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30 Comments

  1. 1

    Mary Kate

    I’m one of those people who did feel better (though not great) right when I dropped gluten. It took a week. BUT I got very bad medical advice, and so I have an inconclusive blood test for celiac and an “all-clear” endoscopy (the latter was done more than a year after I dropped gluten from my diet). So I have no idea if I have celiac or “just” gluten intolerance. So good that you got a proper diagnosis.

    But find a new doctor. “All” celiacs do not have IBS. IBS is a functional disorder that can only be properly diagnosed by RULING OUT other causes — such as celiac. Find someone who knows their stuff better. I know that’s easier said than done.

    To me, it seems like anxiety is completely normal at this point. You’ve just found out that it is food, even healthy food, that is at least part of making you sick. This really sucks. It takes a while to get to your new normal. GD is right — patience. Mostly with yourself. It does get easier to accept, especially when you start to feel better.

    I found it easiest to just accept that some days, I was angry about the dietary and life changes. Being pissed off at the world (or the whole grocery store) rather than trying to be okay allowed the anger to burn off.

    Reply
    1. 1.1

      Gluten Dude

      Agreed. It’s totally ok to be angry. It’s a life changing diagnosis. But don’t let the anger simmer. The quicker you accept it, the quicker you can move on.

      Reply
    2. 1.2

      Cat

      The anxiety is quite probably an actual symptom, not a result of being concerned. Before diagnosis, I mistook my post-meal panic attacks for anorexia, worrying about how many calories I ate. I do have some degree of an eating disorder, but after going gluten free, these post-meal panic attacks disappeared completely. Turns out it was the gluten crossing the blood-brain barrier! In addition to the panic attacks, my short-term memory would go down the drain after eating gluten.

      Reply
    3. 1.3

      Sybil Nassau

      There really is a period of grief following the lifestyle change. After all, you have lost something- not a person, but a way of life, so be kind to yourself. If you feel like crying, cry; if you feel like yelling, yell. If you are really pissed off and feel like hitting someone, go out in your back yard or a park and throw some dishes at a tree or throw rocks in a pond. Either way, deal with the feelings in a healthy way. Ten years later, it still bothers me when I see a wedding cake I can’t eat- or a “real” pizza that just isn’t as good as mine- or even a French bread fresh out of the oven. This is a normal, human reaction and totally one WE will understand but maybe not others. After all, it is just food– and i try to tell myself it isn’t that important, but sometimes it is! You will still get angry at times- maybe when you have thrown away the fifth or sixth $9 loaf of bread you didn’t like or when you go to a family gathering and there is nothing you can eat (next time you will remember to pack your own food) or the restaurant gives you the wrong meal. Stuff happens, so learn to deal with it in a non-aggressive, polite way. Allow yourself to go through the stages of grief until you suddenly realize you really are ok, and life is good. Maybe even better than it was before!

      Reply
      1. 1.3.1

        SandieGF

        Best advice ever!! I can relate to everything you said Sybil, well said. I too went over and through the same hurdles. I found my rescue from Specific Carbohydrate Diet by Elaine Gottschall when i had no idea what was wrong with me. Had the opportunity to meet Elaine, she was like a mom who understood me.
        Sure I have looked back a few times and still miss having pizzas, breads and that wedding cake, but it never got to me where i tempted fate for my health. It will be alright! Patience like GD said. Best part is you’re not alone. This community is great and i just got here.

        Reply
  2. 2

    AlyPaly

    Hi Gluten Dude!! I was a happy, healthy, intelligent and sociable teenager until about the age of 17 when i began feeling incredibly fatigued, depressed, foggy and antisocial. I felt like my ‘soul’ had left my body and i was this empty shell – completely dead inside. My hair was falling out, my skin was pale and my nails were brittle. I was doing terribly at school after being an effortless A grade student. It was horrible. I was diagnosed with celiac at the age of 19 and felt much better. However around a year later, I began feeling depressed and foggy again, as if i had been glutened. Went through the process of cleaning out my diet, making sure there was no CC. I’ve cut out dairy. Ever since I still haven’t been right, it feels very ‘chemical’ and not like there are emotional issues. I’ve been on antidepressants and had therapy, which help a little bit, but sometimes i fear that that period of being ill permanently damaged my brain. I’m terrified I will never be my old self again. Any advice?

