I can put up with a lot of the celiac disease symptoms: the stomach pain, the joint pain, etc.
I can tolerate the inconvenience of our disease when it comes to food.
I can handle all of the crap that comes with celiac…except one thing.
The lack of energy.
I am so tired of being tired.
I want my energy back. I need to get my mental edge back. And not just for a couple hours here and there. I want it to last all day long. I want that feeling that I can conquer the world (because dammit…I can.)
I’ve got a business to run. I’ve got a new service that I’m trying to launch. I’ve got a family to help raise. And I have an awesome wife who deserves better than the tired sap she too often gets.
So I am reaching out to you…my faithful, beautiful, wonderful, now buttered up sufficiently, celiac community.
How do you find more energy?
Please share with me your tips and advice. I am willing to try anything and everything to get my mental clarity back.
Pills? I’ll try it.
Energy drinks? Bring em on.
Meditation? I’m game.
Illegal drugs? I’m not quite there…yet.
Thanks in advance!
Take it away Huey…
Dude-
Have you tried an integrative medical doctor (not holistic)? They may have some new solutions on other things that effect your energy, such as thyroid, etc. that a primary care physician would normally deem “within normal range”. Just a thought.
I will look into it…thanks.
Hi gluten dude,
Afew suggestions to take one at a time. Are you supplementing with magnesium at bedtime? Have you done an adrenal rebuilding program since going gluten free? Have you done a total gut detox since going gluten free to remove gluten trapped in the mucous of your gut?
Jackie Edwards, NC
The Healing Garden, Dover DE
Has your doctor done any blood tests to check your potassium and vitamin D? I also take Calcium with Magnesium and Folic acid (doctor’s recommendation). I feel a lot more energetic now since my doctor has prescribed them.
I would recommend a blood test before doing a lot of supplements.
To increase your energy, I strongly encourage you to take a good multivitamin, vitamin D3 (liquid – 10,000 iu’s a day), and sublingual B12 (2,000 mcg a day). I was always exhausted and finally a doctor checked by vitamin D and B12 – both were very low. Vitamin deficiencies are common with gluten intolerance. Google Vitamin D, you will be surprised how low Vitamin D is becoming so prevalent. It takes 10,000 iu’s of Vit. D a day just to maintain your current blood level of Vit. D. If your Vit. D is low, you will need to take more Vit. D to increase it. Good luck! (Thanks for a great website resource!)
I agree .. a good natural multivitamin and vit d.
I take revive active and 2000 iu a day.
It has made a major difference in under a well. Revive active amazing, results in 3 days.. it’s expensive.
I am also gluten and dairy free. I appear to be intollerent of dairy also.
My answer is inflammatory. (get it?)
Stop eating gluten. The gluten free foods people eat actually contain gluten. How many times have we heard people with celiac claim they are more sensitive than the standards in manufactured foods? Well guess what GlutenDude, when I asked Peter Green of Columbia about the health of his patients, he said a third got better, a third stayed the same, and a third got worse. Got a napkin for some quick math? I won’t put anymore of this on your comment section, but you’ve got my email, GD. I’ll gladly tell you how I avoid gluten and have gotten much better, have energy, and can think. Nobody else needs to hear it, but they know it.
Hi Mitch, I’m curious. What approach do you use for avoiding gluten? Whole foods only? I’m heading that way and its helping.
Cheers,
Lou
Sure, whole foods. But many whole foods are also processed. Like grains, oil, spices, coffee/tea, meat/fish/chicken, tofu etc. How did they get to the store and onto your table? Once I got a handle on these problems, things changed. There are only certain brands I’ll use, frinstance Redmond Real Salt, and I roast my own coffee which I buy out of the imported sacks. It is a terrible burden in general, and I do have a cheat when I ‘ll eat few slices of glutenfree cheese once every fortnight. The point is to recognize that glutenfree foods have gluten in them. I maddening and sucks, but works for me. It’ll also probably bring down the internet boos from people who do fine on the processed food celiac diet.
Mitch—where’s a Like button when you need one? You live our food life I see—and yes! RealSalt is the best!
Mitch, I agree that non-processed and natural foods are better for you. Any celiac who spends any time on the internet is probably aware of that. And I also agree that the proliferation of gluten free food is not necessarily a good thing. My question is – how do you find time to MAKE all these foods yourself? In this busy world we live in I think that’s something that most of us struggle with. I’m a stay-at-home mom of two kids under two, and I have a hard time cooking every single night (but I ain’t gonna eat out anymore) let alone planning our menu. I try to use mostly naturally gluten free food, but it’s not always possible and dang it, sometimes I just want a freakin’ chocolate chip cookie!
Dude, as far as getting energy back, I started feeling a lot better a couple weeks ago when I added a daily calcium and magnesium supplement. I was already taking a one a day with iron, but that alone didn’t give me the added boost. I almost don’t feel qualified to give any advice on that since I’m pretty recently diagnosed, but it’s worth noting that I have had LOTS more energy now. Good luck!
Agreed, mm. We have a repertoire of dishes and divide up the work. If you make the same things you get faster at it. I also have a freezer full of tomato sauce which we boiled down from about 50lbs of fresh tomatoes. I also only use Bertolli Extra light oil and no other fat source. I can go on and on, like only fresh spices(except for pepper which I grind from korns)that we’ll dry at home. When I make food, I make enough for left overs. When I need a cookie(Doritos is my need) I do something so gross you’ll have to guess, but I do not ingest. For starch, I’ll trust peeled potatoes, with which you can do a lot. Remember though, I’m very sensitive to gluten, so most people should ignore the madman waving his arms. But I feel good now. Bouncing off the walls good, like I’ve got a moped engine stuffed in there somewhere.
Doritos Nacho Cheese are gluten free if there was any question.
Haha! Well, you certainly have to do what works for you. Everyone’s sensitivity level is different it seems.
I usually make enough for leftovers – and they do get eaten now. Food is too expensive to waste and I’ve always had a pet peeve about that anyway. We’re planning to start a garden when the kids get older and we have more time. That will help with having the fresh fruits and veggies we need. Hopefully there will be more time then to cook lots of things (like meats) in advance as well.
I guess I should have consulted with Dr. Green instead of Dr. Fasano 5 years ago when I was losing my mind with how sick our family was eating all the GF foods! Dr. Fasano was truly stumped at what I was telling him. We too have changed our diet far away from all that stuff and it’s been quite eye opening at how much better we all feel.
I dislike Dr. Fasano as well, I feel like he has put a lot os in danger with the 20 ppm limit. I feel sick after eating most “gluten-free” food, especially certain brands like Udi’s and Enjoy Life.
As for you, Gluten Dude, just say no to the packaged food! Whole foods only, and organic whenever you can. From what I’ve seen you do not have a gluten-free kitchen, correct? Our house is entirely gluten free, it is not allowed anywhere, and my family gladly does this for my health and safety. There are so many other places they can eat gluten: work, school, birthday parties, eating out, other people’s houses…you get the picture. Even with a gluten free house they still get plenty of opportunities for gluten on a daily basis. It’s nearly impossible to avoid contamination unless your house is a safe-zone.
Love your blog, thanks for being a voice for our community!
The sickness you experience from these foods may not be due to gluten. Enjoy life foods uses a lot of fruit juice concentrates in their products, which many celiacs do not do well with. Lactose, fructose and fructans are all just some of the other IBS triggers. Some people with celiac disease also have fructose malabsorption. Others who benefit from a wheat, rye and barley free diet who do not have celiac disease may do so not because they are no longer consuming high-fructan grains (which happen to be wheat, rye and barley).
I guess you have never heard of The Fassano Diet? That is the super restrictive diet he puts the small percentage of patients that do not respond to a normal gf. He found that after a few months, all but about 1% could eat the processed gf foods again. He isn’t advocating that you eat huge amounts of gf processed crap, but people like to be able to eat bread or crackers sometimes.
Thanks for your post, Karen. It led me to this paper done by a group including Fasano, wherein individuals who weren’t improving on the GF diet were put into a whole foods type of diet. Guess what? You know what. They got better. Here’s a link to the abstract at the NIH, and if anyone is interested look at the right hand column to download the original article. The link,
http://www.ncbi.nlm.nih.gov/pubmed/23448408
(gonna write that email, GD? I don’t bite)
REally—Fasano has a whole diet now?? That’s great! I don’t think he was there yet when I consulted him, though, because he was totally stumped at what was going on with us. I do think it’s pretty rare, which obviously 1% is, that some of us don’t get better with just removing gluten. And YES—I would LOVE to be able to eat crackers and bread!!
Mitch,
Do you have a website or blog with tips, thoughts, recipes and the like? Or, can you recommend a good site(s) for stuff like that? I am totally new to all of this. Thanks. Best Wishes to All.
Anthony,
“mitch” was a drive-by troll. I doubt he will even see your question
hon.
But if you have a question , maybe we can help
Ok, thanks for the information. I have viewed your link to the forum and it looks helpful and I will give it more attention.
I want to hear it, please…
Please tell me what the food you take to ovoed gluten
Exercise is the key for me – a really hard work out four days a week keeps me golden. Not only do I get sick less, I have a tons more energy. That and coffee, of course, I do live in Seattle!
Mitch, I want that info.
One of the things that appears also to be the case in people with celiac sprue disease and non-celiac gluten sensitivity is that we are either deficient in B-complex vitamins or our bodies don’t metabolize them well. The B-complex vitamins, especially B-1, B-5, and B-6, are also the building blocks for neurotransmitters whose lack or deficiency contribute to depression – which feels a whole freaking lot like being tired. If you can tolerate bananas and nut butters, eat them together. That’s my go-to when I feel like crap. It really does work.
I also take extra B complex and C on top of my daily multivitamin. If you can get enough in food, do it that way, but I usually don’t so I take either a nature made vitamin B complex and vitamin C pill or an emergen C packet in some water (not both at the same time).
It helps me feel less tired.
I hate feeling tired/out of it. I hope you find somthing that helps you soon too!
I’m replying to my own comment because I’m finally starting to feel better.
There’s a genetic test for a common condition called MTHFR (methylfolate reductase deficiency), which means you can’t break down B vitamins properly (missing enzyme). I have a double copy, and didn’t start to feel better until adding the “brain-ready” forms of these (of course, you can also skip the test and just do the protocol).
I have to take P5P(NOT pyroxidine), methycobalamin (NOT cobalamin), and methylfolate (not folic acid or folinic acid). These are B6, B12, and folate, but special forms that are ready for the brain to use. You can think of it like lactose intolerance – people lack the enzyme, so they consume Lactaid instead (which has the enzyme lactase added). I lack the B enzymes, so I have to consume high doses of special forms.
It’s actually a pretty common mutation. If you have celiac or non-celiac gluten sensitivity, Crohns, or other digestive issues combined with this genetic issue, it’s nearly impossible to get the vitamins you need. You can end up tired, with joint pain, depressed, etc.
I have to agree with Nutrimom. Your physician may not want to treat a low level of hypothyroidism due to the chance that you may develop osteoporosis. But even a little extra (if you are on the border of ok and low) may be a huge help.
Dude, I hear, ya, bud. Vitamin D and lots of it. I currently take 3000 to 4000 mg, capsule form of D3 daily. Ditto to Claudette’s remark re. the B vitamins.
Sleep. Have you tried using a sleep app? It helped me a lot – I realized I was not sleeping as well as I need to and talked to my doctor about what I could do about it.
Also, this http://sleepyti.me/ helped me a lot. It helps you calculate a wake time that’s in between sleep cycles and you waken easier. I highly recommend it.
And when it’s really tough (i.e. on a high blood sugar night for me where I got glutened and maybe got 2 hours of sleep before work the next day) I do the 5 hour energy thing. I was skeptical from the commercials but it really does work, and I don’t have to do any insulin for it like I do with other energy drinks.
Another thing I did was cut back on the caffeine, which has helped me a lot – the caffeine tricks you into thinking you have energy when you really don’t, and you end up burning the candle at both ends, leading to a more rapid decline in energy overall.
