This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I have a family of 3. Our grocery bill went up in a huge way. But on the other end, our dining out bill went down. We all also have fewer health issues, so there is another area of good savings. Regardless, it is still a bit unsettling to see how much money we spend on food.
Since my diagnosis two years ago, here is what I have done to save money:
* My grocery store sells 'family packs' of natural/grass fed meats. I save $25 per pack this way and I only make recipes for those cuts of meat. When meat is on sale, I buy extra amounts of it and save it for later. If your market doesn't advertise this, talk to the butcher to see if they can work out a deal. Also (this may sound loony), but I have found a lot of natural meats farmers on Craigslist, FoodHub, EatWild, and other sites.
* I am now making my own coconut milk. A 25# bag from Bob's Red Mill is $45, but it works out to $.55/32 oz container instead of $4.50/32 oz container. In a blender, blend 2 cups of shredded coconut with 4 cups of boiling water. Strain into a bowl with a sieve. Throw away the fiber. Blend milk in blender again. Done! Easy peasy!
* I soak dry beans overnight and boil a bunch during the day. I freeze the cooked ones I won't use in the same week. Great for soups, salads, chili, bean dips/spreads.
* Look to see if there are any independent food buying clubs in your area. It is akin to Costco/Sam's Club, but on a grassroots scale. The club has a business license, which means it can secure wholesale prices from grocery, meat, and produce distributors. Sometimes these groups can be found on Yahoo. I'm a part of a club where I live and I've saved hundreds of dollars on organic produce, oils, grains, etc.
* Casseroles are my friend! I bought this one "The Best Casserole Cookbook Ever" and am really happy with the recipes. Meat & veggies go further!
* This one took us by surprise! We've found that the fewer grains we eat (rice, quinoa, gluten-free oatmeal, etc) we eat, the less we need to eat. It was my husband (non-Celiac) who first noticed this. It seems like since our bodies aren't having to burn sugar/insulin and demand that we give it more, the more nutrients we absorb (as oppose to burn off).
* Get an account with Azure Standard (.com). They sell healthy foods and all manner of paper goods in bulk. You'll need to call them to find out where their drop-off point is in your area (which may, ironically, be a food buying club!) and then talk to the drop-off point person to let them know that you'll be there to fetch your items. I've saved a lot of money on cereal, shelf-stable milk products, nuts, dried fruits, etc.
I have really awful gluten ataxia, which results in massive anxiety and all kinds of other horrible symptoms that I won't get into here. The ONLY thing (apart from calling my psychiatrist for an emergency Ativan prescripton) is a really good workout where I get my heart rate up. All it takes is 15-30 minutes. This is painfully difficult to start when I'm feeling really horrible. But after giving it a try last year (after feeling like I wanted to die - literally), I was stunned by how well my body responded to alternating walking & running on the treadmill for ten minutes.
Now I only exercise to help my brain. The fact that I've lost weight and am really strong are both great side effects.
I'm starting a gluten-free bakery out of my house. I'm happy to share what works for me! While I've been baking for awhile, it occurred to me a few months ago that a lot of gluten-free recipes/substitutions have minimal nutritional value. I have tested a lot of recipes using healthier substitutions and have gotten some really great results.
I divide the flour in half and use two separate flours. For example: if your recipe calls for 2 cups of flour, use 1 cup of gluten-free all purpose flour mix & 1 cup of rice flour (or whatever else). This makes for a more mellow flavor and becomes more palatable, since gluten free flours can have a different taste and texture.
Fats: I only use coconut oil (can be purchased inexpensively on (Company Name Removed - They Spammed This Forum and are Banned)) for my fat. It can be used as a solid or melted. The thing about using oils is that you need to adjust your liquid ratio because butter is a solid. This can work, too, though!
If you need to convert eggs, any of these can work well:
* Ener-G egg replacer is awesome. It doesn't have one stitch of nutritional value, though. But, it works great! Not for use in pudding, though.
* In a coffee grinder, grind 1 T of Chia Seeds or Flax Seeds and add 3T boiling water for EACH egg you need to replace. Both seed types are chock full of good stuff! Whisk in a bowl until a gel forms. Add to recipe. Works awesome for puddings, too! (I just made flan using coconut milk to sub cow milk & chia seeds to sub eggs - YUM!) Because of the water content, you will need to increase your baking times, but do not increase your flours. If the dough seems a little to 'binded', add some more melted fat (coconut oil is my preferred fat).
If Xanthan Gum isn't your thing (too expensive, sensitive to it, just run out of it...), I have found that Chia or Flax seeds also make a great substitute for this. Lately I haven't been using any Xanthan Gum, subbing Chia seeds/water for both my eggs and gums. I don't increase the amount of the seed mixture. Instead, I just substitute my eggs and call it good.
* Double your vanilla and slightly increase your other seasonings to mask or decrease the different flavor of gluten-free flours.
* Liquid extracts (vanilla, for example) tend to evaporate in heat. I've been using powdered vanilla. It ain't cheap (vanilla.com is the cheapest I've found), but you need LESS and the flavors pop when exposed to heat.
