Celiac Rant: Gluten-Free and I Still Feel Like Crap

gluten free still sick

Hello everyone. Happy Tuesday to you all. Let’s start with a joke today because why not!?

A photon checks into a hotel and the bellhop asks him if he has any luggage. The photon replies, “No, I’m traveling light.”

No good? How about this one?

Pavlov is sitting at a bar, when all of the sudden the phone rings.
Pavlov gasps, “Oh shit, I forgot to feed the dogs.”

Ok…today’s order of business is a reader’s celiac rant. It’s been too long since I posted one of these and I have 140 of them sitting in my inbox. This comes from a frustrated celiac whose doc said she’d feel better by going gluten-free. As we all know, it’s not that simple.

If you would like to help her out and make a comment (bless your heart), all I ask is that this does not turn into a “paranoia post” where gluten is everywhere and you must live in a plastic bubble if you want to stay healthy.

Remember. Careful is good. Fearful is not.

Ok frustrated celiac…the floor is yours.

———————————————————————–

First-off, so glad I found your site! I was diagnosed with celiac 3 years ago this past November (11-11-11, talk about an omen!) and unfortunately, am in just as much pain and unpredictability as I was when diagnosed. Granted, I probably had it for 7+ years when I think about the symptoms, but I was one of the “lucky” ones that was told right after endoscopy that “I will feel like a new person within 6 months of going gluten-free.” This, from the HEAD of GI at a major Portland, OR hospital!

I travel for business about 2 weeks a month and am just spent trying to make excuses for why I cannot partake at big exec dinners (I hold a fairly senior position). That however, is not the reason for my “rant!”

My challenge is that I know I need support nutritionally, and also worried about all the other symptoms I continue to manifest (DH rash for the first time last October for 8 solid weeks of hell and oh did I mention, I am a trainer in front of people on a regular basis?!).

I have also had my teeth continue to decline (need two more pulled as they go so quickly; cannot be saved as my nutrition is declining, rather than improving since going GF) and cannot sleep more than 3-5 hours per night.

I do not trust any of the medical direction I have gotten: I a reasonably intelligent person; I am confident in my abilities to control and address cross-contamination (I do not eat out at all, only buy certified GF products without cross-contam clearly stated and only about 5 regular products at that and only eat cooked meals that are by me or my husband’s hand – he is probably the most devoted to all of this being recently unemployed and generally liking to cook!), but I know I need more support.

Since I removed the gluten from my diet, I also removed most of my nutrition. There is only so much I can do on the road when I may only have a refrigerator to work with, thus I get very drained while on the road and lose weight. I get home and try my best to put it back on but had a recent bout of 10-days of pain (pancreatic swelling, pressure and knife-like jabs that drop you to your knees) while home that left me drained even before I went on business. I am now in full-out brain fog that I had been mostly able to control or live with, I should say. I train credit at a major bank so I cannot “fake it.”

Given the fact that I cannot take another “GI DOC” simply telling me to buy GF processed foods that are often cross-contaminated, or being told that I am depressed (well hell, yeah, but managing the celiac will manage that!) and that I should take all kinds of pills.

This really turned into a non-sensical rant from normally, a very organized communicator. You are getting me on the last day of a business trip and operating on 3 hours of sleep. I do apologize.

I want to thank you for your reality: I do not think I would be so cracked about still feeling like complete ass if Mr. GI Head had not set me up for “6 months you will be a rock start again.” I can say that it took me 3 months to be sure I was GF and not cross-contaminated, so I will take some responsibility, but after all the “roadrash” damage he described and I saw on the DVD video of my small intestine (about the first 12″ is 86’d), REALLY??? 6-months for extensive damage and complete villous atrophy?

My Mother is an RN so we have been very rudely awakened to the “real story” behind intestinal recovery…..meaning, most of the medical community still does not acknowledge that there is no “Heinz 57” healing process for a celiac. She understands the politics and the “God Ropes” associated with medicine, in general. And of course the almighty dollar/drug rep connection. Can only imagine how “educated” docs will be once there is a money train behind a drug rep with a pill to manage celiac!

OK, my question: I am in the Kaiser system (not helping!), and would like to know if you think vitamin shots and a try with a celiac-trained nutritionist would be worth my time? My Mom, again, the RN, wants me to go PRN and admit into the hospital to rest my GI tract. She does realize that this is not terribly realistic with needing to maintain a job to pay for the health benefits, and as the only provider right now.

I really appreciate your advice, the honesty and yes, none of the “I have never felt better in my life since going GF” crap.

Looking forward to any thoughts you might have.

Thank you for all that you do.

Wish I would have found you right after diagnoses, not just last week.

———————————————————————–

I wish you would have found me too. Heck, I’m still trying to find myself some days.

Let me tackle a few of your issues as best as I can on 5 hours of restless sleep.

– Stop making excuses about not partaking in company dinners. You CAN eat out if you take the right steps. I’ve laid out your plan of attack here. Also, since you have a senior position, can you pick the restaurant? My point is, there are solutions to most problems. Don’t let fear stop you from living.

– Lord knows most of us got no guidance from our doctors when we were diagnosed. Really pisses me off. “Go gluten-free” is pretty much all we hear. No direction. No guidelines. Here…John Pinette (RIP) explains it pretty well:

– Smart move staying away from the processed GF crap. That’s a mistake many make when first diagnosed…me included. I loaded up on “replacement foods”. Bad idea. Eat smart. Eat mostly whole foods. Indulge every so often. It’s all about balance.

– Vitamin shots and a nutritionist? I’d say it can’t hurt. But will it speed the healing process? I have no idea.

– My biggest piece of advice: Be patient. It honestly took me a few years to start healing. I was beyond frustrated and kept going back to my GI and spending a small fortune to find out “what’s wrong with me”.

You know what was wrong with me? I’M A CELIAC. Our insides are messed up and this fun autoimmune disease can be a tricky little devil.

Thankfully I’ll only have it for the rest of my life 😉

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124 thoughts on “Celiac Rant: Gluten-Free and I Still Feel Like Crap”

  1. I totally feel your pain! It was about the 6 month mark after being diagnosed with Celiac Disease that I realized – CRAP – I am not feeling better, in fact I seem to be worsening.
    I chucked all the processed crap and dove feet first into an AutoImmune Paleo Protocol (with the guidance of my functional MD) and have been seeing amazing results. 12 weeks into it, and really listening to my body, my GI symptoms, etc.
    I had an appt with a GI specializing in Celiac Disease (which of course was a 4 mo wait), and I just cancelled it. Figured he wasn’t going to tell me anything I really wanted to hear!
    Hang in there…….

  2. Sorry to hear you are still struggling. I’m afraid I can’t offer much more advice than the Dude, but at least can offer some solidarity. It took me a good few years after diagnosis to feel fully ‘better’, I think a lot of that was to do with still learning the art of excluding gluten fully – it hides everywhere! When I eventually cut the substitutes and went back to a basic diet of whole foods and built back up from there, I felt loads better.

    Sadly that’s not always compatible with the lifestyle you describe. I also used to travel a lot for work, and to be honest, I found it unsustainable with a healthy gluten free diet – risking restaurants and language barriers to get a safe meal, or eating bags of crisps (chips!) for every meal made me pretty ill too. Luckily I had an understanding employer and now travel substantially less – my health has improved dramatically as a result.

    Hope things look up for you soon x

  3. After I was diagnosed with celiac disease and went gluten free I only felt better for a month or so. I began to have worse symptoms than I started with and lost a scary amount of weight. I was finally diagnosed with something called Collagenous colitis or microscopic colitis (same thing, just another name for it) it’s another autoimmune disease that is associated with celiac disease. You could possibly have something else going on like I did. Or just poorly healing intestines?

  4. I was told it would take 1-2 years to heal. And that is if I wasn’t “glutened” a couple of times. Careful as I am, of course it’s happened. But yeah, you can’t lock yourself in a tower. Sometimes we’re going to feel like shit because it’s the nature of the disease.
    Adjust, adapt, find what works. If anyone asks why you’re not feeling well, tell ’em. If they don’t get it, shrug your shoulders and move on. Celiac isn’t a head cold, or a mosquito bite. It is a major, life changing condition. Going gluten-free, I’m learning, is only one part of having it. It’s affecting me mentally, emotionally, physically, socially and a lot of other -allys that I can’t think of right now. Just keep pressing on. You’re on the right course.

        1. I still am waiting a diagnose but was instructed to go gluten free anyways after doing an illumination diet at home. It’s been 5 months wait for the specialist and whenever I called I am still just on the waiting list…. don’t even have a appt yet. But even being gluten free as best as I can, I am still constantly getting glutened and feel like absolute garbage all the time. For frig sakes my shampoo has wheat … took me a while of dealing with dandruff (disgusting 😔) and rashes all over my neck to come to that conclusion. It’s really tough and I am so frustrated because I just want to know if I am celiac or not. My Dr is pretty certain,but I just don’t want to admit it until I have the absolute proof in front of me. I know I would be at least gluten sensitive- this much is already obvious…. but celiac seems Alot harder and more work then just regulating diet. You guys all rock, and are some pretty tough people!

    1. Hi Ken.
      I have been VERY sad about my progress as of late, I finally made the 3 month mark without a mistake and the bloating still is not gone. I was screaming when I did the tape measure and my wife was quite upset but I just don’t know what to do, I wish there was a support group or something in Grand Rapids I could talk to. I was ready to go back to the 9 yrs of undiagnosed simple ” gluten intolerance” but I grabbed a brain, there is no going back any attempt will just be barfing/diarrhea/combination of the two/ sleeping for 2 days. I lose hope sometimes folks . I suppose I should take solace in the fact the sores are gone ( why in pairs? ) I have more energy , I am handsomer than ever :0) but I still feel like a beach ball about to explode.

  5. Rhonda Gilliland

    So sorry you are still feeling horrible, I too am still struggling to heal after my CD diagnosis. Seeing a naturalopath physician(NMD) has helped me, she put me on supplements that I need due deficency. She did extensive blood work so she knew what I was lacking. I did have to pay out of pocket though. I am finally feeling better, it’s been 2 yrs.
    good luck !!

  6. Can you take a sick leave for a little while? Even a week of sleep and healthy food will help. Check all your soaps, etc too. Even lipstick can have gluten.

    Have some good, quick options to grab. For me, it can be anything from canned beans, to hard boiled eggs, to cold boiled potatoes.

    I’ve found I do better with more fiber, trying to get a gf diet with enough fiber is tough.

    And yes, sometimes it stinks.

    A hospital stay won’t help, as you won’t get really nutritious gluten-free food. But if you can afford it, maybe a spa week or something?

    1. Sick leave is an employment and career risk for sure. I went through this, and, shortly, I’ve returned to working for myself.

  7. I feel the same way! I was diagnosed 1-2012 and in the last 8 months I have had two bouts with DH, why I keep asking and no one seems to have an answer. Thank god I work in an office alone with all the itching I am doing!! The doctor is see, who I feel is clueless about celiac disease now wants me to see an allergist!? I really do not know what they are going to help me with, but I am desperate to resolve the rash. I also think that each time I have a break out I get prescribed dapsone and while this might alleviate some of the symptoms, it also wreaks havoc on the gut.

