Feeling good!
A few months ago I was still suffering from occasional celiac symptoms. I still felt as though I was being glutened on occasion. Nothing too obvious and not too often but it was happening from time to time and I was feeling like crap any time it did. I had brain fog coming and going, often for weeks at a time, and lingering gastro symptoms. More recently though all of these nasty things seem to have left me alone. I don’t want to tempt fate by saying that everything is great and it’s always going to be from now on but over the past few months I’ve felt really good, really healthy and really free from gluten! I decided to write this post to share with you some of the things I have actively done, diet wise, which have made these lingering things go away, hopefully forever!
In the last few months I’ve felt better than ever. My brain fog is gone. I no longer have suspect toilet visits in the morning and I no longer have as many aches and pains, headaches or random body twitches. A few months ago when some of my symptoms where still lingering from time to time I actively decided to cut anything out which I wasn’t 100% sure about, gluten wise. Even if I was 99.9% sure it was out. I often wondered if lingering symptoms could be the result of some other type of allergy/intolerance but I had to rule out the fact that I was still being cross contaminated even to the smallest extent. I feel SO much better  so I thought I’d share incase you are still getting symptoms and you think it could be gluten/cross contamination related. Without gluten free labelling legislation here in the US choosing safe products is a real challenge but these are a few things I’ve cut out which have made a huge difference.
- I stopped eating anything canned/tinned
- I stopped eating tomato paste (I make my own fresh pasta/pizza sauce now)
- I eat as much Farmer’s Market produce as I can. Much grocery store produce (particularly in the US) is made on shared equipment with wheat.
- I only eat seeds and nuts I know are safe from cross contamination
- I only eat nut butters which are gluten free certified or where gluten testing has been performed. I don’t use Whole Foods ‘no gluten ingredients’ nut butters as I’ve had reactions in the past.
- I only eat snacks (candy/chips/chocolate/crackers) which are gluten free certified or made in a gluten free facility
- I don’t eat anything based on ingredients alone – I used to eat a Thai curry paste for example which consisted of only vegetables and spices but I couldn’t be sure where it was processed so it’s out!
- I only eat out at a few restaurants that I completely trust (unless I’m travelling)
- I don’t buy any Trader Joes ‘No gluten ingredients’ products
- 99% of what I eat is either fresh, produced in a gluten free facility or Certified gluten free
- I stopped using Listerine – I currently don’t use any mouthwash as I’m not sure what’s safe yet
- I checked with the manufacturer that my toothpaste is gluten free and free from cross contamination and haven’t changed it since. I use Colgate Cavity Protection.
- I don’t drink tea at coffee shops anymore – some tea contains gluten
- I only use spices which are certified gluten free
- I changed my daily multi-vitamins to ones I have confirmed to be safe. I now take Nature Made
- I keep away from any hand creams which could be gluten containing
- I don’t really wear make-up but if I did I would make sure anything I put on my lips was 100% gluten free
If you are still getting recurring symptoms could any of these things be the culprit? In my experience canned goods, nut butters, nuts and seeds, multi-vitamins, spices, toothpaste and mouthwash are just a few of the things which could be cross contaminated and in turn stopping you from healing completely. So many products, particularly in the States, are made on shared equipment or in the same factory as gluten and these products could easily be keeping you from feeling 100%.
I’d love to hear your thoughts and experiences on this topic! And yes, my husband was a genie in a past life hence his ability to jump so amazingly high!
Sasha
Aug 22nd, 2012LAURA! Wow. Way to go. So many of the things you have cut out I have experimented with cutting out, and I go back and forth. For example, the tea in coffee shops: I only use tea that comes from tea bags and I ask them to show me the label so I can examine it first.
Only Farmer’s Market produce! Wow!
Do you think this is sustainable? Do you think you can keep this up long-term?
Laura
Aug 22nd, 2012Thanks, Sasha! I definitely think it’s sustainable as long as you’re in the same spot. When I travel to other countries with different products and rules other issues will of come up but I can definitely keep it up long-term whilst here in the States. Most of it is stuff I should have been doing all along anyway.