The Whole Life Nutrition Cookbook has all gluten free, dairy, free, and egg free recipes. A lot of the grains you mentioned are used in this book. They also have a blog with recipes! I've had really great luck with everything in their book.
I'm starting a gluten-free bakery and have found that coconut oil is AMAZING! It can be expensive at stores, but (Company Name Removed - They Spammed This Forum and are Banned) usually has good deals on it. It is just as fatty as butter and can be used as a solid or when melted. If you are concerned about the flavor, double your vanilla and other seasonings & that should be sufficient. I've worked with various oils and shortenings and while they all work to one degree or another, I'm still partial to good fat (not to mention all of the health benefits of it!).
I had the same curiosity when I was first diagnosed. I remember scoffing at the idea that I should change out my wood spoons or be wary of gluten-free foods and regular restaurants. I thought I didn't show any outward signs, barring some mild depression & occasional constipation (but that's life, right?). It turns out that the longer I've gone without gluten, the worse my reaction is when I do ingest it. In fact, it is downright crazy how bad my symptoms are (I have ataxia, so my brain & nervous system get really messed up). Also, considering you have two types of cancer that are tied to Celiac (according to Dr. Greene's book Celiac Disease: a hidden epidemic), my advice to you would be to err on the side of caution.
While I understand and appreciate the need for data (I'm a data nerd myself & am also 35), let your body dictate how cautious you need to be. The evidence is in your diagnosis and in your other illnesses. Give your immune system every opportunity to be as strong as possible. Also, don't be surprised if other food sensitivities surface. Once your immune system settles down, it won't be on high alert all day every day, thus giving it a rest so it can respond more forcefully when needed.
Be sure to avoid soy if you aren't already (it can wreak havoc on the thyroid). Also consider avoiding iodine (also hard on the thyroid) - which includes the stuff in multi-vitamins. Cooking any cruciferious vegetables (kale, chard, spinach, cabbage, etc) will greatly reduct the amount of goitrogens, which will in turn support your thyroid.
While I don't have thyroid cancer, I do have Hashimoto's. Since I have taken gluten, soy, casein, most grains (even rice), and raw cruciferous vegetables out of my diet, my antibody count has gone down considerably and my T3 & T4 levels are within the range of normal. This includes spacing out on refilling my Armour prescription for six months (life got in the way). Given the opportunity, your body has a remarkable ability to heal. This will undoubtedly cause some degree of hardship for your husband and family members. But it is a lot harder on them if you are unwell, as opposed to making some lifestyle changes. The lifestyle changes can be really challenging and on-going, so do what you can to get support, either here and/or with a support group or nutritionist in your area.
When it comes to eating with family and friends, consider making a plan to make sure you are safe. Maybe bring your own dish/meal. Eating at home before eating out can reduce your need for food and subsequently increase your options when you do eat out - since you won't be so hungry.
I'd say YES!
I was off and on meds since I was 17 (I'm 35 now) for depression, anxiety, re-occuring depressive disorder, and then bi-polar. Two years ago I was taking a mood stabilizer that cost $400/month (after insurance - ack!). After gaining 70 lbs on it (including gaining 5 doing Weight Watchers), I talked with my psychiatrist about using diet & exercise to reduce my need for medication. She supported me 100%. Long story short: I bought a cookbook (Whole Life Nutrition Cookbook - all gluten-free, CF, and Egg Free) because it looked healthy, not because it was gluten free. Read it, and learned that gluten & dairy can cause mood swings. I did a two week trial and never felt better in my life. It was one of the most amazing periods of my life.
I ate gluten again to see what it would do. I was laid up in bed weeping and wanting to die for over a week. When that passed, I felt amazing again. When I went back to see my psychiatrist, she said, "You know, I think you can go off your medications!" She has never met anyone like me. I see her tomorrow for a follow-up and am going to tell her about the new term I learned last week: Gluten Ataxia. Nice to know I'm not an anomaly.
After two years without medication, I decided that I need to keep a low dose of medication in my body in the event that I eat gluten. I get suicidal ideation when I eat gluten, in addition to a host of other symptoms. Eating out is already stressful, but with that symptom, it is truly horrible. I still eat out infrequently. But when I do, I'm not so paranoid. I stick to certain restaurants and don't stray from them too often.
I'll admit that the medication I take has lifted my mood somewhat. Because of the Ceilac and Ataxia symptoms that I experienced most of my life, I had to give up a lot of my power, which is pretty depressing. I got things done, but man - it has been so hard! I need to work through my grief around that with my therapist sometime. Occasionally I still think I'm a flake or feel like a liability, when it is really just me having an off day as opposed to being ill over and over again.
I've ground up my gluten-free oats and made flour for pancakes. YUM! Because oats soak up loads of moisture, I'd substitute half of the flour with your oat flour and the other half with rice flour or and all purpose gluten-free flour mix. If you want to go full bore with the oat flour, add more moisture (eggs, flax/chia seed + water, applesauce, yogurt, or oil).