    1. Hi Betsy,
      I started going to my wife’s naturopathic doc and had the same issues with the itchy ( weirdly matching ( same spot on both legs , same spot on both elbows, ankles, you know the drill :0) itchy sores.She gave me Triamcinolone Acetonide , it has worked wondered with just a few applications , in a few days the sores are just the usual red marks :0)
      Hope it helps
      Stew

  8. After being gluten/soy free for over 9 months, my symptoms started coming back but with LOW energy and severe depression. My GP told me to check my toothpaste because this could be a hidden source of gluten and she prescribed an antidepressant. I passed on the antidepressant and decided to start seeing a naturopath. She had my thyroid antibodies tested (not tsh) and they were extremely elevated = Hashimotos Thyroiditis, an autoimmune thyroid disease. Most medical doctors only test tsh. I am now taking tyroid supplements and feeling better.

    1. Janet, I had the same experience that you describe. After one year on gluten free, I was still feeling off, so I did the Whole 30. I felt great for about a week, and then started going downhill from there. I knew something else was going on, so I had to demand that my GI doctor order tests for Hashimoto’s. (The first doctor I saw said I couldn’t possibly have Hashis because I don’t have a goiter. *Smash head into wall*.) As it turns out, I had antibodies for Hashis. Now I’m doing the GAPS diet trying to get to the root cause of my autoimmune dysfunction. I went through the same experience as the person who wrote to Gluten Dude. I was CONVINCED there was gluten CC happening somewhere in my diet, but nope, it ultimately wasn’t gluten at all. I think when dealing with celiac, it can be easy to obsess with the big bad “g,” but there are often other factors involved, and it can take a long time to figure out those unique factors that are affecting each of us.

      1. I agree. It’s not always about the big G lurking everywhere…(like you, when I did whole 30, I found I had HIT). …but she said she developed
        DH and there’s only what thing that makes that happen.

  9. My only other suggestion might be to find a good probiotic. That seemed to be the turning point for me. I take Align, but I’m sure there are better ones out there (Irish Heart has given a recommendation for one on this blog several times but I’ve forgotten the name).

    For me, there seem to be cycles with this disease. We may have a while where we feel pretty good and then we may feel like crap for a few months. And for me so far, that’s been tied to getting hit by cross-contamination. No matter how hard we try, sometimes it just seems there’s no avoiding it. Hang in there and stay the course. It may never be perfect or normal, but you will find your new normal eventually.

    1. I want to echo what Musicmidget said. I was also having a great deal of pain after being gluten free for a long time, so I went back to my GI doctor begging for help and he suggested taking a probiotic. Within 24 hours (no joke) the majority of the pain was gone! Just like that. I don’t know if it will work for others the same way, but it absolutely works for me. I’ve been taking it daily for several years now. It certainly wouldn’t hurt.

  10. I don’t usually comment on these things, but this one called out to me. Please follow Gluten Dude’s advice above. I was told the same thing about feeling good, and it lasted about 3 weeks. I gave up on my gi, and went to another one after being told AGAIN that I could make an appt. for 4 l/2 mos. out. That helps when you feel like you’re dying!! Back to you, the new gi was great. He listened as I read my journal, and decided to run some tests. To spare the details, I will just tell you that I was diagnosed with SIBO (bacterial issue). I was put on two rounds of an antibiotic and the FodMap diet. I felt better in 36 hrs., and it just keeps getting better. I’m not here to brag or tell you this is your problem. My point is that there could be an underlying problem that’s making you feel so bad.

    1. Hi M!
      I was wondering if you could tell me more about your SIBO treatment and diagnosis? I’ve been getting the run around, but recently a holistic GI told dm I have dysbiosis, which is same as SIBO she said. I passed a SIBO breath test; she said my stool showed a bacterial imbalance, so SIBO. An endoscopy showed inconclusive for celiac, so she said I have a gluten sensitivity and to avoid that and dairy. I am also on vSL #3 dS probiotic twice a day and Metamucil. Most of my symptoms are getting better, except for the abdominal bloating, which is driving me insane. I work out a lot, eat very healthy, and am very body-conscious. I hate looking pregnant after I eat!!
      I saw two GIs before this one, who mentioned antibiotics for SIBO, but both said they weren’t sure it would work since taking too many antibiotics had gotten me here by causing imbalance in gut flora. One said id feel better for 5 mos and then the bloating /SIBO would comf back. Another said that he’s seen antibiotics work for SIBO. My holistic GI said noooo antibiotics. For the rest of my life. As that got me in this position in the first place. She also
      Said my stomach would never be flat again and told me to use spanx! Nooo thank you! I want a cure for this bloating!!! Soooo my questions to you are: how did they diagnose SIBO for you? What antibiotic/did u take and for how long? How long has it been since you took the antibiotics? Did you have bloating? Did you have constipation? Are they better? Sorry for TMI but I am desperate for help. This whole thing is driving me insane and taking over my life.

  11. Brenda Gendron

    You are among friends…We’ve been where you are and can tell you that there is hope and healing ahead.

    After 5 months GF, I had cross reactivity testing done. Having a Celiac “leaky gut”, other foods caused my body to react just as if I had eaten gluten. Like many others, I have cut out soy, corn, dairy, etc. The final piece was cutting out dairy…it has only been a few weeks, but what a difference!

    If you haven’t read it, please pick up Jennifer’s Way by Jennifer Espoito.

    Wishing healing and peace.

      1. CORN???
        I also have ” leaky gut syndrome” and have cut out caffeine , lactose ( except cheese does not cause the D so I eat it ) alcohol and refined sugar ( aside from the gluten monster ) . I take L-Glutomine for leaky gut , but now you say allergy to CORN may be an issue? I may as well kill myself now, thanks for info.
        Stew

  12. I feel for you. I’m sure you’ve been asked about other food intolerances, but that could be some of it. My lactose intolerance mimics some of my intestinal CD symptoms. The longer you go without being diagnosed the more foods you can’t tolerate anymore. Just ask Jennifer Esposito. On the subject of brain fog, I can tell you going GF did nothing for mine. Actually it got worse. I came to the point where I had to admit to myself that I think I am actually depressed. It was bad enough that for my families sake I had to ask for help. Now that I’m on an antidepressant. My brain feels amazing, clearer than it has in such a long time. So sometimes a doc tells you that you’re depressed cause he has no other answers and sometimes you are really depressed. I also have a family history of depression.

  13. Celiac also causes a lot if malabsorption issues because of the intestinal damage— have your vitamin and iron levels checked then make a doctor talk through them noting things in the low range. I found my b12 levels were just above the line into ‘normal’ but still extremely low then added supplements and it changed my world. A nutritionist is likely a good way to go as well as a probiotic, as someone who is also in a ‘visible’ job and traveling finding out how to make your body function within your ‘new normal’ of celiac is a process. For me it meant empowering myself with info and pushing on doctors which I continue to do in order to help keep my body functioning optimally 2 years in. Stay strong!

    1. This is my advice as well. Definitely go to the doctor and have your vitamin levels checked as well as thyroid. Probably should get a CBC (complete blood count) also as this will show anemia. I just did this and found out my Vitamin D level is too low, so I am starting on extra supplements to raise it. If you are low on even one essential thing like D or B12 it will make you feel bad, and supplementation can help. Good Luck

      1. Agreed! Get the blood work done.. it took me over a year to find a gp that could tell me why I could hardly operate regardless of eating gluten free(I’m a chef/maitre d’ so when it comes to food knowledge I’m yet to find a nutritionist that I can’t match) low dairy etc
        Turns out dietary folate is predominately found in glutinous grains, and for a woman with coeliacs this is very bad news as we need folate to absorb vitamins/minerals, for brain function, and for reproductive functions(even if you aren’t looking to have children any time soon, this area still needs to function or it can make you pretty unwell)

  14. I would strongly recommend you get in touch with Maria Emmerich with her Keto Adapted website. She knows sooooo much about the body and nutrition where she can help with supplements and major healing. She will help with sleep problems. Her knowledge is far beyond anything I have come across and testimonies are endless. Give it a try…you have nothing to lose. I am gluten intolerant, fortunately not celiac but I have to endure the same issues with finding food. My email is rocrob38@aol.com and don’t mind it being published as I would like to know how you do with Maria.

  15. The Celiac nutritionist is a great idea – it helped us find some hidden gluten in areas we did not think of that seemed to be making my daughter and I chronically sick, and we were very careful. Also, at her suggestion my daughter and I gave up dairy which really helped speed up the healing process. To help heal my daughter’s DH, we ate mostly Paleo which tightened up the diet a lot and we noticed improvement within a few weeks or so. Since things improved, we have been able to take a step back and add things back into the diet and not be so rigid. But whenever things start to go downhill, that is the first defense, the diet. It’s not easy, but it really helps. We also take vitamin and mineral supplements and have them monitored about every 6 mos. Good luck.

    1. Hi Kathy! Would you mind sharing the items that you found to have hidden gluten? I’ve done a complete sweep of the house a handful of times and still feel like I’m getting glutened, and by something that’s right in front of my face that I’m just missing… Thanks!

  16. I have a celiac friend who, after a year on the GF diet, was still quite ill. Her brain fog was still very bad. She was forgetful and could not focus.

    Her doctor was shocked that the diet hadn’t worked. He didn’t pull any punches. He said there was no one in the state who he trusted to treat her. If she wasn’t recovering after a year, something was seriously wrong.

    So he sent her to the Mayo Clinic where they have specialists who had seen people like her before. They quickly determined that she had suffered brain damage from the celiac disease. A therapy plan was put into place (lots and lots of third grade math problems everyday to help rebuild the connections in the brain) and they also looked for cross contamination in her diet.

    It took her about 1 more year to recover and go back to work. But she did recover! The treatment worked!

    Celiac disease is a serious illness. If you’re not recovering it’s time to seek more help. There’s a reason why you’re not recovering and the answer is out there.

    I would suggest discussing the possibility of having a visit to the Mayo Clinic (or equivalent) with your doctor!

  17. Please check out
    theceliacmd.com
    Dr Amy Burkhart is a celiac specialist in Napa CA. Whose own celiac diagnosis led her to change her course of study & practice. Two of her children also have celiac disease. Don’t know what I would have done without her early in my daughter’s diagnosis. GI docs were not helpful at all. Dr Burkhart does phone consults and many travel to see her (who doesn’t want to visit wine country?).
    Best of luck to you. We wish you well!