    Reply
    1. 2.1

      Laura

      WOAH! Are you writing about me??? Same ages, and exact same symptoms and results! Straight As, then got H1N1 and never got back to normal. I think that was my “catalyst” for the Celiac to rear its head. 2 years and a few months later, and I’m now on antidepressants, have osteoporosis at age 22, have a small (benign) tumor in my leg attached to my nerves, and looking for a therapist. Don’t have much of a social life, not motivated to do a whole lot, and have a ton of other food issues that I never had in the past (dairy, any liquids except for water make me bloat and fart all day, tomatoes, almonds, coconut, and so on and so forth).

      In my mind, there has to be something I can do/eat/not eat for my brain to go back to where it used to be. Where school was easy (never studied in high school before getting sick), I was happy all the time, and I wanted to do everything. Now, I’m almost fired from my job because I can’t keep up, and I’m having to look for a job that is easier (which would have mortified early-high-school me).

      I’m trying to figure out if my bar has been permanently lowered since Celiac, or if I can still raise it back to “normal” if I wait longer or try another “fix” for my brain. It sucks :( I try not to dwell on it (I’m not the type to feel sorry for myself), but it’s hard not to when it affects literally all aspects of your life all day every day.

      Reply
    2. 2.2

      Sol

      I have to say, your story sounds almost exactly like mine back when I was 17, only I am now 31 years old. As someone who has come through this, I promise you, it does get better, and you will come through to the other side. Find the things you are passionate about and focus on those. Make sure you are building connections with family and friends, as isolation only ever makes it worse. And remember that you won’t feel so ill forever as long as you remain careful with your diet. Also, talking to a therapist helped me much more than antidepressants ever did.

      Reply
    3. 2.3

      Sharon

      My fatigue and slight brain fog (for me slight, I had bad brain fog on gluten) came back after 3.5 years gluten free. Turned out I developed hypothyroidism. The fatigue and not feeling myself showed up a long time before my TSH became elevated. Oh, and dry skin. I couldn’t understand why my skin was so dry! And hair loss. It wasn’t until the TSH elevated that I had a puffy face and weight gain despite eating the exact same diet I had for months. Turns out my free T3 and free T4 were in the low normal range that whole time, and I really needed them higher. I learned a LOT from an excellent blog and book called Tired Thyroid. And I found an excellent functional medicine doctor who works WITH me on these issues.

      My poor daughter also has hypothyroidism. Hers would be considered subclinical, but her symptoms were really bad. Extreme fatigue and loss of interest in anything among other things. She feels so much better now even though she’s not quite on an optimal dose of T4 yet.

      Anyway, you may want to look into thyroid functioning to see if it could be behind your symptoms.

      Reply
      1. 2.3.1

        Else

        I definitely agree with the thyroid check. I felt better almost immediately once I was diagnosed with celiac and went gluten free. But two years later extreme exhaustion set in. I woke with migraines everyday and was so tired I was in bed by 8 every night. Knowing that many people with celiac also have thyroid issues I went to my doctor and asked to get tested. Sure enough, I had Hashimotos hypothyroid, in addition to celiac. After a week on thyroid hormone pills I felt alive again.

        Reply
    4. 2.4

      Karen C.

      You are not alone! My story is slightly different from yours, as no journey is exactly the same.
      I have often wondered if there was permanent damage done. I too struggle with fatigue and depression. It does seem that I am more prone to it since the onset of my celiac symptoms.
      All you can do is the best you can and try to be as healthy as possible. Take care!

      Reply
      1. 2.4.1

        Sybil Nassau

        Attention all of you complaining about the same thing!. It is true that Celiac disease and thyroid malfunction go hand in hand and if your doctor has not sent you to an endocrinologist for tests, do so ASAP. This is extremely important as the thyroid gland controls heart function and much more. Start with the blood test and go from there but I will bet once you are on the proper medication, you will begin feeling much better. Do not hesitate! And phooey on your doctor for not picking up on this important clue. Also ask for D and B12 levels to be checked as well, and if you are not on the supplements, you need to be soon. Many GI specialists are now doing that as a matter of course which is how they are finding their celiac patients even before doing further tests.!!!!

