Dear Gluten Dude: I’m a Sh*tless Celiac. But I Still Have the Disease!

silent celiac disease

I’ve been a bad boy. So many emails that I have not responded to or acknowledged. I swear I do read every one of them, but time prevents me from responding at times. So my apologies to those who have reached out and have not heard back from me. I will give myself a gentle spanking on your behalf.

Here’s an email I received that some of you may relate to. Celiac disease has an amazing of amount of symptoms, but the general population, including way too many doctors, only seem to think that if you don’t have bathroom issues, you can’t have celiac disease. Well…this fellow celiac wants to set the record straight. Here’s her email.

Hey Dude- How’s it going? My family and I just celebrated 5 years of Celiac Awesomeness after having the Celiac Tsunami of a summer in 2011 (three out of five diagnosed). Over those 5 years, I have gone through fits and spurts of paying attention to the Celiac community and the news about the disease itself.

I lost my Mom to cancer in February and while it’s obvious that the loss is profound, I am surprised by one of my grieving manifestations. I am royally pissed off that the diagnosis rate is abysmal in this country. Lack of awareness, uneducated physicians, fad diets… many reasons but I think I have a reason to add to the list.

My girls and I were labeled as “atypical Celiacs” because we lacked GI symptoms. I believe that we may be the “typical” and that some of the undiagnosed folks are just like us, and suffering with a myriad of the 300 manifestations that Celiac likes to inflict, but sans the sh*ts. Very often my girls and I are faced with scrutiny from within the Celiac community, when we disclose that we lack GI symptoms.

It’s like you have to be able to throw out endless bathroom stories and sonic sh*ts to be accepted into the real Celiac fold. Why do we go to see a pediatric GI once a year when he looks at us like we’re aliens from another planet?

I would love if you could write about some folks with Celiac that resemble our family, in the hopes that the Celiac family would recognize the possibility that we might just be the norm and work towards helping all of those that are suffering from Sh*tless Celiac. (I think that’s our official diagnosis…..soon to be found in medical text books). Gutless Celiac just doesn’t sound good because we’re pretty flipping brave.

I love your blog….you bring me joy, awareness, and insights. Thank you!

I totally get the frustration. Bathroom issues are the least of my symptoms as well. Though I do have periods where John and I spend a lot of quality time together, my celiac manifests itself in a myriad of different symptoms. It was one of the many items we need to keep advocating about in regards to our disease. Celiac ain’t just tummy troubles. It can affect the entire system. Seriously…no shit.

I’d love to hear from others in the community about this. Do you suffer “silently” and if so, how does that affect you from a celiac standpoint?

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52 thoughts on “Dear Gluten Dude: I’m a Sh*tless Celiac. But I Still Have the Disease!”

  1. I do! My primary symptom that brought me into the doctor was terrible joint pain. After realizing that I was facing some sort of gluten issue (mostly figuring it out on my own, mind you…the Dr.’s weren’t all that much help), I put it all together and realized that the dizziness, fainting, stabbing nerve pain in my ear, rash on my face, muscle aches and fatigue were ALL RELATED…and ALL RELATED to gluten. I cut out gluten (and soy and dairy) and am now so very much better. I currently have a Dr (who I actually like) who doesn’t see the point in being tested and “labeled” so am not officially diagnosed but I hem and haw over that decision nearly every day. I know there is something wrong, either celiac or NCGS. My blood tests were negative, but I do carry a celiac gene.

    We have also removed gluten from my youngest son’s diet as he WAS having GI issues and was underweight (he also carries a celiac gene). He is also so much better. Again, the decision to not go through the biopsy kind of haunts me. I am not sure what to do.

    1. You open yourself up (actually, literally) to all kinds of complications when you allow them to do a biopsy. You are trusting that their scopes have been sterilized correctly and that they won’t puncture or slice through the intestinal wall causing all kinds of potentially fatal complications. And provided you survive the anesthesia and the procedure and leave the hospital without contracting MRSA or some other pathogen, you may get a false negative diagnosis. Those are my reasons for not being ‘scoped.’ I know I’m ill when I consume gluten. My family knows even before I do, just by looking at me, that I’ve been glutened. My doctor says the odds are in my favor that I have Celiacs or NCGS. Bottom line, I don’t need a pathology report to tell me. I don’t need ‘official evidence’ to get disability or to pay for treatment. If I did, I might, might but probably wouldn’t, have the procedure. In my experience, you have to be extremely healthy to survive being in the hospital for any length of time!