For the rest, I’ve also been learning to simplify the amount of things I am trying to do, rely more on people on Taskrabbit, and delegate where I can, and refuse more duties more often.
I hear you loud and clear! If you find the magic concoction to combat this fatigue and even the mild depression that seems to accompany this, I would love to hear it. I have known about my celiac for 8 years and still haven’t combated the fatigue issues.
I’m not any kind of medical professional but a couple things that worked for me: a sublingual B12 supplement once a day worked wonders, also using homemade meal replacement shakes helped (in addition to regular meals). I use this recipe but replace the oat flour with coconut flour.
http://www.cookingfor20.com/2013/06/18/hacker-school-soylent-recipe/
G. Dude,
Have you had your vitamin B12 levels checked recently? Or all of your levels checked for that matter? I had the same issue a couple years ago (plus joint pain, nerve pain, random body parts falling asleep, etc.) and I had no idea what was going on since by then, I had been GF for two years. Turns out, because of my CD, I don’t absorb B12 which can cause severe fatigue plus all of the other issues I was having. I’ve been giving myself monthly B12 shots since then and most days I do feel better. I still get extremely tired sometimes (although that might be due to the fact that I have a 5,4,and 3-year old) but for the most part it does the trick helping me through the day, along with its trusty sidekick, coffee. A LOT of women are deficient in B12 and don’t even know it but I’d be willing to bet there are a number of men (especially those with gut issues to begin with) who don’t get enough as well. I hope you figure out what’s going on, as I personally know that what you are dealing with is super annoying. Love you blog and thanks for being there for us when we need you…Hope we can reciprocate and help YOU out now.
I have this too. Apparently at some point I just stopped being able to absorb B12 from food. However, I test negative for pernicious anaemia so the dr says it must be a coeliac disease thing. To start with, I had weekly injections for 6 weeks and I now have them every 3 months, although I feel like I need them more often. The dr says my levels don’t get low enough until 3 months after the previous injection, but I think they set the acceptable levels too low, as I definitely get symptoms returning after around 1 month… Anyway, it’s worth investigating if you haven’t already ruled it out.
Dude…having MS, lack of energy is a huuuuge issue for me. The way I’ve kept the MS in control, not progressing, is to follow an extremely low fat diet right? It was developed by Dr. Roy Swank in the fifties. Anyway, one thing he STRESSED, for US particularly, was that we must have, up to but not to exceed three tablespoons of quality oil a day. FOR ENERGY.
I know if I do NOT get it, i’m toast. Seriously, feels like I’m half alive. Make a pot of popcorn that you can nosh on through out the day, and use your oil that way. If you eat it all, great…if not, you at least got a bit. I drizzle olive oil on cooked veggies, but hummus, avacado, nuts, seeds etc.will work similarly.
I know folks try to keep a really lean diet, but…if you’re not getting those essential oils…you’ll feel it.
Hope this helps 🙂
I’ve been strictly GF since 2006. My energy didn’t show back up until I not only went GF, but I removed all grains from my diet. Now I can outrun my kids. I just added more non-starchy veggies, slightly increased the fat and protein since veggies are so light on calories, and kept everything else about the same.
If I cheat, my energy is gone for 2-3 days. It’s given me great motivation to not cheat anymore. It has been a big adjustment, but it’s absolutely been worth it.
Hey GD-
Totally with you on this one. I feel the same way. I feel that I am letting my employer, my daughter, my guy and myself down. My supervisor said this “Jersey, when you are here, you give 100%, I don’t care if you need to take extra time, I understand.” I like to think the same about my daughter and my guy. It sucks I get that but it could be much worse.
I crush on sugar free red bull.
Cheers-
Jersey Girl
The Paleo diet, aka Specific Carbohydrate Diet or GAPS diet, has helped immensely with return of energy. No grains, refined sugar, refined carbs or things like white potatoes. I also suggest trying out a Functional Medicine MD who understands the impact of Celiac and foods on health and energy levels. Good luck! I totally remember my sluggish zero energy days with no fondness.
1) Get a full blood work up to check for deficiencies and imbalances. I was severely low in B12 and D. Vitamins and extra sun helped immensely.
2) Use a pedometer to measure your daily activity levels. My goal is 10,000 steps and the visual tracking motivates me. I use a fitbit.
3) Look at non-food areas that are causing stress and zapping your energy. For example… On the days my job required extreme interaction and collaboration I would have no energy when I got home. I didn’t connect the dots for awhile because I assumed the lethargy was gluten related.
Good luck!
I think the Gluten Dude is one hell of a dude! You can check yourself on if your thyroid is a little low. First thing in the morning take your temperature and if it is lower than normal. Your thyroid is low! I also walk 30 minutes a day, I take liquid vitamin B12, Bee Pollen and I only drink one cup of coffee. Love you please take care of yourself!
I’m with Kelly, get your thyroid checked. Also agree with the exercise and naturally gluten free food. I hit the gym three times per week and refuel with water. I tend to avoid gluten replacement foods as I find these aren’t always a healthy fuel! I would eat close to paleo as well and actually, avoid white carbs as for some reason I really react to spuds. I go for high protein carb like bobs gluten free hot cereal for breakfast, plenty of quinoa as I can’t tolerate GF oats either. Good luck with your energy quest. #somedudeforonedude
I agree with Nutrimom. I have a wonderful doctor who has helped me with the thyroid part as well as with supplements for my deficiencies. I think that is key to regaining your health and energy.
Two thoughts on testing – Cyrex cross reactivity panel – http://www.cyrexlabs.com/cyrextestsarrays/tabid/136/default.aspx Scroll to Array 4 or give up grains and some other seeds and such completely. I had a gluten type reaction to a number of these even though I had not heard of this panel. I am extremely sensitive to gluten. I’ve brought back things like potato and sesame during this pregnancy and it hasn’t been good. Second, look at the micronutrient testing at http://www.spectracell.com. I am normally a highly energetic person and fatigue is one of the sure symptoms I’m having some sort of gluten type reaction. Remember to stay hydrated as well.
Another thing to check is blood iron levels – not often an issue for men, but with the malabsorption that comes with celiac, it’s worth checking. Heme iron is the form most easily absorbed. Vitamin C helps absorption as well. (But don’t supplement unless your blood levels are low – iron poisoning is also a possibility if you supplement when you’re not deficient!)
I also find, like so many others here, that my energy is much better when I follow the Specific Carbohydrate Diet/Paleo/etc.; when I go back to the “standard” diet, substituting GF products for typical gluten products, my energy tanks and I gain weight.
Good luck, and keep us posted!!
I had to take B12 shots before I was diagnosed and for about a year or two after. Now I take sublingual B12 which I seem to absorb, my labs are normal. I limit my carbs, even GF ones and especially GF oats. I limit caffeine to 1-2 cups in the morning and try to get 8 hours sleep a night. 3 small meals and three snacks help me keep my energy up too. Everyone is different. Keep a food and sleep diary for a few weeks and you might see some patterns. I think most celiacs fight fatigue. Rather than focus on when will it go away, focus on a continuing battle that gets easier. You do have a busy life and remember that non celiacs feel tired and stressed too! Good luck.
I’m so sorry to hear you feel like this. I know the feeling well.
There has to be something else going on that has you be this fatigued. Here are some things to get checked: viral or bacterial infections (I had Lyme for years and didn’t know it. Testing is tricky after you’ve had it for a while so you have to talk to someone who is Lyme literate), vitamin or mineral deficiency, hidden food allergies or reactions – there are 4 types of immune system reactions to food – so doing more extensive testing, there could be other things either present or missing in your diet contributing to this, adrenal fatigue, an environmental toxin in your home you’re reacting to such as a strain of mold you’re allergic to (I went through this too – not everyone reacts to every strain of mold or fungus), defects in your methylation cycle that’s causing a blockage from proper detoxing, your energy meridians could have blocks in them and you need to get either accupuncture or do some EFT tapping or Donna Eden energy work, etc. etc. There are just SO many things it could be.
While you’re sorting all this out, there are a few things I do for increased energy in a pinch: green juice – I can literally feel my cells doing a happy dance when I drink it; sublingual B12 or B12 shots for some – I avoid needles whenever possible; EFT tapping – this feels weird at first but it’s amazing stuff; sometimes eating a steak perks me right up – there are amino acids and nutrients in beef that can do wonders. If it’s adrenal fatigue – a healthy sleep pattern and lots of mineral rich celtic or Himalayan sea salt helps alot. Getting enough magnesium, and lots of fresh veggies.
Good luck! You’re getting so much great info here. What a great community.
Whole foods. Exercise. Lots of water. Hope you feel better! …and thank you for your wonderful blog!!!
You could be tired because of a sensitivity to some cross reactive food. I agree trying Paleo for a few weeks (taking out all grains) to see if that helps. I know Cyrex has a test that will test 96 cross reactive foods. Our family did this when we were going through all of the gluten testing. Any integrative physician should be familiar with Cyrex Labs.
I also agree about the B vitamins. We take them in dropper form each day (cinnamon flavor).
Good luck!
Sandi
A lot of the other comments already cover my suggestions, but I wanted to mention that I was a mess when I switched doctors just over a year ago. My former doc told me I was fine and to stop worrying so much. I knew I wasn’t fine so I found a new doc. Since then we’ve discovered my thyroid was low, I had other hormones out of whack, I was B-12 deficient, Iron deficient, Vitamin D deficient, and a whole host of other random imbalances I started taking thyroid pills, hormone replacement pills, B-12 shots and sublinguel pills, very high doses of Vitamin D supplements, and a mineral supplement. We also tested for other food sensitivities and discovered that while I thought I could eat dairy it was causing me some issues too. Now as long as I am diligent about taking all of my pills and didn’t mess up and eat something I wasn’t supposed to my energy levels are so much better than they ever were before. It was a long road to discover all of these things and for the most part we implemented change slowly, but over the course of the year I have been feeling better and better. Just keep looking for the answer. Don’t stop until you are satisfied with the way you feel.
Hey there GD, I totally empathize with you. I saw lots of the same things I thought of mentioned already but I’m just going to list everything that does come to mind based on what I’ve done and what I’ve talked with others about or read about working for others-, working with a functional medicine/orthomolecular doc, checking iron (which would actually include, % sat, iron, ferritin and TIBC), checking the function of thyroid (FT3, FT4, TgAB, TPO), checking other hormone levels (testosterone, progesterone, estrogens (yes men have some estrogen), pregnenolone), Adrenal function (24 hour saliva cortisol test), MTHFR gene mutation status which is what affects the methylation process mentioned above, (my doc is seeing a number of people with gluten disorders including CD and certain mutations), electrolyte balance, neurotransmitters balance, Vitamin D status, test for Lyme, active EBV or other infection, parasites, essential fatty acid profile, heavy metal testing, iodine levels, getting extra B and C vitamins, increasing fat intake in the diet (real fats, not processed veggie oils or hydrogenated stuff), getting enough sleep, and probably a bunch of other things I’m forgetting.
I hope you find relief.
Doing a safe and gentle anti-candida cleanse made a huge difference in my overall health but my body didn’t really start to heal until I started using high quality essential oils. They have been a godsend for me. Whenever I accidentally get glutened, I have an oil blend that I use immediately and it significantly lessens my symptoms.
The thing that really rocked my world (by reducing my gut inflammation, overall body pains and aches, and increased my energy levels) was switching to a comprehensive whole food dietary supplement that contains 9 different essential oils. Those supplements and oils have literally changed my life! Nothing has ever been able to keep me as energized and keep my digestion so… uhh… regular. 😉
I would be more than happy to send you some to try. I love sharing my oils with people!
Certain kinds of nutritional supplements help:
Red Bull, actually. It has liquid B-vitamins. Supposedly, people with celiac may have trouble ingesting or creating B-vitamins in the intestine. But, sublinqual B-vitamins can help, because they’re absorbed directly through the skin.
Also, more protein–but only the proteins which give you more energy.
Keep a food diary and see which proteins work for you. Beef, because it contains c-reactive inflammatory proteins, specifically, can make your fatigue a lot worse.
