Gluten Dude

I received the following message yesterday. She is in a place that most of us have been at one time or another. Celiac can be a frustrating, isolating, never-ending disease. And when it’s got you by the throat, it can seem like there is no escape.

Here’s her email…

So…I have no idea who you are, and you don’t know me, but for some weird reason, I’m sitting in my car, crying and spitting mad, messaging you. Of all the bloggers I follow, you just seem to “get it”.

I was diagnosed with Celiac disease 6 months ago…felt great initially, super positive and overall, ready to conquer the world. Today? Not so much. I’ve waited 4 months for a GI appt with a new doctor (after my first doctor turned out to be a complete tool) and just sat in a waiting room for over an hour just for the receptionist to tell me I need to reschedule.

My husband is in the Air Force and is leaving next week for a 15 months overseas tour, and I’m scared to death that I’m not reaaaally getting better. I’m exhausted. Constant brain fog. No true support group (our GIG is ridiculous). I’m strict GF…I’ve read and listened to every thing I can to include the crazy fringe doctors.

I’m overwhelmed…I just want to feel better. I’m doing everything right. PLEASE enlighten me and tell me I’m not the only one that feels this way and that I’ll find my way, because right now I feel like shit.

I’m 41, I have an awesome family, fun and supportive friends, but I’m feeling weary…that’s the best word I can think of to describe this.

Advice?

Like I said, you are certainly NOT the only one who feels this way. You are not alone. You’ve got a phenomenal celiac community here that’s got your back. And kudos to you for having a supportive group of family and friends. Many aren’t so fortunate.

Stay the course. It can take longer than six months to heal. The expectation is that you will immediately feel better once you begin eating gluten free. The reality tells a different story. Try to stick to mostly whole foods until your body has a chance to heal. That made a world of difference for me.

Perhaps a trip to a good dietitian or allergist to see if anything else is going on?

I know it’s frustrating. I still get frustrated…a lot. It’s kinda part of the celiac package.

My best to you and wishing your husband a safe trip overseas.

And if you ever need a friend, as Bill Withers says, Lean On Me.

If anybody else wants to chime in and let us know how you got out of the celiac doldrums, please share.

53 thoughts on “A Fellow Celiac Needs a Group Hug & Some Advice. Let’s Bring It.

  1. There’s been so many times were I just felt things weren’t going to get better – and then suddenly I would find myself on the other side of the fog with a new perspective. Don’t beat yourself about it – cry it out and then treat yourself to a bit of tlc. I find this combo works for me: lazy time snuggled up on the couch, eating lots of nutritious things like berries/seeds/nuts (if they are safe) on top of big healthy meals and lots of water. Exercise like walking or yoga brings me a great relief and gives me extra energy.

    I hope you are feeling better

    *hugs*

  2. I agree with .GD. You need to eat whole foods. I was where you are. I was a wreck, suffering from neuro issues (shakes ect) & on an emotional roller coaster with no support at home.Eventually, I chose to eat Paleo & it has made all the difference. You need to be kind and gentle to yourself. It takes over a year to heal. You’ll get there!! My mantra is “one foot in front of the other”. Sending you strength & hugs!! You’ll get there!! :)

  3. Hey there… we’ve all been there. Before I dive into suggestions, I want you to know that you’re not alone in this. As the Great GD says so many times… celiac does suck, and you’re not imagining it. This isn’t a weakness, or a sign that you’ve got a character flaw, or anything like that. You have a legitimate medical condition that can suck the life out of you – literally.

    Celiac is a disease of malabsorption, and three of the things that are commonly malabsorbed can cause depletions of energy, two of which are directly attributable to “gluten fog.” Those three things are iron, B complex vitamins, and thyroid hormone – the latter two being attributable to the fog. So make sure to get all of these things checked. In the meantime, I echo the Dude’s advice on whole foods – in particular, kale and other leafy dark greens, blueberries, bananas, avocados, nuts (if you can eat them), turkey, chicken, lean red meats (if you eat them), and wild-caught salmon (NOT farm raised). If you eat a lot of soy, BE CAREFUL. GMO soy may cause thyroid problems.

    The B complex vitamins are particularly important as they are the building blocks for the neurotransmitters whose lack is a possible cause of depression. You’ve got enough going on to experience depression all on its own – and in combination with the malabsorption of celiac, this could be a spiralling problem. So if you’re goign to add a supplement, add a GF B complex vitamin that has a minimum 200%RDA of B5, B6, and B12. Also add a 2000IU D3 supplement if you live in a cold dark climate.

    All the best to you. And we’re all here for you.

    • I could not have said this better myself; this is excellent advice. The only thing I might add is to stay away from dairy for a month or more until your gut heals. As dairy is digested in the same part of the small intestine as gluten, once the villi heal you may be able to eat it again. Just for now, be careful, stay with whole foods from the perimeter of the store. Healing can take weeks, months or years- you just have to stay with it and as it says here: above all, be kind to yourself.

