Yes…I Still Have Celiac Disease!


So about six weeks ago, life was wonderful, I was feeling great, and I wrote a post titled “Do I Still Have Celiac Disease?

Naturally, it was a bit tongue in cheek, but I was going thru a seriously great stretch health-wise.

Well I can now answer that question with a resounding, frustrating, exasperated YES, I STILL HAVE CELIAC DISEASE!

I’ve been thru a week of hell.

  • I have been ungodly tired. How tired? Yesterday I got into bed at 2:00pm. Woke up at 7. Ate a bit. Back to sleep at 8. Got up at 4:30am. Back to bed at 6. Finally got up at 9. For those of you counting at home, that’s 16.5 hours of sleep and I’m still falling asleep at my desk.
  • I always feel full, even when I’m hungry. For those of you without celiac disease, that may make no sense. But I’m sure my fellow celiacs can relate.
  • I’m having a real hard time focusing at work, which is totally pissing my boss off. Thankfully I work for myself so I can tell my boss to go to hell.
  • I just feel…off. Again, hard to explain but so annoying nonetheless.

So what the hell happened?

Did I anger the gluten gods and give into temptation? Nope.

Did I try something new without doing my due diligence? Nope.

Was I cross-contaminated by one of the Dudettes? Don’t think so.

The fact is I have no idea…at all. And that can drive a Dude crazy.

The only new food introduced into my system in the past week was bread.

Just kidding…it was plantain chips from Trader Joes. They checked out fine, but I’ve heard others warn about Trader Joes before, saying they are not the most careful when it comes to cross-contamination.

So now I’ve got X amount of weeks/months ahead of me as my body tries to heal.

And on top of it all, this article comes out today:Β The Gluten-Free Lie: Why Most Celiacs Are Slowly Dying

I’m going to take a nap now. Wake me up when they find a cure for celiac disease.

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59 thoughts on “Yes…I Still Have Celiac Disease!”

  1. Sorry to hear you were “ambushed” GD. I suspect you were caught with what I call the “Amy’s Pizza” syndrome. Thus, named because it was my first experience with a Gluten Free item that when you turn the box over has that magic phrase ” made in a facility that also processes.. yada yada…wheat..yada yada” that us silly yaks have come to fear. I used to love nuts and quickly discovered that most generic & low cost nut assortments contained my least favorite phrase. Even some major brands purchase nuts from this type of facility. Unfortunately, I’ve also experienced the “Amy’s Pizza syndrome” with dried fruits from major brands. With more and more food being produced around the world, there are less and less controls in place, and until the FDA implements Gluten free definitions and enforcement we must be wary of even the stuff that should be safe.

    Since being diagnosed with Celiac along with my other diets, I have implemented a rule to add only 1 item at a time to my safe diet. I am not always successful, but it helps.

    Time for my nap. As they used to say on the “Hillside Blues” tv show, “Be careful out there.”

    1. The Gluten Dude

      Thanks Rick. I really don’t take risks, but I suppose any new food is a risk. It’s back to the basics for me!!

  2. I’m feeling about the same, Gluten Dude, but I feel mine is more related to the tolerance issue. I had some fun Saturday night…it’s Wednesday, and I still feel like garbage. Unreasonably tired, depressed, bloated, achey all over, breaking out, bloated…oh wait, I said that already LOL I suppose there is a possibility that I am sick. There is also the possibility that I glutened myself in my drunken stupor, but I am pretty good about not doing so, regardless of my sobriety. Slowly dying sounds about right, though πŸ™ Am I not allowed to have fun anymore? Pretty bummed. Celiacs for life…

    1. The Gluten Dude

      Yeah…Sassy…our bodies can’t handle that kind of bedlam anymore. As much as I like to tie one on, my body goes in full attack mode if I go all out nowadays. For life indeed.

    1. The Gluten Dude

      That’s a good question Erin. I’ve been to so many docs, I can honestly say I’m not sure. I just had my physical last month and I would assume they did, but I need to check. Appreciate the suggestion.

      1. I had some really crazy symptoms last year. Finally got my thyroid tested and many of them went away once I got on meds. I didn’t want to take medication at first, but really wanted to get my system in check.