  18. We have a 5 year old daughter that was diagnosed with Celiac at age 3. We were told the same thing…”just take her off gluten and she will be fine”….Her stomach aches continued, etc….to the point we didn’t know what else to do. We ended up going to a functional medicine doctor and he ran the Cyrex blood panel on her. This is a panel they use to see if there are other foods your body is reacting to the same way it would react to gluten (not necessarily hurting your gut like gluten, but your body “reacting” to it the same way) we found out of the 22 most likely foods that a celiac’s body would react to, she was reacting to 17 of them. We have cut out things like corn, soy, dairy, sesame, yeast, egg, millet, etc. In addition, we added a special combination of suppliments to her diet. We give her a product called glutagenics, a high dose of Vitamin C, high dose of Vitamin E and probonix. She is like a new kid now…Honestly, within the first week of cutting out the additional foods and starting the suppliments we noticed a different child. I would recommend looking into a functional medicine doctor within your area. All of the suppliments that we are giving her we got approved by her GI doctor at DeVos Children’s Hospital. She actually said that they recommed Glutagenics to people who have had intenstinal surgery to help speed up the recovery process. Good luck!! Hang in there….it is super frustrating at times, but hold on to the thought that this WILL get better…you will find the right doctor/person that will help you.

    1. Agreed. Helping balance out trashed gut flora and doing enzymes as well helps me to actually digest what I put in my face.

  19. You can travel and take nutritious food. M&M’s and Fritos aren’t the only shelf stable or easy to pack foods. (I try to tell myself that lol) Nuts, dried fruit, nut butters, whole grain crackers, etc. Freeze things, hit a grocery, etc. But I think someone like you can figure that out if I can? It can be difficult but it sounds like you have done a lot of difficult things to get to your position in your company. It just takes a little common sense and planning.

    So I am suggesting that you think about if you are letting your health slip and using work travel as an excuse?

  20. I really feel for you. I am now in my fourth year after diagnosis and it has only been very recently that I feel anything close to normal. I made all the beginner-celiac mistakes post diagnosis (listened to my GP – not that he had anything useful to contribute; ate tons of GF replacement products (and gained 15 pounds); did not rule out other sensitivities, etc, etc.). By trial and error I discovered that I am also sensitive to citrus and that I definitely have problems with gluten accumulation (too much of a little (under 20 ppm) gluten = a glutening). I only really started feeling better two months ago when I cut out all processed food, even products labelled GF or not containing gluten ingredients. And even so, I do have really bad periods (just had one for a ten-day stretch) when I do not have a clue as to the cause of the misery.
    But I can only echo GD’s advice: don’t give up on living!
    P.S. I found GD after a very frustrating check-up with my GI last November. When I complained about how crappy I continued to feel, his answer was (freely translated): tough s..t, that’s life, learn to deal with it. (And this is a truly kind, competent and caring doctor! Can’t imagine what the bad ones are like). There are lots of good people around here, not least GD himself.

  21. I travel a lot, too. I have had reasonable accommodation under the ADA with two employers. That said, flagging yourself as a protected class (read: litigation risk) is a great way to slowly lose your job (read: suddenly you will suck in your performance reviews). Go cautiously. My accomodation allowed for per diem flexibility on meals, baggage excess fees to take extra food prep and dry goods, and going over budget for a hotel with a full kitchen.

    In terms of nutrition, I know the feeling! Getting all my nutrients helped me feel better, and an anti-inflammatory diet (no white foods like sugar, etc.) helped a lot, too.

  22. I’ve been on this road since 1999 when no one knew what gluten was. When I read this story my first thoughts are dairy products. Gluten and the protein in dairy, casein, are the most difficult things to digest, any problems in the stomach and you will have difficulties with BOTH. You could do a 21 day elimination of dairy products, along with being gluten free and see if you get some relief.

    Also try as much variety as you can. Often when people are told they can’t have gluten or wheat or dairy products they immediately try to find a “go-to” replacement like corn or soy and then everything they eat is corn, corn flour, corn pasta (for example). Our modern food habits have lead us to singular food sources like wheat which is in everything. Back in the old days many types of grains/flours were commonly used. In our house we no longer eat corn as a vegetable because our cereals and some pasta and some bread we eat are made from corn.

    I found excellent recipes for gluten free cooking in really old traditional cookbooks: doughnuts & gnocchi made with potato flour, potato bread, shortbread from rice flour, corn tortillas, arrowroot cookies etc.

    Good luck, listen to your body instead of doctors.

  23. For the first four years after going gluten free, I felt great. Year five, I felt like crap for the entire school year. I read this blog post from the Celiac Diva and had my dad, an endocrinologist, do some research for me.

    http://www.theceliacdiva.com/im-gluten-free-and-still-sick/

    This past year, I started taking pancreatic enzymes and a multivitamin every day. The year I didn’t feel well, I had stopped taking a multivitamin, after taking one every day for years. I don’t know if that was part of the issue.
    My dad gave me a great article about refractory celiac disease, and it mentioned the issue of low pancreatic enzymes and copper deficiency in some celiacs, so I made sure my multi-vitamin has copper in it.
    That year I did not feel well, I was also stupidly eating Udi’s Artisan Granola quite frequently, which I didn’t realize wasn’t certified gluten free. The darn packaging looks so similar to other Udi’s products, and says “wheat free,” and had no warning label like Bob’s Red Mill products that might contain gluten, so I never noticed it didn’t say “gluten free.”
    So, I am not totally sure why I am feeling better, but thankfully I am. Maybe it’s a combo of the pancreatic enzymes, a multivitamin, and cutting out that granola that have helped.
    I pray that you are able to find some answers.

    1. Holy smokes!

      I tried to find the UDI’s artisan granola…because I was shocked to hear they have a NON-GF product, but I cannot find the product on their website.

      Did they discontinue it?

      thanks, IH

    2. All Udis products are certified by GIG. Not sure what you ate? Unless you live in the Denver area and ate something from the Udis family bakery/ cafe? Not everything there is gf from my understanding. But the gf Udis products found all over the country are certified.

  24. GD-
    Great post. Love the Pinette clip. Going to miss that guy. To the ranter-looks like you have a ton of great advice. Take it a day at time and try the different suggestions. When I feel like crap I usually fast for a day and let my system calm down. Other than that, I like the spa idea. If you can, go to a detox one. Like you said, you have been poisoning yourself for years, it is going to take a hell of a lot of time to heal. Screw what the GI doc said, everyone is different.

    xo-
    Jersey Girl
    —————————————-
    “What do they give you for a side dish in England for breakfast? Home Fries? Hash Browns? Fresh fruit? Nay, nay. They give you beans. Oh, good. Let’s start me off in the morning: empty stomach, cup of black coffee, and some beans. Now let’s walk me around London for a little while, getting me all churned up. Put me in a taxi and see what happens. I blew the doors off the taxi.”
    John Pinette
    .

  25. Thankful for Whole Foods

    I remember seeing my GI after 3 months GF and she asked if I felt like a whole new person with more energy. NO! I had some improvement digestive wise but I was starting to have ocular migraines and an episode where I couldn’t find the words I wanted to say. My hands shook if it had been more than an hour or so since I ate. I went to a great natropath who put me on b12 shots, a vitamin that is easier for people with messed up digestive tracks to absorb, vitamin d, calcium to treat my osteoporosis, high dose magnesium and b2. The GI had said my iron levels were fine but according to the ND I was deficient so I started iron too. I also needed to cut out other foods – dairy and almonds and limit high fodmaps. I also went to a psychiatrist and got help in dealing with the emotional ramifications of having a disease that will never go away. She also had me take an antidepressant which was hugely helpful because I was severely depressed and not up to being an advocate for myself with what I needed to eat. I have tapered that medication off now to just a bit. NOW, it has been 10 months, have more energy but still take tons of supplements and still sometimes have an achy gut. I am thankful that the GI diagnosed celiac and sent me for a bone scan to discover the osteo (I am 44) but she was not able to do all of the follow up stuff I needed. We celiacs need more care after diagnosis and I encourage everyone to pursue naturopathic and any other resources you can find to help you.

    1. I am curious to know who else has these migraines. I just got over (well almost over) an episode that including my colon being inflamed for about a week (sore abdomen). I had what I would consider a migraine on the right side of my head (never had one before and it basically freaked me out). It came and went for the better part of 5 days. The doctor I saw said she didn’t know why I had it and to take a prescription dose of ibuprofen, that’s it or to come back in if the pain became severe. Ibuprofen would help for awhile and the headache would come back. I asked if the headache was related to my inflamed colon and she said she did not know. The pain was not unbearable but I was nauseous, dizzy, very tired, hurt to look sideways with eyes, and the scariest part for me….I had a hard time coming up with some words (like you said above). I told my husband that “I feel so dumb.” I have gotten over it, but not sure if fully. It almost feels like a “pre” headache coming on without actual pain. I thought I was eating GF and have been the most diligent about cross-contamination that I ever have (1 1/2 years GF) but have twice had problems after drinking coffee. So maybe that is setting off these symptoms. I wondered about nutritional supplements, but was unsure on what would help. I have not been able to locate a natropath in my area. This scares me. It makes me think of having dementia. I am a teacher and I can’t afford to “zone out”. I may have to get my vitamin levels checked (but very expensive). Thanks for posting.

      1. Thankful for Whole Foods

        Jennifer, I am so sorry to hear about your migraines. I went to a neurologist for the migraines/word finding issues. He had me start taking 400mg of B2 (hard to find but you can order it on Amazon) and 400 mg of magnesium everyday. He prescribed a medication but I elected not to take it because by then I wasn’t having them any more and I didn’t want to take anything I didn’t absolutely need. He wanted me to try to find an association with a food trigger, but I wasn’t ever able to figure one out.

  26. Thought you might want to check out LifeLine Foods. They are actually supplements, but are gluten, dairy free.. and my husband has been using them for a few months now, and they appear to be helping. http://www.lifelinefoods.com/nutrients/ My husband was diagnosed about 18 months ago, so we completely commiserate with your problems. As one of the other folks posted, he has had to completely eliminate dairy as well, but is doing much better. These vitamin supplements (especially the sleep aid and Vitamin D3) have really worked for my husband. I am going to get the joint ease and the Acai complex for additional nutritional support for him… Best wishes and please feel encouraged that you are NOT alone!

  27. One last comment… I diagnosed my husband…. 5 colonoscopies, 2 endoscopies, sigmoidoscopy, several trips to Vanderbilt, multiple trips to dermatologist, nephrologist, etc. etc…. and NO ONE thought to test him for Celiac…. I saw an article featured on YAHOO! and he had ALL the symptoms and so began our (his) long road to recovery…. again, TRULY best wishes…

  28. A couple thoughts. Have you been tested for lactose intolerance? Also get allergy tested. You may be eating food that you are allergic to on top of the gluten problem.

    1. Betsy in Michigan

      Many food allergies are are DELAYED reactions, so will not show up on allergy tests. I have a very sympathetic and receptive allergist (for environmental allergy issues) who has confirmed this. My gluten “allergy” doesn’t show up until a day later. The awfully itchy eczema from eating soy, at least a couple of days (and I’d been okay in the past snarfing a few of my kids’ Trader Joe’s GF Jo Jo’s). Something I read recently indicated that sometimes your body will be able to handle a certain amount of food allergens, other times it builds up. Haven’t done any searching to confirm this.