  4. What GD and Chloe said. It’s not easy and won’t happen overnight. You’re eating right, right? BIG plus. But, if your first doc was, as you said, a “tool”, pleaseplease find someone to run some blood tests for you. I was dx’d celiac and have been GF for 4.5 years now but was still feeling overwhelmingly exhausted. My iron was very low and my vitamin D3 was dangerously low. Also, be very careful of hidden areas in the kitchen where cross-contamination can hide – pots, pans, dishes, utensils, the microwave, the toaster, not to mention double-dipping in butter, jelly, peanut butter….. Just a few things. And, visit GD often!
    My husband is military, too, so I understand that part for you. Good luck!
    YANA!
    (You Are Not Alone!)

  5. I’m in a similar situation. Four months in, and feeling somewhat better, but there always seems to be a catch with this disease. I want a new Dr as well – my GI did find the problem, to his credit – but didn’t really give any help, advice, or suggest any follow up testing of any kind. All I can tell you is that you are certainly not alone. I agree with Gluten Dude – maybe see an allergist, nutritionist, or even your general practitioner to check for vitamin deficiencies. Whole foods are your friend. In our busy world it’s hard to eat that way all the time, but as celiacs our health depends on it. Stay the course and don’t lose heart. Lean on your friends and family and those of us here on the internets. :) It WILL get better!

  6. It is very hard at times… it’s been 8 months for me after figuring out that gluten had made me miserable for years. Even though I try to be good, I still get glutened. And when I see the media and comedians make fun of people like us, I still get angry even though it’s best to try to keep a sense of humor. It is difficult, and it’s okay to vent at times, and to be upset. I guess I have learned to try to take one day at a time, and just do the best that I can.

    Processed foods and I still don’t get along, even if they say “gluten free”. Recently I discovered that I do better without dairy also, so trying to avoid that too. It’s been a long road of discovery, and it may be for you also. Please hang in there, and don’t be afraid to vent. Knowing that there are other folks going through the same things has been helpful for me, and I hope for you as well. Take care of yourself!

  7. Hang in there! Go to your PCP and have him check for vitamin deficiencies. You would not believe the symptoms of low vitamin D & B 12. I am one of the few fortunate Celiacs whose symptoms cleared up pretty quickly & my heart always goes out to those whose situation is like yours. You should definitely try eating Primal/Paleo because this will eliminate ALL processed foods. Don’t forget this too shall pass.

  8. Sweetie, you can do this. You are not alone, I promise you. My husband is active duty Army, did 5 12 month deployments in 9 years, the whole time I’m sick as hell and getting nowhere with base drs. This was all before diagnosis, but my point is you will find the strength and willpower to make it through this. I too was recently diagnosed this June and did so much research I feel I should have a masters degree in something by now, first few months started feeling a little better, found an online celiac bestfriend and thought I had a grasp on it. It’s the loneliness of this disease that makes it feel unbearable. The depression can get overwhelming. I have spent the last week getting over being glutened and Saturday night I had a complete breakdown because my brain was not working at all. I could not undo my shoelaces!!! I’m only 37, I have raised two kids, dealt with military life 14 years now, moved houses by myself without a moving company, learned how to fix washers, dryers and vacuums, and I could not take my own shoes off!!!! I hit an all time low. BUT……life goes on!!!! We can allow this disease to get the best of us, or we can stand up and take control. We can get the best of the disease, which is all these amazing people inside our computers!!! These people are strangers who know nothing about us, but can truly relate to what we are going through. These people love and care about us, they want to help us. They know more about what we go through than most drs because they have been there. You can do this, you have to have faith in yourself. The dr appt situation is crap, but you can’t stress about it because you had no control over it. Wipe your tears, take a deep breath, pick your strength back up and take control back. It is good for us to cry and release the frustration of this new beginning of life, but we cannot dwell on it. We have to keep moving forward. I hope you start feeling better soon, and seriously hang in there. Take care my dear and I truly wish you the best. I shall be thinking of you.

  9. *HUGS*
    Don’t beat yourself up! This disease is crazy and it seems like there is a spectrum of symptoms and everyone responds differently. I was anemic for years, it took having scary bleeding bowels to be referred to a GI that tested for EVERYTHING. Then after the celiac diagnosis it took 2 years for my ttg titer to get down to normal levels. Even after that I am still tired and feel beat up a lot. B vitamins, good sleep (when I can), and Airplane! help me when I’m down.
    Just know that we are all here. Dude’s page is remarkably helpful, friendly, and an awesome resource for venting!

  10. You’re getting great advice from other commenters, so I just wanted to let you know that you’re not alone at all – I’m in a similar place and I’m four years into this game. Celiac brings highs and lows, and I found it important to understand a lot about what and how I was feeling. I journaled a lot – not necessarily about what I was eating (much to the dismay of my PCP) but more about what I was feeling. I did/do a lot of yoga, and sometimes a movie marathon is in order. You likely know what you need to eat to make things better, so searching for food answers that don’t exist is frustrating. Paramount and fundamental to all of this is to be good to yourself and listen to what you’re body is really telling you.