The paleo folks are going to disagree with me, but cutting red meat out of my diet was the key to reducing a lot of my fatigue.
That’s not to say that animal protein is bad: when I’m trying to get a legal appeal out the door, which means I have to be really awake, I eat tunafish sandwiches at every meal. Having a protein source that doesn’t cause inflammation and to which you are not allergic, can make all the difference. (And a food diary is the way to find that.)
Oooo! There of lots of good suggestions here. I have health issues beyond just gluten. I have an immune system that is always trying to rev up and fight things but it has no ammunition with which to fight. That leaves me really tired all the time. Plus I have constant arguments with my gut. That is exhausting too. Emergency C upsets my tummy.
The Altoids tin I carry with me…. yeah, that doesn’t actually have Altoids in it. It has sublingual B12. I pop those babies when I’m out and about and dog tired. It gets me through with a burst of energy – just enough.
I use a supplement called positive energy it’s filled with all kinds of good stuff…. American and Korean Ginseng, chicory root, bee pollen, royal jelly, ashwaganda, fo-ti, amongst other roots and a few other things. It is fantastic. I doesn’t seem legal. Made by Eco bee farms. You should try it. I bet you’ll like it. Everyone I have suggested it to that have tried it like it. Just search for it online you’ll find it. 🙂 hope your feeling better. Unfortunately I know the feeling.:(
Hello, of course, proper diet essential. I’ve been sick, but getting better for 5 weeks, have been gluten, wheat, etc….free. I finally went to doc and had full blood work up. My iron was so low, 5 years ago I would have been hospitalized, I know this as I am nurse, instead put on heavy duty, 650/day, iron supplements. Finally I’m starting to feel better. Also my vit d was as low as one can go, so put on prescription vit d meds. Exercise, no matter how little you can do is sooooo important. Start with 5 minutes. Lastly, keep yourself hydrated. I forgot to mention I have been with celiac for 5 years. There is a way for you and you will find it! I’ll be sending all my positive energy your way, kim64
Dude, do what you can and rest when you can’t do! That’s why it’s called a disease. It’s autoimune. I’m quite sure your family loves you just the way you are! Mine does…Do I wish I was big and sturdy? You bet I do! But the fact is I’m little and delicate and that’s not going to change anytime soon! Try to make peace with it. Always eat gf healthy and get regular checkups with your doctor. As you know, I’m not into alternative medicine…
I haven’t eaten anything out of a package or eaten anything at a restaurant for 15 days now and my husband just said, “Wow, you’ve been in a good mood for awhile now…. I like it!”. After getting sick for a month straight and having zero energy I had had enough! Now, I just need to keep the motivation going and not be tempted by gluten free packaged food or dinners out. Must be strong!! Tougher than it should be though…
I have to agree with getting your vitamin levels checked. If you look up symptoms related to MS, that was me. I had already checked into getting disability insurance before I went in to be diagnosed..I was THAT sure I had it. Turned out to be low vitamin D. (My B vitamin levels were okay.) I wanted to sneer at the doctor when he suggested that was my problem because I couldn’t believe having a low level of Vitamin D could make me feel that horrible. I went on 60,000 iu per week for eight weeks, but had no expectation that I would feel better.
After week three I started seeing a spike in energy the day after I took it, but then I would backslide during the week. It got where I couldn’t wait for Friday to take my magic little green pill. At the end of eight weeks most of my symptoms were gone and my levels were within normal range. I now take 2800 iu per day and have my levels tested every six months.
I’m not suggesting that this is your issue, but I do think you should explore having your vitamin levels tested. It is important not to have Vitamin D levels too high so don’t go experimenting without first being tested. If your levels are low, the OTC doses won’t be high enough to make a difference anyway.
Just my two cents..
This is a slight correction of an earlier post–I googled it. Beef causes high levels of c-reactive proteins (it doesn’t contain it.) C-reactive proteins cause inflammation and, by association, fatigue–so beef is really bad for fatigue.
Also, when I started taking Rhino Gummy Vitamins with Vitamin -D, my energy levels went way up. I’d second the folks who said you need better vitamins.
Having tried most of the suggestions mentioned by others in this post, I’ve reached the end of my rope as far as being tired and having no focus. I was diagnosed with Celiac Disease 10 years ago (finally) and as I get older (in my late 50’s), the focus/concentration refuses to improve, and seems to be worse, and if I have one long day of work, work, work, I’m unable to do anything again for 3-4 days afterwards. It can’t go on like this. I’m going to lose my job, my apartment, my mind. So, I’m going to go to a psychiatrist and get a prescription for Adderall. It’s not an illegal drug, but it’s a pharmaceutical that I’m praying will help me, because my ‘quality of life’ at this point sucks. I’m on my own, with no one but myself to rely on, so I’ve got no buffers between me and my daily life. BTW, I’m an old hippie and prefer going the natural route in most things, but I’m ready to pop the pills at this point, IF I can get them! I’ll keep you posted.
I have struggled with iron deficiency anemia, B12 Deficiency and low energy levels. I am soy and dairy intolerant as well. I focused on eating whole foods, walked religiously, faithfully administered B12 injections and took Vitamin D. I was doing everything right but did not make progress until I started practicing Qigong. I highly recommend it! 🙂 Clean living and Qigong… The effects and benefits are amazing!!
GD, I am sorry you’re feeling like this. You do so well at keeping us all connected with fanatic information and topics that you always seem so vivacious, so I was shocked to read this was from you. I first thought it was a rant or question of sorts. From what you tell us, it sounds like you keep a very safe and healthy diet so I am not sure it would be that. I have the same problem. I just went in and had all my levels checked and I look great on paper, but I am so tired, my depression nearly pulls sucks me dry and I have no ambition. If you find a solution, please share it. I am not sure if its the stress of my life causing the fatigue or if the fatigue is causing the stress in my life. All I do know is that something needs to change and fast! Good luck to GD, you’re our amazingly strong voice that so many of us look to for your caring support! I hope you find an answer…..that works.
See a functional medicine doctor – they are more holistic and run tests that mainstream medical docs don’t do. They get to the cause and don’t just treat the symptoms. It might be worth a try! You deserve better! All the best!
http://www.functionalmedicine.org/
So sorry you’re feeling poorly. Remember, CD is an autoimmune disease. Furthermore is is highly associated with other autoimmune diseases. Your fatigue may be the lingering thing after a GF diet, especially if you really did your small intestines in. However, it might be associated with another autoimmune disease that is cooking. Graves Disease is clearly associated with CD. Autoimmune hypothyroidism and rheumatoid arthritis have some associations too. I call myself the Autoimmune Train Wreck – with Graves Disease (treated), rashes, Rheumatoid, and CD. Get yourself checked out.
I couldn’t agree more!!!! The fatigue and brain fog are the worst parts of this disease! I hate that I don’t have the energy to do as many activities with my family as I used to. But it has gotten better. I found certain things that are helping me function and feel better. it’s not perfect and I still don’t feel great all the time.. but I do feel decent a good amount of the time .
There are 4 major keys for me – the right food, good sleep, supplements and water!
Food- I have to stick very closely to the Paleo and Gaps diet- if I deviate even a once in a while and say have a baked potato more than once a month- I feel like crap! There is a direct connection for me to my diet and how much energy I have. Gaps is doing wonders for me but it is very hard to stick 100% of the time- I am doing my best with it.
Sleep- being a mom of 8 kids I know sleep deprivation well..We were close friends for about 14 years when we had babies. I handled it pretty well. As long as I had strong coffee I could go on little to no sleep and feel fine. That is no longer the case.. Now, if I don’t get 7-9 hours of good sleep a night I CAN”T function l! I am walking zombie- I can’t think straight or move. I have zero energy! I don’t have babies any more but thanks to CD I have insomnia as a stalker! If I don’t take the right supplements I can’t sleep at all.I tried everything from giving up caffeine, to natural stuff like metatonin to sleeping pills- nothing worked.. Until one glorious day on a fitness website people were talking about using calcium/magnesium and zinc as a sleep aide. I tried it and it WORKS!!!! I have to use it at bedtime with a combo with a few other things for me to really get the rest I need. 1. I take higher than the dosage. The brand I use is Sundown naturals- the dosage is 3 tablets. I take 4. but you want at least 1000 mg of calcium, 400 mg of magnesium to get good results. 2. I also take Country life Liquid multi-vitamins- one capful at bedtime- it contains noni juice, aloe vera and mangosteen- these are things that help me sleep. The combination of the two supplements is the magic key for me- how it works? I don’t know..I just know that it does. I get sleepy and sleep soundly all night- I wake up feeling rested. 3. I had to reduce the amount of caffeine I was ingesting- I went from a pot of coffee a day ad several glasses of tea to 2 cups of coffee in the morning and maybe a glass of tea once in a while- and no caffeine after 4 pm. 4. when I have been glutened none of this enough to help me sleep, so I add a cup of Celestial Seasonings sleepy time vanilla tea at bedtime- it calms everything down enough for me to rest.
The next thing is supplements . I take a boat load- I don’t like the fact that I have to take so many pills to feel human but if I don’t take them I don’t feel well at all- so I take them lol. They help me feel good , I have more energy, I think clearer, my stomach is happier. and they regulate my mood so all my crazy hormones don’t make me insane lol :). I’ll list what I take daily, how much and what I take them for. Besides what I have already mentioned I take everyday
B 12 4000 mcg- for energy
D3 5000 IU- for energy and hormone regulation. I worked up slowly over a few weeks to this dose.
Vitamin C 4000- 6000 MG.. this is a high dose . it works for me.. I get sick less with colds and flu..seasonal allergies don’t affect me as badly. it clears away the brain fog and I have more energy- on a normal I take 4000 mg. when I feel run down I take 6000 mg.
Niacin 500 mg for depression- it works!
Dairy free acidophilus by American Health- I take this to help with digestion- each tablet contains 1 billion live organisms . I take 2 in the morning and 2 in the evening.
Now Brand thyroid Energy- 1 tablet with lunch and dinner .it does give me more energy over all but am taking in hopes it will get my thyroid active again so I can loose weight.
When I have been glutened I take advanced enzyme system for Rainbow Light- it reduces the symptoms quicker.
Evening primrose oil- this is a woman’s supplement. It’s my happy pill.. it keeps me from being an emotional , crying, irritable witch :).. For men Saw Palmetto is good – everything I have read calls it a man’s must have vitamin- my husband just started taking it.
WATER- I have a tendency to get dehydrated quickly.. If I don’t drink enough water I feel drained and run down.. to feel my best I need about 10-12 glasses a day. I hope some of this has helped you.
Dear GD:
There is a lot of great information here, but best of all, I feel like I am not alone. Just yesterday, someone came into my office and found me with my head on my desk! I feel like I can’t put one foot in front of the other and my brain is not working well. I’m going to flag this blog and reread the suggestions. Keep us posted on what you find works and what doesn’t work.
Oh I had a few more thoughts.. I agree with what another poster said about your home being 100% gluten free I it isn’t already. It’s is just to hard to keep the threat of cross contamination at bay. It was an easier transition for my family since it’s not just me that has to be gluten free but also 6 of the children are gluten intolerant as well. But For 2 years after I learned I had CD. My husband still ate gluten daily.. and he was bringing it in the house.. the problem was no matter how careful he was and he really really tried to be . I was getting sick every time I turned around from gluten in the house and so was our youngest daughter. Once I got sick from wiping crumbs off the dinning room table even though I scrubbed my hands afterwards. I finally told him it had to stop. I couldn’t live like this any more.. I was sick and miserable all the time. Our child was sick way to often and she was not happy. It was robbing us of our lives. Me and the kids were not safe, not even in our own home. I was afraid to go in my own kitchen or to eat in my own dinning room!!