Not drinking tea at coffee shops is the most difficult. I need to learn which brands are safe and go to places which serve those brands. 🙂
Alysa (InspiredRD)
Aug 22nd, 2012I love this post. Lately I have had lingering symptoms and realized that I need to be much more careful about what I bring into my kitchen, and what packaged products I use. I’m getting ready to do another kitchen overhaul and only eat fresh foods. Hard work, but totally worth it!
Laura
Aug 22nd, 2012It’s hard isn’t it. I think it’s a great idea to do a recon every so often to figure out if anything you are eating is suspect. It’s definitely challenging but being a safe, healthy celiac is challenging.
Richard
Aug 22nd, 2012It may be old news, but the Tennis player, Novak Djokovic, had a run of of major successes this past year becomimg #1 in the tennis world. He claimed he had changed to a gluten free diet – among other self-improvements – but never said it was the result of Celiac Sprue. That Gluten free fooods are more available is a result of increased awareness by food manufacturers that gluten free food is fashionable and there is money to be made selling less for more! “Whole Foods” asks $9.oo for a loaf of their own Bakery bread. Lady Gaga can afford that, but not everyone can! What have we learned?
Laura
Aug 22nd, 2012Interesting, Richard. I hadn’t even thought of that – manufacturers selling more for less because it’s fashionable and they think people will be willing to pay more. I would hope that more people eating gluten free would bring costs of these products down but perhaps not. In the UK diagnosed celiacs can get some gluten free food on prescription to help with costs. Perhaps this should be the case everywhere..
Kathy
Aug 24th, 2012Do you have experience with Artisana nut butters and consider them safe? If not, is there a brand you trust or do you make them yourself?
Laura
Aug 24th, 2012I had never heard of Artisana butters but just looked them up. They look safe as they are made in a completely gluten free facility. They look really good actually! Have you had any issues with them? Peanut butters I trust and eat are Santa Cruz, Peanut Butter & Co and Justin’s.
Kathy
Aug 25th, 2012I haven’t had any issues with them that I know of, other than I’m a bit too fond of both Cashew butter and the Macademia butter on my Lindt 90% chocolate! My gluten intolerance is manifest primarily as insomnia. I don’t get that from eating these, but I have ongoing trouble with awakenings. I can get back to sleep right away luckily so it’s not the same as the insomnia I suffer when I get glutened. But I was just exploring if I might be getting small doses or something. I’m glad you think they should be fine since I like them so much.
Peanuts and I don’t get along very well. I can do them in really small doses, just as perhaps a homemade Thai-type peanut sauce that’s mostly ghee, on vegetables. But I think from back when I had a leaky gut, legumes and I don’t really get along so I have to avoid peanut butter even though I love the taste of it.
Laura
Aug 25th, 2012I’ve never had cashew or macademia butter but after this I want to try it! Thanks 🙂 I see they have almond and walnut too. I bet those are great! Not many nuts butters are made in a gluten free facility which is why I’ve been sticking to the peanut butters I know to be safe so it’s great to see that these are other options.
I wish you luck with your insomnia. Interestingly I was recently reading an article linking gluten intolerance and insomnia because a friend of mine suffers badly from insomnia. I’ve read a few articles which mention a vitamin B12 deficiency as a possible cause for sleep problems. http://www.livestrong.com/article/550148-can-gluten-intolerance-cause-insomnia/
Mithat
Aug 25th, 2012I would love to hear more about what you know about gluten and tea. I don’t drink any flavored teas at all–both because I like to drink tea for the taste of *tea* and also becuase flavorings add yet another potential source of gluten. Plain camellia sinensis (green, oolong, or black) is just fine for me thank you very much.
I also will not order tea that comes in bags–again because I’ concerned the bags could be an unintended gluten vehicle (wheat paste on the seams maybe?).
Is there something more we should know?