    Sending you some peace

  11. From one military wife to another, I can honestly say that I completely understand how you feel. Stress has a way of making our symptoms worse and with your husband about to deploy, you are probably under a great deal right now. I finally broke down during my husband’s last tour to Afghanistan and went on some anti-anxiety meds for the stress and that did seem to calm down my celiac symptoms as well. I normally hate being on prescription meds but it did help and I’m thankful for that. I’m glad to hear that you have a great family and support group. That helps tremendously when you are dealing with something as difficult as celiac. I’m wondering, are you with Tricare Prime or Standard? If you’ve only been seen at military facilities that can make all the difference. I think it’s wonderful that the government provides us with health insurance but the truth of the matter is, many facilities are understaffed for the amount of patients they provide care for which can be a problem for someone like yourself who has very specific needs. I switched to Standard after the birth of my first child and have never looked back. Most of the civilian doctors I’ve been treated by have been very helpful in dealing with my celiac. It was a civilian doctor who first recognized it even though I had been having typical celiac symptoms for years while under Prime. I will keep you in my prayers, and your husband as well and hope you find some kind of relief for what you are going through. Thank you for your sacrifice :)

    Amanda

  12. Remember, too that Celiacs often have sensitivities to other foods; dairy, sugar, fructose, legumes, soy, grains in general.
    I suggest keeping a log of what you and how you feel. I suggest by specific times… So, times in the first column. second column you enter what you ate at that time and then when you show symptoms, put symptoms in the time row in the 3rd column. You may come to find that, oh I don’t know, a few hours after you eat soy you have a migraine, or every time you eat grains you are extremely fatigued. I recently did the Whole30 and felt great! and then, slowly introduced foods. ALL of my symptoms went away on Whole30. So, it was apparent that something I was eating was bothering me. I’m still reintroducing, but we’re suspecting legumes, or soy! Either way, I’m glad it wasn’t corn, or diary. Although, I have to limit diary. I can do cheese and butter no problem, but if I eat yogurt or drink milk I feel bad. I’m almost 2 years gluten-free. I felt like a different person initially, SOOOO much better, but after about 6 months felt bad and struggled. I thought it was cross contamination from soaps, or makeup and now OUR ENTIRE HOUSEHOLD is gluten-free. Every cleaning product, anything you can think of has been checked (I also have a son that is 5 and was diagnosed with celiac at age 3). So, I wanted to eliminate any possibility of cross contamination in our house. Now, that my son feels good all the time and I feel like crap, we started suspecting something else was bothering me. We were right. Hang in there.
    Love your Celiac friend.
    Like my facebook page, Southern Illinois Celiac. I share recipes, and mostly created the page to help people that are new and struggling with celiac. https://www.facebook.com/SouthernIllinoisCeliac

  13. Some really good advice here already for you. I just want to add my support to everyone else’s. The fact that you are reaching out is a testament to your strength and perseverance. You know by now that you can handle anything, though some days it feels like you can’t. Keep telling yourself that you will feel better. You will!

  14. Hang in there! It SO frustrating sometimes. But a lot of people have felt a million times better by going grain-free and/or paleo, because sometimes the traditional GF diet is not enough. You might want to try it for a month and see if it helps. We have meal plans and recipes at Stuffed Pepper that could help you get started, if it seems overwhelming. Also, you should try to find a “functional” doctor. Those kinds of doctors get it. Many of the traditional doctors still don’t understand all the layers of celiac disease and gluten sensitivity. Once gluten has wreaked havoc on your system there are all sorts of other complications that can arise, so you need someone who knows how to check all thyroid levels, who looks at Vitamin D, etc. etc.

    Feel better soon!

  15. I hate that you’re having such a rough time, some days are really bad for me too so I can relate. I’m trying to do better when it comes to listening to my body about what to eat/avoid. Initially, I thought that only staying away from gluten would solve everything, that wasn’t accurate- even without gluten, I seemed to get worse and worse. So, I’m learning that it’s also best for me to avoid dairy and iodine (I’ve researched this and other celiacs have similar issues with dairy & iodine). I’ve also started drinking aloe vera juice and nettle tea to help with the skin problems associated with celiac and it’s helping too. Like a few of the other comments have mentioned, it just takes time for our bodies to heal from this kind of thing. But you’re not alone, please keep reaching out and know that you’re a part of a community that WILL support you!

    Oh- another thing too, if you’re taking any medication you might want to make sure that it doesn’t have gluten in it, I was and didn’t realize that I was ingesting gluten this way. Of course, I’ve since stopped taking it. Just a thought…Hang in there honey!

  16. I’m in San Antonio and happy to have dinner parties/community. That always helped me, especially since I’m single and can’t eat out at anything but dedicated restaurants. There’s only two legitimate places with safe sourcing here: One Lucky Duck and Red Oak Bakery.

