In 2007, after a year of constant stomach pain and losing 15 pounds on an already pretty slim fit, I finally listened to Mrs. Dude and went to see a GI. (The lesson as usual? Mrs. Dude is always right and me…not so much.) After speaking with me for only a few minutes and viewing my food diary, the doc asked me if I had ever heard of celiac disease. I had not.
And so my journey began. I didn’t realize it at the time, but I was extremely lucky to have been diagnosed so quickly.
You know what the average time is for a celiac diagnosis? 10 years. 10 friggin’ years.
And even after we finally get the diagnosis, we are simply told to not eat gluten and are shown the door. That’s it. No follow up care. No nothing. We are on our own to begin a new life that we know nothing about.
Is it because there’s no drug to cure celiac and so there is no financial incentive for the medical industry? A cynic might think so. Thank god I’m not a cynic. 😉
Over the years, the celiac community has shared doctor horror stories that have absolutely floored me. These stories need to be heard…and I’m just the guy to do it. Let’s raise awareness and at the same time, push the medical community to try and get their sh*t together. Share your story below in the comments, share this page and together we CAN make a difference.
After my doctor couldn’t figure out why I was having so many issues with my digestive system (stabbing pain, nausea 24/7, cramping and a belly so bloated I looked pregnant) she sent me to a GI specialist.
I spent maybe fifteen minutes with the GI. She asked me to describe the pain and what I did to manage it (slept, heating pads, ate LOTS of crystallized ginger for the nausea). Then she felt my stomach. She decided I needed to take laxatives…everyday. She also prescribed me a very strong painkiller. I asked her what I could do to PREVENT the symptoms I was having. Her response, “As long as you take laxatives you’ll be fine.”
At that point, I was desperate for anything so I tried the laxatives. As you can guess, that was a horrific experience! In a couple of days, I was sicker than I had ever been.
It took me another three years to find a doctor who would take me seriously. That GI should be fired. What a joke!
A year and a half ago I began to be concerned over my significant memory loss, severe exhaustion and increase in gastro symptoms. I had had stomach issues my whole life but they were either diagnosed as lactose intolerant or stress due to issues with my mother. My concern was great enough to go to the Dr.
The doctor told me, maybe I was diabetic, maybe I was just depressed. He had blood drawn and called me and told me everything was fine…wrong.
I went to a homeopath; she took me off gluten without a screen. I felt better for a month then spiraled downwards fast. Homeopath tests came back positive for 30/40 different food allergies. My body then started rejecting everything.
Went back to pcp, told him I was NOT ok. Begged to go to Boston, he only ran more blood tests. Called and said everything looks great! You are fine! Seriously? My body was rejecting all food, I was losing a lb a day, I couldn’t walk or hold a coherent conversation…and I was fine??? Finally my ANA came back high…He sent me to a rhuemy said it was all related… Test after test for lupus she said it was inconclusive but had nothing to do with my stomach issues…wtf??
I called and begged him, crying to help me. He told me to try to get in with a G…thanks for the help bud!
My father found me one day on the couch close to unresponsive, he thought I was dying, he picked me up and rushed me to the ER. The dr. there told me, “I don’t know what you are doing here, or what you think I can do for you.”. My own Dr was unavailable and unreachable. GI took pity on me, recognized I was an autoimmune mess, as he put it. Ran tests, came up with nothing. He told me to go to Boston. Thank god!!!! I got an appt and my pcp denied the referral. WHAT????? Instead offered me another appointment with HIM!!!
I lost it…took my life in my own hands and kept that appointment. Explained my situation to the new GI, chose a new pcp and saved my own life. New docs all treated me like a human. Dx celiacs and took it seriously, dx neuro endocrine tumor on my pancreas, and took it out. I’m still in hell, but now I can see the light.
The funny thing is, about 2 months ago, the original doc’s office called offering me to sign up in his health care management program! I had already left the practice. I laughed and said are you kidding? He just about managed to kill me!!!!!
I first visited the Doctor when I collapsed at work in extreme acute pain (think appendix) when I was about 19 (approx 1996). Since then all the pains – guts, joints plus fatigue etc. In 2004 I was finally referred to specialist and diagnosed with IBS. Symptoms continued of course, and I was admitted to hospital emergency in 2011. The pain was so bad not even the morphine could stop it – but I didn’t care so much as I was high as a kite.
Was kept in for a week whilst the gynecologist and gastro doctors both pointed at each other (that was weird). All the while they were feeding me hospital food with gluten so I got to the point where I could not get out of bed, drink or eat for several days (was on a drip). I just lay there staring at the ceiling because I couldn’t read anymore. I looked a bit like a corpse. Finally someone ran a blood test and bingo – a biopsy a few months later confirmed it. So over 16 years after me presenting with the very scary symptoms, and making plans to gradually leave work due to sickness (at the age of 34), I finally got diagnosed.
