check it out.

Link to comment
Share on other sites
mushroom Proficient

I have been thinking about your garlic problem. There is a chinese product called hing, made from asafoteida (sp?) which can take the place of onions and garlic.

I am appending a couple of websites, one for soy AND dairy free suggestions, and one for a recipe I saw in today's paper that I thought you might be able to adapt. I know it calls for paneer or haloumi, but you might be able to substitute Daiya in some way (Probably not on the grill :rolleyes: ) for this. It calls for hing, and instead of the Tamari or Braggs you can use Coconut Secrets Coconut Aminos (from Whole Foods). You can also substitute probably any pancake recipe you find you like or experiement using rice/tapioca flour and perhaps buckwheat or sorghum flour. :) Anyway, I hadn't forgotten your special needs.

Open Original Shared Link

Open Original Shared Link

The vegetarian recipe makes about 12 200mm-sized pancakes. They can be prepared ahead of time, and they also freeze well. To freeze, separate pancakes with greaseproof or plastic wrap then place into a plastic bag and pop in freezer.

Pancakes:

1 x 420g can brown lentils (I use Select brand)

1 tsp salt

Black pepper to taste

1/2 tsp hing*

1 Tbsp lemon juice

1/2 cup fresh herbs (mostly parsley and basil leaves with a few sprigs oregano, thyme and rosemary leaves stripped away from the stalk)

1 1/2 cups low-fat milk or more for thinner pancakes

1 Tbsp olive oil

1 cup each white and wholemeal flours

1 tsp baking powder

Extra oil for frying

Marinade:

3 Tbsp each honey, Tamari or Braggs, olive oil and balsamic vinegar;

Pinch each of salt, black pepper, mustard powder and hing*;

Filling:

Two coloured peppers, sliced into skinny strips

Handful fresh asparagus or green beans, sliced

1 carrot, sliced into skinny strips

1 eggplant, sliced into skinny strips

2 courgettes,sliced into skinny strips

400g haloumi or paneer**, sliced

Use a food processor to puree the lentils with their liquid, salt, black pepper, hing and lemon juice.

Add the fresh herbs, milk and olive oil then blend to chop up herbs.

Sieve flours and baking powder and add to liquid ingredients. Blend just to combine. For a thinner batter add more milk.

Heat a teaspoonful of oil in fry pan then cover base of pan with batter - when bubbles have appeared over pancake flip to cook other side. Repeat process adding more oil to pan to cook remainder of batter. Stack pancakes, cover to keep warm, and make the filling.

Combine marinade ingredients, add the prepared vegetables and paneer/haloumi and toss to coat. Heat a grill or barbecue, arrange the vegetables and cheese on the griddle and cook for a minute each side.

Have warmed pancakes ready, fill and roll firmly, and serve with preferred dressing or sauce, and a salad.

* Hing also known as asafetida is a substitute for onion and garlic. It comes in a powdered form which can be purchased from Bin Inn stores, Piko Wholefoods and Indian food stores.

Link to comment
Share on other sites
AutumnSong Rookie

oh, that is too bad about the spices :( what an investment and what a waste!

Hey, don't be so hard on yourself for your coping mechanisms. It is a big adjustment and it takes time, so allow yourself to grieve, even wallow a bit in self-pity if it helps, because there are indeed things that are lost to you. Most of them you will learn to forget and substitute adequately for so that you don't miss them much, but you really can't replace phyllo pastry or croissants :( I hope, having lost your parents, that you have some kind of support system you can turn to, someone who will try to understand what you are going through. You sound a bit like my hub's cousin, who wailed "I'm too young to be an orphan!" :D and I knew what he meant.

And I agree, if you have been eating a diet of "healthy" foods and not indulging in junk/fast food, it seems like double punishment to be told you can't eat your healthy foods either.