        Reply
  3. 3

    Cat

    Anxiety attacks were some of my most awful symptoms. It’s not just being worried about celiac; my heart would pound, my mind would race, I’d be in total distress yet confused because there’d be nothing wrong… and then an hour later my stomach would explode and i’d draw the conclusion that I’d eaten some hidden gluten.

    Anxiety and depression are fairly common celiac symptoms. Few people believe me when i say i went off gluten, then three days later i stopped wanting to kill myself :-) I am so thankful that my symptoms have evolved and include more pain but less panic attacks… I prefer the pain!

    It sounds like the poster may still be consuming gluten without realizing it, especially since they are already getting so much misinformation. Maybe they could review their diet with a knowledgeable nutritionist?

    I second staying away from processed gf items. Many are below the legal limit of gluten for being labeled GF, yet still contain enoigh gluten to set us off. I have found some brands that seem to not bother me, but it’s more a special treat. A broken digestive system certainly doesnt tolerate processed foods so well!

    Reply
  4. 4

    Julie

    Anxiety and depression can also be caused or at least exacerbated by all the nutrient deficiencies we suffer from gut damage and microflora being out of whack, in addition to other sensitivities (grains, dairy, soy … it varies from person to person). I didn’t start to feel significantly better until my Dr. added low FODMAP recommendations to my diet, and I quit eating “gluten free” processed food. Then I began rebuilding from there, adding probiotics (tiny amounts), supplements (D, A, B complex, magnesium and some other stuff in my case). Also, my tolerance for things (e.g. small amounts of grains) varies from day to day depending on whatever else I’ve been exposed to. Hang in there, you WILL get better — be kind to yourself, be gentle, and nourish yourself inside and out. It. Takes. Time.

    Reply
  5. 5

    Storme Arden

    Thank you. Thank you. I feel less alone and I feel heard. I am in rural Maritime Canada with no private health insurance as I am an artist. It took me a year and 1/2 to get a doctor. Many people have no family doctor. She is generally good but obviously not too knowledgeable about CD. I was also lucky to see the GI so quickly as they are overbooked. However I am not happy with my ” treatment”, in fact I am angry about it. Without the internet and generous people like yourselves who will take the time to write to someone I would feel totally at a loss.
    I appreciate the advice. I will have to work on the Patience, and perhaps self-compassion and accepting that yes I am sick. Discipline I think we are good with. I have no problem accepting giving up gluten or so far anyway. We had already stopped eating at restaurants as neither my partner or I were able to eat the food without one of us getting sick. We also don’t eat much processed food for the same reason. We grow vegetables & mushrooms. My partner willingly gave up gluten immediately when I was diagnosed. Although we don’t eat much processed food I haven’t felt inspired to learn to bake GF yet and we have been eating GF bread & cookies sparingly. I will stop. This is extremely helpful information. I have a friend whose husband “cured” his severe colitis with the Specific Carbohydrate Diet, but I just don’t feel ready for more restrictions. We are mainly vegetarian and meals are fairly limited already. I worry about whether I will have to give up cheese & yoghurt & more but I guess I’ll try to focus on now. I think I am more shocked to find I have an autoimmune disorder than angry. And I find the invisible-ness and misunderstanding of the disease difficult. People say but you look great as I lost 55 lbs in less than a yr, or now that you don’t eat “bread” you’re better, right? I could hardly see to type when I wrote you as I was crying so hard. I am grateful to you Gluten Dude and to the kind woman who commented.

    Reply
    1. 5.1

      Sandy

      I am in Halifax. I don’t know where you are but there is great support and knowledge and doctors and nutrition help here. I have been celiac for 23 years. If you want local support, perhaps we can connect through GD. Or, I may be able to help you find the support you need. Keep following GD – he’s on the right path.