      1. Marie,

        Good for you figuring out a lifestyle that works for you without going through a procedure that scares you. Please be much more careful about fearmongering when it comes to potentially lifesaving and typically safe diagnostic tools. People have enough obstacles to diagnosis, especially people who don’t outwardly show symptoms and feel no urgent pressure to find out if the the have CD. As a silent celiac I resisted getting an endoscopy for over a year after my mother was diagnosed because I didn’t understand the gravity of not getting diagnosed and didn’t want to be told that I needed to restrict my diet. Had I seen your comment before the endoscopy and been sufficiently gullible, I might have avoided the procedure even longer and unknowingly done further damage to my health. Please consider the consequences of what you say on the vulnerable people who could be listening.

    2. Jessica I had the same exact problem. Drs that told me to just cut out big deal. I have a family history, skin issues, tummy issues and after my mother passed away my stomach issues got worse. I forced my general practitioner to send me to a gastro specialist who I feel was no better. He told me he can’t diagnose me as celiac because I took gluten out of my diet already and since I don’t cheat, the biopsy would come out as negative. My biggest fear was that their was something else wrong with me…maybe cancer or some other disease. They did a colonoscopy and an endoscopy and everything was normal……no celiac. But if I eat any gluten I am miserable!! The gastro doctor is pretty convince it is celiac so do I go with that???

      1. Yes, I agree with the “Go with that” approach! I know there are benefits to me and others if I were diagnosed, but for now I am just happy to feel better!

    3. My educated guess says if you have one or both of the genes, you have celiac. Period. End of story– almost. I was in a meeting this morning explaining atypical celiac to a public health educator, as I am trying to get a presentation for school nurses in front of their association. 95% of children with celiac are UNDIAGNOSED and for two years I have been on a campaign to educate them and pediatricans how to recognize celiac in children. It’s NOT rocket science, folks. It IS all about awareness and education. Have I got your attention? Good!

  2. My only symptom was severe dizziness. For months. Like couldn’t stand up without holding on to something. My doc sent me to an audiologist to check my hearing and balance. All normal. Next he sent me for an MRI to see if I had a brain tumor. Nope. So I researched and found celiac as a possibility. I went back to my doc and was told that it wasn’t celiac based on my symptoms and that I “don’t want to know” if it is celiac because it’s so restrictive. Well after basically begging, they sent in for the blood test. Low and behold….. My numbers were off the charts. I have now been gluten free for almost 2 years and the dizziness is all but gone.

    1. I had some similar symptoms! About 4.5 years ago I started having crazy dizziness and vertigo. It felt like I was walking through a fun-house hallway because the walls looked like they were moving. It was damn scary. Doc sent me to an audiologist to test for inner ear issues. Audiologist sent me to a neurologist to assess for MS. Neurologist did the MRI and a whole work up and found…vitamin deficiency. ALL of my problems were (seemingly) related to a serious B12 deficiency, so I started getting shots in the stomach and my dizziness got better. But NONE of the doctors seemed to want to figure out WHY a healthy 32-year-old who eats B12-heavy foods would suddenly and inexplicably have a vitamin deficiency so severe it caused neurological symptoms. I’m still mad about that. Got the celiac diagnosis four years later.

      1. I get this. I think b12 deficiency is one of the most terrifying complications of celiac disease, and definitely warrants more attention.
        It disabled me, physically and cognitively.
        Out of curiosity, how often do you get shots? I get weekly and it’s not enough. I don’t tolerate oral supplements though.

    2. SMH Yeah, we’re not going to do that test because we might find something and boy, wouldn’t that suck? You “don’t want to know” because…umm…there may be hard things you’d have to do to feel better. Baffling. Thankfully you aren’t like your head-in-the-sand doc and stood up for yourself. But it shouldn’t be so freaking hard to get to the truth, right?

  3. I was diagnosed with Celiac in 2003, but not because I had any symptoms. My youngest sister had severe symptoms and when finally diagnosed with Celiac, the whole family was tested. Turns out 3 of the 5 siblings had it – one sever symptoms, one mild, and I was asymptomatic. The internal damage was obvious when they did the endoscopy, but I didn’t present any external symptoms. I often get bewildered comments like “if you don’t have any symptoms, why not eat gluten?”. A lot of people don’t seem to understand that the damage would still happen internally if I consumed gluten. I understand where the woman who wrote that email is coming from – it can be difficult when your disease isn’t being taken as seriously as people who do have symptoms. In my 13 years of having Celiac, I’ve learned that you can’t take it to heart and to just keep maintaining the GF diet, even if people don’t understand that it is medically necessary for managing the disease.

    1. And as far as talking to doctors who don’t believe you or think you’re crazy, I personally haven’t experienced that, but if I ever did I would search to find a doctor who is familiar with Celiac and how it presents in everyone differently.

  4. Me too! I had low iron persistently and it was just that my fantastic family doctor thought to investigate that more. I struggled with my diagnosis as going gluten free brought no obvious benefit (I felt great despite the low iron). But obviously I had to go gf anyway.