I know it’s not fair to regulate what your spouse can eat and where but let’s face it our health is at stake here. Isn’t our health and well being more important than someone being able to have bread or cookies or donuts? This is what I said to my husband through tears. Are we not more important to you than your toast , nutty bars and ramen noodles???.. He agreed that we were more important and our home became 100% gluten free from that day on. It wasn’t until then that I truly began to feel better on a regular basis. I won’t lie. It was not easy for him to do and he wasn’t a happy camper for a little while..We had a nasty fight a few weeks later-
He was ranting about he was not happy with being forced to eat a certain way at home- he doesn’t like gluten free subs of his favorites..He couldn’t have the foods he liked and it’s not fair.. He quickly said ..I know it’s not your fault- it can’t be helped. I am just frustrated.. in return I screamed at him- THEN DON”T MAKE IT MY FAULT!!!
I didn’t choose this! It sucks!! It really does.. I HATE IT TOO and you are right IT’S NOT FAIR!! But we have no other choice and you know what – I would do it for you! He apologized for being harsh and complaining.. and he got used to it.. He realized it was necessary and that I wasn’t trying to make his life uncomfortable.. it’s no big deal now- he gets his gluten fix when he eats out, or at work. I think it is very important for your home to be a safe place for you. As celiacs we have enough anxiety and fear from being glutened everywhere we go.. we should not have this at home too.
Carol’s post above –about having blood work for other AI diseases that may be a cause for this fatigue—makes good sense to me.!!!!
Hate to be a pest, kiddo, but I am pretty sure you and I talked about this 3 months ago and I urged you to have your vitamin levels checked, along with a
CBC
C-reactive protein
CMP
and a thyroid panel done.
Also, check your D, B-12 and FOLATE(this form of anemia is often common in celiac and often overlooked on lab work)
You could simply be anemic and blood work will help uncover it.
At best, start taking certified G F B-complex vitamin (Country life makes a good one) and please, take probiotics and stop drinking for a month or so (because chronic gastritis will cause inflammation in the gut, gut pain and fatigue.) Knock down that gut inflammation and maybe it will help.
Whatever you do, please do not buy into the fake “tests” that uncover foods that “allegedly react” with gluten. Absolutely no value whatsoever and not peer-reviewed or valid.
****please note: this advice comes from my GI doctor–not just me–and I am saying this specifically for those who say that I think I am a “know-it-all” ….
and for some reason, they resent my posting valid and rational information.
🙂
I think you’re a know-it-all but in a really, really good way 🙂
Please , stop what you are doing and watch this right now
trust me, buddy 🙂
http://www.youtube.com/watch?v=OimdOiookxY&feature=youtu.be&t=1m45s3
Saw it last week. Totally hysterical. I’ve already been communicating with her and am going to do an interview with her for the site. Should be fun.
She is hilarious.
That was awesome!
Completely hysterical!!!
It’s called megaloblastic anemia. I had it when I was diagnosed. It does make you exhausted and the corners of my mouth were cracked open so bad it left scars. I get regular bloodwork done to keep it in check. Sometimes I need to get a series of B12 shots to boost my levels. I have to stay on top of that one all the time.
I love reading the input from everyone, but especially you, IrishHeart! I hate that there is so much guess work that has to be done on our parts. At the ICDS, they mentioned that the cross reactivity tests are a little bogus as they stand. It makes me mad! People so desperately want to feel better and get their hopes up when in reality they are wasting time and money. Oh how I wish we had clear follow up care standards!!! We don’t know what we don’t know and the precious time that is lost while we wait, worry and research is completely frustrating. Best of luck to you Gluten Dude! Let us know what works……but whatever route you go, make sure chocolate is still in the mix!
“At the ICDS, they mentioned that the cross reactivity tests are a little bogus as they stand.”
They are BIG bogus, hon! 🙂 They do not diagnose a thing.
Maybe L-carnitine?http://celiacdisease.about.com/od/CeliacNeuroSymptoms/a/Gluten-and-Fatigue.htm
Get some blood tests done. Check your thyroid. Just because it’s in the “normal” range doesn’t make it healthy. Get your cortisol checked. Check for cross reactivity. You could be mildly reacting to something that’s preventing full healing like quinoa or something silly like that. A good naturopathy can order these. Don’t eat anything that comes in a package or box. Maybe don’t drink for a few months. I know it sucks but it will help you heal.
I started to read the responses and none of them asked the obvious questions. They just jumped to witch doctors, voodoo dolls and blaming Celiac Disease for every woe including global warming.
So, I’m sorry if someone else has said this and I didn’t read them, I could only stomach so much nonsense.
Here’s my thought. You have had celiac Disease for a few years and have been eating extremely gluten free. Maybe it’s not Celiac that is making you tired?
I assume you have pursued the usual suspects – low hormones, bad thyroid, anemia, low vitamin levels, etc. Have you evaluated if you are really getting enough sleep? I can’t tell you how many people complain to their doctors that they are always tired. If the doc is smart, they will ask how much sleep they get. Some people only get 5 or 6 hours a night and can’t understand why they are tired.
Are you doing moderate amounts of exercise to build up your stamina? Not exercising to exhaustion. Yoga energizes me. Not crazy fast moving hot yoga, but some gentle balancing & stretching.
If you have done all of these, and they are good, and before you waste money on the pretend doctors and Internet scams, tell your medical doctor about the exhaustion. Maybe there is something else wrong with you.
Og good! I went back and read and a lot of people have some great suggestions to get started. Now…. Whoever has the voodoo doll of the Dude, please stop!
Remember the Gilligan’s Island with the voodoo dolls? Yes…I’m old.
Thanks for the input Lima. Last year, gave 18 vials of blood and then tested me for everything under the sun. Nothing stood out except the fact that I don’t have syphilis 😉
I need to read over the lab reports again and see if I can find something that maybe I missed the first time.
that was last year!!….things can change….go, do it again,. Please.
see all these wise people telling you exactly what I said too??
yes, I know you do. 🙂 just DO IT for pete’s sake
Oh! Dude! You are getting older! Things deteriorate! Thyroids that were functioning off and on are now not doing do well. Testosterone falls – no I don’t want testimony from Mrs. Dude, that isn’t all T is for.
Mrs. Dude, Does he snore? Does he snore really loud and then suddenly stop for a few seconds? Maybe he should get checked for sleep apnea if he is sleeping a good amount of hours. Maybe your mother should stop with the voodoo dolls? I know she said she likes hi cuter all these years but……
I have a neurological disease as well as celiac. The fatigue is so overwhelming! It turned out that not all of it was from the obvious things, but, I was surprised to recently discover, I actually also have sleep apnea. Could this be a possibility? A sleep study might be worth it.
One possibility for many celiacs is sleep apnea. If you google the two you will find many articles, the connection is quite common. Do you wake up tired? Do you snore? Do you have high blood pressure or blood sugar in the morning? Do feel like falling asleep during the day?
I was going to suggest this! There are other sleep disorders besides sleep apnea too, such as sleep hypopnea and restless legs syndrome. Gluten Dude, I suggest a referral to a sleep specialist for their opinion as to whether a sleep study would be a worthwhile thing for you to purse.
Another thing Dude: learn to pace yourself. It it so, so tempting to do every single thing on your to do list when you have a good/better day to make the most of it, but doing so has a hangover effect. Conversely, doing too little can drain you of what little energy you have left! It’s a delicate balance. I agree with the poster above who said to get in some exercise each day even if you feel dead and it’s only a short walk. If sleep is an issue, a 20min walk in the sun first thing in the morning can help regulate your body clock by telling your brain to wake up. No hat or sunglasses as you need the light streaming into your eyes.
Hi Dude,
You have really gotten some great advice from others so far.
I’ve been a this GF less time than you (3.5 years), and this is not supposed to be a “one size fits all approach” to fatigue, but this is what works for me:
Vitamin D, B12, folate supps in addition to a daily multivitamin
Yoga
Exercise (I run in lot so races, so baseline of about 20 mi per week of running)
Probiotic
Thyroid levels monitored and Levothyroxine adjusted as needed
Cut toxic people out of my life (took a really long time to be able to do this but it made a huge difference!)
Gluten and soy free
Dairy and grain light
Tons of vegetables
A fair amount of coffee in the morning (a little bit ashamed to admit how much)
I think that’s the bulk of it. I flip between days and nights for work so I will never get enough sleep, but doing the rest helps to keep me in balance. I feel especially tired if I don’t get enough exercise.
I hope that you feel better soon.
Jess
As an aside, I start to get hypothyroid symptoms (fatigue, feeling cold, etc) as soon as my TSH hits 2, even though it’s technically in the “normal” range.
Dude,
There’s a lot of good advice up above, thyroid, paleo, B12, I don’t have time to read them all so maybe my post will be redundant but…
Since I went GF almost 2 years ago I’ve had a lot of ups and downs. Somethings that helped me:
B12 shots once per month
Not eating inflammatory foods such as potatoes
Getting enough sleep – This one is hard because sometimes I wake up at 3:00 am and that’s it, I can’t go back to sleep. After 3 or 4 nights of this I think I am going to go insane. I can usually attribute this to something processed I ate.
Not getting too much sleep, if I sleep more than 8 hours I feel more lethargic the next day.
No MSG
Keep busy, just DO, walk, stand, work, do jumping jacks
Trying to do paleo, except I eat popcorn, kettle corn to be exact
Giving up Multi-Vitamins – yes, I found out they were making me sick so I don’t take any vitamins, instead I try to get all my vitamins naturally (except the b12 shots)
The big thing for me – No Bags, No Boxes, No Cans, No Jars. It’s hard and I can do it 80% of the time which seems to be good enough.
Good luck, I hope you feel better. You make the world a better place 🙂
Have you had your thyroid tested? I was hypo first before the celiac diagnosis. A lot of celiacs are hypothyroid.
http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Thyroid-Disease/40/
Also, have you had a full iron panel done (not just RBC but ferritin etc.)?
I eat protein 6 times per day. Once at every meal, then a little protein snack between meals, and finally, a little protein 30 minutes before bed.
I make small ground turkey patties mixed with a little sea salt, pepper, garlic, and minced onion. Fry them in a cast iron skillet, bake them at 350 for 15 minutes, or grill them! I usually make 2 pounds and freeze half.
Did you have this fatique while on the whole thirty? Just curious because for a while I felt like I had an increase in energy and then there were three days I did not want to get off the couch. Prior to celiac I never took a nap, post celiac I find myself laying around a lot and occasionaly actualy naping. I am not a fan of naps. If you find any of the above posts helpfull please report back on what helps you. In the mean time hang in there and dont let your physical lack of enery get you down emotionaly it is a bad cycle to get caught in. Your family loves you and your online celiac community feels your pain and is sending you happy thoughts. Take care.
I found a doctor who practices functional medicine (Dr. Bob Goldman at Georgia Hormones http://www.georgiahormones.com (yes he treats men too), and he turned my life around. He checks things that the average doctor overlooks. We added one low dose hormone and a couple of supplements and I noticed a huge difference within a couple of weeks. I do have my low energy days, but they are not the norm, and I blame them on cross contamination or hidden gluten because I don’t put a molecule of gluten in mouth knowingly. Check out his website. If you are in the Atlanta area, make an appointment. If not, look for someone in your area that has a similar practice. You can contact him through the website; maybe he can refer you to someone in your neck of the woods. He understands Celiac disease and its effects better than any other doctor I’ve met so far. I don’t think he grasps the gluten-free diet totally, but he reads all the literature I take him and he listens to what I tell him that I know about it. A doctor who listens – really! When I first saw him, it was all I could do to walk across a room. I felt absolutely drained all the time. Now I feel great. Well except this week and the week of April 15. It is tax season. Long hours; hard work, but I can see the light at the end of the tunnel – just hope it isn’t a train light!
Hang in their Gluten Dude. We are rooting for you!