So tell us what you can eat, and we might be able to help you with menu ideas. Look in the recipe section here on the forum, and do google searches for ingredients you can have and see what comes up. Google a particular dish you would like to make and figure out how you can sub for the verboten ingredients. I am a bit limited too (although I can have garlic :) ), but no lemon or tomato, and no wine (hubs getts sinus from it - he is celiac too) makes my saucing a bit limited. And no soy, but I have found Coconut Secrets at Whole Foods as a soy sauce substitute. If you check my sig. it is amazing what you can get by without and learn to substitute for. Just think of it as having gone back to culinary academy and learning to cook all over again, with new ingredients and a new outlook. You can do this --it won't happen overnight, and you will grieve along the way, but I know that you will get there. You already know how to eat healthy - now you have to learn how to eat healthy with limiations. :D You will come to learn I am a bit Pollyanna-ish :D

There are lots of new products to try - hemp milk and ice cream for example if you can't do any more all the things you mentioned. Rice Chex cereals are gluten free, and are good crumbled as toppings or crusts. Keep talking to us and we will help.

Thank you, Mushroom. Pollyanna is one of my favorite movies! :) I just showed it to the 5-yr-old I take care of last week.

Chex cereal is not an option for me because it is not organic. Don't want to risk any GMOs. I don't think that would facilitate healing for me. I like coconut ice cream as a once-in-a-while treat, but Whole Foods discontinued the one with the healthier ingredients, which made me very sad. Now it makes me even sadder. :(

I'm having trouble finding a healthy salad dressing. My doctor said the one I'm using has gluten. I haven't been able to find a good recipe that would taste good without garlic. My former doctor wanted me to only use olive oil and fresh-squeezed lemon juice, but I don't like it without garlic. My new doctor said I can use apple cider or balsamic vinegar. Have been looking for a good recipe but haven't found one yet. I would also enjoy some type of a tahini dressing recipe if I could find one that's healthy. Unfortunately overpowering food cravings over the past 10 and a half years have caused me to eat a lot of things I shouldn't have, and now that I understand what is going on with my health I want to try to eat as healthy as possible to heal as quickly and completely as possible. I also need to lose another 28 pounds. I gained a lot of weight with so many people dying on me. Eating has been healthy again this past year with the exception of last month and the first two weeks of this month when I crashed -- mine and my dad's birthday, the anniversary of his terminal cancer diagnosis, holidays with no family to call, and this month the anniversary of his death -- well, it was too much and the pizza, mac and cheese, cheese cake, chocolate pudding and dark chocolate bars at Trader Joe's all offered warm and cold creamy comfort. In the past week I already lost the 5 pounds I gained back -- happy for that! But I really need to eat as healthy as possible from now on, though at the moment it feels like it's killing me. Cocoa also came in as a moderate intolerance but my doctor said I could keep that for now as long as I stopped everything else, but I discovered this past week that that was one of the things making me feel so sick. Devastating! That was my second strongest addiction next to dairy. Hard to believe anyone can truly survive without chocolate, but I'm going to have to learn if I don't want to keep feeling like I have a stomach virus every day. Chocolate immediately calms me whenever I become too stressed. The new food limitations have removed all of my comfort foods. Grieving with no comfort foods, plus actually grieving the comfort foods, is extremely difficult. I feel like I'm falling apart. Right now I would love several slices of bread with melted butter! Hmmm.... I think I digressed from my original thought. Sorry! It's hard with no one to talk to. Normally I would tell all this to my best friend out in CA, but since she's dying in hospice right now that won't be happening anymore. I thought I was going to lose my mind watching the 3-yr-old eat his mac and cheese today. I finally had to turn away, but I could still smell it. How long did it take you to stop missing all the different foods? Or do you still miss them? How long until the cravings go away? They're tormenting! :(

Link to comment
Share on other sites
AutumnSong Rookie

Thank you, Mushroom. I've never been a pancake person -- I've always loved french toast. I am excited to check out the websites. Thank you very much!

Oh -- I've tasted Daiya cheese -- :( I can have goat dairy in moderation -- it was a low intolerance (had close to 50 low intolerances, so don't have to give up any of them, otherwise my doctor said there would be nothing at all for me to eat). I was wondering today if I could maybe melt goat cheddar in a pan with some rice milk and use it to make mac and cheese with brown rice pasta. I have no idea how to make cheese sauce from scratch, but plan to check it out on the Internet this weekend. Then maybe I could have one comfort food.