    Small shout out to New Zealsnd where I live – gluten free is much easier to come by than I have found when travelling overseas. So come and visit us here!

    1. Sarah, I too had no symptoms except low iron, but I felt fine and I would have missed even that one except for my regular trips to the blood donor clinic; see my comment #9 below.

  5. I too have zero GI symptoms. What does happen if I get glutened is canker sores, severe sinus infection, vertigo, fluid in my ears, hearing loss or sound sensitivity, fatigue, inflammation, joint pain also high blood pressure spikes. My cardiologist had never heard of celiac disease. Sad!
    I agree that so much of society is walking around miserable and with out hope of diagnosis because not enough doctors realize celiac disease has so many other symptoms.
    Thank you spreading awareness Gluten Dude

  6. 20 years ago my Mom was told she can’t have celiac beacause she was constipated. Another dr told her she has diarrhea and she literally had to argue with him that she didn’t, he walked out not believing her. one dr put her on a liquid diet because she also struggled with obesity, she gained five lbs and was told she was a closet eater, she cried her way to a new dr, again. This one drew her blood in the office and it was see through. She was so anemic her number was a 7, supposed to be 12. Biopsy showed smooth as glass intestines. She was obese, constipated, anemic, and the hardest unsuccessful dieter I’ve ever met. All because of celiac disease. The years of no diagnosis has left her with so much internal nerve damage due to inflammation her insides tremor, she passes out and can hardly hold a fork or spoon. I cringe and fill with anger every time I see that dr’s don’t think there is a reason for screening. My sister, me and my three kids all have it and 4/5 are silent celiacs or only show neurological symptoms, one daughter acts severely drunk if she gets a contamination. And my grandmother had intestinal cancer but passed away, hmm don’t have to wonder if that’s related.

  7. Good morning GDude and Fellow Celiac Emailer!

    I haven’t commented in awhile & this seemed to be a good opportunity as a result of my Dr visits yesterday. Like our fellow emailer, we didn’t know my Mom was a Celiac Disease sufferer until after I was Celiac diagnosed and my Mom was enduring (during the last 18 years) her 3rd bout of Stage 4 NHLymphoma, which was also in her lungs & 89% of her bone marrow by the time she was Dx the 3rd time. Mom knew she wasn’t feeling well fairly quickly, but any bathroom issues were the least of her worries. After the chemo was stopped because it was killing her, going strictly gf was the only “treatment” that saved her life. Within a year all of her cancer was gone. Mom is now 80, healthy & takes no meds. We go back on Sept 1 for routine blood work and a Dr visit, but no CT scans for second time, which will be 2 yrs of no cancer. If we’d waited on the Celiac Sh*ts for her Dx, she’d been dead 3 yrs ago.

    Same with me and my Celiac, DH, 3 types of cancer, 5 retina surgeries and my walnut sized tumor under my tongue and inside my left jaw, which was removed through my neck 10 weeks ago today, and the hole in my eardrum. Gluten caused my seemingly never ending auto immune systemic inflammation, which caused my cancer and retinas to fall apart. I didn’t get the Celiac Sh*ts until my DH was in full stride, after at least my 2nd type of cancer and my body was shutting down. Then I lost 35 lbs in 45 days, which was fun. If I’d waited on the Celiac Sh*ts for my Dx, I’d been dead almost 4 yrs ago and my Mom would’ve soon followed because she’d never have known from me that gluten was the sole cause of her cancer. Her oncologist sure couldn’t believe the connection was true. It’s hard for Mom’s oncologist to dispute now, however.

    Yesterday, after almost 4 yrs, my great young smart GI Dr took my esophageal cancer Dx off my future chart. I don’t even have to go back for another upper EGD, unless symptoms return, which they won’t because, as my GI and I laughed about, gluten will never be fast enough to ever catch me long enough to get down my throat ever again. It took a while to figure out all of the minuscule sources of gluten. Thanks solely to GDude – removing Annie’s soups from my diet when I was figuring all of this out was one of my first major clues as to how sensitive I am to gluten. I don’t even have to go back for my next colonoscopy until Dec 2017. No one will ever convince me, nor should they try at this point, that fleeing from gluten when I did on Nov 18, 2012 didn’t save both my & my Mom’s lives.

    Same with my retina surgeon yesterday. Great report, no cataracts yet from the 5000 laser strikes & vitrectomy traumas my peepers have endured during the last 2.5 yrs because of gluten and its resulting inflammation. I can still see into the foreseeable future where I’m going so I can keep as far away from gluten as possible.

    So fellow sh*tless Celiac, you and your family hold your collective heads high wherever you go, including but not limited to your GI doctors offices, and revel in your intelligence, dedication and great health. If anyone questions you, then send them to GDude and his Merry Band of Dedicated Followers. I’m one of the Dude’s most gratefullest followers because he’s most certainly helped me to great health again during the last 4 yrs.