You may have adrenal fatigue. I was diagnosed with Celiac & Adrenal Fatigue 4 months ago. My cortisol levels were low. Cortisol is produced by the adrenal gland to modulate internal stress caused by imperfect health, and external stress – caused by the world around us. If you are stressed out for too long, your adrenal glands over-produce cortisol. Then – when your body needs it for daily life, you are running low. I have improved my cortisol levels substantially just by going gluten free. However, I am still exhausted & know I need to continue working on the other elements of adrenal fatigue. Thus, I am working on getting enough sleep, de-stressing my life & exercising a moderate amount. When you have adrenal fatigue, you need 10-11 hours of sleep a night (I know – not super realistic when you work, …). I’m sure you know what gets you stressed out, so slowly try to remove or re-adjust your life to reduce the toll from those things. On exercising – you should be only working out for 30 minutes a day, but at a level that isn’t intense & may even feel barely like a work-out if you are a normally driven, goal-oriented person. Check out this site to see if this could be a possibility: http://www.adrenalfatigue.org. If so – I would highly recommend reading this book “Adrenal Fatigue: The 21st Century Stress Syndrome” by Dr. James Wilson. I hope you find your answer here or in many of the other amazing suggestions from your loyal readers. Let us know how it turns out – though it will probably be a continuing journey of exploration.
1. Do you eat oats? I know in the U.S. Oats are considered gluten free. Oats have a protein in them called Avenin, which is a bit different to the gluten in other grains but it’s close enough. Coealiac UK and Australia both recommend that Coeliacs don’t eat Oats, even ones labelled gluten free(because of the Avenin). Avenin does the same damage to some(not all) Coeliacs as the other types of gluten.
2. How much gluten free junk foods do you eat? A lot of of gluten free food is food of sugar, fat, salt and chemicals, to make it taste more “normal”. Even foods you wouldn’t normally consider junk food, if you actually read the ingredient list it’s full of artificial chemicals which really aren’t good for us.
3. This may sound crazy but even after being on a strict gluten free diet for over 3 years I still felt exhausted all the time. No Doctor could help me. After having a migraine for a week and a half I was volunteering at the Gluten Free expo and there was an acupuncturist there. I made an appointment to see him, and it was amazing, I had so much energy, and after a few appointments stopped feeling so tired all the time. I thought acupuncture was just for sore backs, but turns out they can help with lots of things. I was low in magnesium, which makes your feel tired anyway, so he prescribed some. After some appointments I had so much energy I could believe it. One week I went I had been glutened the previous week and he could tell by how my body was functioning(not well) Make sure you find a registered qualified one though.
4. Have you had your iron and other vitamin levels checked? Some GP’s here send people diagnosed with Coeliac for Iron infusions because our bodies didn’t absorb properly while we were eating gluten sometimes it takes a long time for the levels to get back to where they should be.
I’d agree about not eating oats. Or potatoes. Oats, because avenin can do a lot of intestinal damage without you knowing it.
Potatoes, because they’re nightshade vegetables, and cause inflammation in some people.
It seems like we’re throwing a lot at you. I did an elimination diet, ten years post-diagnosis, one omitted item, two months at a time. (That means I stopped eating beef for two months, and then did a challenge.) If you take out too much at once, it’s hard to identify what is happening.
I’d be interested in reading any research that says avenin in oats does as much damage as gluten does to a celiac’s intestinal villi.
Can either of you post a link? I’d be very grateful and I could share it with my doc and other celiacs who may be interested in reading about it. Thanks a lot! IH
I have read only reports to the contrary. here’s the latest:
“A new study out of Ireland comes down firmly on the “safe” side for oats.
The study, published this month in the medical journal Clinical and Experimental Immunology, tested oat consumption — about 10 ounces each week, or about the equivalent of 10 slices of oat bread — on 46 celiacs over the course of a year. The researchers kept track of symptoms reported and also performed biopsies to look for intestinal damage.
What they found backs up other research indicating that oats appear safe for the majority of people with celiac disease. In intestinal biopsies, the study subjects showed no change or, in some cases, even improvement in their intestinal villi (the tiny, finger-like projections on the inside of your small intestine that are damaged by gluten consumption in celiac disease).
The study subjects also reported no adverse symptoms from their oat consumption, according to the researchers. Finally, celiac blood tests on those people showed no increases in the antibody levels that would indicate ongoing intestinal damage due to the oats.
“To conclude, this study reaffirms the lack of oats immunogenicity and toxicity to celiac patients,” the authors wrote. “It also suggests that the antigenic stimulus caused by wheat exposure differs fundamentally from that caused by oats.”
http://celiacdisease.about.com/b/2013/03/02/study-oat-consumption-doesnt-lead-to-celiac-related-damage.htm
Irish I don’t have any research on oats…but they don’t agree with me. I sure wish they did. If you do find any info I’d sure like yo read it too 🙂
Peace,
Denise
IrishHeart, it sounds like you are familiar with recent research on celiac. Have you looked into the SCD Lifestyle site and the research they cite? They are saying that gut inflammation persists in CD more often than not and cite specific studies that support their ideas. I’m not familiar enough with the literature to know whether to accept it.
But my experience is that a GF diet has not been enough to get rid of some of my immune system issues. Even the Whole30 anti-inflammation diet wasn’t enough. But getting rid of a couple of starchy foods on their ‘illegal’ list made a big difference.
Bill.
If you find the SCD works for you, then that’s the answer for you.:)
Anytime I try to offer research or information lately, I am slammed for it, so I am reluctant to say anything at all. LOL
IMHO, the SCD article you link to–is nothing more than alarmist rhetoric designed to scare celiacs into thinking they will never heal. That’s just not the way I view living with celiac. I think people need to figure out what else may be a problem, whether it is food-related, autoimmune- related or just plain continued low-level gluten CC they may not have considered. .
A really good book is Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.
An excellent source is The University Of Chicago Celiac Disease center. They even answer questions if you email them.
Too much speculation, theories. myths and bad info circulates on the internet. When some of us try to squelch it, we are bashed. It gets old.
Celiacs are not doomed to live a life of ill health after diagnosis.
There may be complications, sure…. but no one should be dragging their asses around years after going GF.
SOMETHING is causing that –it’s not always about gluten and celiac.
thyroid, adrenal dysfunction, anemia, these are real possibilities.
From the research I have read, some celiacs have other food intolerances in addition to gluten (soy, dairy, MSG, corn, tomatoes for example) that may well cause continuing symptoms like fatigue and gut pain because the gut is still impaired. Or maybe they lack certain enzymes that aid in controlling histamine regulation in the body. Or maybe they can’t drink alcohol or coffee because it causes chronic gastritis.
I follow a low-histamine diet and all the symptoms that still plagued me —long after going GF–are resolving. I did a lot of homework to figure that out, and my GI doc was really surprised when I brought it up to him, but agreed wholeheartedly that it was my problem.
How did I figure it out? By doing a whole-30, Paleo type diet –and I ate too much spinach, eggplant, tomatoes, etc. and things got worse!
So sometimes, even a “whole foods diet” is not the answer for everyone. Sometimes, people do better with grains and dairy.
Best wishes to you, Bill.
IH,
You are seriously one of the best resources for people with Celiac Disease in the entire world of the Internet. Thank you so much for sharing your information and experiences with all of us!
Jess
omygosh Jess, I am truly humbled to read this–because I think YOU are
so generous to share your medical wisdom and your own unique journey with celiac on your blog and on here.
Thanks for being such a vocal advocate.
All the best to you!
.
This is the stuff that says oats are going to make you sick if you have celiac.
Helene Arentz-Hansen1, Burkhard Fleckenstein1,2, Øyvind Molberg1, Helge Scott3, Frits Koning4, Gunther Jung5, Peter Roepstorff2, Knut E. A. Lundin1,6, Ludvig M. Sollid1*, The Molecular Basis for Oat Intolerance in Patients with Celiac Disease, PLoS Medicine | http://www.plosmedicine.org, October 2004 | Volume 1 | Issue
Also,
http://www.csaceliacs.org/oatintolerance.php
and
http://www.celiac.com/articles/840/1/Oats-Intolerance-in-Celiac-Disease/Page1.html
and
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC523841/
and more specifically, the “Oat Controversy” section of this:
http://en.wikipedia.org/wiki/Gluten_sensitivity
which says you should get a biopsy after eating oats for awhile to make sure they’re not making you sick.
However, as with all of these things, your mileage may vary.
I have a theory, that anyone whose celiac came from the Irish version of the celiac genes–can eat oats. (They argue with me, a lot. =0))
For several centuries, the British used Ireland as their breadbasket, and took everything, except oats and potatoes. So, historically, if you’re Irish, it’s almost like the British Empire did a breeding experiment to create Irish celiacs who can eat oats.
(I’m fairly certain my celiac came through an Argentinian ancestor, which might explain why I can’t eat oats.)
The first two links do not go to any articles abut oats (sorry, I couldn’t find anything there) and the third article(dated from 2004) states
Celiac.com 10/28/2004 – “The obvious problem with this study is that it is so small—only nine people. It does, however, bring up valid concerns about the safety of oats for all celiacs. There may exist a sub-set of celiacs who also have avenin-reactive mucosal T-cells, avenin being the oat counterpart to wheats gliadin.”
“there may exist”
The 4th and 5th state the same conclusion (same basic article).
Please note this ONE STUDY is from 2004 and more studies have been done.
A more recent view of oats is:
Celiac Disease Center at Columbia University
The proteins of oats are not toxic to individuals with celiac disease. There are multiple studies from both Europe and the USA demonstrating the safety of oats for patients with celiac disease and dermatitis herpetiformis…The only concern with oats is whether they are contaminated with wheat, barley or rye. Patients with celiac disease attending the Celiac Disease Center at Columbia University are advised that they can consume oats.
Celiac Center at Beth Israel Deaconess Medical Center
Based on numerous studies conducted with adults and children in Europe and the United States, it appears that the majority of individuals with celiac disease can tolerate oats….Close monitoring by a healthcare professional experienced in celiac disease is recommended during introduction of oats into a gluten free diet….
There are others, but the only celiac org. that disagrees with this stand is CSA.
As for your interesting theory about the Irish celiac population and what you* think* may be the reason” they all can eat oats”…well, I simply do not know what to say to that…
I think your point that some celiacs cannot tolerate oats is true, but
the more recent literature says it’s not a danger when they are certified GF and eaten in moderation
Thanks for taking the time to post. I appreciate it. 🙂
Cheers!
Check out leaky gut theory and have your gut flora analyzed. Cut out inflammatory offending foods (dairy). Avoid fluoride. Most blood tests show levels in the blood not at the cellular level (B12), and certain tests only test for synthetic forms, such as folic acid and cyanB12. Bodies need bioavailable forms, such as methyl-folate and methyl-B12. Spit for 23andme.com to obtain your genetic SNPs, and learn about methylation issues (see Dr. Amy Yasko) to address certain SNPs. Addressing methylation has been HUGE for my kids’ and my recovery. Breakdown in methylation leads to elevated homocystein which leads to trouble (cancer). Lyme, test for lyme. Check out Stop the Thyroid Madness website for current thyroid information (and make sure to be tested for Free T3 and Reverse T3). Find an integrative professional that treats you not only from lab results but the entire clinical picture.
I agree with those suggesting you check into the thyroid. I went through a six month period last year of extreme exhaustion, and
having read that many people with celiac also have thyroid issues, I asked my gastroenterologist about it. She flipped through my file and noted that when she had tested my thyroid function five years earlier it was outside the normal range. She just never bothered to tell me and do anything about it. Eventually I got to see an endocrinologist who confirmed I had Hashimotos hypothyroidism. After two weeks on the hormone pills I felt like new woman! It was like night and day. My story also confirms what we already know – never rely on your doctor. You have to do your own research (of credible sources of course) and advocate for yourself. Without of course coming across as a crazy hypochondriac who thinks they have every disease they read about on the Internet!
Else,
I have a friend who calls this behavior “Munchhaussen by internet”
I am afraid it is epidemic.
Some people may actually be more sensitive than you, IrishHeart…
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/?report=reader
well, Mitch, I was replying to Else regarding people who assume they have every disease in the world because they read too much on the internet. I was not talking about “sensitivity”
Actually, I am very sensitive to trace gluten and develop symptoms that are very unpleasant.
I have read that study before and mentioned it on GD’s site a while back. The conclusion of the study is the same as many of us celiacs often recommend to others….eat a whole foods diet for 6 months before introducing any GF packaged foods.