        1. The Gluten Dude

          Yeah…I’m one of those “I really don’t want to put meds in my body unless I absolutely have to” people. That being said, if it keeps me awake past noon, I’m all for it.

  3. Jeez! That article is scary!

    Sorry you got glutened. I hate that so much. And when I can’t identify the culprit? WORST.

    Been to a restaurant lately?

    1. The Gluten Dude

      I did go to a new restaurant and had pasta for my meal and bread pudding for dessert. Just kidding. No…nothing new. Same restaurant…same entree…zzzzzzz.

      1. Same restaurant, same entrees… Different cook? Someone throw some buns on the grill before you ate? Restaurants were almost always the culprit for me.

        1. I specifically remember telling the cook to please remove the bun from the Big Mac before putting it on my tray.

  4. Sucks feeling tired . I just been through a few weeks of tiredness , seems to happen a lot , mine was either a virus or a deficiency maybe even cc .

    I read a lot on forums , FB , blogs etc and I have been taking note about biopsy results I have noticed people diagnosed quicker or with inclusive results say they feel better very quick , and people who have had results of villi completely flattened or destroyed seem to get better slower and have more health problems what do you think ?

    1. The Gluten Dude

      I think the results are all over the board. An article that came out yesterday said the average time for an adult to “heal” once going gluten free is two years. That being said, I’ve heard from many people that they felt better immediately. That sure as heck was not me. Took me years.

      1. I read that article about Celiac’s slowly dying . I kinda like reading that because when doctors have told me my illness is not bad or serious or friends or people have told me how there ibs is worse than my CD or how CD is not a disease I can basically think F you CD really is as serious as I claim . But than on the other hand it’s quite bad information but parts are BS because they want you to buy there product and go on a scd diet instead of GF diet ?

  5. I would absolutely agree that you have your thyroid tested and more importantly a hashimotos antibody test. I remember being that extremely tired and I sympathize with you. I remember days of driving home from work and fighting to stay awake at the wheel. That’s scary. Thyroid meds and the GF diet have given me energy back. As I was told, one autoimmune begets others. I hope you feel better soon.

    1. Patty, I totally agree with you. After about a month of thyroid meds for hashimoto’s, I slept through the night for the first time in months. It was an amazing feeling to not wake up more tired than when I went to sleep!

  6. I refuse to read another depressing article telling me I have insanely high rates of cancer or death. Just to upsetting. I buy a lot of things at Trader Joes…some chips, brown rice pasta, hot dogs, nuts, dried fruit..I don’t know how good they are about cc. I know a lot of there gf products state that they are manufactured with wheat and I stay away from those. This is so hard. I didn’t sign up for all this!

    1. The Gluten Dude

      Take the articles with a grain of salt Sharon. Yes, we celiacs run a higher risk of cancer, but because we eat healthier than most, I also think our chances of incurring other diseases decreases.

      At least that’s what I keep telling myself.

  7. Linda Kaplan (Amy's sister)

    omg Dude….I’m so sorry to hear about your week. Yes, I too have had now 3 blood tests to tell me I have Celiac…don’t hate me….and I’ve never had 1 symptom….well, except hunger b/c I miss my bread!!! I had an endoscopy a few weeks ago and the biopsies came back negative, but perhaps that’s because I’ve been GF for 18 months????!!!….I ache for you…I follow your blog and Amy keeps me posted….yuk. Hope you’re feeling better, and glad you have a boss that is so understand about the work/life balance that you need! πŸ™‚ Linda

    1. The Gluten Dude

      Hey Linda. I don’t hate you, but I can’t speak for everyone else here πŸ™‚

      I would think your discipline needs to be stronger than most celiacs because you have no symptoms. God bless you (in a non-religious way) for being so diligent.

      I appreciate your comment and your support.

  8. Can I ask what you do eat? I had to go on a raw foods diet for a year so that my system could heal properly. I read that article, and thought it was a bit behind the times – you can’t JUST cut out gluten, you also have to eat foods that heal you, and cut out any inflammatory foods. Best wishes as you try to figure out what is wrong.

    1. The Gluten Dude

      Thanks Michelle. My diet consists mostly of rice, veggies, fish and Titos vodka (not necessarily in that order).

      I’m off dairy and soy as well as gluten so there’s not to much inflammatory stuff that goes into my body. That being said, I would love to go on a raw foods diet for a time…just not sure if I can do it.