    Dude, sorry about the long winded post. From now on, I’ll refer back to my LAST long winded comment dated August 23, 2016. You’ll soon find me only back upon the golf course to which I’ve been diligently trying to find my way since 2012. Thanks for all your help along the way. My Sweet Wife and I are planning to be in Philly in late 2017 and I’d be honored to treat you & your fantastic Super Woman to the restaurant meal of your choice, gf of course, if you have time. I’ll let you know as we get closer to the dates.

    Your Gratefully Sighted and Cancer Free (as far as I know & feel) GF Follower,

  8. I too rarely have GI issues with Celiac. I was diagnosed after extremely low iron (with no impact to taking high doses) and almost constant migraines. I am truly thankful to the AWESOME GI doctor I was referred to for the lack of iron absorption as he talked to me for 5 minutes and said “you have celiac” – to which my response was “what? but I don’t have any GI symptoms” (I did know what celiac was, had a friend who had it and another with gluten sensitivity). Well, blood test and and endoscopy later, sure enough – Celiac. When I first went GF I did have some pretty painful “glutening” symptoms when I accidentally had a sushi roll with onion crunchies, and a few other learning curve incidnets, but since those first few months of figuring stuff out, I rarely have GI symptoms. In some ways it is nice to not be debilitated by some random bit of cross contamination, but I do have to be vigilant so that I don’t end up inadvertently damaging myself unknowingly. I am careful, but sometimes I wonder if I am really catching everything. Migraines are usually my flag that I’ve done something, but that isn’t always a reliable indicator either (I’ve always been headache prone, and sometimes a headache is a headache).

  9. I too am a “silent” celiac. I’ve never once had those bathroom issues. The story of my diagnosis is a bit unusual. I had been a blood donor for several years but one day when I showed up at the clinic for another scheduled donation and did the standard finger prick test, I was told I couldn’t donate because my hemoglobin levels were too low, i.e., I was slightly anemic. I won’t bore you with all the details but in May 2013 after about 8-9 months of various treatments/tests/examinations, they traced it back to my having celiac.

    Of course I didn’t know this and barely even knew what celiac was so I was eating all kinds of gluten up until then which meant I couldn’t absorb iron very well from in my diet. My celiac antibodies were through the roof and took about 1.5 years to return to normal after going GF right away (didn’t cheat once nor do I ever plan to).

    After DX I was deferred from donating blood for a year (although I waited until the 1.5yrs was up that it took me to get back to “normal”) but I was also told that if I ever develop the more typical non-silent celiac symptoms I would be deferred once again for a year. (I imagine many non-silent celiacs who would like to donate probably feel the effects of being glutened at least once a year, which would put them in a constant state of deferral.)

    I’ve been fine since then and have made a few more donations although my blood iron levels continue to hover near the threshold for donating. I suspect I went undiagnosed for a long enough time that I may have permanently impaired my body’s iron-absorbing ability.

    When others hear about my being celiac, I’m almost always asked what would happen if I eat gluten and I find the explanation a bit more challenging than for someone who isn’t silent. I usually try to point out that not everyone reacts to the disease in the same way and that symptoms can vary in nature from one celiac to another.

    The odd thing about my situation is, I almost likely would never have been DXed if I hadn’t been a blood donor (or it would likely have taken much, much longer at any rate), which means the life I saved by donating might well have been… my own.

    1. This is exactly how I found out aswell. My most major symptom is brain fog (feels similar to dementia or Alzheimer’s, some days I’m so clueless walking around in the clouds) I have also been diagnosed with hypothyroidism so it could very well be a symptom of that. I too believe I ran myself down so much that irreversible damage has been done.

      One day at a time. Some days are better then others and that is just something I have to live with now

  10. I had apparently been a Celiac for awhile, and no digestive issues, until I broke out from a hellish rash and only then did my stomach go topsy-turvy. I got my diagnosis almost 4 years later. My stomach and skin both react. However, I am still not 100% sure if the stomach/intestinal reaction is from Celiac or pancreatic enzyme deficiency. Teying to explain to a doctor can be exhausting. I at least have doctors that are trying to help me. I have to say… I sometimes think I know more than they do.

  11. No GI symptoms for my son or myself. We were diagnosed 3.5 yrs ago, he was 13 and I 45. My son wasn’t growing, very tired/low energy, and had low iron, vitamin D and calcium. Among my symptoms were unexplained weight loss, extreme fatigue, hair loss, depression, anxiety, osteopenia, and calcium, iron, vitamin D and B12 deficiencies. Indirectly, my son saved my life. His diagnosis led to screenings for the rest of the family. That’s how I got my diagnosis.
    Thankfully, after one year of a strict GF lifestyle my son was once again thriving. (He’s now a high school senior and in excellent health.) It took me 2.5 years to finally be healthy.