Kathy
Aug 25th, 2012Thanks for the link. I think the link between my gluten intolerance and insomnia is more direct. My B12 was a little high. And I don’t think I have adrenal fatigue because I think my am cortisols, if anything, are too high. My insomnia went on for 15 months including through CBTI therapy & when I went on a gluten-free diet (after a cracker caused a flushing reaction) my insomnia miraculously resolved in about 2 weeks. So, I think everyone with insomnia should consider trying gluten-free before assuming it can’t be resolved because I’m suspicious it can be a direct nervous system effect similar to gluten being able to cause bipolar, ataxia, neuropathy and schizoprenia. I suspect my next thing to cut out to see if it relates to awakenings is casein. I know that’s supposed to be a common cross-reactor for folks with gluten intolerance…celiacs and others. I’m not sure if the test for it is trustworthy though.
Looks like I better do some work to see if I could be getting small exposures through teas. I didn’t know teabags could be an issue.
Laura
Aug 26th, 2012Mithat, I think you’ve got it spot on. I too don’t drink any flavoured teas. I’m not really a big fan of the taste anyway and the possibility of hidden gluten from flavourings puts me off completely.
I think wheat paste on the seams of tea bags is another possibility although some people say it’s a ‘celiac myth’ and none of the tea companies I’ve spoken with do this so it’s at least not very common practice.
When it comes to simple, black tea, some of these can still be contaminated by gluten if they are made by a company which also makes flavoured teas and there is (as always) nothing in place to separate them during manufacturing. Another possibility for cross contamination with tea is in a coffee shop where servers use the same tongs for safe tea and unsafe tea. I’ve gotten sick from Starbucks tea in the past, possibly for this reason.
Mithat and Kathy – Here is a list of a few tea makers and what their policy on gluten free is which you might find interesting and helpful. http://celiacdisease.about.com/od/Gluten-Free-Beverages/f/Is-Tea-Gluten-Free.htm
Sharon
Sep 5th, 2012Laura, I still had problems after going completely gluten-free until my physician identified another key source of inflammation: Lectins. Since starting a lectin-free diet and taking a lectin-blocking supplement, my health has begun to improve. Here area couple of online resources to learn more: http://www.krispin.com/lectin.html and http://www.marksdailyapple.com/lectins/#axzz25cbQM1Hz
Laura
Sep 6th, 2012I don’t know much about this topic, Sharon. Thanks for sharing the resources – I’ll have a read about Lectins. 😀
Else
Sep 7th, 2012Novak Djokovic is hardly gluten free. He routinely comments about eating gluten after big tournaments to celebrate. No one with a real gluten intolerance does that. Many tennis followers believe the reason for his success is doping, not a (somewhat) gluten-free diet. Gluten-light does nothing for you.
Sheila
Sep 23rd, 2012Kathy, another source for awakenings can be a change in female hormones during perimenopause or menopause. Here are just two articles of many….
http://www.livestrong.com/article/112843-sleep-disruptions-during-menopause/
http://doctorkatend.com/blog/have-you-been-waking-in-the-middle-of-the-night-since-menopause/
Laurel
Oct 5th, 2012I’m wondering about this bit “Much grocery store produce (particularly in the US) is made on shared equipment with wheat.” Are you talking about packaged produce or like the piles of apples where you pick one out?
Also did you cut these out all at once or one at a time to see what made a bigger difference?
Laura
Oct 8th, 2012Laurel, I’m talking about packaged produce. Items such as spinach in Trader Joes for example are ‘made on shared equipment with wheat.’ :-/
When I was getting recurring symptoms I did a full recon of what I was eating and removed anything I wasn’t 100% sure about. I cut out most of these things at the one time because I wanted to stop feeling crappy and foggy right away. Bringing products back slowly one at a time could be a good way to see what makes a bigger difference.
Cathy
Oct 26th, 2012I found out the hard way that skin and hair care products like soap, moisturizers, shampoos, conditioners and hair sprays frequently contain gluten. Since changing to gluten free products, I am doing much better.
Amanda
Oct 29th, 2012I always wonder about products that have “no gluten ingredients added” and have wondered if this is just another way of saying “This product is produced in a facility that uses wheat.” It definitely does not make me confident that a product is completely gluten-free, but at this point, I haven’t stopped consuming products like that. We’ll see in the future how I feel; it’s definitely something for me to think about!
Also, what spices do you use that are certified gluten-free? I’ve been using Penzey’s spices for a very long time but I don’t think they’re certified gluten-free.