      Reply
      1. 5.1.1

        Storme

        Not sure if this is how to reply to an individual -Sandy, but giving it a try. I am in St. Martins NB, 1 hr south of Saint John. We moved here from Halifax but rarely return (seasonal business then winter). I tried the email for the SJ Chapter of the Canadian org but didn’t receive a reply. Do you know anyone in SJ who is celiac? I am not surprised there is much more in Hfx. Not sure what else to ask, but thank you for the message. Storme

        Reply
    2. 5.2

      Jacqueline

      Hi Storme,
      There is so much to learn about celiac it can be overwhelming, especially when you are in the midst of feeling really sick, freaked out and scared about what’s next.
      Because our digestive systems are compromised we are not absorbing the nutrients we need from food. If your diet consists of any processed foods your body is even more compromised because it is trying to deal with all of the chemicals and additives instead of just absorbing nutrients from food and working overtime to begin to heal without the damaging effects of gluten.
      I’ve been on the SCD diet for 2 years…diagnosed with celiac almost 9 years ago.
      Scd is really the only diet I can honestly say helped with IBS symptoms.
      I don’t eat red meat, haven’t for nearly 50 years, but had to introduce fish and chicken to my meager diet as I had developed so many food sensitivities. No grains, dairy, night shades, broccoli, cabbage or anything else that sets my IBS off. You just have to experiment and do what is right for your body. We all have our own triggers.
      The cleaner you eat the better you will feel.

      Reply
    3. 5.3

      Sybil Nassau

      Keep this is mind: YOU ARE NOT SICK! You have an autoimmune disease forcing your body to attack itself. Once you get through the quicksand and find firmer ground, you will begin to feel better than you ever did. SICK has a negative connotation so if you call yourself sick you will feel sick. Get off that bandwagon and tell yourself you are a healthy person with a condition that cannot be cured but can be managed successfully with vitamin supplements, probiotics,
      non-processed fresh foods, healthy proteins, and proper gf grains. As long as you have the internet be very careful not to believe much of the misinformation out there,, and stay away from the processed foods as long as you can.
      Good luck, and yes you can trust this website and a few others.

      Reply
  6. 6

    Amanda

    Wow, this hits home. I was diagnosed just over a year ago and have been gluten free ever since. I have only been glutened twice in that time, once just over a month ago, and it was awful both times. But what’s been worse is that I don’t feel better on a day to day basis. My endoscopy revealed pretty extensive damage so I know it will take time, but can’t I feel at least a little bit better now?? I broke down in tears last night because I have been horribly sick for the last week and a half even though I haven’t had any gluten. I’ve figured out that dairy was causing it so I’ll be cutting that out too. Great, more foods to give up! I’m really trying to stay positive but its hard when I feel awful and it seems like all food is out to get me. This disease really sucks. :(

    Reply
  7. 7

    Jennifer

    September will be two-years from my Celiac diagnosis and I’m still struggling to heal. Some days are better than others and GD is right, I believe that other foods are the culprit. I’m suspicious of dairy, corn, soy, rice, sugar, eggs, night shades, and beans; but it is just taking me longer to figure it out because I just don’t want it to be true, yep I’m working through denial, and right now…I’m okay with that. So when I am ready, I will work on my next journey of elimination, but at the same time am limiting how often and what I eat out of those other things. As another put it, some days I am pissed off at the world and other days I’m proud because I will make a meal or enjoy a meal that looks so amazing that people are baffled that it is gf.

    There is no right or wrong answer here, we all have our own journeys to figure out what will truly heal us. Hang in there, connect with others on blogs like this and take one day at a time. It is all anyone can ask of you. Good luck!

    Reply
  8. 8

    Jennifer

    I had TONS of anxiety before realizing gluten was a cause, or at the very least a huge contributing factor to my anxiety and panic attacks. I, too, was suffering from extreme, and sometimes sudden, fatigue. One doctor told me I was just a little anemic and to reduce my stress (translation…it’s in your head). Another doctor recommend I have the NovaSure procedure to get rid of my periods and that would fix the anemia and fatigue. Nope. Didn’t work. The panic attacks were happening more and more often and I would have to fight myself not to run to the emergency room every time because I thought I was having heart problems ( a heart doctor had already told me my heart was fine but some of symptoms led me to believe he was wrong). I felt crazy.