  17. Your story is so similar to mine. At first I thought the celiac disease diagnosis was the cure. No gluten, no problem. I felt better for a little while. 6 months into it I felt almost as bad as when i was diagnosed. I told my doctor, but it was clear he didn’t believe me. I shopped around for a new doctor. I found one who is amazing! She tested me for everything under the sun. We conquered my problems one at a time. I was severely deficient in Iron, B-12, vitamin D. Prescription strength supplements along with B-12 injections got me on the right track. Then we discovered that I also can’t handle dairy. So, we cut that out and I started feeling a little better, but we both knew I still wasn’t there. More testing… We discovered I had several hormonal imbalances – including thyroid. We added more supplements. Finally 2 years into things we think we are on the right track. It took a long time to find all the things that went wrong. Now we monitor and tweak the doses as need dictates. Finding a doctor who would listen to me was the key to my success though. It is a partnership. I research things, she researches things, and we come together and discuss the issues and agree on a path. My previous doctor wasn’t listening to me and kept shooing me away. Don’t put up with that. Keep looking for a new doctor until you find one who listens. The doctor I found has a very small independent practice not directly affiliated with any hospital or health “system” in the area. Look outside the box to find some support and don’t stop until you do. There are people out there who will listen and can help. Good luck!

  18. Keep your chin up! I know it’s easier said than done though. I’ve been on my roller coaster ride for almost 2 years now, and it’s still not easy. Like many others have suggested, you should test for other food intolerances as well. It takes a lot of trial and error, and a lot of patience, but you have to customize your diet to YOU. Gluten free alone definitely isn’t enough for 99% of celiacs. The ups and downs come with the disease, so just try to remember this isn’t your fault. You have 2 wonderful support groups..your family..and this massive community who knows hands on what you are feeling. Stay positive.

    ***biiiiiiigggg hugs xo

  19. Tons of great advice above…I’ve been GF for about 13 years now, since the age of 40…took me awhile to feel better, I had to take out milk products too and that really helped, I get the brain fog from them too…

    someone mentioned functional docs…here’s a link to find one near you: http://www.functionalmedicine.org/practitioner_search.aspx?id=117

    If you are in the eastern PA, NJ area…you might want to see Dr. Wendy Warner…she’s a certified holistic practitioner but also a medical doc (GYN) and she gets it… very into nutrition and diet…

    Everyone above has said it better than I can…you will feel better, it takes time, hang in there…we get used to it, we get better, we get stronger, we get better at being our own best advocate, we still get glutened, we learn to deal with it and move on…we help others in the same boat…

    One more thing…this bread is the BEST I’ve had..and it’s soy, and corn free too http://canyonglutenfree.com/

  20. What everyone told you is true,
    You won’t feel better right away, it can take years to heal the damage that has been done by eating gluten all these years.

    Malabsorption is a major problem when you go gf at first – It is IMPERATIVE you use vitamin D3 and the B’s along with probiotics, after that add in whatever supplement that makes you feel better.
    D3 is recommenced at 50,000 ius for anyone deficient. I take 50,000 ius a week in the winter and about 25,000 in a week in the summer. The D3 and the B’s are necessary for your digestion, without them your digestion cannot heal.
    Don’t let anyone tell you that is too much D3, there is a ton of research supporting taking that much.

    A regular every day Dr can do the test to see if you are deficient in D and give you guidance here. A naturopath or homeopath would be more helpful.

    Be careful of kefir, it may be too much for some digestive systems when they are already sensitive. Many suggest it as with probiotics but again kefir can be difficult for the tummy while probiotics can help.

    Dairy can be really difficult to digest when you first go gluten free,it can feel like you are still reacting to gluten but instead it’s dairy.
    This may lessen over time but it is something to be aware of.

    Be very careful eating out, gluten free friendly isn’t always gluten free.

    Find a food that makes you feel strong, for me it’s steak, potatoes, cabbage, kale etc. (cabbage is healing for the stomach), you need healthy fats, coconut oil, pure butter etc
    I don’t follow any other diet, I eat to feel better.

  21. You are definitely not alone! I could definitely have written this exact message. I was diagnosed in June having a pretty good indication that Celiac was my issue just from paying attention to what I was eating. I have not purposefully eaten anything with gluten since then but have not noticed as big of a difference as I thought I would. I have seen my GI for a follow up in Sept – I was in the office for 10 minutes and saw the GI doctor for 5 minutes. He asked how I was doing – I explained that I do feel better but that there are days that I know I was contaminated with something. He stated other then the Celiac my bloodwork from June was okay as far as vitamin levels and iron levels so I shouldn’t need to worry a lot about deficiencies and then he said see you in a year! This is not beneficial whatsoever! I did see a dietitian that helped a lot with making me feel that I can deal with this and still eat..she helped me see that I can just make substitutions in current recipes rather then totally changing everything! However, I know all this information – as far as what I can’t eat, etc. – but that doesn’t help me to deal with the feeling that you feel when your at work and someone has a pan of brownies and you have to decline even though they know you want one – then you have to explain why you can’t have it, or the feeling you have when you just want to go out to a nice dinner with your family and you are forced to decide where the entire family is going to eat dinner because there are limited number of places you can go, or the feeling you get when you have 30 minutes to eat lunch and all there is is fast food that is crawling with contamination. I have also read a lot about cross-contamination and ways to prevent it…however with a gluten eating husband and two young toddlers – it is way easier said then actually done. So with saying all of this…you are not alone!!