Laura
Oct 29th, 2012Amanda, the brand of gluten free certified spices I use is Spicely. 🙂
Liz
Dec 9th, 2012I continued to have lingering symptoms (bloating, pain, diarrohea) and my Gastro recommended I try a low FODMAP diet to see if I was sensitive to any other foods – it definately worked!
I also noticed changing my mascara, shampoo, moisturiser etc, made a real difference to non-tummy symptoms!
Denise
Jan 6th, 2013About the tea, if the person behind the counter uses the same tongs to fetch gluten free tea and regular tea, is there a chance of cross contamination?
Laura
Jan 6th, 2013Definitely, Denise. I have a feeling this has happened to me a few times. A cup of tea isn’t worth getting glutened over. :-/
Mary M
Mar 11th, 2013Kathy mentions using 90% Lindt chocolate. Lindt chocolate is not gluten free. They use barley malt in almost all of the chocolates, and use the same lines when they are running chocolate without barley malt. I think it is important to note that since the blog post is about removing all possible sources of gluten contamination.
Laura
Mar 11th, 2013Thanks for pointing this out! 🙂 Do you not get symptoms after eating Lindt chocolate, Kathy? Most of it contains barley malt and therefore is not gluten free 🙁
Martina
Mar 11th, 2013Great post. I have to admit that I am surprised to learn how many things you were eating without being 100% sure. In Argentina, being on a gluten free diet means eating only fresh food or food with the official stamp (you know… “Sin T.A.C.C.”) Everything else is considered hazardous. Please stick to these new rules, it’s wiser!! Good luck!
Elizabeth Sagaser
Mar 16th, 2013Hi Laura,
Your blog is great! I have a question about your care in being 100% certain you are avoiding cross-contamination: Do you now avoid some of the products your earlier posts have celebrated, like Chex cereal? My 15-yr.old daughter has been extremely cautious since her diagnosis 3 years ago; she will not eat anything that was not processed in a gluten-free facility, and has not been able to trust any restaurants in 3 years–except one, once, sort of, after asking the staff many questions and talking to the owner. Almost everything she eats comes from our GF kitchen. She has an adventurous soul, and she wants to be excited about weekends in cities with family that are coming up, and about college and about travel in general, yet anxiety about avoiding gluten (and getting something yummy to eat when far from our kitchen) really interferes with her ability to get out and do a lot of things.
Do you have any advice for bringing joy back into travel and other adventures despite the kind of caution she is committed to (really, cannot help but have)? (She is also lactose-intolerant, I should mention.)
Thanks, and keep up the great work!
Elizabeth
Karin
Mar 17th, 2013Great blog! I have been gluten free for just over a year (except when gluten finds me unexpectedly). Even tho I’ve studied what has gluten and what doesn’t I’m still astounded at what I’ve missed! Thanks for your tips.
Laura
Mar 17th, 2013Thank you, Elizabeth! 🙂
To answer your question, I do still eat Chex. I’ve contacted General Mills multiple times and I am confident that their gluten free claim is genuine. I have never had problems with them.
In terms of gluten free travel, I think the main thing is to get yourself in the mind set of knowing that you aren’t going to be able to eat as freely as non-celiacs. Travelling gluten-free is about enjoying countries and cities for everything else they have to offer in terms of culture, art, people, language. You have to go into it having done your research on what and where the safe options are. Anything more is a wonderful surprise! I am an extremely careful celiac and I travel all around the world safely so hopefully your daughter will be able to do the same. I’m not sure where you live so email me if you want any advice on specific locations! 🙂
Monica
May 2nd, 2013Someone mentioned eating Lindt. Interestingly, I was going through a similar purge a couple of years ago, eliminating anything that was not 100% gluten free. I was only eating fresh ingredients and nothing packaged at all, except for Lindt chocolate, which did not have anything problematic on its label. Still I had symptoms. So I did some digging, and it turns out that in Europe, some of the Swiss chocolate paste is actually flavored with malt! Even Lindt does not promise that their products are gluten free. So, that’s one to consider if you’re still having symptoms. There are some nice alternatives to Lindt, which are labeled GF.