From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. I lost a drastic 90 lbs. because I could not eat or keep anything in me. My entire GI tract BURNED from mouth to rectum and even water burned doing down.
One doctor told me “congratulations on your weight loss”.Another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes)Another encouraged me to work out at a gym. I tried but kept feeling faint on the treadmill and then, my legs and back went numb.I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office. Drugs made my already ripped up gut worse and so I did not take them. I have no psychiatric problems, but I sure as hell thought I would lose my mind.
We spent $30K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. NOTHING worked.
I lost major muscle mass and tone, my ability to comprehend, articulate and recall information.
I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I banged into walls and tripped down stairs, becoming covered in bruises. I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious.
My poor husband thought I was dying.
I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. I was unable to walk, stand, lie down or stand without agonizing pain.
No doctor could tell me what was wrong. FOR 3 YEARS.
Our life came to a stand still as my husband watched helplessly while I went downhill. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. I dragged myself around and researched endlessly to figure out what the hell was going on.
I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. (well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed!) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. (lesson? never trust the word of a “nurse practitioner”–ask for the report and read it yourself!)
They were all Wrong. Wrong. Wrong.
I’ve always known something wasn’t right. Everybody always seemed healthier, energetic, happier than me. I have weird issues that nobody can explain. Depression, anxiety…they threw pills at me for that. My skin sometimes hurts in a weird tingly ice cold pins and needles way, and I get weird rashes on my scalp that make me look like I’m scratching at lice bugs. I can’t remember things.They did some tests but nothing came of it (terrified me half to death when they scanned for brain tumors).
When nothing conclusive was discovered I was just…forgotten.
Who cares if this 21 year old has joint pain? It’s just inflammation, take it easy, take some more pills, and it will go away. I got labelled a hypochondriac. I was making it up.
Then, about 3 months ago, it was as if my body just gave up. I had no energy to do anything. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. Then I started getting ‘actually’ sick. In a way that counts, I guess. Up at 3 am, going to the bathroom every 20 minutes. Getting incredibly nauseous after eating. I lost a lot of weight in a very short time period. Finally my doctor figured shit out. Countless tests later, and he set up an appointment to talk about the results.
I was told I have Celiac. That I can’t have gluten. That I probably inherited it.
I was told if I cut gluten out completely, I would feel fantastic and everything I’ve been complaining about since I was in my early teens would go away.
“What is Gluten?” I asked.
“It’s in wheat. Just watch out for it. Read labels.”
Then I was sent on my way.
They gave him some breathing stuff to calm his lungs down and then the nurse brought in this wonky looking pain medicine. I asked if it was gluten free (because my son has been glutened before by generic drugs) and she said “oh, I don’t know, I don’t know how you would find that out”.
Yeah, big clue that they have absolutely no idea. So I refused the drug – the last thing my son needed was severe stomach pain on top of the breathing issues.
Then the doctor came in and proceeded to give us a 15 minute lecture about how I need to trust more and my son needs to be less anxious – he even managed to quote Reagan in his little speech. I confronted him on the fact that this seemed to be about questioning the gluten, and he denied it, but you could tell by his “speech” that it was all about him feeling the need to get us sorted out.
Apparently if my son is just less anxious then everything will be fine.
This was my first run in with a medical person who had this opinion toward celiac, and I have huge compassion for those who have to deal with attitudes like this all the time.
Growing up, I was diagnosed with IBS many times. Also lots of ovarian pain and skin problems. One dermatologist had me on tetracyclene every day for YEARS to clear up redness around my mouth and nose. I know I am suffering effects of that.I remember one specific point in my early twenties where my stomach issues were so bad I could barely leave the house. The GI doctor told me that I was stressed and need to “lie on the floor and listen to music”. He also prescribed me heavy meds which I didn’t take.
I did have warts on my hands and feet off and on growing up and into my early twenties. I suffered on and off with depression and heart palpitations. Now when I get glutened, I go into IMMEDIATE depression mode. It’s amazing. I know I’m getting better when my mind clears and I am happy again.
Right before my diagnosis, I was having major bladder pain. I was diagnosed with interstitial cystitis but only by the questionnaire, not by a chemical test. It seems that my bladder issues only flare up when I am glutened, so I am not sure about whether it’s a celiac symptom or true IC.
I have always felt like I had many more doctor visits than anyone else I knew growing up.
And I always felt like I had to convince doctors that my issues were real.