  9. Hi Gluten Dude –
    I would second (third?) what Patty and Erin stated above. Auto-immune thyroid disease like Hashi’s or Graves’ is a real threat for those of us with celiac disease. Fifteen years after being diagnosed celiac and eating gluten free, I was diagnosed with Graves’ disease (auto-immune hyperthyroidism) last year. We are all at a higher risk of other autoimmune disease, like lupus, rhuematoid arthritis, Sjorgens, etc… And unfortunately most of our doctors don’t “get” this. So we get to be our own advocate and make sure we get what we need with annual blood work, etc. Make sure they test your B-12 and iron regularly too. Deficiencies in either can cause lethargy and for some reason, B-12 is a common deficiency in celiacs.
    Also, just because you had the same meal, at the same restaurant, doesn’t always guarantee safety… πŸ™‚ so I think that is a pretty good possibility for contamination. So many variables.
    As for Trader Joe’s products, they do not produce their own products, they are re-sellers of other people’s products. So if you can figure out whose product it “really” is, then you will know better about how safe it is. For example, their brown rice pasta is Tinkyada, same exact ingredient list and both are made in Canada and definitely GF. As well, their brown rice tortillas are Foor For life brand, which has recently received a thrashing by Gluten Free Watchdog, so don’t buy those anymore! And their GF Whole Rolled Oats are most likely Cream Hill Estates, which are GF certified – both of which are produced in Canada. Their GF granola is, by my best guess, Bakery on Main’s.
    Also, as for healing, are you taking a probiotic? You might think about it to help get things back into “normal working order”. And just take it easy on yourself! We all make mistakes. And unfortunately sometimes we will never really figure out what those mistakes are. πŸ™‚

  10. I stopped eating nuts for the most part last fall due to shared equipment. I also won’t buy any of the bag yourself items anymore… Dried fruits or nuts.

    What kind of rice do you eat? I am reexamining rice as I swear everything I eat it I get brain fog. Wondering if it is a cc issue.

    When I feel bad in general it has been from eating out frequently.

    I hate being a scientist.

    1. The Gluten Dude

      You know…we just checked the Trader Joe’s rice box that I’ve been having and it says it process in a facility with wheat. Is it the culprit? Who knows? But they’ve lost me as a customer.

  11. Sorry to hear about the craptastic time you’ve been having!

    Just to make it even more fun figuring things out, lemme share what has happened to me recently: processing changes in a food that used to be totally safe. Twice in the past year a company that used to have a dedicated GF facility or GF line changed things around. They combined facilities so that it’s not GF anymore, or they added more products to the same line so it’s not GF anymore. I’m betting that with the recession this might be something we’re seeing more of, you know? Argh.

    1. The Gluten Dude

      First of all, I love that word. I’m going to start saying craptastic much more often.

      As to your main point, that is indeed the hard part. What is gluten free today may not be tomorrow. And it’s easy to get lazy and assume. I know I do.

  12. Definately get your thyroid checked. There is a thyroid-gluten connection and I have been on thyroid meds longer (15 years) than I have been gluten-free (over 10 years). Recently my thyroid levels changed and with that, I developed more food sensitivities. In addition to soy and dairy, I believe I cannot eat any seeds! Strange, right? I thought it was legumes and that was why I couldn’t eat hummus anymore. But it was the tahini seeds. And chia seeds. And sesame seeds. I don’t know why, and I don’t think its the cross-reactivity theory because I took gluten out too long ago for my body to think its the same. But I know I’m not the only person to react to seeds and grains of all type, so I would take a look at *everything* you’re eating. Good luck. Its no fun. Trust me, I know.

  13. Gluten dude , do you know much about negative blood tests and people still having CD ? I hear all the time people testing negative too blood tests and biopsy and still claiming they have CD .

    My sister has epilepsy and I have seen it can be connected to CD . My sister has had 2 negative tests for CD , so we and the doctors don’t think that CD is the problem. But all these things I read about testing negative and still having CD is doing my head in . Because i’m still thinking should I try and get doctor’s to do more tests . I don’t see how a test blood test can be wrong twice as I heard they are very accurate . Any thoughts ?