    It is awesome that you have friends and family and a support system, however, do you have a Celiac diagnosed friend or support group? I myself have struggled with connecting with the local support group – mainly because it appears that most of them are far more concerned about GMO’s and MSG’s rather then just being Celiac. However, I do understand the benefit to having someone to talk to about your struggles that understand the internal struggles in addition to the external struggles. This is why I love the Gluten Dude…a lot of what he says I totally understand and can relate to!

    Hang in there….I have heard several times that it takes awhile to get healthy and to try to avoid processed foods (which is really difficult). Just cannot stress enough that you are not alone!!

  22. I’ve been crying reading this. Oh how I know how your feeling right now. Just give me some strength or energy. Today has been a really bad day for me, I think after having 2 quite good days it makes it somehow worse. I’ve spent the last year being very ill, my doctor told me it was because I have two children and was a very busy mum. At least once a week I was with him ( sore stomach, no energy, kidney infections, being sick about 4 days out of 5 , joint pains, cysts behind my knees in my breasts and ovaries, heart problems, just the whole works.) Sometimes I was just so far through. Then one day I was there and my doc was off sick and another dr saw me, she took one look at my acene face, swollen hands and glands and said you have CD, a week later I had had all the tests and yes I had an answer to all my problems Yipeeeeeee.
    3 months later I have a really strict gf diet, I also have fructose (since 7 years) and lactose intolerance within days I felt much better. But in real life I’m still struggling, depression is staring to take over. I know that it is because of the deficiency. But it doesn’t make it any easier. I’m from Ireland but I live in Germany. I found this blog at the weekend and it has helped me so much. I’m not weird or strange I only have CD and I can get through this. This blog is full of people who understand how I feel. And I can cry and grieve and try to move on, but the very best thing is that I’m not on my own and either are you. We can do this we don’t have another option.
    I think I’m all cried out for now. Just writing this has helped me, thanks gluten dude.

  23. You’re getting better if you’re gluten-free–you just don’t know it, yet.

    If you were undiagnosed for a long time, it can take a long time to heal.

    The other thing is, that there is a huge amount of cross-contaminated stuff out there. I had to stop eating Amy’s t.v. dinners once I realized they were glutening me; Bob’s Red Mill makes a lot of people sick; Arrowhead Mills, ditto.

    Glutino and Udis seem o.k., though.

    Also, keep a food diary–just gluten-free may not be enough; I had to stop eating red meat to get better–it contains arachidonic acid, which is a big component of inflammatory bowel disease, which celiac can be in many, many people. (Google “red meat”, “ulcerative colitis”, “Crohn’s” and IBD, and you’ll see the links.)

    You’re getting better–it just takes time, and there may be a few more tweaks to your diet that will make all the difference.

    Hang in there. This isn’t easy. It’s doable, but not easy. If you’re strict gluten-free, you’re getting better, even if it doesn’t seem that way.

    • Thank you for saying that about Arrowhead Mills. I made something with their millet flour today (for the first time) and I’m wondering if that’s connected to my feeling so awful (i.e. cross contamination). I’m finding conflicting information online.

      • So often we hear of anecdotal information on the internet about how GF products “make someone sick” and frankly, it is not always about gluten.
        This is not scientific evidence and makes people fearful for no good reason.
        These companies work very hard to help us out
        and I am always a bit peeved to read “BRM made me sick! It MUST be gluten”. I simply do not believe that is true.
        It could very well be something else in the mixes that people cannot tolerate.
        Bob’s Red Mill does not make me sick and I am very sensitive to trace CC. ..Just sayin.
        They are certified GF
        And Arrowhead Mills GF products carry a big circled G F which means certified to GIG standards.
        That’s as good as it gets for celiacs. if you feel lousy after using them, then you shouldn’t, but it does not mean they do not meet GF standards.
        Again, just offering thoughts IMHO.
        I get tired of too much company and product bashing.

  24. There is some great advice here. It takes time and you might always have some issues. Dr’s diagnose people but are not always the best resources for regaining your health. I don’t know where you are but if you go to eatright.org you could look for a dietitian in your area that is experienced in celiac disease, or look at Tricia Thompson’s website. Glutenfreeworks is a good site to look at nutrional deficiency stuff. I am a registered dietitian in Illinois that was diagnosed with celiac disease almost 2 decades ago and there are others like me. I don’t think a GI Dr can give you the time you need. Be patient and keep learning. This is not a one size fits all thing, everyone has their own special celiac problems and solutions. I know I still fight my battles. I was diagnosed at about your age and the damage takes longer to repair.