It took 30 years to figure out what was wrong. In that time I saw 60-70 different doctors, got tested for a ton of stuff (can we say the majority of these were intrusive and uncomfortable, if not downright painful) and had more drugs thrown at me than you can shake a stick at.I did get a diagnosis after biopsies were done and got cut loose. The instructions I got were “Don’t eat wheat, barley or rye; there’s the door.”
Years of being miserable, too sick to hardly do anything but drag myself to work and lay on the couch. Constant pain, vomiting, weight loss, GI bleeding, the list goes on and on. What 24 year old girl should be living on a diet of baby food and applesauce because she can’t keep anything else down?After being tested for celiac about 5 different times and it being negative for some unknown reason it finally came back positive!! Also they did genetic testing that showed I had genetic mutations that made me prone to celiac. Been on gluten free since September now and feel so much better.
But, once the doctors saw I was better, they said “see ya”; call us if you get sick again. I went from seeing my doctors more often than my boyfriend to “call us if you get sick”?
I remember clearly when my GI doctor diagnosed me with Celiac Disease. I asked him for some help with the gluten-free diet. He had his nurse xerox some antiquated and hopelessly simplistic list of foods to avoid. It was maybe a list of 10 things that included: noodles, bread, pasta, cookies, cakes, pies, crackers, etc. Gee, thanks a lot, that’s a BIG help.Then I saw a “dietitian” in town who didn’t have a clue about the gluten-free diet, nor what Celiac disease was. Wasted $300 on her.
The medical people I saw, including the doctor who diagnosed me, were useless. I was referred to a dietitian who didn’t know much about Celiac, aside from a xeroxed sheet of things she “thought” I “might” be able to eat that some other patient had left.Truth is, if it weren’t for the Internet and a few good books, I don’t know what I would’ve done.
The medical people I’ve seen have been ridiculous. Most doctors don’t learn much about it in med school and there are no pharma reps hawking cures for it, so they don’t understand it.
After countless trips to the ER, several days admitted to the hospital, 2 months of constant vomiting & diarrhea, 3 sets of xrays, catscan, ultrasound, and blood work constantly…all at a prestigious pediatric teaching hospital…my once robust, then failure to thrive, almost 2 year old was diagnosed by ME, because I got sick of every doc telling me it was a virus and give it time and lots of calories, maybe a big stick of bread.Any more time, and any more bread and my baby would’ve been dead.
The ped gi specialist had missed it totally. Finally an explanation for my husbands debilitating stomach and mental health issues, which baffled countless docs for 15 years.
No. I don’t foresee trusting doctors ever again.
When I was a kid NOBODY (well, almost nobody) had a clue about Celiac. Especially my doctors. My mom read about Celiac in a magazine article written by Dr. Benjamin Spock when I was a very sick baby. The symptoms she saw matched exactly with what was written by Dr. Spock.
She asked my pediatrician about the possibility of Celiac, and I’ll paraphrase what she was told, based on conversations with her. This would be in 1961. “Now, now, Celiac is only seen in third world children, you know, colored kids. White babies aren’t susceptible. So stop worrying your pretty little head about it and go home and enjoy being a mommy!”She gave me a rice formula which stopped the symptoms, and I got better. I stayed better until at the age of 14, I started having diarrhea a lot. By the time I was 16 I went into the hospital. By this point if I ate anything ten minutes later it had passed through undigested. My doctor (the one I pooed on, ha ha) had given up and told my mom he was going to take out my colon and leave me with an ostomy. Mom said “Hell NO!” and ten minutes later I was in the car heading home.Another doctor in another hospital did a biopsy and diagnosed Celiac. My mom then remembered the Dr. Spock article and became upset at herself, because she had figured it out already, but the patronizing pediatrician convinced her it wasn’t Celiac.Since then, I’ve had doctors suggest I try eating gluten to see if the Celiac had gone away. I’ve also been told I don’t look like a Celiac, whatever that means. So kudos to my mom for not letting my intestines get cut out. That would have really sucked.
Looking back over the years, I can see clearly now that I have lived with undiagnosed celiac for literally my entire life, which is more than 3 and less than four decades, but who is counting? As a teen I went through rigorous testing, all with no results. As a young adult I had a period where I felt “sort of” healthy, or at least the healthiest I’ve ever felt, and rarely thought about my health.Through all of this, I thought that my most persistent symptoms were normal, were how life are supposed to be. Finally, a year ago and as a complete accident I was diagnosed with celiac by biopsy when I had emergency surgery for something (seemingly) unrelated. I may have had my faith renewed in doctors if a doctor had somehow put the pieces of the puzzle together.
Instead, a doctor put a scope in me to save my life, and went “HOLY CRAYOLA!” when he saw my guts. My completely useless gallbladder saved my life, not doctors.