    You are definitely not alone as a “no-GI-symptom” celiac.

  12. I, too, didn’t have the “usual” celiac symptoms. I was always tired, overweight (always HUNGRY), anemic, low Vitamin D, had sinus/severe allergy issues and would get extreme canker sores in the back of my throat. What got me diagnosed was I started fracturing bones when I was 39. The orthopedic doctor I was sent to thought something was up, and he wanted me referred to a local endocrinologist who specialized in osteoporosis. One of the millions of tests she ran was a celiac panel, and the rest is history. Turns out, at 39 I was also osteopenic. That was 5 years ago. Most of my blood work issues resolved within a year to year and a half of being gluten free, as of my last DEXA scan I still have osteopenia but my doctors are hopeful that with diet and exercise I’ll be able to regain bone strength (did recently have another fracture though……….. darn celiac and weak bones!)

  13. Interestingly enough, my mom is a silent celiac and I am a typical celiac. She had anemia and osteoporosis that weren’t responding to treatment, which prompted them to test her. She has never had the GI symptoms. However, I have more of the classic GI symptoms along with some vitamin deficiencies. There’s definitely a huge range of symptoms to watch out for, even in the same family.

  14. I want to show this thread to my family! My niece (brother’s daughter) was diagnosed with celiac six months ago. I had always STRONGLY suspected I had it based on years of unexplained health issues, but none of my docs would test me. “It’s very uncommon,” they would say. And because I am obese they would kind of give me the side eye like my GI symptoms were probably due to my terrible diet. (I didn’t have a terrible diet. I had celiac!) I used my niece’s diagnosis to force a celiac test for myself and yep, I had it. But now neither my mother or my father will get tested because they don’t think they have symptoms. I can see a bunch of things in their health that could be celiac related, but they don’t. Also, they don’t want to know because having celiac is a pain in the ass. I should show them this thread and strongly urge them to get a blood test at their next doctor’s appointment!

    1. Yep just like my family. “Why would I get tested? I am GF except for the muffin in the morning & the cinnamon buns and the cookies and the…..” “I don’t have celiac. just RA endometriosis, HBP, depression, gut issues and, oh, maybe heart….. “No, even if you have major autoimmune issues & celiac, I am not having a colonoscopy —at my age! Must be from your Dad (deceased).” Just a blood test, you may not need a colonoscopy. “No, must be from your Dad. I don’t have celiac.” So the cousin with crohn’s, I with celiac and cousin’s daughter with celiac & 2 aunts with numerous strange allergic reactions to chemicals, foods and even gluten…..aren’t related to you??
      I so feel your pain…….as a silent celiac for 14 years to diagnosis—-now with 5 auto immune issues! Not sure silent is the term I would use. Maybe classical celiac from SAD (standard american diet), but I am beginning to think our food chain/content &
      stress as well as genetics set me up for the triple play…..with full fledged multiple issues that are now not so silent!
      Moral of the story, silent now, but for how long? Take care of yourself. YOU are the only one who knows how you feel. Shouldn’t matter to others, if it does are they worth your time?

  15. You know, I dont comment a lot on sites, but had to weigh in here today.

    3 out of 6 of us in my immediate family (meaning out of myself, husband, and children,) have celiac. I did not present any of the “classic” symptoms. In fact, I was always constipated (literally, my whole life. Only could go once or twice a week if I was lucky.) And I was starting to become overweight, no matter how much I exercised or how many calories I restricted.
    I also had severe depression so badly that I thought I was going insane. Severe fatigue as well… I’m talking I could not stay awake for longer than 5 hours at a time.
    Early onset carpal tunnel was another thing I was getting to experience! That has gone away after gluten free living.

    My two little ones did indeed have bathroom issues, but the thing that got us all in the doctor was the lovely little thing only a small percentage of lucky celiacs get: Dermatitis Herpetiformus. Fun. And we all have it!
    I’ve gotta say, “This rash sucks balls. Big ones.” It feels like being bitten by tons of fire ants all at once, what with the blisters, burning, and itching.

    My son has been lucky enough that within two weeks of going gluten free, his completely cleared up.

    My daughter, she still has a patch on one arm.

    I seem to flare up every time I get stressed or overheated, and then it’s a new set of blisters up and down the outside of both legs, all the way up the thighs and down to my toes. Joyful expression here, I gotta say.
    It doesn’t help to read that some people have to put up with it for years, even though they are extremely strict about gf living.

    So there are tons of us out here that aren’t “typical” celiacs. And yeah, it would be nice to be taken more seriously by all (Drs, those in the celiac community, etc) who express incredulity or say that we must not suffer “as much.” A big FU to those peeps.

    Off soapbox.
    Have a good day, y’all!