  25. I know how you are feeling….I was there, too. One of the things I discovered after going GF, and I was still feeling like crap, was that I was also severly lactose intolerante. I had to cut out all lactose, couldn’t even have it in baked goods or anything. Even my medications had lactose in them! (That’s another thing to check and make sure any meds you take are GF and lactose free). Once I eliminated the lactose ( I split up the times I took my meds to make the unavoidable lactose dose smaller), I started to feel better. However, despite being strictly GF and lactose free, I still wasn’t feeling as good as I thought I should be. It took almost 4 months before I started feeling normal most of the time again. It can take a long time for your gut to heal, depending on how much damage was done, like 1 to 2 years! I also had to start getting GF lipstick, shampoo and facial cleanser. Not sure how necessary this is, but figured if it was going in or near my mouth, it was going to be GF…lol! Another thing that I find for me, is that if I am stressed out or anxious, my belly will hurt, too, and feels like I’ve been glutened when I know full well I haven’t. Something to think about, anyway ;)
    I hope this helps, and don’t give up…..keep on your doctors ass, don’t let them bully you, you know your body best!

  26. You’ve gotten absolutely amazing advice so far from everyone. It will get better with time, it does for almost all of us with Celiac Disease. You are not alone. It is not your fault that you have it and with time, as your body heals (which took almost a whole year in my case), you will hopefully feel the best you ever had. I have had to learn to be very patient with my body and health through this process. All the best to you!

  27. You are not alone. And things WILL get better. It just takes time. It can take years for everything to heal and start working properly again, but it does heal. My husband left for a year long deployment at the end of 2008. In 2009, while he was gone, my health went completely downhill. I was diagnosed with severe anemia, level 4 stroke range high blood pressure, severe sleep apnea and a heart condition. A year later, I accidentally discovered I had problems with gluten. Once I removed it completely from my diet, everything improved by leaps and bounds and things were great for a while. It’s been 2.5 years for me, and things are still so much better then they were, but I know there is still something I am having problems with. I have been waiting, hoping to be able to afford proper testing before eliminating things this time, but I don’t think that is going to happen. So, back to elimination diets for me.. (My family isn’t entirely thrilled with this.. they weren’t happy about saying good bye to gluten, but they have been supportive of me as the changes in my health – both physical and mental – have been very obvious..)
    It’s hard to make such big changes, and then to learn that is isn’t quite enough and more changes need to be made, Some of them will be permanent, others might just be short term. But they are so very much worth it. Things do get better, it just takes time. There is a lot of healing that needs to be done. And there are some great supports online. I know I don’t have much by way of an actual local support group. That’s pretty much because I live in semi-rural Alaska, so there are a lot of things I don’t have ready access to, even in our “big city” of Anchorage, but I have found so much help and support online. There are some wonderful blogs and facebook groups and web sites just chuck full of information… This week there’s even a free online e-summit on gluten (http://theglutensummit.com) that has been just full of wonderful interviews you can listen to on all sorts of gluten related topics. Don’t let the system get you down. Unfortunately, a lot of medical professionals just don’t get it yet. But keep working and keep fighting.

  28. Dear Advice? – hang in there! I say this not to be glib or invalidate your frustration, this disease is so super frustrating and illogically maddening! I hope you can take comfort in the support of your family since the celiac road ahead is rutted and gravel and not – definitely NOT – paved with smooth sailing. Even after 6 years/arms of knowledge/improvements everywhere including stores, products, awareness, support groups, medical, science, restaurants, etc. there is still so much farther to go! Everyday is a slog at some point for me – I get sick of thinking about it, talking about it, hearing myself talking about, being disappointed about it.
    It is a relief when I can kick back with friends who understand, with people who are supportive, and share these moments in cyberspace! Thanks GD for connecting us:) Some things that helped me in the beginning and continue to be helpful today – yoga breathing and movement, gratitude journaling and walking in the park. Best to you!

  29. First of all, major hugs and supportive vibes sent your way!! I have felt your frustration myself during the beginning stages of healing and my mantra became “Every day is a healing day”.

    We cannot speed up the healing process, I am afraid, but there are things we can do while trying to remain calm while waiting. Walk, ride a bike if you can, do yoga, read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler–it will help you understand the process of healing. Go to museums, the movies, art galleries, do some gardening— anything that gives you pleasure! I flooded myself with comedies. :)

    I am sure you are doing everything right and maintaining a GF diet, but the truth is, it takes a while for you to heal your 22 feet of intestines and your whole body, which has been adversely affected by celiac.
    My best advice? Do not waste your time or money with alternative doctors or allergists unless you are having anaphylaxis and continued bowel problems. IgE- and IgG- mediated testing is notoriously incorrect and invalid.