    1. @GlutenFree

      “…My sister has had 2 negative tests for CD , so we and the doctors don’t think that CD is the problem. But all these things I read about testing negative and still having CD is doing my head in… I don’t see how a test blood test can be wrong twice as I heard they are very accurate . Any thoughts ?”

      If you are talking about blood tests, they aren’t as accurate in certain circumstances:

      “Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature.”

      However, that aside, you might want to explore Gluten Ataxia, if you are thinking gluten might be an issue but all tests are negative. Studies are pointing to the existence of a type of gluten ataxia that is NOT Celiac Disease. No villous atrophy, no raised antibodies that indicate Celiac Disease, but definite correlation between neurological damage and gluten ingestion.

      This article is a good one to look at, if you’re interested:

      1. Thanks for the information and article Shaunamom . I have just had a quick read through , I will read it all properly soon and look into it .

  14. I hope you don’t mind me butting in with an opinion! I’m no expert, but I can tell you that I have severe reactions to gluten and yet no blood test or biopsy has been able to show that I have celiac disease. I have all the symptoms, though. I also have a thyroid disease which I believe was caused by eating gluten. Gluten is associated with close to 200 diseases and autoimmune disorders, celiac disease being just one – the one most easily associated with gluten.

    There is a new gluten-sensitivity test out that tests for a couple of other genes beyond the celiac disease markers. You could try to test for that if your doctor/insurance can pay for it. Otherwise, if you are just trying to determine whether or not to take gluten out of her diet, I would just do it and see if it helps. If the blood test and biopsies are already inconclusive, then you have nothing to lose. In my personal opinion, you don’t need a lab test to tell you something you already know. I went gluten-free 10 years ago when no doctor or family member believed me, because I just felt to ill whenever I had any gluten.

    I hope that helps.

    1. Great advice (again) Heather.

      From what I’ve read, the blood tests for celiac are not 100% accurate. Have you had an endoscopy yet?

  15. I’ve had *everything* done to me! I spent a lot of money reaching my deductible only to find out that I’m “fine” and that maybe its just the “stress of having two young children!” (I love that remark!)

    I haven’t tried the gluten-sensitivity test yet. I’m actually looking into finding a naturopathic doctor who has a better understanding of food intolerances, etc. But of course, they won’t be covered under insurance. A lot of times we have to do this work ourselves.

  16. Thanks for the information Heather πŸ™‚ I was reading a book textbook of pediatric Gastroenterology and nutrition it’s a 800 page book of stomach conditions . I read the CD chapter and read about how CD can cause epilepsy , I showed my Mum who also has CD and she asked the doctor to get my sister tested again for CD and test was negative . She had been tested in the past for CD before she had epilepsy , not sure why but that test was also negative.

    I don’t think she has gluten sensitivity . She probably doesn’t have any problem with gluten as she doesn’t have stomach problems . But it was just what I read in the book connected the 2 conditions . The epilepsy has been very bad for her and we just wanted to find something to stop it , I don’t think the doctor’s would send her for an endoscopy if she tested negative in the blood tests . We tried taking gluten out of her diet but it’s difficult to do when the doctor’s keep change her medication , wouldn’t know if it was gluten free or the tablets that were helping .

  17. gluten does not always cause stomach/digest distress. this is why CD and gluten sensitivity can be so hard to diagnose. Herpetiformis dermatitis is a skin condition that comes from gluten and is a symptom of CD but doesn’t always occur with digestive distress. If you get your hands on a copy of Wheat Belly or Dangerous Grains, you’ll see that wheat can cause a variety of symptoms beyond digestive issues, and neurological as well as psychological are included too. If it were me, I would still try going gluten-free for a couple of weeks to see if it helps. You can look up the medications online to see if they contain gluten or not and you can ask the doctor to prescribe a different brand without gluten (if it exists). That’s just my two cents, for what its worth. I’m not a medical expert by any means though. Good luck to your sister and you.

    1. I have heard of the books I will look for a copy or download online . I think the gluten free diet for a few weeks is worth a try sometime , we did try her on a low gluten diet over christmas but it’s difficult to tell if it helped her or not as her medication had just been increased . She has been put on new medication recently so trying a GF diet now I don’t think would be a good time as we would always think what has helped the new tablets or the GF diet ?