I’ve only been reading this site for a short time, but I consistently hear you tearing down people who say they’re having symptoms despite the diet. Now you’re going Munchausen, which is the kind of name calling that Celiacs have had to tolerate from the uninformed medical community and civilians alike. Please try to listen for how your comments sound to others, and I will apologize right now to you for getting in your face. Sorry also to GD.
I think she was responding to this part of the post not calling Celiacs Munchhausen patients. However, I have seen a few that just seem to want to have everything that could be wrong.
” Without of course coming across as a crazy hypochondriac who thinks they have every disease they read about on the Internet!”
Mitch,
First of all, I was talking to Else, in response to her comment that some people think they have “everything under the sun” because they read too many things on the internet. It has nothing to do with celiacs or celiac disease in general. Not sure where you are getting that from. It was a humorous comment and was not directed at anyone at all.
Did I say anything at all about celiacs who are not getting well? nope.
READ what she said and what I said in response. There’s no need for you to misinterpret me or put words in my mouth. Thanks.
You do not know me very well at all. I have never “torn down anyone”. Never. I have never dismissed anyone’s symptoms. I have suggested other possible reasons for why they may continue to have symptoms.
Just like many other contributors do on here! .Like anything I say, feel free to take it or leave it.
I have spent the last 2.5 years helping people who cannot get help from doctors. I have hand-walked people right into my GI doctor after they were scoffed at by their own. So don’t tell me I do not have sympathy for people. I spend hours working with people on a daily basis. But you do not know that because I do not make a big deal out of it, nor do I wear my celiac like an albatross around my neck. I just live my life and try to help other celiacs live theirs too.
And if you would take the time to read my story, you would know that I was one of those people you say are not understood by doctors.
My nightmare lasted over 25 years. Undiagnosed celiac almost killed me, so do not even got there with me on that one.
Read ALL of my posts please before judging me and my motives.
I am grateful to you for your clarification. I hope then to continue to enjoy reading your comments.
Trust me, we’re both quite pushy.
well, I would not call myself “pushy” Mitch.
That word has a bad connotation, IMHO.
(although I have been called worse)
But if I “push back” I hope you can understand why. 🙂
I call myself an advocate.
To clarify my own comment: I was trying to be funny and was actually making fun of myself, not others. As in, “just because I have a headache doesn’t mean I have a brain tumour, even if the Internet tells me that its a symptom”.
I guess I’ll stick to my day job from now on and quit any attempts at humour because I’m clearly not very good at the delivery…… 🙂
Oh, your delivery was fine!!. I got it. 🙂
Just because someone misreads something and gets all upset and jumps to the wrong conclusion, that should not prevent you from posting your thoughts, Else. I have not seen you in a while and I was happy to see you posting!!! Hope all’s well with you! IH
IH,
I have consistently been reading this blog for about two years. I remember being at my parents house for some holiday and feeling so lonely in the middle of a big happy loving family and sneaking away to the bedroom to read this blog because it always made and still makes me smile and like I have found my people.
I have never seen you tear down anyone. I have seen you sort facts into the correct categories.
You kept me from losing it every time I thought ” I will never get better”. I probably have over 200 journal pages that begin with ” another day of healing…” You and GD both continue to give me confidence to help others on this journey and you are always always ready to help me find the most accurate info out there.
Thank you for also talking me off the ledge every time I go to the doctor and fear the latest results.
You have a good heart, my friend and I appreciate you more than you will ever know.
GD. Thank you for continuing this blog. I am stronger and healthier because of you and this community you have brought together. This is a happy and peaceful place for me. Very special.
thanks, dear Camille. <3
I appreciate our growing friendship, too and am happy that anything I may have said has been of help to you. You're a sweetheart!
Many people helped me when I was first diagnosed and the best thing any celiac can do for another is to pay it forward.
love ya.
Irish, I’ve been visiting this website for the better part of 8 months
and I have never found you anything but supportive when you have information to pass on. You can be full of righteous indignation (totally justified) but always empathetic.
As it’s Thanksgiving “up” here in Canada, thanks for the info and the laughs ‘cos we love the laughs!
Hey there, Sue!
Laughter cures almost anything. If we lose our senses of humor, we’re doomed. (and grouchy and lash out at people)
Thank you for the supportive comment.
I appreciate it more than you may know.
Happy Thanksgiving!! . 🙂
I reserve the right to call myself pushy.
Go Paleo. Remove all grains, legumes and refined sugars from your diet – these are all sources of inflammation, which in turn causes fatigue, as well as anti-nutrient. Supplement your omega-3 and vitamin d intake.
Have you looked into adrenal exhaustion? I recently took my son to a naturopath in Quakertown, PA who deal s with this. His name is Dr. Andrew Neville at the Clymer Healing Center. No one has been able to help my son and give me an explanation to some of his symptoms but adrenal exhaustion fits. Check out their website. We only just started working with him so I can;t say yet if anything has helped but I feel like I’m in the right place. Good luck!
Hi Sue in Alberta, Happy Thanksgiving! I am in Ontario and will be enjoying a wonderful brunch today with my family. It is my hope I do not run into hidden gluten. I am very careful and will stick to the basics but sometimes, the gluten sneaks in just the same.
Right back atcha, Helen! It can be done, so you enjoy your celebration meal. Hopefully, it’s with people you enjoy as well.
I need B12 supplements – without them my energy drops. Agree about first making sure you get tested for all vit levels, folate, iron, thyroid, etc. Last year is too long ago – you should be doing this every year, at least, if you’re still not feeling well.
That might help, but now for the real problem. I’m another more-sensitive than average celiac, and soy gets me as much as gluten. Have you looked into soy? It’s quite evil for us. I can actually eat Udi’s and a few other gluten-free products as long as they come from gluten-free faciltiies, but otherwise I stick with mainly fresh meats (often pasture-fed) and organic (or peeled) fruits and vegs. I haven’t ventured into legumes yet after experiencing problems with peanuts (cc with soy?), but hope to soon. I can’t do coffee, but Twinings Tea has been fine for me. Wine and cider is ok too, but I would stay away from any gf-beers that don’t come from a gf-facility.
The *massive* eye-opener for me was eggs. After almost three years of struggling, and many many days of not feeling well and yes, being exhausted, without knowing why while I was sticking to my restrictive diet, I finally figured out that eggs that are fed a diet of soy/gluten *sometimes* caused me to react. After I switched to a local farm that feeds their chicken soy/gluten free feed (mainly pastured) it has been a night and day difference. FINALLY, for the first time in three years I am consistently well. I have only had two reactions since early summer when I switched and both time I know what I did (wrong ketchup brand, conventional uncovered raspberries). I’m not sure what I will do when the farmer’s market shuts down for winter, but at least now I know! Fassano’s diet in the super-sensitive study allowed for eggs – I wonder if the percentage who did not improve could have benefited from a closer look at this.
Hi MJ, is your reaction to soy consistent with how gluten affects you? I’ll only eat one brand of tofu, House Foods, because I think I once reacted to another. I know, it sounds like fun.
I just spent the morning reading everyone’s post. I burst out laughing a few times. Here is what stuck in my mind, whatever is left of it. The standup comic video. Mitch saying he reserves the right to call himself pushy. IH telling you to get those blood tests. A bunch of people not realizing that you have done the whole foods regime more than once. Checking for sleep apnea. Taking what I think would break my bank in supplements, esp. here in Hawaii. IH having the most comprehensive knowledge of our disease and being misunderstood by someone all of the time. (I do think Mitch was trying to smooth things over.) It is Thanksgiving in Canada. Happy Thanksgiving! B12 was mentioned in a majority of the posts. And last but not least, a comradery that exits on a level that should make you proud. You gave us a place to come to, thanks GD.
For me, feeling “off” most of the time; I am going to see an endocrinologist. I am hypothyroid thanks to years of being undiagnosed. My numbers look “normal.” I am on levothyroxine, but I can’t loose weight and I just feel that something is wrong on the cellular level. Does that make sense? If I say that to the dr. they’ll probably think I’m nuts. However, I was taking an iodine supplement for the thyroid b/c iodine level was low and then the iodine level shot up to over 400, (to about 152 is normal) my dr. could not explain, and told me not to take it. That is another reason to go to an endocrinologist why is my body storing the iodine? liver problem maybe? Which can make one extremely fatigued.
GD, all those tests you had last year was for the same problem, correct? The exhaustion, and everything looked normal. My two cents, I would have every test known to man and woman for the thyroid and the liver.
Can you talk to Mrs. Dude and you guys go on another vacation? Just get away from it all for a week or two? Stress could be a factor?
Sending Aloha to you, GD!
Thanks AJ, for indicating that GD had done a whole food regimen last year. I took a look at what was on the menu. I saw lots of gluten. Cheatin’ is cheatin,’ ask any woman.
(banned? am I banned?)
[you can let yourself out, mitch]
What makes you think the dude cheats on his gf diet and eats gluten? Obviously you haven’t been reading on here for long. Or just have a mean streak and want to fight?
Not a mean streak. But I saw processed meats. canned coconut. bagged cauliflour. GD said he had Starbucks coffee. Many meats are not so clean as you may think, because of the industrial processes that get them onto the shelf. Why is sashimi so pure?
I’m trying to make the point that there’s lots of occult gluten in the food supply, and eating whole foods doesn’t take care of it. It’s words. Gluten Free doesn’t mean no gluten. You may like to check out Horizon dairy’s FAQ page where they aver that there’s no such thing as pure. The link, http://www.horizondairy.com/faqs/
(feel free to give me the push, now. I won’t fight here. I’m fighting well enough elsewhere.)
I am with you Lima Bean. Since I mentioned in my thread “good ‘ole Mitch,” (say that like Seinfeld is saying, “Hello Newman”), I feel the need to respond. What kind of 21person tries to find reasons to dis-credit someone who is ill and trying to find ways to feel better? I mention GD doing the whole 30 plan and you think he cheated? That is utterly ridiculous. We are all here thanks to GD, so that we can vent, gain knowledge about our disease and share stories. Accusing him of cheating, (and you sound like a naughty 2 year old) makes no sense whatsoever. GD has been open and honest, there is no reason for your nonsense. I was wrong in my assumption of you. You obviously have bounced onto the wrong sight.
should read “What kind of person” don’t know where the 21 came from.
I think I have seen this Mitch goblin on other sites. (I thought ” goblin” was more season appropriate :). )
Yeah all I could think reading his posts was Troll Troll Troll.
More places than that
Maybe the Dude could have a discussion about trolls/ goblins. The psychology of why a person likes to go on various established forum communities and argue and be rude, etc is fascinating. I know it isn’t directly related to Celiac but it does seem to affect us.
For instance, why do people like this go on different disease sites and want to confuse sick people? Or leave nasty comments on an obit of a child that dies of cancer? Maybe Mitch could guest write it and explain?
“Or leave nasty comments on an obit of a child that dies of cancer?”
GFY, Karen
Sorry, GD
correction, LimaBean, GFY twice
sorry, Karen
I can’t blame the Tito’s
First of all…my gosh, THANKS TONS to everyone for your input. Holy moly…I love this community. I’ll chime in to some of the comments in the next 24 hours.
But MitchW…what the hell are you talking about?? Cheating? I cheat on my gfree diet?? You can disagree with me on my blog all you want, but don’t ever accuse me of cheating…that is total utter bullshit.
I have Starbucks coffee and that means I’m cheating?
Proof. Show me some goddamned proof that I should not be having coffee. Not speculation. Not fear-mongering. Show me proof.
I feel like shit. I’m exhausted. I wrecked my back this morning. I don’t need your bullshit accusing me of cheating.
Sorry everyone.
Starbucks claims they are GF, just like the others do. But I react to it as does a family member. Did you have daily with it? Beyond Starbucks, I looked at what you were eating on your whole food month, and you weren’t gluten free. Healthier yes. But you know very well that the GF standard does not mean no gluten. Go read the FDA final ruling on GF and you will see that they selected 20ppm because it was a practical way to help most celiacs. They received many comments that people were actually more sensitive. You might have the time to listen to the online seminar at NFCA where they explain the FDA’s final rule; the nurtritionist goes into the question about setting the standard at 20ppm. That Fear Mongerer. You may be one of the more sensitive people, but if you keep eating gluten you’re going to keep being sick. I don’t need to remind you what Prof. Green said to me, but I’ll tell you that his former nutritionist who now works for Schar(she may have moved on) said in a public forum last year that she worried about celiacs who are the GF foods mostly, because they were risking going over their daily tolerance for gluten.