I spent over 13 years under the care of a doctor who got very insulted if I dare challenge his opinions. Throughout my teen years, I suffered from painful joints/muscles, numbness/tingling, stomach pains, and inability to gain weight. It became so concerning that I pleaded with him for help and was only looked at as if I were crazy. My mom could see I was suffering and challenged him on his diagnosis of ” anxiety.” He retorted, ” There is NOTHING wrong with her. She needs some anxiety medication, to eat more, and a good massage. The tummy ache? It’s just A LITTLE TUMMY ACHE! If you don’t agree with me and don’t like my medical opinion, you can go elsewhere.”well, that LITTLE TUMMY ACHE turned out to be Celiac disease! I went 6 more years destroying my body without even realizing. I experienced worsening symptoms of iritis ( temporarily lost sight in my left eye) Dermititis herpetiformis rash, chronic bruising, impaired swallowing reflex, gasping for air, extreme weight loss from 125 pounds down to 100 pounds in 1.5 months, dark circles under eyes, brittle hair/nails, excruciating stomach pain, etc and chronic sinus infections.
The doctor was finally fed up and told me I looked anorexic and ” needed to eat more.” He put me on a high powered antibiotic which unknown to me, would later come with a black box warning. As soon as a I took the drug, it was like a bomb went off in my body. I would wake up and have the pain of having my arms sawed off. Every nerve and muscle in my body was on fire. Muscle twitching, spasms, more weight loss, heavy night sweats. I thought I was dying. In fact, I was; slowly but surely.
The only one in the medical community who helped me, turned out to be the eye doctor who saw me for the iritis. He told me that iritis is seen in people with auto-immune disorders and that i had a diseased system.
I went back to my M.D and told him I had a diseased system and he LAUGHED AND LAUGHED AND LAUGHED. Needless to say, I never returned.
That is mostly because I find it hard to deal with the fact that I was undiagnosed for over 20 years, maybe 20 more. I ‘had’, among other things, stress (normal for students, apparently), ulcers, migraines, violent vile vomiting, D, wheat addiction, allergy to alcohol, seseme, caffeine, quorn, wheat. Increased weight, anxiety, depression, unexplained rashes, failure to heal from whiplash or carpel tunnel symptoms, recurrent miscarriage.Tough one to spot there.
One dietitian once said she was surprised I had never been tested for celiac, but apparently not surprised enough to send me for testing or mention it to my doctor.
I’ve had my share of problematic, egocentric and ignorant doctors. From the first GI who diagnosed me with Celiac Disease (which was correct) but telling me I could cheat whenever I felt like it. Then another GI who told me that I had “mild Celiac Disease” and that my Celiac Disease support group was filled with “paranoid” people.Then ANOTHER GI who told me that I was being “paranoid” and that I needed “psychiatric evaluation.” And my general doctor who told me that some of these health problems might be “psychological.” Well, it turned out after all these doctors said these things that my antibodies were still very elevated and I was very ill. But I had to be making it all up, right? I’m just one of those “hysterical, paranoid” types.
And I think it’s even worse for women to be taken seriously. I finally have a great GI but wow, did I have to jump through hoops to get there!
It took me a good 3 years to be properly diagnosed. In the meantime, I was mis-diagnosed plenty of times. Doctors tried to put me on all kinds of medication. Powerful meds that we totally unnecessary.Even after being diagnosed, I asked my GI doctor if I needed any follow-up care. She said “Nope! Just eat gluten-free and you’ll be fine.” Not true.
I tried another doctor and asked for follow-up blood testing. She handed me the results and said, “I don’t know how to read these.” Great.
I have been sick since I was a child and had no idea I was allergic to gluten. As an adult, my doctors have ignored me while I’ve wasted countless hours and dollars at appointments and on testing/procedures only for them to tell me it’s all in my head. How droll. I endure horrible symptoms and mostly don’t leave my house.
Like I said…an absolute horror show. We can do better. We’ve got to do better.
I started having issues right around my 31st birthday. I was having severe stomach pain, nausea, joint pain (that I didn’t realize was related til later), and awful bloating that made me unable to button my pants most days. My doctor thought I had a stomach ulcer. Put me on a strong antibiotic that made me feel sicker every time I took it. I was on it for 2 weeks and wasn’t improving. I went back for a follow up and he said, “well I guess it’s still there” and tried to put me on a second round of antibiotics. I asked if he could send me to a GI dr. He did and the first thing the dr did was an endoscopy. There was no sign of a stomach ulcer.
GI dr decides to do a gall bladder scan. It came back normal. Then he did a gastric emptying study and decided that since my stomach was sliiiightly slow emptying, he would put me on a medicine for gastroparesis. I was on it 6 months and wasn’t really noticing any improvement. I moved to another state and had my records sent to a GI dr in my new city.