    After going through this for years I read something and decided to go gluten free. I should have requested Celiac testing at this point and if I could do it over I would. Regardless, the treatment would be the same. Within two weeks I saw major improvements, but I did continue to have symptoms and some anxiety. It’s been over three years now and I feel so much better than I did then…if I watch what I eat. Looking back I realize three things. One, my body needed time to do some real healing…no instant fixes. Two, I had to really learn how to take cross-contamination seriously. Seriously. I was still eating french fries at restaurants…now I don’t. No food is worth the consequences I feel. And third, I am also sensitive to other foods. I CANNOT have msg (monosodium glutamate). I might get diarrhea, a migraine, or even horrible joint pain if I do eat it accidentally. I also started avoiding corn most of the time unless it is organic. I don’t know if it is the corn that bothers me or the herbicides (like Round-up…glysophate) that they spray on our crops. Either way I feel better if I limit corn.

    It will take time to fine tune how you feel. Just know that each step you take towards health is a victory and even though it seems to be progress using baby steps…one day you will look backwards and go “Whoa!” I really do feel better than I did (last year). Good luck and keep reading Dude’s articles.

    Reply
  9. 9

    Jacqueline

    Hey Dude,
    This is exactly what I wish someone had told me.
    I would add that celiacs are probably mal nourished and desperately need to eat whole NON PROCESSED foods. The sooner you do this the better as your body will not be reacting to all of the additives while it is trying to heal. Doctors aren’t taught nutrition or preventative medicine.

    Reply
  10. 10

    Anne

    My first suggestion is to read Jennifer’s Way by Jennifer Espisito. She had significant nerve damage and needed to take meds as her system healed.

    My fingers used to get numb every night, when I stopped eating gluten that went away. But if I get glutened, it happens the very same day. That is how I found out my nerves were affected. But didn’t realize until 6-8 montages after diagnosis. It was Dermatitis Herpetiformis that clued me into my CD.

    It also keeps me from cheating, because you would be willing to cut your skin off yourself with that stuff!

    My suggestion to everyone is to check out NAET. I did it for 18 months well before my CD diagnosis and it got rid of most of my brain fog, lethargy and other issues. It’s a type of energy medicine. It’s not covered by insurance unless you live in Washington or Oregon. But it gave me my life back well before I knew what was wrong with me. Worth every penny in energy and quality of life.

    Reply
  11. 11

    Sharon

    I was diagnosed 5 years ago. I am very careful with my diet and eat 99% whole foods. My celiac symptoms were/are neurological. Tingling in my hands was the first thing that showed up 20 years before diagnosis. By then, I was having trouble with a nerves in my head, my neck, and then feet and legs. I am much better (confirmed with diagnostic testing), but my nerves may never recover 100% – there’s just no way to know.

    I also had bad brain fog, anxiety, fatigue, depression, and avoidance of social interactions. All I wanted to do was sit down and be left alone. These symptoms took 8 months to resolve. It was surreal when all those symptoms finally lifted. I felt like I was on speed or something, but I actually was just my old self in thinking speed and in energy level. And I’ll never forget driving on a tall, curved, highway overpass that used to terrify me and realizing I was having fun. That was the day I realized my anxiety was truly gone.

    My muscles took a major hit from the lethargy and nerve problems. It took a long time to get in better shape because I had to do it slowly due to the beginnings of muscle atrophy in my feet. And due to my sensitive nerves. (no high impact, no barefoot work outs, etc.)

    I had to do a low FODMAP diet due to my stomach being a wreck. I have a huge number of food intolerances that haven’t gone away. To be fair, the cause of this may not only be celiac. I’m also hypermobile, so my collagen may not be in the best shape.

    Almost forgot. Anemia. I finally had to get IV iron last year to get my ferritin levels up. My body wasn’t absorbing the iron pills. (Make sure you get your ferritin level as well as serum iron if you get tested. My serum iron was normal.)

    Recovery is a long road for some people. It can be frustrating, and you may have to do all the legwork yourself in pinpointing food intolerances and medical problems that come up. So be patient. Give yourself slack on days you feel bad. But if you feel there’s something more than celiac going on, be persistent in figuring it out.

    Reply
  12. 12

    Claudia

    I didn’t feel better right away either. I got diagnosed with Microscopic Colitis and had the runs for three months and lost weight. So much that my family thought I was anorexic. I have good and bad days. Even though my intestines healed after six months, I still have days where I am going in slow motion.