As far as accusing you of cheating, yeah that came on too strong(I cheat too), but you were eating gluten. Why do you think that coffee has no gluten when every other processed food has it, if in small amounts? You want to call it fear mongering? Here’s some relief; Diet Coke is fine for me. No reaction. I’m very sensitive, so I roast my own coffee, and it works for me. Black+Equal. No thank you to store bought. If you think I’m fear mongering, you control this site. Take down my posts.
And I’m sorry about your back, and that you feel terrible. I also felt like a dog’s mess until I just said, enough.
You want to continue this convo elsewhere, I’m good, GD
mw
correction
Do you have dairy with it?
I think trying to scare people with all this misinformation about every food containing gluten and some nonsense that flour can make damp things flow, is really awful. I really want to why you think this type of stuff is fun?
Where is your proof? Where is the common sense? How would wheat, which is not grown in the same conditions as coffee nor processed in the same factories, be in coffee. Or is it all a big conspiracy to keep the Celiacs down and sick?
please refer to my last reply to you Lima Bean
Mitch…because YOU don’t feel well after drinking coffee, you assume then it’s not gluten-free? Spread your fear somewhere else my friend.
Nobody else is interested, GD. Think for yourself.
That is all.
What the heck Mitch??.. coconut milk, coffee and bagged cauliflower have gluten?? I think not!!!.. that is hog wash! I know they don’t .. how do I know? Cause I ingest these things on a regular basis especially canned coconut milk- I drink it everyday in my coffee- yes coffee bought from the store. I am extremely beyond extremely sensitive and reactive to even the tiniest trace of gluten-if those things you mentioned had any gluten I would be sick constantly!
then drink coconut milk, if you feel well, Paula. Personally, I don’t eat anything out of a can, except Coke. Is Coke food? But you know that gluten is used in packaging because it’s a flow agent. I’ll have BirdsEye peas and corn. But my point stands, I believe: food makers aren’t making gluten pure foods. Look at the FDA ruling-food makers don’t even have to test, and that includes vitamins and supplements, which are regulated as foods. FDA will respond to complaints.
Hey, it’s almost time for the kickoff.
diet coke. the last real coke was sometime last summer.
Tito’s talking
I read through about 2/3 of the comments, and saw some great suggestions. I’ll be hitting the 2 year mark of being GF at the end of this month, and it’s only in maybe the last 9 months that I feel like I’ve gotten a handle on it, and I’m feeling pretty good most days. Now if only my downstairs neighbors didn’t keep waking me up, but that’s another story.
One thing I figured out early on was that supplements with maltodextrin made me tired, and it leaves out the ability to take most supplements on the market. It turns out that maltodextrin wasn’t the only thing that made me tired (besides gluten, of course); and I discovered I had to avoid sulfites. That means most pre-packaged GF foods are off-limits, since most contain starches (most of which are sulfited) and/or corn syrup.
It’s still a work in progress for me, but I wanted to throw the possibility of sulfite sensitivity into the mix, since they really make me tired.
Dude, the bottom line is that something is wrong other than gluten. We Celiacs tend to get so used to feeling crappy that we no longer remember what “normal” feels like. Don’t let this become your new normal.
If I wasn’t so used to thinking Celiac was the sole cause of all my issues, I would have found out my gallbladder wasn’t working before a stone lodged in my bile duct and almost killed me. I would have found out my body was depleted of Vitamin D before I got to the point of hardly being able to stand for more than 10 minutes, having every muscle constantly ache and cramp, and having a constant feeling that my ribcage was being squeezed. “Normal” people pick up on things quicker because they don’t expect to feel bad. We tend to take it as just another day in a Celiac’s life and take the crappy days with a grain of gluten-free salt.
I know you don’t want to hop back on the medical hamster wheel and undergo tests that will probably just reiterate how great “you look on paper”. I get it! It’s time though. Life is much too short to watch it pass by from the sidelines.
yes, yes, and yes…..listen to this woman! 🙂
As I keep saying, anyone who is dragging his/her ass around 5,6 or 7 years after DX –it’s hardly a “gluten” issue.
(and I know you do not cheat and I know your diet is very clean!.)
Also, I always cringe when I hear fellow celiacs say things like “I have celiac so I am supposed to feel like crap”. No, you shouldn’t–not after diagnosis, adhering to a GF diet, ruling out OTHER HEALTH issues that may arise by getting proper follow up care. You should feel better.
Proper follow-up care means getting your dragging ass into the doctor’s office for a yearly check-up.
Hey GD. Fatigue is the worst!! It feels like it will never go away and it’s so frustrating because you can’t even manage to do the things you normally could do.
I don’t have much experience with celiac because I’ve only been diagnosed for over a year now but I’ve suffered a lot with fatigue and still get spells now and then. I started taking an iron supplement for a while and that seemed to help. But the dosage was too strong and didn’t agree with me so I started eating more green leafy vegetables and iron rich foods instead. That definitely worked!! I also realised I had to change my diet. My system keeps fluctuating and sometimes I have to include more fats in my diet and sometimes more carbs. My diet is constantly changing and once I’ve figured out what works I feel much better.
I also recommend lots of sleep and some moderate exercise. Sometimes your body just needs to rest and we fight that urge because we can’t sit still for longer than a minute. Listen to your body and keep trying to adjust your diet to see what works for you. Smaller meals more often throughout the day keep me going as well.
Hope you feel better and this passes soon :).
You said you’d try some pills? Well my best find for improving energy levels was Dr. Wise’s Gluten Sensitivity Formula. Even if you don’t plan on eating gluten again, it might be worth a try. 🙂
Laughing so hard I almost fell out of my seat!
I almost spit my Coke out on the keyboard. Still laughing….:)
You have got some serious nads my friend. I’m leaving your comment up simply for comic relief.
It did make me laugh out loud!! 🙂
omg..:)
I cannot believe that IM, aka ICM is still flogging this ridiculous
dead horse a year later.
This is why NO ONE takes your whining about your “I got glutened at university experience” seriously. Get it?
LMAO.
You have a little pet troll! So cute! You should get him a collar and one of those ID tags. That way, if he gets lost on another forum, he can be returned to you. Lol
Hey there would you mind letting me know which hosting company you’re utilizing?
I’ve loaded your blog in 3 completely different internet
browsers and I must say this blog loads a lot faster then most.
Can you recommend a good web hosting provider at a reasonable price?
Thanks a lot, I appreciate it!
I totally can related Gluten Free Guy – I’ve been gluten free for since fall of 2009. I did improve after going GF – but in the last few yrs I have gotten really ill – trips to specialist no answers or told my test results aren’t bad enough – even though my symptoms are severe. I have some endocrine system issues as well as some other auto-immune syndrome. I believe Celiac can be related to a number of other health issues either a cause or at least a common denominator. Thanks to everyone out there with the tips – do some of them already but will be looking at some of the others. The more I read and research the more I’m sure diet plays a part (not enough for me to go GF need to cut all grain and then maybe even more) I am working on cutting out all cross reactants – going to do the elimination diet. Cause I cant live like this, barely living really. A lady had posted something about worried about losing her job I sooooo can relate I am currently in hot water for missing so much work, but I’m just so exhausted and feel weak more often then not. I’m going to ask for a bunch more test – problem being as someone else already posted the normal range is not always normal for everyone and my test results keep changing!! F*#$ing Frustrated is an understatement!
But I’m glad to have found this blog – been following for awhile just never commented till now.
Good day! I simply wish to offer you a huge thumbs up for the excellent information you have here on
this post. I am coming back to your blog for more soon.
I’m glad I found your blog – I had an endoscopy to look for celiac today.
As far as fatigue is concerned, t is certainly possible to have a separate health issue that’s causing problems that mimic celiac. I’m not doubting your celiac diagnosis – simply saying that sometimes there can be an extra issue that needs treatment.
Some things that have helped me:
1) A dietician is super helpful for making sure you have all the vitamins, minerals, and protein you need (most doctors are NOT trained in this, or barely trained).
2) Blood sugar issues can cause constant fatigue (I have a pancreas issue where I make too much insulin, which is how I know). A lot of gluten free foods are very high glycemic, meaning that they jack up your blood sugar rapidly (leading to high sugar, which makes you tired) and then causes a crash (also causing fatigue, brain fog). Even if a person doesn’t have a blood sugar disorder, dietary choices can make you exhausted (high carbohydrate portions, type of carbohydrate, exercising without eating, or skipping meals). Many people don’t do well with the three-meal-a-day model.
3) Also worth considering sleep disorders (especially, if you snore or kick a lot in your sleep, if you feel excessively sleepy during the day, or if you have high blood pressure or diabetes). I had untreated sleep apnea for years, which makes you foggy and exhausted. It can be as insidious as celiac, because the symptoms mimic “stress” so well.
Good luck. I’m rooting for you.
Although I do not have celiac disease, I began using nutritional supplements from Melaleuca about two years ago. My energy level is crazy! Recently I broke my collarbone, and it has healed in 1/2 the time suggested by my Dr. I truly believe the patented delivery system of these supplements expedited my healing. Maybe it would make a difference for you. Check out this environmentally responsible company that offers better, safer products for homes and family, including numerous gluten-free offerings. Melaleuca.com/ps. It’ has an A+ rating with the BBB. Contact me for more information. I hope you find your answer to a better quality of life!
Get your ferritin iron levels checked, to high makes you tired and sick
triple numbers is bad over 200 parts, 20-80 is good
http://hollyandrews.le-vel.com/
GF! 8 years and not by choice. Suffer from Non celiac gluten intolerance. I eat a nice big piece of red meat when the tiredness takes over. It helps me be normal for a couple of weeks…
Check your blood peasure, mine is very low .. I take iron and VB12.. The afternoons are the worst for me .. not to sleep but need to lie down for an our or so to get energy back.
Cristina, that’s a really important and insightful comment. Just a heads up – if your blood pressure is consistently very low, you might want to be evaluated for neurally mediated hypotension (my doctor has it) or POTS (I have it). If your blood pressure bounces around and includes low readings, and your heart rate is very high, ask about POTS in particular. Doctors don’t think to check for it, but can diagnose easily if they consider it.
There are many medicines that can help low blood pressure. I take midodrine and it’s a godsend. This is the first time I’ve been able to stand, walk, do dishes, etc. without getting profoundly nauseous, dizzy, and weak. Some folks also take Florinef, which is also used for hypoaldosteronism (salt-wasting disease – not deadly, but can make you feel hellishly weak until treated, because your electrolytes get messed up).
I really hope you find something that makes you feel better! Increasing water and sodium can help for low blood pressure. The idea that salt is deadly and will ruin your heart doesn’t apply to those of us with crazy low blood pressure.
Four years after being diagnosed and being uber strict GF whole food diet, I will still get very long bouts of exhaustion that chained themselves together until it was 100% all the time.
I have a good internal medicine doctor and he discovered that I had reactivated Epstein Barr virus. Yep, that thing that causes mono that most of the world’s population has. When our immune systems take a sh*%kicking, such as being undiagnosed celiac and eating gluten, it can become reactivated.
Let’s just say it’s a bitch. I took a year off from my big girl job and created a more stress free life. Slowly, most days I’m getting a little better.
If it is EBV, I highly suggest trying 5HTP or SAMe before trying the prescript anti-depressants they may suggest if you can’t get the EBV under control. Not that you’re depressed but for some reason they do something in the gut to stimulate the immune system.
5HTP has made a real difference for me and I just switched to SAMe as the fatigue is now not as bad as the ongoing pain in humid weather.
It’s worth the test to see.
The main theme is that denial is nobody’s friend. Some days we may eat a risky food or push ourselves too hard just to try to feel normal, and frankly, to make ends meet in a competitive world.