  16. Yes, I think you’re right that medical science may eventually realize that ‘quieter’ symptomed celiac is actually the norm. That there are many many of us and we go undiagnosed, in large part because the medical community still is functioning under a very narrow description of the disease. My main symptoms were constipation, times of acute abdominal pain which more than once landed me in the ER and sometimes involved hospital stays, insomnia and migraines. The last 2 we didn’t even realize were symptoms until a few weeks into my GF diet I realized that both of those symptoms were virtually gone. The acute abdominal pain finally, in the last few months before diagnosis, was constant and when I couldn’t stand it anymore I went to my GI guy. He finally diagnosed me. Four years later now: I’m so so grateful. But, yes, I do also sometimes get the cold shoulder from celiacs who have the ‘other’ symptom.

  17. My main symptoms are migraines, geographic tongue and recurrent miscarriage. These don’t normally go together, but a year and a half ago, I had a huge blood pressure issue that landed me in the ER. After I was released, the ER doc, a young, uncorrupted, optimistic man was updating my file and started noticing my issues. Overweight and cannot loose, even with meds, borderline hypertension, migraines 3-5 times a week and 9 miscarriages. He called and asked me if I had been tested for celiac. I said, no, but I thought it might be an issue. No other doctors would test me because I was overweight and celiac sufferers were always skinny and malnourished. Well, I got tested, have the gene and had the biopsy which showed I did, indeed have celiac.
    Today, 448 days after going Gluten Free, I am 36 weeks pregnant with my first child.

    1. Congrats on your pregnancy, Beki! And you are in the home stretch, how exciting. 😀

      I suspect many more in my family have celiac because we all have had reproductive issues in one form or another, but they refuse to be tested because that would mean a lifestyle change if they did have it.

    2. Congrats! I had infertility issues for 7 years until I went gluten free. Once GF I was able to get pregnant right away! Now have 2 babies… But they are also starting to show symptoms of Celiacs. Unfortunately.

  18. I was diagnosed as non-symptomatic celiac also. There are symptoms, but as everyone else points out they somehow don’t count. I have been GF for 6 months. In no order these are the things I have noticed.
    I was starting to lose my balance a little, that has cleared up.
    The bottom of my feet hurt, that is mostly cleared up.
    I have hypothyroidism at a fairly high dose of synthroid, after 6 months GF I was measured below where I should be so am taking half the dose now, may be able to stop taking the stuff at some point.
    I was getting less flexible, much better now.
    I had a bad stiff neck in one spot, that is better.
    I’m less foggy in the head now.
    Some skin problems have cleared up.
    I was lactose intolerant, now I can drink some milk like putting it on cereal and in coffee and eating pudding, I’m not sure my tolerance yet so am taking it slow.
    I had some digestive problems, but not the sh*tty ones, more like general dyspepsia, cleared up.
    Probably more that I don’t remember.
    Doctors should just test people for celiac who have any autoimmune disease, or any really odd thing they can’t figure out.

    Oddly, I have had people with some of the non-standard symptoms tell me that they don’t have it because they are really healthy. I also considered myself really healthy before diagnosis (and still do). Of course, my first reaction when told that I probably had it was that it had to be wrong! I hate having the disease, but I love that so many problems are explained and solved.

  19. I have low vitamin levels, bloating after dinner and joint pain (things I work on daily – through supplements & papaya enzymes). I’ve already had dislocation hip surgery (at age 36) to repair a 2.5cm tear/shredding of my labrum due to an impinging bone (they shaved that down too). I was diagnosed 4/4/16 through blood tests and scope w/biopsies. Since Oct 2013, I’ve been suffering with chronic pain in my sitz bones (the lowest part of your hip cradle that physically touches whatever surface you sit on) & idiot doctors “practicing medicine” have diagnosed me with bursitis. I’ve tried every drug, and every “fix” they’vE thrown at me. NOTHING. I recently completed a spinal cord stimulator implant trial, and am scheduled for a permanent implant on 9/14. Meanwhile, I’ve been on daily narcotics (including high dosages you wouldn’t believe) killing my organs because their “bandaid” solutions never actually cure me. I’m just leaving the pharmacy for yet another “here, try this drug”.

  20. My main symptom was cankor sores, for years. Sometimes so painful and covering so much of the inside of my mouth, tongue and back of my throat that I didn’t want to eat or drink. Talking was painful. I would swish baby teething medicine around in my mouth to numb it. No doctor or dentist was able to explain a cause or treatment that worked. It wasn’t until I was diagnosed with mild anemia and 2 sisters and my mother were also diagnosed with celiac disease (main symtoms were anemia (sister), dermatitis herpetiformis (mom) and multiple autoimmune diseases (sister) that my doctor, at my insistence tested me for celiac. Labs off the charts and smooth small intestine. I haven’t had a cankor sore since living gluten free.