    Reply
    1. 12.1

      Gluten Dude

      So……….do………..I………

      Reply
  13. 13

    Renee

    I suffered from terrible anxiety, and job stress made it worse. I also have thyroid disease and to get through the first few hours at work I had to take a selenium, magnesium and zinc supplement to calm my nerves. Those supplements saved me and eliminated the anxiety, I never have that now. Many Celiacs don’t do well eating any grains, so after I went grain free as much as possible, I really started to improve. Eating as clean of a diet as you can, organic, grass fed, following paleo principles of making your own food, etc. will really help. The key is to heal your gut, read as much as you can on healing your gut and the microbiome, take good quality probiotics (I take a 50 billion pill each day), eat fermented food, drink bone broth, and eat anti-inflammatory foods. Your gut produces 95% of your serotonin so that’s why the depression isn’t going away. Patience is huge, took me 3 years to start to feel like myself again. All the best on your journey.

    Reply
  14. 14

    Storme

    Wow. I’m overwhelmed and grateful for all the advice and information. Thank you all. I have more hope now than despair. As of yesterday, I have stopped eating any of the GF foods -cereals, crackers, cookies and bread that I was eating. I hadn’t planned on eating them long, just thinking at the beginning of this change, I would to give myself a break from having to relearn baking, but obviously this is the worst time to indulge, so that’s that. There is so much to think about in all your posts. It is also helpful to know what others’ journeys are like as it puts things in perspective. I’ll be hanging around. Thanks for the welcome.

    Reply
  15. 15

    Jennifer

    I have to say I am so happy to have found this site. For me my problems started way back in around 2008 at the age of 28. The job I was in was uber stressful, and I was trying to plan a wedding at the same time. During this time I had an influx of what I thought was a sinus infection, and I got antibiotics to remedy it, but it never seemed to go away. As the years progressed, my symptoms seemed to get worse, brain fog, and no matter how much I slept I would wake up not feeling at all rested. It was getting to the point I was starting to wonder what the hell was wrong with me because I constantly felt “off”. The worst was when the Migrane Auras started, with one of the worst being one that I temporarily lost vision in my right eye, yet I still had peripheral with the shimmery zig zag around the edge. Then a few years ago my husband and I read the book Grain Brain. Suddenly the symptoms he identified in that book seemed so much like what I had been dealing with, so my husband and I decided to at least cut back on the amount of gluten we were taking in, while trying to do better in our grain choices. Still having the occasional sandwich or grinder, but not on a daily basis. It was once I cut back on gluten that my symptoms got 100% worse. Thats when I started to have the digestive issues, primarily a lot of gas, and I was living on tums and ginger ale almost constantly. Not to mention the constant migraines, body aches, numbness that would come and go. I constantly felt like I was dying and it scared the crap out of me. I used to love to drive, and got to the point that I utterly hated it for fear that I would have a migrane or some other issue while driving somewhere. It has probably been about a year since I gave up gluten 100%, and even now I still don’t feel back to normal. I stopped the pill because I found there were potential issues from the synthetic hormones I had been taking for so many years, coincidentally started with the pill right around the time all my problems started. Found gluten in my makeup and skin care products. And just recently found that a shampoo I had been using for years, yes I was a WEN girl, could have been causing me more harm than good when I just realized I was losing my hair as well. I have been an utter wreck. I hate leaving the house for fear something bad will happen. And I am scared of the thought of having to eliminate even more, like corn and dairy, since tostitos are one of our go to chips, no to mention the only pasta I can eat. I have had days that I have actually almost felt like my old self, and then it quickly disappears on me. I could cry right now cause I’m so frustrated, but won’t cause I’m at work. We only drink the Tito’s vodka since I swear I was having reactions to the other brands. Pinacle used to be our go to. I have not officially been diagnosed as I just eliminated foods based on trial and error so I don’t know if I’m truly celiac or just intolerant. I have even found that I need to avoid foods containing Carrageenan, as that seemed to cause my symptoms to flare up. I am trying so very hard to stick to as much of a whole foods diet as I can, but its so very hard, especially when my husband and I both work FT so crockpot meals have become our go to. I even seem to have problems with spicy foods like hot peppers which I never had before. I just want to feel better!!! I will say I am so happy to have found this site because at least I now know I’m not alone.

    Reply

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