Link to comment
Share on other sites
mushroom Proficient

Cravings? Well, if someone offered me a buttered slice of sourdough french right now, I might look at it a bit longingly, but I wouldn't feel like I was going to die because I couldn't have it. Like I said, think of all gluten as being rat poison, and you will pretty soon learn not to want it. I look at OP's shopping baskets at the checkout and I think, yuck, look what tht woman is eating and feeing her family :blink: It depends on how quickly you transition from the grieving phase to the experimental phase. But you have had such a lot of grief lately, it must be really hard. I lost my best friend to whom I confided everything about six years ago, and I still haven't found anyone to talk to the same way I talked to her :( So I feel your pain.

I am really not sure what foods fall outside your must-have organic category. I too attempt to avoid GMO at every opportunity, and so eliminating corn and soy helped that problem a lot. And of course wheat. I don't know if there are any organic processed gluten free foods - this will require more label reaing on your part, but then you are alrleady used to doing that :)

Let me know if there is anything else we can help you with. And feel free to come and talk to us any time.

Link to comment
Share on other sites
AutumnSong Rookie

Hello..and welcome!

It's all very overwhelming at first. Having to give up foods you've enjoyed is hard, and a lot of us go through a bit of a greiving process. Our bodies go through a withdrawl too, which adds to the depression of it all. If your vitamin/mineral levels are off they add into your mood too. Just be sure to check the ingredients carefully if you want to add supplements.

I remember the first few times I went to the grocery store I fought back tears thinking of all of the things I couldn't have. I felt a bit angry too.

My best advice to you is to make a list of what you CAN have, rather than focus on what you can't. Shop the outer perameter of the store and get veggies, fruits, and unproccessed meats. I tried new fruits/veggies I never had before as my "treats"

I'm gluten soy and dairy free so I know there are some things we have to give up. Soy is actually harder than gluten for me. It's a challenge.

Stir fry with any variety of veggies you choose is easy. Baked or grilled meats with veggies, potatoes, or rice are good. Use Olive oil on your veggies, or get the Earth Balance tub of butter replacement.(I get at Kroger's in the health food dairy case) It's soy and dairy free. Great on a baked potato.

I use So Delicious coconut milk. It comes in a carton and I get it at Kroger's in their health food dairy case. There's soy free/gluten free cereals too. Corn Chex are good, Gluten Free Rice Krispies are good too in the main stream cereal aisle. I smash the Rice Krispies in a mini food processor and use them as bread crumbs for meatloaf and meatballs, and for making Salmon patties from canned Salmon.

There are a lot of blogs that have recipes for various food intolerances. Google Gluten free/soy free/dairy free/egg free for recipes that replace some of the foods you used to eat.

Ground flax seeds can replace eggs in baked goods.

You're going through an adjustment phase and it seems so hopeless, but I promise you it will get better!

(((hugs)))

Bubba's mom, thank you so much for the encouragement and the hugs. SOOOO appreciated!!!! :) Thank you for the tips. Will do the Google search -- thank you!

Link to comment
Share on other sites
AutumnSong Rookie

Cravings? Well, if someone offered me a buttered slice of sourdough french right now, I might look at it a bit longingly, but I wouldn't feel like I was going to die because I couldn't have it. Like I said, think of all gluten as being rat poison, and you will pretty soon learn not to want it. I look at OP's shopping baskets at the checkout and I think, yuck, look what tht woman is eating and feeing her family :blink: It depends on how quickly you transition from the grieving phase to the experimental phase. But you have had such a lot of grief lately, it must be really hard. I lost my best friend to whom I confided everything about six years ago, and I still haven't found anyone to talk to the same way I talked to her :( So I feel your pain.

I am really not sure what foods fall outside your must-have organic category. I too attempt to avoid GMO at every opportunity, and so eliminating corn and soy helped that problem a lot. And of course wheat. I don't know if there are any organic processed gluten free foods - this will require more label reaing on your part, but then you are alrleady used to doing that :)

Let me know if there is anything else we can help you with. And feel free to come and talk to us any time.

Thanks, Mushroom! You've been a huge help already, as well as a comfort. Yes, I have been a very avid lable reader for many years. I also research everything thoroughly on the Internet and in books. There just seems so much to research all at once now, so it's extremely overwhelming. What do you use for hair products? Do you have to research every single ingredient to know if it has gluten or is there a list published somewhere to tell if ingredients in hair and skin products contain gluten? I haven't been able to find much on that yet. What do you use for a moisturizer? Do I need to be concerned with laundry and cleaning products too? Can hand soap contain gluten?