    I am a Registered Dietitian and also counseled many clients newly diagnosed with celiac. One 12 year old boy had severe constipation as his main symptom. Others presented with anemia, osteoporosis, lack of growth (in children).

  21. My major symptom was a very itchy rash on my knees, elbows, shoulders and buttocks that nothing would help until I finally went to a dermatologist who diagnosed me right away with dermatitis herpetiformis. I had suffered mild digestive symptoms on and off for most of my life that were attributed to IBS as well as canker sores but the rash didn’t appear until my early 60s. Now, whenever I am “gluttened” it is the rash that lets me know. Also, I haven’t had a canker sore since going gluten free.

  22. I too had no bathroom issues! I had extremely bad heartburn and felt like I was chocking. I think I’ve had celiac for years, I went into labor at 29 weeks with my first son and spent 5 weeks in the hospital. Bed rest, bed pan, bed baths, on the strongest muscle relaxers the could give me. and 19 weeks with my second son, was on complete bed rest from 19-37 weeks. I really do think this was celiac.
    My Dad has Celiac, he gets a severe rash, no stomach issues. My sister has Celiac and she has all the bathroom issues.

  23. I can relate! My primary symptoms were terrible, hives that covered 90% of my body (24/7 for nearly 3 years!!), periodic anaphylactic reactions, infertility, panic attacks, joint pain, muscle spasms – all so much more severe and common to me than my minor GI symptoms. I think there are a great many more Celiacs who have a myriad of symptoms that have nothing to do with their gut. I know two little girls, sisters, who both have Celiac. The younger sister suffered from a great many symptoms while the older sister is asymptomatic. Yet the older sister had nearly as much damage ( within 2%) as her younger sister. If there is one thing I’ve learned since my diagnosis it’s that Celiac can affect people in so many different ways, yet all are legitimate and need to be taken seriously.

  24. My primary reason to see doctors was heart palpitations (felt like skips), dizziness, panic attacks, and extreme, sudden exhaustion. After having many tests and several doctors (including a heart specialist) they all said I was fine. I was just stressed and to find a way to relax. AHHHHHHHHHHHHHHHHHHHHHHHHHHHH! Well eventually with enough research I decided to go gluten free and symptoms subsided quickly. I did have some of the classic symptoms but it was so normal for me and my mom that I never brought it up. It was the atypical symptoms that were scaring me. I am gluten free (strictly) for over 3 years now and glad I kept researching. I had been having symptoms for over 8 years before I felt like I was going to snap. Not one doctor even considered it might be a food sensitivity or Celiac disease. Not one. They are smart people who need more up to date training.

  25. I also am symptom free for the most part, have no issues until the fifth day, by then who knows what I came into contact with. My daughter has issues within 10 minutes, while her son is just like me. I envy those that have symptoms as I know it would be easy for me to cheat, but the hell I went through before diagnoses reminds me why I am careful. However I know my grandson is not, but at age 17, he doesn’t want to be different. Keep up the good work and getting the word out.

  26. My husband was diagnosed with Celiac and he had all the typical symptoms. Our daughter was asymptomatic but could not get pregnant Had the blood test which showed positive, went on a GF diet and was pregnant within months. She is GF but is susceptible to rashes if she has gluten.

  27. Reading this post and all these comments is really encouraging to me – obviously it’s not fun to hear about all the horrible things everyone else has gone through but it makes me feel slightly more normal!

    I was diagnosed with coeliac disease after presenting with persistent anaemia. It was picked up following some surgery I had where I lost a lot of blood, and then basically my ferritin levels never really recovered. Thanks to an amazing GP, who had just read an article about the link between anaemia and coeliac disease, I was diagnosed following a positive TTG test and a biopsy.

    After I was formally diagnosed, I of course started eating gluten free to the best of my ability. I had a follow up a year later with a really miserable (consultant!) gastroenterologist who told me that seeing as my symptoms were silent, and eating gluten free was so difficult, I really shouldn’t bother myself with doing that. I should just eat what I want because if I don’t get GI symptoms, who cares?

    Needless to say I didn’t see that doctor again. Reading everyone else’s comments reinforces what a dangerous position that is to take, and I’m really glad I didn’t follow his advice.

  28. I too have different symptoms. I thought I had some sort of throat cancer or stomach cancer because I have to clear my throat and have lots of mucus whenever I eat. After many doctors and people telling me I had gerd, I met a homeopathic doctor who told me straight away that he thought I had celiac. I actually thought he was nuts. That was almost 5 years ago when it wasn’t heard of. After cutting out gluten not only has that lessened, but I also lost 15 lbs, not weight, but pure bloatedness. I look back at the pics before I was diagnosed and think, WOW! I can now tell whenever i get “glutened” which just happened because we are travelling a lot, which makes life so much harder. Some idiot decided it would be a good idea to put flour in an omlete. really? That’s a fist, but now have to ask every time I have eggs anywhere but home. Oh well, still better than being sick. Thanks Gluten Dude for always being here for all of us.