    Good follow up care involves blood work for Vitamin levels (B-12, D, folate) and anemia. Have your thyroid checked. Your primary care doctor can run these for you.

    “Exhausted and constant brain fog” suggests accidental trace glutenings somehow, or anemia, or a vit D deficiency or a thyroid dysregulation.

    I suggest a good quality probiotic, a good quality certified GF multivitamin with a B complex (and dump dairy if it bothers you) and
    and above all else, try to be patient. We really have no choice when it comes to celiac—healing takes time. I was in your shoes, so I totally empathize, but once all the deficiencies cleared up(I had a folate, B-12, D and iron def) and I started to heal, almost all my symptoms resolved. I am still working on the bone/muscle pain, but my situation is different from yours.

    Best wishes and let us know what else we can do to help!

  30. “You are braver than you believe, stronger than you seem, and smarter than you think.” Its a quote from Winnie the Pooh and we use it a lot at our house. It’s so true and Celiac seems to make us braver, stronger and smarter. I was raised in a strict Catholic household where curse words were not allowed and here I am with Celiac and raising two girls with Celiac and now we use curse words as a form of therapy. A good cry, a little stomping of the feet, and a few curse words screamed from the top of our lungs, seems to be helpful!!! And then I always check in on this great blog to read what folks are saying. Sometimes I go back to older blogs and read them again and read the comments again because it’s so reassuring and gets me back up on the horse, so to speak. I wish you the best and hope to hear that you are doing better soon. Bless you and your family!

  31. it took me about a year to start feeling better. things got ok then they got horribly bad (im talking flu like symptoms 3 times a month for about 3 days in a row) then they got better. your body may just need more time. i literally thought nothing was going to work. even my doctor started second guessing his diagnosis and had me getting more tests to see if maybe i actually had crohns. then all of a sudden things just started getting better. i never feel 100%, but i feel SO much better than i used to. i wish you the best and now how frustrating it can be. try and be patient.

  32. Well here is one BIG HUG for you and you have plenty of support!!!

    GlutenDude is right that it can take awhile, it took me almost a year. Giving up milk products for awhile might help and soy, as well as sticking to whole foods, like the Dude said. Try staying away from anything with corn syrup and genetically modified food when possible. Also, how are your nutrient levels? Are you lacking vitamins? That’s a possibility or a friend of mine was still feelin sick as well as it turned out she was missing an enzyme in her body to digest fat. There’s also several different foods that can be cross reactive that are gluten free but when eaten may have same gluten effects as wheat:

    Amaranth
    Buckwheat
    Chocolate
    Coffee
    Corn
    Dairy ie Milk and Cheese (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein)
    Egg
    Hemp
    Millet
    Oats
    Polish wheat
    Potato
    Rice
    Sesame
    Sorghum
    Soy
    Tapioca
    Teff
    Yeast

    Don’t listen to the stupid people around you, it sucks when family doesn’t support. But you have a new family now and we do support you!!

    • Why do you think telling her to eliminate all of these random additional foods is the right way to help? Where is your scientific evidence? She needs to be gluten-free and heal.

      • I suggested she might want to eliminate corn syrup and GMO foods for obvious reasons, if only to me, and provided her with education about cross reactive foods based on my 2 1/2 years of research and talking to hundreds of people with celiac and the problems they had. Not everyone has cross reactions with those ingredients, I do with hemp and nasally with dairy, which i still eat, but definitely some do. It is something to consider if down the line she is still getting sick. You have no idea what path she is walking down or what her compete systems are, so giving her as much info to pick an choose from and research is what I am doing. Thank you for asking :)

  33. You’re not alone. We are here for you. I was diagnosed with CD in Jan 2012, it was scary, frustrating and overwhelming all at once. I don’t know many people ‘different’ like me. I have good days and bad days physically and emotionally. Some days I feel so overwhelmed, I’m learning to deal with that. Us celiac’s need to stick together and lean on each other for support. Prayers and hugs to you. It gets easier, just don’t give up.

  34. I’m so sorry . . .sending you a virtual hug. And kudos for reaching out for help!

    In my experience, the doctors give us the diagnosis but don’t tell you how to live with the diagnosis. For me, a nutritionist really helped (I have multiple food allergies as well as celiac disease and an allergic esophagus). I went to some “others” who just overwhelmed me with alternative therapies and supplements that just made me more sick.

    I am always learning. This week I’m participating online in The Gluten Summit by reputable doctors and health professionals — oh how I wished I had this info five years ago! The most support I get is from online groups. Check out freedible.com.

    We are always here . . .

  35. Please….before anyone else posts with suggestions that 18+ various foods may be making her ill because of “cross-reactivity” with gluten, let me just submit to all of you who are reading this blog article
    that there is no scientific basis for this assertion and that the vast majority of celiacs heal just fine, incorporating these food proteins in their diet.

    Not one leading celiac researcher/doctor/nutritionist/dietician will tell you to avoid those foods.