Link to comment
Share on other sites
ciamarie Rookie

Thanks, Mushroom! You've been a huge help already, as well as a comfort. Yes, I have been a very avid lable reader for many years. I also research everything thoroughly on the Internet and in books. There just seems so much to research all at once now, so it's extremely overwhelming. What do you use for hair products? Do you have to research every single ingredient to know if it has gluten or is there a list published somewhere to tell if ingredients in hair and skin products contain gluten? I haven't been able to find much on that yet. What do you use for a moisturizer? Do I need to be concerned with laundry and cleaning products too? Can hand soap contain gluten?

There are a few threads in the 'labels and ingredients' message area that I looked at when I was researching shampoos, etc. Basically you want to avoid any ingredients that mention wheat, and I believe panthenol is also derived from wheat so I avoid that too. Also ingredients that mention oats as they're usually cross-contaminated with wheat, and barley or malt type ingredients also contain gluten.

One thread I found also suggested tocopherols may be derived from wheat in some products (i.e. Vitamin E), if it's not from wheat then if you avoid soy that might be an ingredient to avoid anyway. Manufacturers that are supposed to be good about labeling wheat or other gluten ingredients include:

Neutrogena, Suave, Garnier, and Dove.

Personally, I got some suave professionals shampoo and conditioner that didn't have any 'bad' ingredients listed, and it's worked fine. My itchy scalp went away! For bath soap I've been using a Costco brand with no issues. For a facial moisturizer I've been using Oil of Olay for 30 years now, it's one of the few moisturizers that doesn't irritate my skin. I also found a generic one with the same ingredients that's a little thicker at Winco that's working ok for me. It was inexpensive enough I thought I'd experiment.

If there is a particular brand or something you want to research, use the 'search forum with Google' box at the top of the forum pages, I get tons of good information using that method.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - GardeningForHealth replied to GardeningForHealth's topic in Coping with Celiac Disease
      9

      10 years later, my celiac is progressing

    2. - GardeningForHealth replied to GardeningForHealth's topic in Coping with Celiac Disease
      9

      10 years later, my celiac is progressing

    3. - sc'Que? commented on Scott Adams's article in Summer 2024 Issue
      1

      Speculating on Benjamin Franklin's Health: Could He Have Had Celiac Disease?

    4. - TessaBaker replied to MiriamW's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      54

      Hair loss

    5. - Celiac16 replied to Sultana's topic in Related Issues & Disorders
      3

      Thiamine supplementation


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,992
    • Most Online (within 30 mins)
      7,748

    Celiac Family
    Newest Member
    Celiac Family
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • GardeningForHealth
      As a side note, it seems that medical science has evolved in the past 5-6 years regarding Celiac Disease, and I am now catching up. It seems that anything that disrupts the microbiome sufficiently enough can--in genetically susceptible individuals--lead to Celiac Disease. I have been reading now that antibiotics, excessive simple carbohydrates such as refined sugars and starches, the manner of birth such as C-section vs vaginal delivery, the diversity of one's diet, the presence of certain bacteria or viruses, can all contribute to microbiome dysbiosis, which can lead to Celiac. This is fascinating research.
    • GardeningForHealth
      I mostly eat healthy. My diet has varied over the past 10 years but mostly consisted of meals I cooked at home made from scratch. Ingredients I used over the years include (not in order): non-wheat grains such as teff, sorghum, millet, and eggs, butter, cheese, some milk, meat (poultry, red meat, but very little processed meat), gluten-free baked bread (mostly Canyon Bakehouse brand), vegetables, fruits, nuts, legumes, peanuts, chocolate (not in the past 6 months). However, the mistakes I made in my diet are that I consumed too much sugar and carbohydrates from gluten-free baked goods that I baked myself at home such as gluten-free dessert items, and also I ate pretty much the same exact meals over and over, so a great lack of diversity in what I ate. I got lazy. I think this messed up my microbiome. The meals I ate were mostly healthy though. I always made sure to eat vegetables and fruits on a daily basis.  I have checked for nutrient deficiencies over the years and I am sometimes low in Vitamin D. I started supplementing it after that. What concerns me is the progressive nature of the food intolerances, which indicates the gut is not healing and has been leaking all along. 
    • TessaBaker
      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
×
×
  • Create New...