Catherine Steel
Jun 19th, 2013I have a friend who found he was having a gluten reaction to tea made with tea bags. After some research he found out that the tea bags he used had wheat in the glue in the seams of the tea bags.
Mary
Jun 21st, 2013This makes interesting reading. I am the mother of a now 5 year old coeliac (in the UK), diagnosed at 3 after a horrendous year of her getting so thin (with the pot belly) that her body was using up muscle. She is now doing well, but her behviour is awful when glutened, but as it’s not me I find it so hard to establish just where it comes from….I am seeing from this I need to be much stricter – only fresh food…..is tinned tomatoes really out though?! I make all my sauces but the tinned tomatoes are the base. My daughter has been complaining of tummy ache for the last few weeks – I haven’t added anything in new (that I know of)….and as it’s not me I don’t know how long the glutened feeling last for her. What about sweets and chocolate? Should i let her only have certified GF things? Any thoughts would be appreciated. I want her to have as wide and varied experience of food as possible, but to remain well too!
Laura
Jun 24th, 2013Hi Mary,
When I’m home in the UK, I eat tinned tomatoes, beans etc and I’ve never gotten sick. The same thing when I was recently travelling in New Zealand. For some reason, when I do the same in the US I sometimes get sick. I’m really not sure why. Perhaps the manufacturing processes here don’t take allergens into account as much as other countries.
My recommendation if your daughter is being glutened is to remove anything you aren’t completely sure about then reintroduce those things one at a time to figure out the culprit. I would always recommend staying with the same brands as much as you can. If you use Asda tomatoes, for example, and they don’t make her sick, stick with those. In terms of sweets and chocolates, I would probably stick to her favourites and remove anything else to see if she feels better. If she does then you can reintroduce other snacks, to again figure out what the culprit is. I hope this helps a little. It must be hard to figure out what’s glutening someone else.
Have you tried keeping a food dairy with what she eats everyday and any symptoms she has? I keep a food diary on Google Docs which really works for me as it’s easy to pinpoint what made me sick if I get symptoms.
Jill
Jul 10th, 2013Great post! Nature Made multivitamins are the best ones I’ve found too. I also take magnesium citrate every day (the brand I use is called NOW via amazon dot com) and that has helped immensely with brain fog. I still get shaky and weak from dairy, grains, oats, and buckwheat, but I’m hoping it will get better as I continue to build up my vitamin levels. My diet is just too restricted for my liking right now. I get very weak without vitamin supplements despite eating mostly fresh food and getting plenty of calories. I’ve been tracking what I eat with a web app called Cronometer which has been very helpful in making sure I’m getting enough calories/nutrients from food. I guess I’m still just having problems with malabsorption.
Karen
Jul 26th, 2013In reply to Mary in the UK, if you find that tinned tomatoes cause problems for your daughter (and that is a base for your cooking), you might try using a pressure cooker. I cook my own broths, beans and fresh tomatoes in a pressure cooker (relatively quick) and freeze them in canning jars as I don’t like to use plastic storage jars. I just make sure not to fill up the jar too full before freezing to avoid bursting. Then you know for sure where your food bases are coming from… Frozen chicken broth in little canning jars is a great start for a quick GF gravy….
Ian
Oct 6th, 2013Hi Laura,
I know your post was ages ago but I saw it on Facebook the other day and it really struck a chord with me.
I was diagnosed with CD 2 years ago and have been GFree since. My diagnosis was a long drawn affair as I had no real stomach related symptoms, I was just run down and lethargic all the time and now I realise I had brain fog too. Since starting the GF diet I never saw a step change in how I felt and have been back to the doctors to explain that I still feel crap and there must still be something lacking. I did have low Vit D which is now back to normal after taking supplements. All bloods came back OK and the doctor fobbed me off.
I suffer from mood swings as well which I liken to a women’s time of the month type moods ( as if I know ? ) but it feels chemical and there is nothing I can do about them. I’m sure this is related to me feeling zonked as well.
So I read with interest the steps you have taken to guarantee that you are sticking to 100% GF and how this has been so beneficial for you….. I bet it feels great!