  29. I was struggling and finally quit trying the replacement foods. I bought the Dash Diet book by Marsha Heller. I cut out everything but fresh veggies and meat. I bought cases of different beans for fiber and add them to salads. Once in awhile I have a carb like quinoa or brown rice but no more gf bread, bagels, cereal, etc. I also have seen other improvements because my potassium intake went up so I had to add more salt to balance it and now I am more hydrated and mentally alert. The point is I now eat real food and don’t have a bag of chips for dinner!

  30. My heart goes out to you! Yours is, unfortunately, such a familiar story. It took me a full two years to even begin to feel better and now, another full year later, I am just starting to believe that I will eventually recover fully enough to resume a “normal” life.
    Years of undiagnosed Celiac disease leads to leaky gut syndrome, multiple food intolerances, and severe nutritional deficiencies. It can take years to heal even under the best of circumstances. I agree with the others who suggest that you see a functional medicine doctor. You must be tested for additional food intolerances – I bet that you will be blown away by the results. In the meantime I think seeing a nutritionist, holistic if possible, and taking vitamin injections would be helpful. Given that Celiac is an autoimmune disease that gives rise to other autoimmune conditions an autoimmune protocol, or paleo type, diet will likely be suggested. Until the leaky gut is healed a rotation diet is also important so that you don’t develop new intolerances to foods you commonly eat.
    As far as the travel goes, it’s a challenge, but with some planning and practice is totally doable! My gluten intolerant husband also travels extensively and I have recently begun joining him again. I learned the hard way that I only eat at a “gluten free” restaurant if it has been endorsed as safe by 3 Celiacs. Sometimes that means eating at the same place every time, but I don’t get sick! I also learned that you can’t always depend on a safe restaurant, so I usually just go prepared to feed myself every meal. I combine my mindset from camping with a hotel stay and it works very well. I take a little suitcase with an electric frypan, a few supplies and plan a simple but wholesome menu that includes picnic style items you can take for lunch. Hotels will provide a fridge free of charge for medical conditions. If driving I pack a cooler with pre-prepared items, if flying I hit the local WholeFoods Market for perishables. I won’t go into the menu details here but feel free to contact me if you’d like some joykate65@icloud.com
    The final piece for me in beginning my recovery was stress management. I didn’t realize for a long time how stress, and my reaction to it, made my autoimmune conditions flare up. Obviously you can’t hit the spa for the next couple of years to heal, but there is help to address this issue too. For me developing a practice of meditation has helped greatly; others may find cognitive behavioural therapy helpful.
    Best of luck to you, there’s a huge community here to help you along the way so take advantage of it!

  31. Hi,

    I am sorry that you are still feeling lousy.
    I’ve unfortunately not able to read others’ comments because I am sneaking on here during work, but I did recently write an article about nonresponsive celiac disease for Gluten-Free Living Magazine. You can access my article for free on the GFL website right now: http://www.glutenfreeliving.com/the-magazine/featured-stories/diagnosis-doesnt-help/.

    I personally experienced some lingering symptoms due to having an additional immune system problem called Mast Cell Activation Disorder. I was diagnosed with this in 2013 via my allergist and starting on medical treatment for this has helped a ton. Like you, I experience the knife-like pancreatic area pain and brain fog as the result of having overactive mast cells and too much histamine. I’d be happy to provide more information if you are interested in reading more about this and I have also written about this on my web page too.

    I hope you are able to find answers and that you are able to feel better. GD, I hope that you don’t mind me sharing the links on here 🙂

    Jess

    1. Thanks for posting this. Unfortunately for many with Celiac, going gluten free just doesn’t do the trick in making us totally well. The problem is that we have autoimmune problems, and Celiac is usually just one of them. Granted, it may the one that started the entire cascade, but rarely, especially if someone went years (technically, I think we are born with it, we just don’t always show symptoms right from birth) before being diagnosed, will it be the only autoimmune problem we have. If you don’t get better going gluten free, there are also usually other foods that are triggering a problem for you. For me it was nightshades, eggs, and milk. I can handle the fermented dairy, but not any dairy that isn’t. I also can’t tolerate oats or buckwheat. Those are not foods containing gluten, but having Celiac means you may not be able to eat a whole lot of foods. You have to learn what you can eat and stick with it. Boring, but life saving.

      1. We are not really “born with celiac disease”. Dr. Fasano, et al. have researched this ad nauseum.

        yes, we are born with the “potential” to develop celiac IF we:

        (1) have the genes

        (2) are given wheat/gluten to eat at an early age

        and
        (3) trigger it somehow through physical trauma or illness.

        You have to have this triad going on.

        And having the celiac genes does not mean we are ‘destined” to have it either. Many people have the HLA-DQ2 and DQ8 genes and never have celiac.

        “up to one third of the U.S. population
        has the genes for celiac disease, but it
        is thought that only 1-4% of them will
        actually develop the disease at some point
        in their lifetimes. ”

        So much misinformation out there. people…read the science. .

        http://www.uchospitals.edu/pdf/uch_007936.pdf

        1. So then the little baby who has it and shows a very early on failure to thrive must have had a very traumatic birth as their stress trigger? There is a TON they don’t know about this disease and what causes it to manifest. And I DO read the science. Why do people have to get weird and all knowing about this stuff? Even Dr. Fasano is still finding out new information about Celiac Disease. Nothing is for sure when it comes to this disease, and none of us are made exactly the same way, so what is true for one person may not be true for another. The world is not black and white. And science isn’t either. The one who quits learning from any and all evidence is the one who will lose.

          1. well, dee, I am not one to “get weird and all knowing about this stuff ”

            and I never quit learning. You don’t know me well enough or you would never say something like that. 🙂

            I just gave you the most recent information from Dr. Fasano…and all the leading celiac researchers,….this IS the “new information he found out”.

            In fact, both Gluten Dude and I met him and we saw him say it in person during his presentation back in April and it’s in his new book.

            I don’t lie or make stuff up. I share everything I know in good faith.

            Best wishes.

            1. You are correct, Irish. In fact, I do not know you at all. I must have misunderstood what you were trying to say. You were saying that people have to have all three things to come up with Celiac, and I was trying to show that babies who have had no major life trauma except being born didn’t fit those requirements, so not all is black and white in this disease. We are all in this to help each other, not attack, and I certainly didn’t want to come off as attacking, but I did feel as if you were trying to tell me I knew nothing about this disease. I have had it with symptoms for over 50 years, so I do know some things about it. I didn’t have any major life trauma by the time I was 10, and that is when I was having symptoms, so I dunno about that requirement. Just sayin’. And yeah … we can all learn from one another, so no hard feelings, ok?

            2. It doesn’t have to be a major trauma. It could be a virus, a childhood illness, use of antibiotics for an infection, or possibly an environmental factor, any number of things that spark the autoimmunity and begin the cascade of events that may provoke celiac to trigger. The latest research suggests an unhealthy gut microbiome in the babes could do it.
              They are looking at breast feeding (and the timing of it) as a possible safe guard in babies at risk. Interesting research,

              (This is significant as good probiotics may be helpful for children as well as adults.)

              The vast majority of the carriers of the genes for celiac tolerate gluten just fine. Without an immunological trigger of some kind, these people do not develop the disease.

              So “being born with it” just does not apply.That was my point.

              Dr. Fasano’s book and various celiac center research websites discuss this. I was just sharing it with the readership.Feel free to disregard.

              Kind regards, IH.

            3. If you ask a developmental psychologist (I.e. me), they will tell you that being born is the most stressful thing the body can go through and meets the criteria for trauma. That can be enough.

            4. whose body…the mother ? the child?

              Giving birth is also the most natural thing on earth.

              If the mom is predisposed to celiac, yes, that trauma may trigger the celiac in HER.

              the babe? NO evidence to validate that thought.

              Sorry, I have never seen a single Pub med article on this at all.

              if you find one, please, do let me know.

            5. Hi IH,

              I am with you on this one. I have personally taken care of thousands of newborn babies, and they overall do remarkably well, even the premature ones and the ones with “traumatic” births…i.e. the rare case of having to be born by an emergent c-section due to a dangerously low heart rate or temporary decrease in blood flow through the umbilical cord during labor.

              As discussed at the International Celiac Disease Symposium last fall, the “triggers” can vary from viral illnesses during childhood to pregnancy to accidents to other chronic illnesses.

  32. Have you read Jennifer Esposito’s book? I found a lot of inspiration from it. Basically, she’s telling us to take charge of our health and find a doc who understands CD. (At least that’s what I got from it.) I felt great for 6 months and the last couple have been rough. About 30% of Celiacs do not feel better and it’s due to something else being wrong. Some examples are other food intolerances that have now arisen, leaky gut syndrome, new auto immune diseases, etc. I cannot find one doctor where I live who understands CD in the way we need them to. So I have an appt with Dr. Green at Columbia Univ Celiac Center. I know it’s going to cost, but I went 30 years probably with this disease damaging my body. I want to get answers I can trust and believe. For peace of mind if nothing else. Good luck.

    1. Dr, Green will give you the straight answers. He is one of the best celiac docs there is!

      Go to him and bring your questions and I hope you get well soon.

      1. Thanks! My GI (who I just broke up with) refused to help me stating no other symptoms exist outside of GI ones for CD. I found myself aimlessly searching for docs near me, anyone! But there was no one. Everyone I asked on a support site said Dr. Green. So I figured I would bite the bullet and do it. No more wasting time on worthless doctors!

  33. Summarizing what others have said and from my own experience…

    B12 and Magnesium supplements if you aren’t already on them. If I go a few days w/o B12 I can start to feel it (sore muscles, gums bleed). What you may be struggling with ISNT symptoms from gluten, but simply malnutrition because you aren’t absorbing what you need. Cutting out the gluten ISNT the only thing you need to do.

    In my case B12 drops (under the tongue) or as a spray work for me. But I know for others B12 shots are required to get it effectively into your system.

    Don’t be afraid of the conversation in restaurants (“I want a bowl of lettuce with tomatoes and oil/vinegar”). I travel 5 out of 6 weeks and do dinners with clients constantly – but I manage it. Sometimes I get gluttened of course – but generally I’m ok.

    Finally, you ARENT only sensitive to gluten. Most of us have other allergies/sensitivities. I can’t eat eggs. I’m somewhat lactose intolerant (dairy in really small portions I can tolerate). Go get tested. Understand it as best as medical science will allow – then figure the rest out for yourself.

  34. I’m 3 years post-dx, and have only had a few extended moments of feeling as though my regular symptoms have abated (one that lasted about 2 weeks, longest yet(!), just seemed to end the other day, why I can’t figure out) . Little by little, sometimes abrubtly, sometimes gradually, I’ve made major changes to my diet and eating habits. Some changes I’ve yet to make completely, largely because I don’t actually know if they’ll help…and they’re major, impactful changes that could bring on weight loss (which brings on mobility issues, and a variety of other bad things). Like eliminating red meat, and fatty meat. My logic (or is it my impish inner self) tells me that I need all the foods I can eat (for weight), and eliminating the occasional steak for dinner or burger for lunch would have an impact. This assumes a constant awareness of rotational variety, to keep me sane and dietarily placated. IMO, that matters, a lot.