My very first visit, he took me off the medicine, saying that it can have very serious long term effects and it shouldn’t be used longer than 3 months at a time. He asked if anyone in my family had Celiac. I said yes, my mom. He did a blood test that day and I was diagnosed within 24 hours. I found out later that he specializes in Celiac disease. I’ve been gluten free since and everything feels so much better, other than the occasional accidental glutening.
Thank goodness that I moved and was lucky enough to unknowingly pick a Celiac specialist. I hate to think of how sick I would still be if I were still on that medicine and eating gluten. It took 2 years for my correct diagnosis.
I’m surprised nobody tested you knowing your mother was Celiac. What a shame. I found out in my 40’s and even though several family members have GI issues and other autoimmune problems they all refuse to get tested. It’s bizarre. I know it’s because they don’t want to give up favourite foods etc.
It’s great you’re feeling better.
All too familiar sadly.
Son was diagnosed with Celiac at age 17. (Son hadn’t grown in years – a larger bloodwork test indicated Celiac) His pediatric Gastro snuck in a DNA test. Son has 6 of 8 markers for Celiac. Son’s doctor told Hubby and I – with that many markers – at least one of you has Celiac. Couldn’t get my doctor to test me. “Mrs M, you can’t have Celiac disease – you’re fat!”. Changed doctors, got test, and yup I had it. With a little bit of research, I have found that 40 per cent of the people diagnosed with Celiac disease would qualify as “fat”. I hate knowing more than the doctors.
Oh how terrible! I’m sorry that he said that to you.
I was definitely on the chubby side when I got diagnosed too. 🙁
I was seeing a wt loss specialist when I was first diagnosed. My PCP is awesome but this arrogant prick says you can’t be celiac, your overweight! I only went to see the GI and got the biopsy to prove him wrong then stopped seeing him. The only good thing is he did refer me to a great GI who does awesome follow up care!
I went to the doctor for various GI-related issues. She ordered a bunch of blood and stool tests and said she was adding one for Celiac, though she specifically said she didn’t think I had it. The “good” news was the Celiac antibody test came back positive and I had an answer without doing the super fun stool tests! The “bad” news was they told me it was Celiac on my voicemail. That would’ve been fine if they didn’t leave the message at 4:59 p.m. on Dec 23 when they would be closed on Dec 24 and 25 for Christmas. I Googled it and freaked out, trying to sub in all gf foods for Christmas Eve and Christmas Day before I learned on the 26th that I needed to keep my normal diet until after the Endoscopy, which was also positive.
I was fortunate to have been diagnosed quickly, but you are so right about telling us to eat gluten free and sending us packing. I started getting more and more food intolerances (I still don’t know why) and now I can’t eat dairy, soy and eggs without stomach distress and / or inflammation. I tried going back to the GI doc who diagnosed me when I told him I was still having stomach problems and he sighed and said “I have people here with stomach cancer.” I felt like he slapped me in my face. I never claimed to be as severe as a cancer patient but does that mean my issues don’t deserve treatment? So I haven’t been to a GI doctor since- maybe 10 years now.
After the cancer guilt trip, he did send me to a nutritionist to look at FODMAPs. But that doesn’t explain the problem with eggs and it doesn’t explain why I could eat these things before Celiac and not now. Will we ever be treated with respect with regards to our medical issues?
Julie: You might look into NAET allergy elimination. It sounds so crazy hippy-dippy (I’m always suspicious when people name protocols after themselves!), but it’s non-invasive, and if your health insurance allows chiropractic, a practitioner who is one should be covered. There’s only one NIH study; there was an article in Psychology Today (not sure how credible that is), but at this point I don’t care if it’s a placebo effect some people have experienced. My teen just had an IgG food panel test (in itself unproven/controversial, but I’ve ventured into the realm of functional medicine due to wanting a pediatrician who doesn’t question my son’s PANS/PANDAS diagnosis who feel sort of like the celiac doubters. We do have a good PANS doc). It showed him sensitive to nearly all protein choices (except fish and red meat, which he won’t eat), which is untenable for a growing boy. So before his upcoming NAET appt., we’ve tried to reduce those items, and started keeping a food diary, because I think there may be a behavioral connection. I know for myself that I turned out to have a delayed reaction to soy (eczema); my allergist says he can’t test for that (and he once got all starry-eyed when I told him acupuncture was really great to clean out allergy-ridden sinuses, so he’s not completely opposed to alternative medicine). So whatever treatment people seek, we deserve respect (and it is certainly hoped that we all follow science, as much as possible).