      I will have a look at the medication ingredients online . Thanks πŸ™‚

  18. Here is a quote from Dangerous Grains (pg. 152) “Our case against gluten is particularly strong in the areas of gluten-induced epilepsy and disorders of blood vessels in the brain. Severe epileptic seizures, particularly those associated with calcium deposits in the brain; migraine headaches; and/or hyperactivity, often respond very well to a strict gluten-free diet. These improvements sometimes reduce or eliminate the need for antiseizure medications, even in cases where seizures had previously been poorly responsive to drug therapies.”

    Note: they say STRICT gluten-free diet.

    They also say “The evidence suggests that many individuals living with epilepsy would benefit from such a diet, regardless of their test results for gluten sensitivity.”

    There’s a little more about epilepsy in the book but only amounts to one page, so now you don’t need to buy it. πŸ™‚

  19. Sorry to hear you’ve been feeling bad. It’s so frustrating when you don’t know the culprit. I’ve been really tired this week, but I’m thinking it’s my spring allergies. Hope you feel better soon!

    1. The Gluten Dude

      Thanks Alysa. There is an over tendency to blame everything on celiac when you’re not feeling well when it could just be “life”. I don’t think that will ever go away.

  20. TJ’s strikes again! I want to like them because they are so damn cheap and only a seven minute walk from my new place. But alas, every time I try something out of a package I am left suffering for a few days. I found this post after googling “trader joe’s plantain chips reaction” which made me feel sort of like a crazy person. I suppose as a celiac I am used to that kind of feeling though! Oh well, no more plantain chip binges for me. At least I can still patronize TJ’s for their dry goods!

  21. I know this is an older post, but wanted to mention that I get a (mercifully) mild gluten reaction to the TJs plantain chips. I don’t think there is a “shared equipment” statement on that product, but I have stopped eating them because of what they do to me. Stuffy nose almost immediately, later racing heart and numb hands, and some gastrointestinal upset. Hmmm… Maybe not so mild, but not like when I get REALLY glutened and it takes me a week to recover.

  22. I’m supposed to hear any day now the results from my blood work to tell me if I have CD or not. Also, I am vegan and I’m trying to do a lot of raw foods so this it’s going to be interesting!!! Anybody out there have any suggestions for this kind of lifestyle?

  23. I’ve been doing this GF thing just about 13 years. My son was diagnosed at 1 (he’s 14), and our entire household is GF because of his sensitivity.

    I always find it interesting when I tell people about his dietary restrictions that the very first comment is, “will he grow out of it?” “No. It is a lifelong disorder.”, I say. Then com the gasps…”oh. That has to be so hard!” “Actually. It’s quite easy.” I can pretty much make anything GF. No, we don’t eat out much, who can afford to anyway, plus eating at home is healthier overall. I have made GF croissants, twinkles, and funnel cakes. Pretty much anything.

    My so. Has lived with this is whole life. He grieved in about 4th grade, and accidentally became “glutened” (his fault) that same year. He has not complained once since then. He goes on camping trips and on week-long trips with his school. We just need to be prepared and organized.

    So, I say…So what. It’s celiac disease. It could be a lot worse, and with all of the attention GF has gotten over the years, there are SO many options than in 2001.

    Anyway, just my thoughts on “Do I still have Celiac Disease.” Keep up the good blogging!

  24. Hi. I wouldn’t be surprised if it was the Trader Joe’s plantain chips. A few days ago I bought “gluten free” pasta from trader joe’s and got my trademark gluten reaction afterwards. I also bought a package of “gluten free” quinoa and found a piece of wheat in it and so gave it away and never ate it. No more packaged food from trader joe’s for me even if it says gluten free.

    1. You will all be glad to know Trader Joes is preparing to meet the new GF labeling standards that will be required as of August. I finally got fed up and wrote them a letter begging them to standardize their labeling. I got a reply saying they are in the process of re-doing things, and after August things labeled “gluten free” will meet the standard of less than 20ppm. That is good to know, and I can’t wait to see what makes the cut and what doesn’t.

  25. Ok, so, reviving an old post here, but….what about fructose malabsorption? Any type of dried fruit or an apple and I’m out -done -kaputs-for the rest of the day with terrible gas and loose stools the next day (sry, gross…) Have you had a breath test for FM?

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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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