    After moving, bread is an issue again, and even though I don’t have much of it (maybe 4 slices a week), those tuna sandwiches suffer without it. Lunch is the hardest. Seems like there’s no time for it, and the options are fewest of all the meals (the way I like to eat, anyway). I have the (processed) chicken tenders a few times a week, and I know it’s not ideal. Certified GF perhaps, but loaded with “junk” ingredients. But it’s meat, it’s convenient…and it’s a risk assessment and rationalization. I usually have cooked peas with it, a low risk, frozen (not salted), bagged version. Frozen peas are a good snack food. And microwave popcorn is too, if you trust it. Good tasting that is, but not nearly as nice as the peas, nutritionally (but at least there are only a few ingredients). I don’t trust it completely, but my weight stays on much better with it included in my diet. Same for the almonds. Peanuts and cashews bother me, but almonds don’t seem to unless I eat too many. This perplexed my naturopathic doctor, who classified nuts together as one.

    Another big change I made was eating constantly, and I do mean very frequently, but…not too much at once. The not too much at once part is threatened at dinner sometimes (especially after a light or missing lunch), and most notably after dinner, when the popcorn alone isn’t always enough. I’ve started with raisins (a “nibbling” type food), but they seem to have side effects. But eating regularly keeps up my energy and I think my mental capabilities as well, and also keeps my emotions stable.

    I have lots of fruit (& vegetables) too, at all times of day. Okay…long story, but in short, there are still a couple of things to work out. I knowingly eat bananas even though they seem to go right through me. I knowingly eat red meat, even though eliminating it would be a good experiment. I knowingly eat late in the day before bed even though I know I don’t sleep as well doing so…in my defense on this one, weight loss seems the worst thing to deal with of all. Potatoes are a necessity, as rice doesn’t seem to agree with me (this also perplexed my naturopath). I lean toward the sweet type, but prefer the white ones, specifically the little ones). But how good are potatoes for me?

    Gluten is long gone supposedly, but yet, were the occasional prepared cut fruit offerings I would get at the market contaminated? It took me until this year to test that theory. I’m glad I did, but don’t know for sure if that in particular has contributed to my feeling better recently (like Alexis said above, maybe it’s a combo of the overall effort). I do know that the goat’s milk helps me be able to have cereal. Why was milk a tough one to solve? Because when I told doctors I was lactose intolerant, they doubted me. They doubted any milk allergy also, as did I for some (maybe irrational) reason, so I’ve been wishy-washy on the food. But cereal with milk gave me the tight, full stomach symptom, very uncomfortable & an appetite killer. I blamed it on Chex for the most part. But lo & behold, the switch to goat’s milk and I can eat cereal (Chex too) with it with no subsequent symptom.

    Perhaps a (much) more pro-active approach could have sped things up, but…I have always though I was pretty pro-active with my efforts in general. There is just a mountain to climb with regard to all we need to consider with these dietary and behavioral changes. Climb the mountain first, and it may take years…then check out the view from the summit. For anyone that has actually done this, walked up a mountain that is, you’ll know that there are a few false summits along the way, where you think “there it is”, but around the bend there’s just more climbing to do.

    I’m guessing that years 3-5 & beyond are those around the bend years, where healing is happening, but there’s more work, more fine tuning to do. Some version of a positive outlook is definitely a good thing. Not being afraid or overly hesitant to try bold moves is also helpful. And frankly, I’d lean heavily toward trying things on our own rather than leaning heavily toward doing what paid consultants tell us to do. They (seem to) often avoid bold moves like the plague.

  35. Be well, be safe, be glad. You live in the beautiful NW surrounded by hoards of local foods that will give you every opportunity to eat fresh and safely. It is a blessing to have a diagnosis and starting point to help start the healing process. I was misdiagnosed from
    age 7 and did not catch it until age 44, in my third year of RN training and school at OHSU. I have found that my naturopathic doctor has been the best in treating my symptoms and getting my supplements on the right track.
    Probiotic Lactobacillus GG is a very important part of healing and studies world wide have shown that it reverses even the most stubborn infections, even antibiotic resistant strains. Vitamin D deficiency is also very common for Pacific NW Celiacs.

    The biggest struggle that I have is feeling alone with this disease.
    This blog has changed my life, educated me on safety and
    empowered my healing. I am 2 years into healing and I know that I will be many more years before my body is strong again.
    I wish you all the best in your continued recovery.

    1. I live in Oregon as well, and would love to know if you could recommend a physician or naturopath for me. I am 5 years post dx and started feeling crappy again a year ago. I have never seen a GI or naturopath or any specialist for this.

  36. Rochelle Tornabene

    I feel your pain and I am sorry 🙁 I am in the process of getting rechecked for celiac because I just moved states, and they are checking me for ulcerative colitis, crones, and to see if im anemic. I am to the point I hate eating because anything I put in my mouth make me want to rip my stomach out. The one thing I know that helps me is Lots of probiotics, eat strict paleo, no cheating at all until you feel better, and if you are hungry but cant stand the thought of food, Protein shakes are my best friend. Also make sure you don’t have IBS that can cause you to feel like crap and have symptoms too,

  37. YOU ARE NOT ALONE! That’s # 1. So many of us heard the same thing – “you will be great once off gluten” NOT TRUE. There are SO MANY other factors.
    1- Be patient with yourself and forget about feeling better. You will feel a different “better”; remember this is an autoimmune disease and it changes and shifts at will
    2- other food allergies; dairy should be eliminated as well as soy- both cause inflammation that you do not need
    3- you should absolutely be on vit D and a great probiotic
    4- any vitamins should be a liquid or powder- so you can actually absorb them!
    5- get to doc who will LISTEN and test your blood with an IGG blood test. This test shows allergies that take place IN THE GUT! Demand it.
    6- check your thyroid !
    7- stay as clean with your eating as possible- lean meats and fish, veg and fruits.
    8- get my book Jennifer’s Way, there are so many other items I want to put here but don’t want to take up Gluten DUdes entire page
    9- tell people who don’t understand to back off. You need to heal and stress is one of the biggest reasons people stay unwell!

    Hope this helps
    Jennifer

  38. Diane Richardson

    Have you checked the gf status on any medications you may be taking? Both prescription and OTC. I do know from personal experience that Kaiser is difficult to work with and they want you to only use their pharmacy which in my past I found to be totally uncooperative and unsympathetic to those of us that are gluten free. Also checking with an allergist might not be a bad idea as I found that I have numerous food allergies that I wasn’t aware of because of the CD.

    It took me many months before I saw any improvement and I’ve now been gf for about 11yrs after suffering from CD all my life. I’m no 77yrs old so that’s a long time to go not knowing what was wrong with me.

    I hope you feel better before long and as mentioned above check out the Paleo diet.

  39. I can’t understand why anyone would be nutritionally deficient just because of traveling. A little advance planning and you can bring food with you, hit up a grocery store or find places that offer safe Gf dining. Unless people are traveling to remote places, there’s always food to be found. I have never had a problem traveling and eating well.
    Lima bean offered some good suggestions (above)

    As for suddenly developing DH well after a celiac DX, this is not very common, and according to celiac researchers, theoretically, the only reason that happens is if you are actively ingesting gluten. (nothing to do with topical products whatsoever) those antibodies only rise from INGESTION.

    I hate to point that out, but I always go for the most obvious reason first. So you’re getting it in big enough doses somewhere. .

    I hope you can figure this out.

    My celiac doc never said “just go GF and you’ll be fine”. He didn’t have to say anything anyway; I knew full well my recovery was going to take years.

    He said “you’ve been sick for a long time. You’ll have to be patient. Every year is a healing year.”

    He’s right.

    1. I figured she didn’t get the “DH” biopsied. It probably wasn’t actually DH. Maybe an allergy to something she ate or used for those few weeks?

      But I agree – go with the obvious and the common sense options first. When you get all those nailed down, then start looking for other problems. Seems silly to ignore the obvious and look for the more obscure.

  40. I see lots of great advise here, so I don’t want to repeat too much.

    A natureopath would be my recommendation for nutrition help to get your overall general health back on track.

    A good probiotic AND a good ecchinacea/goldenseal blend (tea or supplement) will help heal your gut just a little bit faster.

    I’d also recommend ALCAT testing or a food elimination diet to determine if there is other foods you are also sensitive too.

    I would also look into the thyroid testing too. Celiac and Thyroid disease tends to go hand in hand.

    I pray you find the answers you need to heal your body.

  41. I think your idea of wanting to see a nutritionist isn’t a bad one. I was also told that a few months into a gluten free diet and I would be feeling great again. I got a few months of “hey, this might be ok” and then I went downhill really quickly. My doc wasn’t listening to me and kept telling me that if I stuck with a gluten free diet I would be fine. I decided it was time to fire my doc and find a new one. I found a osteopath/naturopath who had no problem spending an hour with me to find out all of my issues. She has been a god-send! My vitamin levels and hormone level were seriously messed up plus through a complex elimination diet we discovered that dairy products were causing most of my joint and other types of pain. I highly recommend finding a nutritionist or naturopath or some other doctor who will listen to you and work with you on your journey back to health. I know you said you live in Portland, but I am a few hours south (Corvallis/Albany) area and could recomment a great osteopath/naturopath here. Starting in September she won’t be taking any insurance anymore (but has dramatically lowered her rates), but my husband and I decided that she is worth the price whether she takes insurance or not. She has improved the quality of my life 100% since finding her. I owe a lot to how thorough she is and her patience in finding answers where all the other doctors in my past had just given up. There are good doctors out there…

      1. Yes! Her name is Gael Wheeler. Her practice is called Grace Good Health and is located in Corvallis. She is truly amazing.

  42. OK, first I have to say that you have plenty of places to eat at in Portland: Hawthorne Fish House, Harvester Pub, Prasad, Harlow, Blossoming Lotus, Teote, etc.

    I think liquid vitamins are the way to go. You have to eat a lot more than the normal person because most of it will go right through. I am still trying to get all of my nutrition and I was diagnosed around the same time.

    Here is my best advice for trips. Get a smoothie blender that can travel with you. Get some ingredients that do not need refrigeration like a quality protein powder like hemp, a carton of coconut milk, bananas, a jar of Trader Joes raw almond butter, etc. Right in 1 shake you have a better quality meal than most people get.

    Also, when you are on your trips, go grocery shopping when. You get there. I know time is short, but you need to eat.