To answer your question, it takes me 3-4 weeks to feel better (I have brain symptoms aka 'gluten ataxia', not much gut stuff).
I felt the *exact* same way when I was diagnosed. I don't have gut issues. Instead, I have gluten ataxia and become bi-polar for two weeks. I now stay on a low dose of an antidepressant/mood stabilizer in the event that I ingest gluten so I'm not freaking out about getting back on meds. It is miserable living with the symptoms while racking one's brain trying to figure out where you went wrong. Here are some other ways I got glutened:
* Floradix (liquid iron supplement - didn't buy the gluten-free variety
* Lipstick (wheat germ!)
* Blue Cheese (some manufacturers use the mold from bread to make the mold in the cheese).
* French fries (sometimes they are lightly coated with breadcrumbs)
* Dijon mustard (sometimes has wheat)
* Licking envelopes (some use wheat paste)
It is such a racket. I have gone from heavily relying on packaged foods to making every single thing. I got glutened once from chicken broth because it had gluten it. (And my reaction was, "Why the frack do they need to add this to the stock?!") Chicken stock is super easy to make - buy a rotisserie chicken (eat the meat, save the carcass), put carcass in a pot filled to the top with water. Throw in an onion, some carrots, some celery, a little salt & vinegar. Boil for a couple of hours. It freezes great in glass jars and you know what's in it! Now I just keep a freezer bag in the freezer to save vegetables and chicken parts until I'm ready to make stock.
During the past two years, I've reached the conclusion that I just need to make all of my food. I'm sick of cooking, but it is the only way I know that I won't get sick. I dine out so infrequently anymore that I can justify spending a little more money at a really nice restaurant where I can get the level of service I need to make sure I don't get sick. The Whole Life Nutrition Cookbook is chock full of dairy, egg, and gluten free recipes that are satisfying and simple to make. Definitely worth checking out.
Last, the longer I have gone without gluten, the more other sensitivities have surfaced. It happened in this order: gluten, casein, soy (my gut hates soy!), sulfites, eggs, corn, cane sugar, and xanthan gum. It is a wonder I still eat! But, there re so many awesome foods in the world and lots of great cookbooks. The worst part was changing my habits and dealing with the learning curve. I've just resigned myself to the fact that the learning curve won't end for awhile. It sucks.
Last Sunday night I ate a kale salad with blue cheese. The next day I drank some Floradix, forgetting that one of their varieties has gluten in it. On top of that, it turns out my lipstick has wheat germ in it. Sigh.
First day of symptoms I felt like I was coming down with the flu, had a puffy face, circles under my eyes, and neuropathy in my left hand - nothing out of the ordinary for a reaction. But as the days went by my mood plummeted to a point where I was having suicidal ideation and anxiety attacks. Before I figured out my gluten intolerance/Celiac (never officially diagnosed, but might as well be considering how horribly I react), I was diagnosed with bipolar. Taking gluten out solved that problem. Anyway, I have meds left over, so I've been taking Zoloft and Ativan, which are helping. I also went to the gym and did a bunch of aerobic exercise to help with the anxiety.
Question: am I the only one who responds this badly? How long does it last?
I've been gluten-free and mostly soy and dairy free since March. I know that reactions can get worse as time goes by, but it has only been six months!
Surely I will get hit with this again and I'm scared to death. I've put a call into my shrink to work out a game plan that doesn't include checking me into a hospital.
The increased heart rate might also be due to your thyroid. When my levels are too high, my heart races and it feels just like anxiety. After my medication is adjusted, my heart rate returns to normal.
Last March, when I started to figure out my gluten intolerance, I was really skeptical that such trace amounts could actually affect anyone. But, then, I ate a kale salad with a little bit of blue cheese on top. Turns out that the mold in my blue cheese was dusted off bread. That teeny, tiny bit messed up my entire week.
Same goes for the grilled sandwich where I took off the bread (and scraped off hte bread crumbs) and the Mocha Chip Frappucino (gluten in the chips) I had last August.
So, yeah, the littlest bit can cause a reaction. I am perpetually dumbfounded by how little it takes to make invoke a reaction.
I've suspected that my depression results from ingesting gluten. Ate some blue cheese the other day and have been on a downward spiral ever since. I've already been under a lot of stress, but I think the gluten has exacerbated my emotions. I've been taking my Zoloft again just to take the edge off them; I feel so raw and catatonic. The thing I really hate about accidentally ingesting gluten is that I feel like I have to solve certain problems in my life, when it is the gluten that is blowing everything out of proportion. So my life is basically on hold until I bounce back into reality. Sheesh.
It might be worth the out of pocket expense to see a naturopath who specializes in food sensitivities and/or endocrine issues. My ND diagnosed me with Hashimoto's. I also see him to manage my extreme reaction to gluten. I like having an hour to sort out my food issues, get the blood work done that I need, and I always leave feeling heard and understood.