Celiac disease is an exercise in patience, and I continue to discover more about myself (both good and bad) in managing my condition.
Here’s what I’ve learned so far, in a nutshell. I should note that recovering from a “glutening” or gluten exposure will be a separate post because…well…we’ve all probably had that harrowing experience. This is more day-to-day symptom management and ways to avoid sneaky gluten.
1. Get a ****load of nutrients every day. The easiest way I’ve found to do this is by juicing (especially green juice). Eat more micronutrients, than macronutrients. Our intestines have seen better days, so let’s make it easier for our bodies to get what they need to feel good.
2. Eat foods that are, in general, anti-inflammatory. Also, try to get your body’s ph back on track by eating foods that help restore your system to alkaline. An easy, cheap way to do this is to add lemon to your water. This sounds counterintuitive because lemons are acidic, right? Well, lemons metabolize as alkaline, plus they contain all sorts of good stuff that helps reduce inflammation. There are lots of resources online about alkaline foods.
On the other end of the continuum is a big inflammatory culprit—and this is true for all kinds of inflammatory conditions—fruits and veggies in the nightshade family. Certain carbs and fatty foods can also be problematic.
3. Certain foods and drinks are to be enjoyed only on rare occasions. Examples include super processed, sugary or sweet, alcoholic, and lots of preservatives.
4. In the words of Trent Shelton, “Protect your peace.” Find a release from the daily grind. I recommend green therapy on a regular basis to get started—get out on a short hike with some trees and plants. Even if your not an outdoorsman. My mind can get too busy for meditation, but getting out into some green space resets things for me. Ultimately: Stress seems to trigger celiac systems (similar to other autoimmune diseases).
4. Get your flora right. Take a probiotic *and* completely lay off the carbs for a few months. There are structured eating plans to help with reigning in those bad guys in your gut. I followed the Specific Carbohydrate Diet with success, but it was a lot more meat and protein than I’m normally into eating. The diet was created decades ago by a woman seeking to help her daughter with ulcerative colitis to avoid surgery. This was before probiotics so she even made her own yogurt to help ensure it had the good bacteria her daughter needed. The good news is you can find lists and guides for free online, and the foods are just certain meats, veggies, fruits, and specific dairy items you can pretty much find anywhere. You’ll definitely want to talk to your doctor or RD before starting any new diet plan like this.
5. Remove all gluten from your house, including non-food items. In my experience as a GI-diagnosed celiac and in talking to other GI-diagnosed celiacs, it’s difficult (impossible?) to feel better until you do.
6. Avoid hanging out in pizza places. Yes, airborne gluten is a problem, according to some celiac disease studies as early as the 1950s. For example, two farmers with celiac disease were studied. Both followed a strict diet of no processed foods, yet one farmer had refractory celiac disease and wasn’t getting better. They discovered that the feed the struggling celiac farmer was giving to his cattle contained glutenous grains that he didn’t realize he was inhaling. If you think this could be a problem for you, it’s worth discussing with your doctor. My doctor, a GI specializing in celiac disease, said that airborne gluten can be bad news for some with the condition.
7. Don’t take unnecessary chances. Trust your gut and do your research—just because the product label or restaurant menu says “gluten free” or “no gluten” doesn’t mean it is truly gluten free by celiac standards. Ask an exhaustive list of questions by calling the customer service line listed on product packaging before eating it or by asking for the restaurant manager every time you order food—even if you’ve been there before. Every time I’ve ignored a celiac hunch I’ve done so at my glutening/peril.
There are helpful guides written by people with celiac disease (and the people who love them) that include regularly and painstakingly updated lists of processed foods, along with what the manufacturer considers “gluten free.” My favorite writer/researcher is Jane Anderson with about.com. Her articles and lists cut through the clutter and were one of the first resources to help me feel normal after my diagnosis and new restrictive lifestyle. My favorite is the list of gluten-free Halloween candy she updates each year.
8. Set aside restoration time each day. If you schedule in rest and relaxation with a start and a stop time into your daily self care, you’ll avoid feelings of guilt, and you’ll stay on top of managing your disease. As with many autoimmune diseases, you now have an energy budget. Spend wisely and set aside time to recharge, just as you would for your cell phone.
The main theme is that denial is nobody’s friend. Some days we may eat a risky food or push ourselves too hard just to try to feel normal, and frankly, to make ends meet in a competitive world.
Celiac disease is an exercise in patience, and I continue to discover more about myself (both good and bad) in managing my condition.
Here’s what I’ve learned so far, in a nutshell. I should note that recovering from a “glutening” or gluten exposure will be a separate post because…well…we’ve all probably had that harrowing experience. This is more day-to-day symptom management and ways to avoid sneaky gluten.
1. Get a ****load of nutrients every day. The easiest way I’ve found to do this is by juicing (especially green juice). Eat more micronutrients, than macronutrients. Our intestines have seen better days, so let’s make it easier for our bodies to get what they need to feel good.
2. Eat foods that are, in general, anti-inflammatory. Also, try to get your body’s ph back on track by eating foods that help restore your system to alkaline.
Fruits and veggies in the nightshade family, along with certain carbs and fatty foods can also be problematic.
3. Some foods and drinks are to be enjoyed only on rare occasions. Examples include super processed, sugary or sweet, alcoholic, and lots of preservatives.
4. In the words of Trent Shelton, “Protect your peace.” Find a release from the daily grind. I recommend green therapy on a regular basis to get started—get out on a short hike with some trees and plants. Even if your not an outdoorsman. My mind can get too busy for meditation, but getting out into some green space resets things for me. Ultimately: Stress seems to trigger celiac systems (similar to other autoimmune diseases).
4. Get your flora right. Take a probiotic *and* completely lay off the carbs for a few months. There are structured eating plans to help with reigning in those bad guys in your gut.
5. Remove all gluten from your house, including non-food items. In my experience as a GI-diagnosed celiac and in talking to other GI-diagnosed celiacs, it’s difficult (impossible?) to feel better until you do.
6. Avoid hanging out in pizza places. Yes, airborne gluten is a problem, according to some celiac disease studies as early as the 1950s.
7. Don’t take unnecessary chances. Trust your gut and do your research—just because the product label or restaurant menu says “gluten free” or “no gluten” doesn’t mean it is truly gluten free by celiac standards.
8. Set aside restoration time each day. If you schedule in rest and relaxation with a start and a stop time into your daily self care, you’ll avoid feelings of guilt, and you’ll stay on top of managing your disease. As with many autoimmune diseases, you now have an energy budget. Spend wisely and set aside time to recharge, just as you would for your cell phone.
The The main theme is that denial is nobody’s friend. Some days we may eat a risky food or push ourselves too hard just to try to feel normal, and frankly, to make ends meet in a competitive world.
Celiac disease is an exercise in patience, and I continue to discover more about myself (both good and bad) in managing my condition.
Here’s what I’ve learned so far, in a nutshell. I should note that recovering from a “glutening” or gluten exposure will be a separate post because…well…we’ve all probably had that harrowing experience. This is more day-to-day symptom management and ways to avoid sneaky gluten.
1. Get a ****load of nutrients every day. The easiest way I’ve found to do this is by juicing (especially green juice). Eat more micronutrients, than macronutrients. Our intestines have seen better days, so let’s make it easier for our bodies to get what they need to feel good.
2. Eat foods that are, in general, anti-inflammatory. Also, try to get your body’s ph back on track by eating foods that help restore your system to alkaline.
Fruits and veggies in the nightshade family, along with certain carbs and fatty foods can also be problematic.
3. Some foods and drinks are to be enjoyed only on rare occasions. Examples include super processed, sugary or sweet, alcoholic, and lots of preservatives.
4. In the words of Trent Shelton, “Protect your peace.” Find a release from the daily grind. I recommend green therapy on a regular basis to get started—get out on a short hike with some trees and plants. Even if your not an outdoorsman. My mind can get too busy for meditation, but getting out into some green space resets things for me. Ultimately: Stress seems to trigger celiac systems (similar to other autoimmune diseases).
4. Get your flora right. Take a probiotic *and* completely lay off the carbs for a few months. There are structured eating plans to help with reigning in those bad guys in your gut.
5. Remove all gluten from your house, including non-food items. In my experience as a GI-diagnosed celiac and in talking to other GI-diagnosed celiacs, it’s difficult (impossible?) to feel better until you do.
6. Avoid hanging out in pizza places. Yes, airborne gluten is a problem, according to some celiac disease studies as early as the 1950s.
7. Don’t take unnecessary chances. Trust your gut and do your research—just because the product label or restaurant menu says “gluten free” or “no gluten” doesn’t mean it is truly gluten free by celiac standards.
8. Set aside restoration time each day. If you schedule in rest and relaxation with a start and a stop time into your daily self care, you’ll avoid feelings of guilt, and you’ll stay on top of managing your disease. As with many autoimmune diseases, you now have an energy budget. Spend wisely and set aside time to recharge, just as you would for your cell phone.
main theme is that denial is nobody’s friend. Some days we may eat a risky food or push ourselves too hard just to try to feel normal, and frankly, to make ends meet in a competitive world.
Celiac disease is an exercise in patience, and I continue to discover more about myself (both good and bad) in managing my condition.
Here’s what I’ve learned so far, in a nutshell. I should note that recovering from a “glutening” or gluten exposure will be a separate post because…well…we’ve all probably had that harrowing experience. This is more day-to-day symptom management and ways to avoid sneaky gluten.
1. Get a ****load of nutrients every day. The easiest way I’ve found to do this is by juicing (especially green juice). Eat more micronutrients, than macronutrients. Our intestines have seen better days, so let’s make it easier for our bodies to get what they need to feel good.
2. Eat foods that are, in general, anti-inflammatory. Also, try to get your body’s ph back on track by eating foods that help restore your system to alkaline.
Fruits and veggies in the nightshade family, along with certain carbs and fatty foods can also be problematic.
3. Some foods and drinks are to be enjoyed only on rare occasions. Examples include super processed, sugary or sweet, alcoholic, and lots of preservatives.
4. In the words of Trent Shelton, “Protect your peace.” Find a release from the daily grind. I recommend green therapy on a regular basis to get started—get out on a short hike with some trees and plants. Even if your not an outdoorsman. My mind can get too busy for meditation, but getting out into some green space resets things for me. Ultimately: Stress seems to trigger celiac systems (similar to other autoimmune diseases).
4. Get your flora right. Take a probiotic *and* completely lay off the carbs for a few months. There are structured eating plans to help with reigning in those bad guys in your gut.
5. Remove all gluten from your house, including non-food items. In my experience as a GI-diagnosed celiac and in talking to other GI-diagnosed celiacs, it’s difficult (impossible?) to feel better until you do.
6. Avoid hanging out in pizza places. Yes, airborne gluten is a problem, according to some celiac disease studies as early as the 1950s.
7. Don’t take unnecessary chances. Trust your gut and do your research—just because the product label or restaurant menu says “gluten free” or “no gluten” doesn’t mean it is truly gluten free by celiac standards.
8. Set aside restoration time each day. If you schedule in rest and relaxation with a start and a stop time into your daily self care, you’ll avoid feelings of guilt, and you’ll stay on top of managing your disease. As with many autoimmune diseases, you now have an energy budget. Spend wisely and set aside time to recharge, just as you would for your cell phone.
Here’s my start at a post: http://www.celiachealthy.wordpress.com
Mr. Dude
I take my multivitamin and vitamin C whenever I feel a drop in energy. It is always hard trying to keep my energy up and with my job by the end of the week I crash and sleep for 10 hours but I have found that keeping my vitamins up I feel alot more alive, I also use nutritional yeast in one meal everyday to get my b vitamins from a food source plus it tastes like cheese!!!! Hope this helps
Best wishes
Shel
This can be a controversial topic, but CBD oil?
When i get glutened (like now, a dude on purposly hit me in face with bag of wheat flour at work because the executives raised the prices, guess the price aint right… (i still can’t figure out if that joke is dumb or not)) I drink a triple expresso in the morning, then hope i don’t pass out sometime during the day before bed.