    Good luck
    Nicole in Portland

  43. I had been having symptoms for over 25 years, almost died from malnutrition, lost 60 pounds. After another daily bout with “the runs” I was done. Went to a clinic spilled my guts (almost literally) to the doctor. Next day was having a colonoscopy (sp) they thought cancer, did have to have a polyp removed in two stages. The gastro doc wanted and endoscopic just to check things out. Come to find out 98% of my villi was either totally dead or nearly there. His words to me were “You know what this means, right?” Yeah Lean Meat and green vegetables. So I asked about gluten free foods recipes etc. I have found that I still react to GF food a lot of the time.
    With medication that is more expensive than my car payment and using GF food only once a week or so I do ok. They also found that I have antibiotic resistant H-Pylori, after 5 treatments, I was done. Even medicine has gluten in it, be very, very careful
    I know this is a restrictive diet but am finally (by trial and error) figuring out how to eat.
    I had dental surgery last week and the numbing agent they used had gluten. Some people just don’t listen or care. My mother-in-law still tries to slip flour or whatever in just to see if I will react.
    Hope this helps some.

    1. As a person who has had more Celiac related dental work done than
      entire populations living in small towns…….there are no dental numbing agents that contain gluten. That is a Celiac myth. I researched this extensively before having my 3 dental implants done and could not find a single one that contained gluten. There are not a boatload of different dental supplies out there….most come from a few sources. I spoke with manufacturers and dental supply places and no gluten was to be found. I really would hate any one putting off dental work for fear of being glutened.

      FYI….I have been gf for 9 years and nearly died from Celiac Disease myself. I was down to 94 pounds at diagnosis.I am not new to this disease and take it very seriously so my research was extensive and thorough. And yes, I always feel like I have to say that so people won’t think I am someone just dissing what you said. I am all for correct information!

      Do not fear the dentist because if you have Celiac, get used to going often! We have dental problems.

      1. I am going to add my “yes!’ to this post by Gemini about dental work.

        There are no “numbing agents” that I know of that ‘contain gluten’.

        She has researched this extensively and my own dental hygenist did as well. They were not going to give me something that may contain gluten.

        You may feel like shyte after dental work (as I sometimes do) but it’s not from gluten. You may just not tolerate the novacaine. I don’t.

        I just had another round of dental work (I am 3.5 years post Dx now)
        and I not only felt decent afterwards, but I went to a baseball game .

        years of healing = better tolerance for just about everything.

    2. Your Mother in Law???..Wow.. I am with the others. She deserves the worst person award. I would never EVER eat anything she cooked and if that didn’t stop her from trying to contaminate my food.. I would stop eating when she is present!

  44. 4.5 years in and I’m *finally* starting to feel better. I take Vitron C daily…that’s helping with my ferritin/iron issues, and I take B supplements. I also travel with Jif-to-Go (yes I know it’s processed. Don’t care…it’s shelf-stable, convenient, tasty, and reasonably nutritious) and rice crackers. I buy fruit at local markets. I look for Thai restaurants…I’ve never been glutened in a Thai place. My gliaden antibodies were at less than 15 the last time I was tested. (Actually, they’ve been at that level since six months after diagnosis. I don’t cheat.)

    So I’ve got the CD under control. HOWEVER…I didn’t *really* start feeling better until my neurologist insisted I do a trial with gabapentin for the neuropathy in my feet. I’m *finally* sleeping well at night. I think that has made the biggest difference to my quality of life. I don’t know that my gut will ever fully recover…but I try not to worry about it any more. And I eat as much nutrient-rich food as I can. Nuts, cheese, berries, greens,etc. Luckily my PCP has educated himself about CD and doesn’t fuss at me about too much fat in my diet. If I went on a low-fat diet I’d disappear. I *need* those calories!

    Hang in there…and best of luck. You can do this.

  45. so much good advice–keep looking until you get answers. A good nutritionist or natureopath is worth a try. For me, I was severely Vitamin D deficient at the time of my diagnosis, once I got on supplements that helped a lot, as did probiotics. I’d have a full bloodwork done to see if you have vitamin deficiencies that can be addressed. That may especially be a problem if you are eating a very limited diet, as you indicate. As far as the work thing, I travel a lot and can get quite a bit of variety with just a Whole Foods and a mini refrigerator. It is extra work, though, and it sounds like you are worn out. The lack of sleep alone may account for your brain fog. So sorry and I hope you find some answers.

  46. I, too, would suggest having a full set of labs drawn to check for Vitamin D levels – extremely low Vitamin D resulting in unimaginable fatigue and loss of energy was my biggest problem after diagnosis. I was certainly nowhere near as sick as you were/are, but I struggled with my Celiac for 28 years before I was finally diagnosed. The probiotic for me was a complete nightmare, so I don’t take those, but I am on a whole host of vitamins & supplements to fight the fatigue and joint pain that accompanies the stomach-related issues of Celiac. Undergo a host of food allergy testing as well – that resulted in me being soy and peanut free which has alleviated my very unpleasant GI symptoms.

    I completely understand your distrust in doctors, but as someone who works in medical malpractice defense law (yes, we defend doctors, hospitals, and other medical providers) who sees the worst of the worst in terms of lawsuits on a daily basis, I have the utmost faith in (most) physicians. I’m also from Portland, Oregon and was diagnosed by my allergist of all people! I would urge you to visit another physician or specialist to try to get your symptoms under control. I wish you the best of luck in your health and happiness!

  47. I completely understand!

    When I was first diagnosised I was a college recruiter. So, on road and changing hotels daily! What a nightmare for a newly diagnosed celiac!

    First, I took extra effort to pack a cooler of food. Since I was driving to most locations, this was not an issue. Since I had control over which hotel to stay at, I only made reservations at hotels with a refrigerator AND a microwave. While I was very very scared to eat out while traveling, eventually I learned to do research on potential restaurants before my trip. It’s a good idea to know where you can eat before heading out on a recruitment trip. Often, this would require calling head to make sure there was at least one item on the menu I could safely eat.

    One last thing, I agree with the folks who have implied you may be responding to other food items making you feel bad. For me, before being dignosised it was dairy. I notice, now that I’ve recovered, I can handle most dairy foods. I would suggest trying an elimination diet, see how you feel, and re-introduce common trouble food items (dairy, corn, etc) to see how you react. Or if you just feel better without (corn, dairy, etc) just keep doing what makes you feel healthy. Finally, hopefully you Dr. has checked your vitamin levels. I had to take iron supplements for a year and vitamin D for several months to get to normal levels. Hopefully you have a plan to get back to healthy nutritional levels. I say yes to vitamin supplementals especially in your recovery phase.

    I wish you the best recovery. Time is what you need and recovery time is different for everyone

    Wendy

  48. I have to say this and I am sorry to disagree with some of you, but I have spent the last 3.5 years researching this disease and I want to put this out there:

    There is no real medical basis behind the IgG food intolerance testing.

    It will not really help anyone with “continuing symptoms.”
    It does not diagnose allergies or allergies in the gut or food intolerances of any kind.

    And there is no science behind “cross reactivity” with gluten either.

    Now, you all can get mad at me or argue with me all day long, but in the end, I can only offer what I have learned and researched.

    You will have to use your common sense on this one.

    Those tests are not valid.

    “Part of the confusion lies in the difference between food intolerances and allergies, terms that are often used interchangeably by testing companies, health practitioners and even in peer-reviewed medical journals.

    In an ALLERGICc reaction, the immune system overreacts to a food by producing an antibody called Immunoglobulin E that causes hives, vomiting, diarrhea and respiratory problems, among other symptoms. To diagnose an allergy, allergists use a blood test that checks for IgE, skin prick testing and other methods.

    Food intolerances are unpleasant reactions that do not involve the immune system, according to the National Institute of Allergy and Infectious Diseases.

    ****They can be caused by enzyme deficiencies, sensitivities to food additives such as sulfites and monosodium glutamate, or reactions to naturally occurring chemicals.***

    For example, people who lack an enzyme needed to digest sugar in milk have lactose intolerance. Sulfites used to preserve dried fruit, canned goods and wine trigger asthma attacks in sensitive people.”

    furthermore:

    Blood tests are a common way to test for sensitivity or intolerance; many of these also involve an antibody, this one called Immunoglobulin G, or IgG.

    The tests often PURPORT to check for sensitivities to hundreds of common foods, many of which rarely trigger food allergies, such as sugar or yeast.

    Blood is exposed to a panel of food proteins, and the labs measure the degree of IgG antibody that binds to each food.

    But while IgE can indicate the presence of an allergen, IgG HASN’T BEEN SHOWN TO BE a simiilar marker for intolerance.

    Instead, IgG is believed to indicate exposure to food and possibly even tolerance, Lavine wrote in the Canadian Medical Association Journal.

    PLEASE NOTE THIS:

    “There is no IgG testing of value,” said Robert Wood, a professor of pediatrics and chief of pediatric allergy and immunology at Johns Hopkins University in Maryland. “All of us make IgG to the foods we eat, and they are not related to disease, including food intolerance.”

    and from the Univ. of Chicago Celiac Research Center:

    Q: Can the Elisa IgG food panel detect non-celiac gluten sensitivity?

    A: No, it can’t. In fact, IT CAN’T DETECT ANY FORM OF FOOD ALLERGY OR INTOLERANCE.

    I am not just saying this to be contrary.

    I beg you all to read the science and decide for yourselves. No allergists or immunologists will get behind these so-called “food sensitivity tests”.
    .

    http://www.cureceliacdisease.org/archives/faq/can-the-elisa-igg-food-panel-detect-gluten-sensitivity

    http://www.sciencebasedmedicine.org/igg-food-intolerance-tests-what-does-the-science-say/

    http://articles.chicagotribune.com/2012-04-11/health/ct-met-food-intolerance-tests-20120411_1_food-intolerance-food-sensitivities-food-additives

    As always, I offer this information out of concern for fellow celiacs
    and I wish you all the very best!
    Good luck.
    IH

  49. Just my two cents: a Cambodian M.D. trained as an acupuncturist treated me for liver and kidney damage issues; that is the only thing that cured my celiac related insomnia for good.

  50. Jen in Beaverton

    I’m sorry you’re not feeling better. I haven’t experienced Kaiser but have had many friends and never heard a good story. I’d suggest any ND, most in the Portland area graduated from National College of Natural Medicine(NCNM) and they heavily teach Celiac and gluten issues. If unable to afford I’d suggest one of the school clinics, they are low cost and believe they have a sliding scale. http://ncnm-clinic.com/
    As far as Dentist, the Gluten Free Portland group on FB has suggested http://www.giffordfamilydentistry.com/ as being knowledgeable in CD. I’ve been meaning to see about getting in, I have my own dental issues – some bad dentist, some 20+ years of ridicule on care when undiagnosed CD.

  51. On the first topic of executive dinners. I’ve found that calling places ahead helps a lot. While traveling, do your research. See if the area has a GF group page on Facebook. I know we have one in our area and we do get requests from out of towners who are looking for a safe place to eat..

    Keep in mind that your body is a complex system. Celiac may not be your only problem. Many of my symptoms went away, but not all.

    It also sucks, but at some point you will get glutened. It will suck, but you’ll get through it. A lot of people swear by probiotics, enzyme pills, and drinking a lot of water.