I hear you, and I’m in that zone also. Gastros do see a lot of last resort cases, but it is no grounds to guilt everyone else who is also suffering or struggling. You may not have cancer but ongoing gastric inflammation is not going to lead anywhere good in the longterm. I’ve gone around the houses, and I can share the following learning if of help: 1) gluten is a lectin, and lectins in general may be an issue for you – they are in a lot, if not most, plant based foods and eggs. Check of Dr Gundry and his stuff on lectins; 2) it may be histamine intolerance, and high histamine foods will kick off coeliac-like symptoms and multiple food intolerances; 3) histamine intolerance is also linked to Mast Cell Activation Syndrome – MCAS – that too can have coeliac-like symptoms and food intolerance issues; 4) check out Small Intestinal Bacterial Overgrowth – SIBO – this occurs in people with coeliac and causes digestive symptoms. Can lead to other food intolerances, and tends to feed off high carb and high fibre foods. This can underpin histamine intolerance and once treated (you need a SIBO test and then antibiotics to treat it) histamine intolerance/food intolerance may decrease; 5) Fodmap is the latest cop-out for gastros who haven’t got a clue. Used to be the go to codology of IBS – fodmap diet is only followed for a period of time and issue is meant to resolve in time 6) check out candida overgrowth – also common in coeliac as gut biome is disrupted and candida grows out of control. It causes gut permeability and food intolerances; 6) check out how gluten free ‘gluten free’ food is – spoiler alert, it’s not. Codex level allowance of 20mg gluten per 1kg food weight – if you eat a lot of commercial gluten free foods, that adds up over days and weeks and the damage is cumulative. Also, many gluten free foods have over 20mg per 1kg, many are not properly tested and the gluten testing may not work in certain food types, e.g. distilled or fermented liquids.
Yes candida… be careful of dog food and “torula yeast” now showing up in human food too. Torula yeast is candida yeast. Supposed to be dead as a food additive, but I don’t trust it. It’s hard to fully kill a yeast.
I live in Japan, where Celiac Disease is vanishingly rare. For genetic reasons very few Asians are susceptible to the disease (0.002% or something close to that). However it was here, that I, a Caucasian male of European origin was finally diagnosed. Why? Because the doctors here actually care. I was literally near death when I was sent to hospital by my Internal Medicine specialist. The Tokyo Midtown Medical Centre is a high end private clinic where they have their own labs and in-house CT and MRI scanners. My doctor took one look at the scans and my blood tests (white blood cell count below 6 and gut visibly ravaged like a First World War battlefield on the Western front) and sent me straight to hospital. The docs at Jikei University Hospital had no idea what I had but agreed I was near death (from malnutrition and anemia). But they didn’t dismiss me. Initial diagnosis was colon cancer but after they took a bioscopy it didn’t look right to them so they went a looked for a fusty old GI who was known to have treated a few foreigners with strange conditions before. “Ah!” He said. “In my career I have only seen these symptoms 3 times before, but beyond a shadow of a doubt it is Celiac sprue”. (Liberal translation from the Japanese language).
He sent the biopsy to a US lab for confirmation and ordered DNA testing (they already had me on an “everything free” diet so antibody testing came back negative). The DNA test showed the prerequisite defect (TLA-DQ2 in my case though DQ8 will also do the job).
I had been getting progressively sicker for 7 years before the diagnosis and had many of the same bad experiences reported above with doctors in the US, the UAE and Singapore.
The only moral I can extract from the story is don’t give up until you find a doctor who takes you seriously. I think my Japanese doctors found out what was wrong because they they were humble enough to admit they had no idea and keep testing until they got there.
I will be forever grateful to the physicians who treated me in Japan. 3 years after diagnosis I am symptom free 95% of the time, I have married a wonderful lady and had a baby that I was previously told I was incapable of having. And I quit my job and am now running a very successful startup.
As Winston Churchill said, “Never give up, never give in…”
Pretty amazing story, and congrats on the start-up and the baby! I just feel angry when I see how negated people have been for so long. There are human impact stories beyond the coeliac, so things like people losing babies in pregnancy, or losing jobs due to poor health. Just crazy that something that effects 1-100 people (as we are told – I suspect it’s way higher) is so poorly understood by medical profession. You want to just scream at these people and shake them to wake them up. It’s treating bits of the body as well that drives me mad – like all bits of your body are spare parts and entirely unrelated to each other. Western medicine makes no sense and I do wonder if the Eastern influence of seeing the person as a whole and a system, rather than bits and bobs, is what made the difference for you in Japan, in addition to the ability of doctors to be humble in failing to diagnose you and making sure they stayed on the case until they did. I find if a test result is negative in the UK, they just park it there and no one ever progresses anything beyond that point unless you push it. Such a crazy way of treating health problems and ultimately costs the healthcare system more in the longterm.