  29. I’m new to this. I’m just getting started with developmental delays that have had a recent onset with my 3 year old. I’ve heard about going gluten/casein free. Could this still benefit him if he’s not allergic to gluten? His dr just ordered a celiac panel to be done via blood work, but I was waiting to see the pediatric neurologist when he tests for autism. If the autistic behaviors are from gluten/casein, does that mean he is allergic to gluten or could it possibly show he is not allergic on a blood test?

  30. Stabbing nerve pain. Muscle twitching all over my body. Benign Fasciculation Syndrome. Neuropathy. Locked up calf muscle. Chills and fatigue. Exercise intolerance. Ice cold fingers. Severe hand joint pain so bad I couldn’t steer my car without suffering. Did I mention fatigue? Inflamed lungs and chest. Labored breathing.

    Generalized inflammation in other words. That migrated around my muscles, organs, nerves, and whole system. Sticking around with one set of symptoms for a couple weeks, then changing into something else a couple weeks later. Celiac taught me that doctors are a joke, know nothing, and that I could out-inform them with minor research done via the much-hated Doctor Google.

    They did nothing to help me. I helped me.

    1. What was the benign fasiculation syndrome like? I think I have had that. I get a lot of neuropathy, fatigue, and numb hands too.

      It’s such a long haul, isn’t it? It really strains relationships with doctors when they don’t have a high enough level of suspicion of a possible celiac diagnosis, or when they tend to assume that because symptoms are scattered that means they are psychosomatic.

      I’d prefer to think that there’s room for improvement, though, instead of dismissing doctors altogether. I’ve been through a lot of anger to get there, though.

  31. I also lack any GI symptoms, but instead get awful rashes. It’s a strain of celiac called dermatitis herpetiformis (DH). I was diagnosed rather quickly (about a month), but before that I had blistery rashes all over my body, the only way I could sleep was to pop a view Benadryl at night and essentially knock myself out.
    I also experienced a really low immune system and brain fog. In the month it took to diagnose me, I had both strep and mono.
    It’s hard for my friends to understand that I not only do I get a rash when I eat gluten, but it also destroys my intestines (quite literally). A lot of people don’t quite grasp how the two are connected.
    My friends are very supportive though and do their best to make sure I’m safe with what I ingest.

  32. A quick review of the medical literature concering celiac disease will reveal that what is considered typical celiac disease ( bloated belly, severe gastointestinal symptoms – death by explosive diarrhea-severe pain etc…,inability to gain weight) is not typical at all and is actually something like 10% of diagnosed cases.
    Also in CD and DH you don’t make antibodies against your villi or your skin. You make antibodies against tissue transglutaminase – an enzyme that affects almost every other protein in your body. Yeah you can biopsy your intestines or your skin. Would you fancy a heart biopsy? NO ? A brain one perhaps? Dissection of your nerve system? Your muscles perhaps? I would argue that many of the immediate symptoms (aside from gastrointestinal) people are experiencing after being glutened are not caused by malabsorption or damage to the small intestine, they are caused by direct damage to other body parts.
    Anyway, in a world where diagnosed people with CD or DH are treated like hypochondriacs, people like me with ncgi are the Munchausens.
    Oh forgot to mention, DO NOT – I repeat- DO NOT trust 99,999999999% of greek restaurants to accomodate your special diet needs. They do not have a clue, they do not care, they will gluten you (flour, flour everywhere).

  33. I went to the doctor because of fatigue (I thought I’m 33 I guess you just have no energy to do anything at this age,) and abdominal pain so bad that it would make me gasp, double over etc. My tTg-Iga came back positive but the endoscopy came back negative the GI doctor said I didn’t have celiac and gave me graham crackers to eat after my procedure. When I had the endoscopy done I had been gluten free for about a month. I started to ad gluten into my diet again and guess what? PIAN. The doctors never offered me any type of pain medication even though everyday at work I was doubled over my desk and sleeping on my breaks, when I went home I was in a fetal position on the couch. After another month and a stool sample my GP doctor told me to stop eating gluten. 4 1/2 weeks later (I tracked it on a calendar) my symptoms were gone, and I have Non Celiac Gluten Sensitivity? WTF.
    Anyway the pain comes back any time I get glutinated.

    1. It seems odd to me that the doctor was not more suspicious of celiac. Biopsies can yield false negatives if not enough samples are taken, or not taken from the proper places. Plus you’d already been gf for a month at the time of endoscopy.

      Your antibodies were positive, so doesn’t that rule out NCGS?

      Clearly you know you need to be gf, but maybe you want a doctor with more clarity around testing.

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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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