  52. I have been gluten free for 2 years. Before i went gf i studied A LOT.
    1.. Get your nutrition right. This will make a huge improvement but u may still not feel tip top
    2. Check out supplements &or your vitamin levels. I took vitamin d ,fish oil & glutamine also multivitamin protein shakes. If your intestines are not healing ur not absorbing most of tge vitamins u need.
    3. There r 21 other foods that can trigger the same reaction as gluten in the intestines ….i can not tolerate tapioca ,soy or dairy …you may b sensitive to one of these or all.
    4. Testing testing testing will drive u nuts seeing all these crap doctors ..doctors dont understand your pain or frustration. Do what is in your control 1st. Atleast u will have peace of mind u did all YOU can do
    5. Lack of vitamins causes problems with your nervous system …mostly anxiety &brain fog. Ur not a freak we all have it to some degree if we have intestinal damage. Stress makes the damage worse in turn making you more anxious. ….its a vicious cycle.
    My symptoms ….gastro pain , bouts of constipation &dh my whole life. A horrible pregnancy at age 33 that resulted in a healthy yet still born baby at 38 weeks. Developing probs with my gums . Extreme anxiety ….its not fun

  53. Someone mentioned lunch being a problem so I wanted to share my nutrient dense lunch solution which has worked wonderfully for me, because I also struggled with a solution that didn’t rely on leftovers or involve tons of work or processed meals. Before the start of the week I make a large batch of white rice – enough for 5 lunches. It takes 7 min. with my pressure cooker so I can even do it Monday morning while I’m getting ready for work if I don’t get to it Sunday night (but leave a few extra minutes for packing it into containers). While the rice is cooking I make broccoli – I put about an inch of water at the bottom of the covered pot so technically it’s not steamed but it cooks faster that way. Then, I pack 5 containers with rice and broccoli that I can take to lunch and heat up (I have a small cheapo microwave I bought on Amazon that I keep in a corner of my office cubicle). In separate containers I also pack some canned salmon (yes, processed, but this works if you don’t have a fresh meat option at the ready) and some avocado. Heat the rice, mix in the protein and avocado, and voila! Some fruit for dessert and I feel great for the rest of the day. I realize that not everyone would love this option, but it’s pretty easily modifiable. This has freed me up to stop worrying about what I’m going to do for lunch, and if I have dinner leftovers I have the option of (luxury!) not having to cook the next night for dinner!

  54. Response to Angry Celiac:

    I feel your pain! But it sounds to me as if what you need is what I needed — to accept that having Celiac may mean taking extra-care of yourself, slowing down, and demanding provision for your needs.

    YOU need good nutrition. Your job doesn’t, and won’t provide it if you don’t. Neither will the world.

    Processed foods, and food prepped by restaurants, can be unsafe — or rather lacking in nutritional necessity. Celiac Disease treatment is do-able, but it’s often a matter of flexibility, and lifestyle change.

    I take responsibility for cooking for myself; resting enough; getting adequate calories and micronutrients. Sometimes I feel bloody resentful at the universe at large because “I have to do” extra. But in the long-run, that’s a matter of perspective.

    I get to be my own advocate, recover, and make my own health a priority. I would hope I could choose that even if I hadn’t got Celiac. But Celiac has clearly made it a necessity.

    Take care of you; demand what you need; and be willing to make the changes in your own life so that you can thrive, not just survive; recover; not just malinger.

    Good luck, and all my sympathy!

    CJ
    Tumbling Gluten Free (http://tumblingglutenfree.blogspot.com)

  55. So sorry you are still suffering and frustrated.

    I am by no means an expert but I rely on Kind bars and Naked juices (not green machine, it has gluten) when traveling because they are nutrient dense and easy to find at gas stations (as are nuts and cheese, etc.)

    I do a lot of microwave sweet potatos at work and snack on nuts, fruit and veggies/ If you are lucky enough to get a hotel with a microwave in your room or the lobby that may work for you too. (as long as the microwave is clean.) Potatos, steam pack veggies, GF safe frozen dinners, etc. from a near-by grocery store? Sometimes hotels will have whole fruit at their free breakfasts you can take back to your room, wash and eat. Not trying to be gloom and doom but I have seen kids at these buffets… even if I wasn’t GF I would rewash the fruit!

    As far as the corporate dinners, what a hero you would be if you insisted on a steak and potato joint? You have to be patient with others while you advocate for yourself. You have an illness, just because others can’t see it does not mean it is not there. I have also been very frank with my co-workers about my nutritional needs, and they have been an amazing and encouraging support system and understand this is not some fad diet.

    Unfortunately everything I read seems to point to the body not being able to absorb some specific nutrients because of the part of the intestinal tract that is inflamed? Maybe vitamin shots are the way to go? I hope you get it figured out, there are few things worse than brain fog at work, especially when you are the main provider in your household, and all of the other joyous symptoms that linger on and on and on and on…

    Here’s to your healing!

  56. I’m surprised none of you mentioned the nightshade reaction… Some people with celiac are also very sensitive to tomatoes, eggplant, potatoes, and peppers – all nightshades. I also recently found out these foods are high in glutamic acid, which is the natural form of MSG. The migraine component points toward nightshades and MSG for me. I cannot eat eggplant and watch how much of the others I consume. And of course no MSG.

  57. This story sounds very familiar! A very similar thing happened to my daughter. She has been strictly gluten free for over five years and for the first few years on the gluten free diet, did quite well. However, recently she began to have more and more digestive issues. We finally were able to find a good holistic doctor that ran more in-depth tests and found that she is also sensitive to many other foods in addition to gluten. She was put on an a strict elimination diet and given the supplement L-Glutamine (in a powder form – 1 teaspoon a day) and also probiotics. This regimen is to heal her “leaky gut” which has developed from the other food offenders. She is about four months in of a total of six to nine month treatment with these supplements and is doing MUCH better. She now rarely has sick days, whereas before, she was getting sick almost every day. I feel like we are finally on the right path to healing her tummy. Although, she will probably always have to avoid gluten (and dairy, in her case), healing the leaky gut is a big factor in keeping autoimmune diseases and inflammation in the body under control. Hope this information will help someone in some way!

  58. You are definitely not alone! I am 3 years post diagnosis and I still feel awful a lot of the time. Sorry. I wish I could be more encouraging. You have probably have many foods that you are reacting to. Many of us have multiple food allergies/intolerances due to going years and years undiagnosed.. CD causes a lot damage that does not change over night. it will take time to heal. I am doing better than I was 3 years ago but I still have my bad days, bad weeks , bad months.. In addition to gluten free, I had to go dairy, soy, legume, peanut, tree nut, grain and night shades free before I began to improve at all. I started on the Paleo diet and began taking a boat load of vitamins. I felt great- for a while.. Then suddenly everything I ate was making me sick. I ruled out all possible sources of cross contamination .. I was being beyond careful, but it seemed my body was become allergic to food all together. That is when I found out I have leaky gut syndrome. After some research I found the GAPS diet- It is solely designed to heal and seal the damaged ‘gut’. A diet that can last anywhere from 2-5 years depending on how extensive the damage is. I have been doing this for a year.. or a modified version of it. GAPS works, I have seen great improvements but it is a very difficult plan to stick to.. and like I said before healing is not instant- it takes time. I still have a ways to go. We have to be patient. I have now gone back and doing GAPS intro again for the second time in hopes to speed up the healing process. Don’t give up hope.. from what i have heard form other Celiacs it gets better the longer you are on this journey. Celiac disease changes your life completely but it doesn’t have to ruin your life. I still go out to eat but only to a select few restaurants that I know I can trust. Family get togethers /putlucks,birthday parties, BBQ’s are the trickiest things with CD. You want to go and join in but you can’t because of the threat of cross contamination or people that don’t understand CD. I have just learned we take our own food- PERIOD. Unless the people completely get CD then I don’t eat their food. I don’t make an issue of it.. I go and enjoy. I just don’t eat anything. It is only a big deal if we make it a big deal. I always take enough to share with everyone but it is so me and the kids have safe food to enjoy. We stress to family and friends we would love to come and spend time with you but we have to bring our own food because we have so many food allergies. Please don’t be offended. We just have to be really careful or we will get very sick. If that is ok then we would be glad to come. Most people are very understanding if you are just honest with them about how serious CD is. Good luck. I hope you find a rhythm and learn to manage it in a way that fits into your work.

  59. Medical science would be enhanced by the invention of a time machine, which would allow us to test different “remedies” on the same person during the same time period. As is, it’s hard to know whether people who feel better on a probiotic or another eating regimen in addition to gluten-free would have eventually felt better anyway, had the same amount of time elapsed without that extra safeguard.

    Anyway, I definitely relate to feeling bad even after many careful months, and it’s why I’m doing the Celiaction drug trial, which I hope to be really officially enrolled in soon, assuming my latest endoscopy still shows internal damage. If I do get better, though, I probably won’t know if it was the drug (or placebo!) that did it or just the extra time (because, darn, no time machine yet).

    I too wish doctors would state right up front that it can take years to heal. Threads like this one demonstrate to me that a long recovery process is not an outlier; for diagnosed adults, it’s common or even the norm.

  60. Hi! I’m Libby. I was diagnosed with celiac disease when I was 7-8ish. I had all those crazy symptoms like awful stomachs cramps that felt like I was being stabbed repeatedly, constipation, and other exquisite memories that I don’t want to relive

  61. Lately I seem to be having a reaction to New grist beer, which is supposedly certifed GF. Has anyone else had reactions to gf beers? They don’t have a dedicated brewery, so if they stop following careful procedure I suppose their beer is likely to get contaminated from the other beers. The brain fog I’ve had lately is preventing me from being able to concentrate. I’m not taking any more chances on it.

  62. Hi. This is a bit of a late post. I have had celiac disease for 8 years and have my ups and downs with the odd case of gluten poisoning.
    You might want to check if your pancreas is inflamed. I don’t know how you know that your pancreas is swollen but that is part of the pattern of pancreatitis along with the severe knife-like pains. People with celiac disease have a 3 X increased risk of this condition and a much high rate of exocrine pancreatic deficiency (EPI) but no one is quite sure why – at least that I can work out. I agree that most GI docs are not very informed nor primary care doctors but I think you just need to keep trying until you find a doctor or other health care profession who can help.

  63. I was never diagnosed, but incorrectly “ruled out” gluten as a cause of all my discomfort because, when I first went GF for several months, I didn’t improve. What I didn’t account for was the fact that that particular GF (rigid paleo) diet was SO strict that it eliminated virtually every source of actual nutrition out there, particularly for someone with a weakened gut–I was eating very heavy, fibrous, difficult-to-digest stuff like lentils and raw salads, plus pounds and pounds of grass-fed beef and all these vitamin supplements. I felt completely shitty and so malnourished I started hearing voices. When I finally “broke” the diet and ate some carbs, I immediately felt better–and since the carbs contained gluten, I assumed that couldn’t be the answer.