God bless those doctors.
Quote: ” I think my Japanese doctors found out what was wrong because they they were humble enough to admit they had no idea and keep testing until they got there. ”
I read a lot of research and whenever I come across a Japanese article I read that one first, because like everything, I know there will be thoroughness there. They do a good job on medicine, and they have good scientific and experience based reasons for being extra careful about vaccines. In their case, that’s not a bad thing. It’s the old Neanderthal genetics coming out of hiding again, I think. But I won’t go into it, it would require a lecture. Look into what happened with HPV vaccines in Japan and you’ll see, they have good reason for their caution. Caution is a good thing with the practice of medicine.
Humility in a doctor is the greatest gift in the profession.
It’s inexcusable that patients aren’t taken more seriously. It took me more than 20 years to find out (figure out?) it was Celiac. I had so many symptoms, and they were treated separately, by different specialists, so no one pieced it together. I tried telling a few doctors that I thought my symptoms were connected, but I was dismissed. I wasn’t a doctor, so what did I know, right? I was told it was all in my head. I was told I was making it up for attention. One doctor took my food journal, showed it to a colleague (supposedly), told me I didn’t have lactose intolerance, and that was the end. No follow-up for my symptoms. I was diagnosed with IBS. (Sure, it’s possible to have IBS and Celiac. But as it turns out, I don’t have IBS.)
Once I had the IBS label, most doctors ignored my GI symptoms. For my other symptoms, tests were run, medication was prescribed, symptoms were blamed on medication side effects, but I continued to get worse. Eventually my rheumatologist suggested Celiac disease or gluten intolerance, but she couldn’t order tests because it was outside of her specialty and the hospital didn’t allow it. She even opened the computer program and showed me the list of tests she was allowed to run, and together we looked for Celiac tests and didn’t find any. I went to my primary care doctor, who told me I was “buying into the fad” and obviously didn’t have Celiac. At my insistence she finally sent me to a nutritionist who, it turned out, knew nothing about Celiac and had to research it all herself.
Several years later I was on a new health insurance that didn’t require referrals, and I was able to see any doctor I wanted (who takes the insurance, of course) and for the first time I saw a GI who specializes in Celiac Disease. I was in my 30s by then and had been having symptoms since childhood. Now I’ve been gluten-free for 9 years and finally feel so much better, but I still have a lot of issues. I developed co-morbidities and have permanent damage to my body. I wonder sometimes how much of that could have been prevented if only I’d seen a good doctor early on.
All too familiar, these stories. I’ve been negated for two decades now, and was put through every test under the sun (including one that involved having radioactive dye injected for a scan to check why my joints were sore). I asked consultant rheumatologist if the nerve/joint pain and gastric pain/symptoms could be related/linked – he said ‘no’. I learned at that point to never trust anything a consultant says. I self-diagnosed after two negative blood tests that were never followed up with IGA deficiency testing or biopsy, and symptoms disappeared/health improved when I cut out gluten. Got bad again three years ago, and realised our fab ‘gluten free’ commercial foods were the issue – I live in UK. Still not had validation from a single doctor. Went looking for my original coeliac tests from 2006/7 so that I can see exactly what the blood results were (suspect GPs not clued up on interpreting results) and lo and behold my coeliac test results have disappeared. We also have no quality of lobbying in UK for better standards as our Coeliac society negates what we tell them on the poor GP experiences and fact that gluten free foods that carry their symbol are making/keeping people withe coeliac ill. None of these experiences are acceptable and unclear why we still have these horror stories. I see so much of the focus for coeliac going on the mass production of poor quality food products that still contain varying amounts of gluten within a supposed ‘safe’ standard, and that is helping people profit but not making coeliacs healthier. The focus on the crap food products also distracts from the reality of poor diagnosis levels and poor healing for people once they are diagnosed. I am angry every day because of this, and think I have been angry every day for 20 years because of this.
Reading those horror stories reminds me of gastroparesis, which disappeared after I went strictly gluten free. So did 90% of the GERD. One dim bulb said I was probably having all this bloating from carbs. Mmm yes and no. Perhaps look at the Celiac possibility. I was diagnosed honestly for H pylorii, which helped once it was cured. But eating wheat while being cured for that meant massive nausea, so I’m taking a big dose of antinausea, then 30 min later, two different antibiotics together, then lying on the floor (the bed is too soft when I’m in pain) until the waves of nausea subside, this three times a day. Sure after the H pylorii was killed I felt loads better. But it was in comparison to before. I was still only 50% cured of whatever was wrong.