I am married and have 2 kids, they all eat pretty much eat the same meals as me with G full additions if they fancy. I feel as though it’s unfair of me to be even more picky than already and expect them to cut out even more things just for me. However I do feel like time is drifting by without really feeling any different. I have started to review things I eat and have been eating and will cut out anything I can’t be sure about. I was shocked to read about the tea bags in another post here as I too had never thought this could be an issue!! I have shelved tea until I can be sure the ones I use are safe or find an alternative.
Thanks for you original post and great website…. keep up the good work !
Ian
sue
Oct 31st, 2013I’ve had CD for several years. now I have mysterious brown spots appear on my hands and wrists. they get fainter and fainter and are gone in about 2 weeks. then more arrive. do you know if this is related to CD?
Patrick
Jan 13th, 2014Hello
I love your site. I do not have Celiac Disease, but I find that I am now sensitive to gluten. I just found out I was lactose intolerant last year, so I thought it was from things related to that. But I have been buying only organic breads and I realized last night that bread is the culprit. So now I have that issue and also seem to be sensitive to sugar as well.
I realize now that I can only eat certain things and will have to relearn how to cook. I see more weight loss on the horizon! Thank you for your wonderful blog.
Soni
Jun 4th, 2014Hi, Laura —
As a newcomer to your blog, I’m joining the party late but had to post this information. I was diagnosed with CD 18 months ago after feeling like hell for 18 months. It took three misdiagnoses before a G.I. ordered an endoscopy looking for gastritis and found celiac instead. So although my diagnosis was a fluke I’m glad it happened. I immediately went gluten-free and responded favorably within weeks. My reaction to gluten is more neurological…mood swings, brain fog, raging anxiety and mild balance issues. Eighteen months into the g-free diet I feel immensely better but still seem to experience occasional lingering symptoms, particularly anxiety. When I read your post about gluten and anxiety I began to wonder if I was consuming gluten from hidden sources. At the same time I came across this post about Listerine and decided to call the company directly not ten minutes ago.
They told me over the phone that the two products I’m currently using, Listerine Advanced Arctic Mint and Listerine Whitening Anticavity Vibrant, are gluten-free. Furthermore, they’re manufactured in a dedicated gluten-free facility and/or routinely tested for gluten. I feel entirely safe using both products. So I can cross Listerine off my list and continue playing detective with my other products I’m not entirely sure of.
BTW, if you have cats, their litter, food and treats may be a possible source of gluten. I switched my cat’s litter from Swheat Scoop, which is made from wheat, to Blue Buffalo Naturally Fresh litter, which is made from walnuts and contains no grains or toxins. I figured breathing in dust from wheat couldn’t possibly be good for me. The Blue Buffalo litter claims to be dust-free but it still gives off a little dust and I wear gloves and a dust mask whenever I clean the box as an extra precaution. I also switched my cat’s food to a gluten-free variety to avoid cross-contamination from her dirty food bowls in the sink. She balks at gluten-free cat treats so I wear a plastic glove when I give them to her. I don’t react topically to gluten, but it’s just one less time I have to wash my hands. 🙂
Thanks for keeping us informed and aware without all the negativity of other celiac forums and blogs, and without scaring the daylights out of us. Managing celiac isn’t sunshine and roses, and frankly it’s inconvenient as hell, but it doesn’t have to be the end of the world, either. It’s all in the attitude. Thanks for having a positive, upbeat attitude…it’s in short supply online.
Mona Townsend
Jun 25th, 2014Just a note to mention that many of our “gluten-free” foods are not, in some cases, truly gluten-free. For example many doctors believe rice contains a form of gluten. Most of our gluten-free foods are made with rice flour. I became sick for several weeks from eating gluten-free bagels. I recently became sick from eating rice itself at a restaurant that specializes in serving gluten-free Chinese.
Tony
Feb 24th, 2015I find rice is odd. I have no problems with most rice – brown or white, rice crackers (I eat lots of those), but pudding rice gives me a blinding headache the next morning – have tried it three separate times with the same result – never again.
BRenda
May 14th, 2015ughhh I came across your site because my teeth have been bothering me and since it seems like everything is related to celiac I started checking. SO frustrating. I to felt so much better and then all of a sudden I;m having pains and wondering did I eat something s something else wrong….. ughhhh