    From the University of Chicago Celiac Disease Center:

    Q: What’s with all the talk about certain types of food causing “cross-reactivity?”

    A: There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.

    http://www.cureceliacdisease.org/archives/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity

    Did anyone hear Dr. Fasano or Melinda Dennis, RD talk about this on the “gluten summit” the past few days? No.

    Has Dr. Green or Dr. Murray or Dr. Guandalini, ever spoken of “cross-reactivity” as being a health threat to celiacs? No.

      • This subject keeps coming up over and over and I am not trying to pick a fight with anyone, honest. I’m a lover, not a fighter. :)

        But, I just do not see why some people embrace these theories that circulate on the internet.
        It took me nearly 15 months before I turned a corner. But that was me–I was in my 50′s and had been ill for YEARS. This gal could feel better in a very short time.
        She just needs encouragement and possibly some vitamins, not suggestions to take out more food proteins.

        Healing takes time. This is IMHO.

  36. Not sure if I can add anything else of value since it has already been discussed in previous comments.
    First and foremost, you are not alone with your experience so try to remember that at your low points.

    Malabsorption is the main issue besides going GF. Eating GF is hard because there are so many foods and chemicals that have gluten you and I can be exposed to it without our knowledge such as vitamins, toothpaste,etc.

    All of this takes time. Remember we all ate like normal people for years if not decades so expecting to be healed in a month or 2 is unrealistic. It is a function of time usually a year for starters. During that year if we get glutened, that incident takes 6 weeks to heal in our bodies so it is a perpetual cycle.

    Doctors? They all mean well but they are human and only know what they know or are taught by their industry. Less than 6% of medical school graduates have any diet / nutrition education so unless they are experienced with CD and gastro issues, choose another doctor. I personally only went to 4 doctors before the 5th doctor was the winner and could isolate the issues I was having. What a waste of time! I guess there is no sense in teaching doctors about CD since there is no profitable pill to prescribe so suggest cipro and go.

    Goal is to eat the best we can meaning eliminate most if not all processed foods, remove dairy for a few months, try juicing since vegatables are hard to digest and liquifying them is best and above all exercise a bit. Move that body even if it is basic walking or stretching. Easier said than done but just do it. Our bodies heal very well on their own if given a chance.

    Best of luck and remember, you are not alone!

  37. I’m an AF wife with Celiac too. I’ve read through most of these comments and there really are a lot of great suggestions as to what else may help you out. One thing they didn’t mention is that as a military wife you most likely are on TriCare Prime and as such you will not be allowed to see a dietitian or nutritionist without paying out of pocket for those appointments. TriCare just doesn’t think you need to see one. To that I say BS!!! I have been fortunate in that my GF Support Group leader happens to be in her senior year to become a nutritionist. Even though you don’t have that available you can go to the HAWC (Health and Wellness Center) (Yes it is open to the spouses) and there usually is a dietitian on staff who may not specialize in celiac but they may be able to help you move in the right direction.
    I have also started looking more into Leaky Gut Syndrome. This is basically what most Celiac Patients have till their small intestines heal from the unwitting damage we did till we went GF. This may help you as well.
    I have also found it greatly beneficial to start a regimen of probiotics daily. I mean the good stuff found in the refrigerator section of places like whole foods, vitamin market, and natural grocers. The heavy dose I’m taking helps populate my gut with the good bacteria my gut no longer has. I went to vitamin market and asked for help (they have people with special training) they were very nice and patient while they answered all my questions.
    I hope some of this helps. Remember you are your body’s best judge. If it’s not working for you try something else. just because probiotics have helped me doesn’t mean they will help you. Just make sure you give anything you try enough time to work before giving up. Stay strong, you can do this!

  38. You’re not alone. I’ve been GF half the time as you. At first I was all gung-ho “I’m gonna beat this!” And now I’m mad about it. Had a crappy day today. Tomorrow’s another day. I feel like whatever I’m going to say is going to come off as a platitude.

    Thank you for the Bill Withers, GD. Bill Withers makes everything better.

  39. Hi, it’s been just over a year since I’ve been diagnosed and it’s still a huge rollercoaster ride to recovery. What makes me feel better is the support from GD and this awesome community. I know it sucks, but hearing people go through the same things I do really makes me feel better. I know I’m not alone and if they can do it so can I.

    A LOT of the above comments are helpful. I’m always having issues with my energy levels but I eventually realised that you have to listen to your body. Every few months, I have to change the foods and portion sizes i eat. I also realised that exercise whether yoga (mild) or running (cardio) helps to put me in a better mood. Sometimes we underestimate what we capable of.

    It’s a tough game but why not see it as a challenge. I know its disheartening when you feel sick all the time and people don’t get what you going through. It’s okay to feel sorry for yourself :) . Have a good cry, chill out for a while, destress and start fighting back again. You can do this and it is for your own benefit. But know that we all support you and anyone else going through a tough time :) .

    You can do it!! :)

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