Quote “Called and said everything looks great! You are fine! Seriously? My body was rejecting all food, I was losing a lb a day, I couldn’t walk or hold a coherent conversation…and I was fine??? ”
Yeah this. I ended up going to the hospital 6 or 7 times and getting all sorts of scans, drinking all sorts of contrasts, being spun and flipped around in big machines. The result? Oh you’re bloated. Use gas-x. Everything else is fine, you’re fine, probably stress, try to relax. For months I kept using gas-x. But it didn’t help much.
I started doing “high enemas” and going to colonic irrigation. That’s where they put a hose in your butt and literally wash out your colon with water. It helped with feeling sick. I felt better after. But it didn’t solve anything. Nobody there even suggested I may have a Celiac problem.
The down side of “colonics” is that some of them use tap water. Tap water in the US is crap. So they’re washing my flora away and possibly doing it with contaminated water. After the colonics I started to massively gain weight. Now nobody was going to say I have Celiac because I was “fat.” And people with Celiac are too skinny.
People kept saying things like “I would say you have cancer and test you for that, but people with cancer lose weight, they don’t gain it.” Then they’d suggest I lose weight. At least 5 doctors said something like that, one of them said that “sick people are skinny, so you’re just eating too much and making yourself sick.”
By that time I’d been in agony for over 10 years, with no diagnosis that helped. I found FODMAPs and tried that. It helped, but wasn’t a cure. I found Keto and that really helped a lot. But soon after, I realized it was probably Celiac. An elderly care expert we had called to help us with caring for my Mother in Law said she really thought I had Celiac. At the time I thought it was “a fad” and it took me a few months to accept the idea. When I mentioned it to my doctor he didn’t immediately test me. My cheat day with keto usually included wheat bread. But overall I was feeling better.
Then I got my 23andme results with the most significant finding being that I had the Celiac gene, one of the two HLA-DQ8. I felt like a dolt for not listening to the elderly care expert. I also have a very high percentile when compared to other people who’ve had their genetics tested, for having Neanderthal genes. I am a member of a forum for Chronic Fatigue / Myalgic Myoencephalitis sufferers. That’s another whole mess you can look it up on your own. They also said they have a lot of Neanderthal genes. Some of them had even higher percentiles than mine. It basically means you’re likely to have autoimmune issues, especially if you’re exposed to viruses.
My doctor said he couldn’t test me for celiac, I was already eating GF. But he did anyway, just in case, and of course it was negative. He was more helpful on the ME/CFS, he found that I was still responding actively to Epstein Barr, meaning it was reactivating, probably cyclically. We also found that Cytomegalovirus was actively being fought by my body in a reactivation sort of way. We broke the EBV cycle with Valtrex. I still take that regularly. I was already on Celebrex for Arthritis. Valtrex helped a lot. Still does. I don’t know if there’s any specific med for Cytomegalovirus. Probably not since it’s supposed to be “harmless” after your body deals with it.
But around the time that I was first being gaslit by doctors about my gut issues, I also had blood clots in my lungs and that destroyed my endurance. I’ve never fully recovered from that. Nobody ever did a TB test on me. I’ve mentioned it several times. I don’t know what their problem is with testing people for that. When the blood clots happened they also went to my brain and supercharged my migraines, they were daily. If there hadn’t been stabbing in my chest upon breathing, I’d probably have died of a stroke in my 30s. They diagnosed pleurisy, and did a CT scan and saw the clots. They were amazed I was alive.
But learning more and more about how strict you have to be to be truly gluten free, that’s been the real superpower. The more strict I am about GF first, and Organic second, the better I feel and the more days I have when I don’t just lay in bed hating being alive. It’s not over for me, it wasn’t “just celiac” I was dealing with, but Celiac is a big piece of it, without which, nothing else would make any sense. There would be too much symptom noise to be able to figure anything else out.
If nothing else, then for the reason that your doctor, who relies on subjective description of symptoms for diagnosis, can’t help you if they ignore Celiac, Celiac should be tested for early and often.
I had been suffering from severe mouth ulcers for years along with bouts of diarrhea and vomiting. Docs all said IBS from stress. Reduce stress and use OTC ointments for the mouth ulcers. When I was in my 60s I went to a dermatologist for a very itchy rash. He said it was dermatitis herpetiformis and that I had celiac disease and needed a biopsy of my small intestine to confirm. Convinced my GI doc to do the biopsy. At a follow-up appointment he said the biopsy showed that I did have celiac sprue and that the nurse would give me some info on how to follow a gluten free diet. Well I learned more from internet research and reading books than I did from him and his handouts. Since going gluten free no more mouth ulcers or vomiting or itchy rash and diarrhea only when I do something stupid like eating a salad at Panera Bread!