    So it might not be that you *just* need to cut out gluten and all will be well. For me, it’s turned out (at long last) to be a combination of GF/high-carb/high-fat, staying far away from anything too fibrous or heavy. That may change as I start to heal, but for now I’m enjoying it. 🙂 This is definitely a late post, but I hope in the meantime you’ve started exploring other possible factors in the nutrition puzzle. It’s so individualized it can be daunting, but also very good press for and practice with “listening to your body”…a concept I never really understood until it started working. Be well!

  64. I wish there was a forum or something where we could all hang out and talk. Being the only person I know with celiac is a bummer..

  65. Hey, it could possibly be contamination from somewhere. Iam kinda lucky that I get blisters that are so sensitive, I feel them start to come up in exactly 3 hours after having trace amounts of gluten so it is very easy for me to pinpoint what is causing it. I have found that there is hidden ones you don’t realise – toothpaste, some vitamins, shared toasters/butter with gluten eating people, some suggest even certain cookware/pots etc can be a problem, mixed spices, and many restaurants that claim gluten free are definately not! The other place that a lot of people miss is animals. I hadn’t had a rash for six months and suddenly they came up but I hadn’t eaten out and the only thing it could have been was my mums roast dinner which she swore was Gluten free. However, I still had more and more coming up two weeks later and felt dreadful. It then suddenly occured to me that it started the same time as I got my new pet degus (rodent creatures). I had purposefully got them Grain free feed as they shouldn’t be on grains anyway (a lot of pet food is bulked out with wheat byproducts to make it cheaper to produce) but I suddenly realised it must be their hay and straw (wheat byproduct) and all the dust that I must swallow when moving it about and cleaning out the cage. I cleaned everything out thoroughly and replaced all the hay with timothy hay and finally no more blisters. The dust was probably getting everywhere else as well. I had to buy an expensive one as there are only a couple which don’t have cross contamination and certify 100% timothy hay. I use King Alfalfa timothy hay but there are one or two others but can’t remember at the mo. So basically look at everything and anything. I am also certain that the GF products at the moment are having a problem with contamination in the UK at the moment! I have also heard that many people have to cut back on everything grain or pseudo grain related and dairy etc at first but can often reintroduce it once fully healed and definately get irons levels, thyroid, etc checked out. God Luck though :o)

  66. Gluten Dude,
    I know this is a really late comment but I stumbled upon this post after googling something along the lines of being gluten free and still having symptoms. You are so real, honest and hilarious. I love your last comment, brings a little humor in this struggle we all go through.

    Thank you, I needed this.
    Been gluten free for a while now and still having issues.

  67. I was diagnosed right before I turned two years old, back in ’97! My whole system had shut down from my mother’s diet. My GI track was screwed, my tummy was gray , and only children’s hospital could figure out the celiac! (same hospital in Seattle that saved my daughter’s life.)

    I spent my life getting teased over frozen purple bread. There were no readily available foods and my poor single-mother on a teacher’s salary almost went bankrupt trying to feed me.

    Long story short, I’ve been gluten free basically my WHOLE LIFE. I am egg-free, dairy-free, soy-free and meat-free. I’ve been on my current diet since at least 6 years old then went vegetarian at 14 (basically everything-free as I like to joke!)
    I have always had stomach pain. Like, PAIN. PAIN like nobody can understand. Debilitating pain that almost ruined my life.
    I’ve always been an academic and in my pre-teens the pain finally affected where I went and when. I had an extremely high pain tolerance yet would spend every morning and almost every chance I could get at school basically doubled over on the floor crying as quietly as I could to not be noticed or plain old wailing my face off. I had the fire department, police department called by handy-men thinking I was kidnapped in the bathroom upstairs or people thinking I was dying at school.
    My auto immune disorder feels like it has impacted my whole body. I was diagnosed with fibromyalgia and cluster headaches (serious rare, for real cluster headaches that make you consider suicide in the bathtub when everything f’ing hurts) at 12 and saw a pediatric neurologist who was insensitive, yet said that I was the “poster child” for fibromyalgia and that I should just “get used to a life where you throw up [from pain or guts] and go back to doing life”.
    Every six weeks I was a new medication or two, like over the next six years I had tried everything any MD could list off the top of head and had all sorts of diagnostic procedures (barium aggrivated my gut to where I threw up on the technician haha, and a few ultra hot-shot GIs basically said”how can you have so much wrong with you?”).
    I am 5’10” with big bones and at 18 I was 120 pounds and got talked about like I was a “crack head” from being so skinny! When I got pregnant at 19, people didn’t believe I was throwing up from being pregnant and I got accused of drug use often. Crazy enough I had a fat Wal-Mart supervisor call the police on me saying, “you’re too skinny to be pregnant” like, for real, are you a doctor? Haha!
    Anyway, I had to drop out of High school and I graduated by doing running start at a nearby college where I could mostly make my schedule and got DSS (disability) help. My grades suffered not because of my intelligence ( I got a 1920 SAT score without really trying and have always been in two-track advanced clases) but because I spent a considerable amount of study-homework time in bed, in bath, on the floor or vomiting inconspicuously somewhere.
    I’m a happy person, I always have been! I love life and have a great attitude but used to attempt suicide often due to pain or inability to connect to other people (basically because they couldn’t believe my pain spells were/ARE very real).
    I’ve always been attracted to crazy bad girls, but fell into some terrible relationships with men because they “understood” my pain (mostly an excuse to control me with guilt when I couldn’t do something or refused to be touched.)
    I was put on severe pain killers the second I turned 18 on recommendation from a highly respected neurologist. I found out that I was allergic to all forms of aspirin, either that or the celiac wouldn’t tolerate any aspirin or aspirin-like products (explains why pepto-bismol had always induced vomiting and stomach pain instead of helping…).
    I have been on Opana since 18, steer clear of medical marijuana (always made things worse in terms of making a schedule and never really helped my pain, just distracted me, just my body and my opinion, no hate on mmj users).
    I got pregnant late in year 19 of my life and it was the only thing that allowed a slight decrease in pain after eating, and actually allowed me to put on weight and give me purpose to the pain. Through the whole pregnancy and delivery I had my opiate medications, but cut out every other medication that I could afford to suffer without.
    There’s actually a great “stomach paralyzer” called hyosciamine that can or cannot be mixed with a sedative (depending on your level of pain) that is my emergency medication in addition to a medication that has to be specially compounded called “domperidone”, but I call it my food pill because it allowed me to finally eat! (small meals with not too much discomfort).

    I’m still judged for my pain, but I’ve learned the hard way that anyone who doesn’t believe me doesn’t need to be in my life. I no longer attempt suicide and I’m still at a healthy weight and taking care of my daughter. Doctors still judge me, even people judge me as a “junkie” or “pill-seeker” but I know what has enabled my life, not recommending anything to anyone, yet I’m trying to show you a big picture of life with SEVERE CELIAC where pain NEVER goes away completely.
    I hide most of my pain and many people don’t know my true suffering because I’m happy and I’ve learned most people only care about talks that involve details about their lives, not yours. Be careful of toxic family, toxic doctors, toxic food, and other toxic relationships!

    Long rant within a rant, but basically my message is that going gluten free, no matter how long after a diagnoses, or how dedicated you are to a diet, you may always have a messed up gut! If things get so severe that you can’t live a normal life, or side effects of non-narcotic medications make you feel “not real” don’t be afraid to push for new treatments and never settle for a doctor that makes you feel like you’re “making it up, faking it, making excuses for not being able to cope with ‘mild pain'”.

    Remember, pain is inevitable, suffering is optional! Doctors don’t know everything, that’s why it’s called a “practice”!
    good luck, maybe don’t stress about the “why” and just experiment to find the “how” that works for you.
    Celiacs tend to have other auto-immune problems that may not be detected or mild allergies in tandem with the celiac that you may just assume is celiac symptoms.

    Thanks for reading and keep going, don’t look back unless it helps! Haha 🙂

  68. I have had so much experience with giving up this, or that, as I have gone through decades of study and research to help me heal my own self. What I have learned is that something might not seem to be the answer to all your problems, but, it is quite often still a lessening of the total load of problems.

    If I had never tried to go wheat free I never would have read the Wheat Belly book which led me to learning that I am allergic to tomatoes and corn, and, if I hadn’t learned that, I wouldn’t have learned that I am allergic to nightshades, which was what made quitting smoking and staying stopped so very hard.

    You start with something. You try it. You do more research and you keep going, trying things out (so long as they are not dangerous things) until you find the answer.

    I found my answer, I think. For me, wheat is a problem as are all grains and a lot else. Maybe for the reasons of the toxins used or that they are GMO ; but, definitely because I have been hypoglycemic all my life and no one bothered to listen to my symptoms and tell me what to do about it, despite glucose tests done when I was pregnant and the way I’d get shaky and ill when I didn’t have food for a while , the addiction to sugar, etc.

    If you don’t feel like you found your answer, or your full answer, that’s okay. That doesn’t mean you were wrong to try something out. Nor does it necessarily mean that the thing you omitted should be added back in. It might just mean you also need to try omitting other things or even finding a book on allergies and the rotation diet to help find out what they are and follow the advice therein. Just keep going! Keep trying!

  69. I was diagnosed with celiac 6 months ago. At first I was relieved to know what was wrong and try to start healing. I had no grasp of the difficulty of trying to be gluten-free and how easy it would be to be glutened. The first time I got gluten was from a restaurant after eating a salad that I was assured was gluten free. I still don’t know what I ate that got me so sick. But, it took days to recover and I felt distinct symptoms that I had never experienced before: painfully tingling hands and feet, an intense burning in my stomach in addition to the headache, fatigue and diarrhea. After experiencing this a few times, I was extremely frustrated. It wasn’t that I was eating donuts and pizza; I was getting this sick while carefully trying to eliminate gluten from my diet. This was extremely frustrating and made me border on depression for the first time in my life. One of the next times I got gluten was from a mayonnaise jar. I changed knives and scraped to the bottom of the jar; at this point I still couldn’t really believe that I could get this sick from crumbs (apparently I’m a slow learner!). Well, I can! I was to leave for a big trip the next morning and was desperate to recover! I called a friend who was selling this drink that puts your body into ketosis. She had been telling me about all of its benefits for a few months, but I hadn’t tried it until this point because it is expensive. But after being glutened again, I would have tried about anything to feel better so I could enjoy my trip. After taking keto-os, I was well enough to travel by the morning and, by the next evening, I was actually eating! This was a huge improvement over previous recoveries, so I continued on the keto-os. The next time I got glutened a few months later, I could tell only from the distinct burning in my stomach and slightly tingling hands. There was no nausea, fatigue or diarrhea! I couldn’t believe it!! Now, I never miss taking this supplement that gives me more energy, more focus and helps eliminate inflammation. It has truly been life changing and I just had to share it here since I was on this site a few months ago frantically reading all of the posts about options for gluten recovery. I finally feel good as my body is in its optimal performance. If you want to try it today to see if you can finally feel better and quit living in fear of food, follow this link: http://48CMC5.shopketo.com Good luck to you!!

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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