Crohns.
IBS.
Acid Reflux.
Hypochondria.
Depression.
Stress.
Psychosis.
The list is endless of all of the misdiagnoses that the celiac community has suffered.
It’s complete and utter BS that this still goes on.
The following comment was left on my “Hey celiacs…we’re trendy” blog post and I thought the closing question was very, very interesting.
So here’s my question to you…
Have you learned to trust your doctor again??
——————————————————————————-
I was just recently diagnosed with Celiacs and as an added bonus, was told I had lymphocytic colitis on top of that. Hmmm, a common theme among Celiacs is simply trying to get someone, anyone to believe that they are truly ill. Going through the years in my mind now, I think I’ve had CD for more than 20 years and didn’t know it.
The last 10 years have been especially hard…all of the humiliation, anti-depressants, being told there is nothing wrong with me and then finally, like Ms Esposito, begging and pleading for help.
I had really mixed feelings when the diagnosis did finally come in. On one hand, I was relieved that I wasn’t CRAZY or a hypochondriac. On the other hand I was really, really pissed at all of those doctors that labeled me nuts and that I had to suffer so many years and wondering myself if I was indeed crazy.
I want to call all of the doctors I’ve seen over the last 10 years and tell them FO, or go right to their offices and give em the bird right at the front desk. I don’t guess that would serve any good purpose other than to make me feel better.
Hey guys…do you ever get over your feeling of animosity towards the medical community and how in the hell do you learn to trust doctors again???
After countless trips to the ER, several days admitted to the hospital, 2 months of constant vomitting & diarrhea, 3 sets of xrays,, catscan, ultrasound,and bloodwork 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 ever 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.
Wow…Jeanne…that is something else. Self-diagnosis seems to be quite common for us.
Merry Christmas to one and to all. I can’t say I trust drs. I have one I see whom I like and I can discuss things with but generally I educate him. He is pushing for me to enter med school lol. If my brian worked more than 50% of the time I might!
I got poisoned with gluten after ringing an after hours Gp to ask for pain relief. The medication they gave me had gluten in it. It says on the pack – contains gluten. (have poisoned muscled before on it and forgot to check…… Was in agony and swallowed them down before checking the blister pack and ringing up to find out).
When they rang to confirm that ‘yes, the product does actually contain gluten’ I was so mad at myself. Then to be told that it was ‘only a small amount and shouldn’t make you have a reaction’. Far out. What year are we living in?????????
Gastro specialists who don’t know about nutrition. Doctors who don’t know what’s in the bag they carry.
So no. I don’t trust them. I think I’m fairly well versed in being able to look up factual information and unfortunately, for cd sufferers, you’ll learn more by reading this site than any dr.will be able to tell you.
Xxxxxx
Thanks Helen. Merry Christmas to you.
This one hit home when I saw it. I was recently diagnosed with CD but I’m not entirely sold that it’s what I have. About 6 years ago, or so, I started having joint paint, mostly in my knees and wrists. I went to my doctor and they did all kinds of tests like MRIs, xrays and assorted blood work. They even sent me to an orthopedic doctor because my primary dr. could not come up with a solution. The ortho dr. finally diagnosed me with gout because he saw my uric acid levels were a little high. He informed me on switching to a low purine diet and a prescribed a couple different pills to see if the pain would go away. So I changed my diet, which was NOT EASY as you know and took the pills, and after 6 months or so, my pain was not going away, it was getting worse. I ache every day in my elbows, knees, hips, feet and wrists… some days worse than others. The drs. had no solution.
Jump ahead 6 years to the present. New state, new health insurance, new dr. After one visit, which I felt very rushed in, he told me I was probably gluten intolerant. PROBABLY? Here we go again. I changed my diet, again, to a GF one, which is getting very expensive. It’s been 3 weeks so far and I’m not feeling any better. I also do not have any other symptoms that CD sufferers usual experience, which makes me leary, like I did when I was dignosed with gout. I also did not have the typical symtoms. So this is why I am not trusting the doctors like I really want to be able to. Thanks for sharing this article, now I know I am not alone.
Did your doctor run any tests to determine if you’ve got celiac? If not, I wouldn’t trust him, either. He should have ordered a blood panel and, if you had a positive blood test, an endoscopy. If he didn’t do these things, then you may want to find another doctor. Also, you need to be eating gluten to get accurate results on the tests.
You COULD have celiac – Joint pain is one of many possible symptoms of celiac/gluten intolerance, and not everyone gets the ‘classic’ gastrointestinal symptoms. My main symptom before diagnoses was horrible migraines. But if he didn’t run any tests, I’d seriously consider getting another opinion if I were you. Good luck!
Kate, thank you for your response. The dr. did run some blood tests but all I was told was that they came back normal. My wife (who is an RN) clarified his response a bit for me… that it is most likely wheat/gluten that is causing inflammation in my joints causing the pain. So that is why I should be on the gluten free diet but I don’t necessarily have CD. Does that make sense?
Hi Steve,
I know it’s been three years since you posted this reply, but I’m desperate to know how you went with diagnosis and treatment. I’m new to this website, and my research is for my husband. He has the exact symptoms are you, and after some blood tests (which did NOT ask for CD) which returned with a “normal” result for red/white count etc, his doctor diagnosed him with depression.
I have serious doubt about him being depressed and his mental state is as normal as ever, but our doctor told him that’s what it is, and prescribed him anti-depressants.
The longer I read about this disease, the more it makes sense. I hope you do receive my reply and give me the update on your health.
Mary
Bone & joint pain are one of my MAJOR gluten issues, usually being glutened will end me up in bed because of the aching & burning in my bones that keep the gut fires company. 3 weeks sadly isn’t long enough to say its not helping as gluten can stay in your system up to 6 months.
Realize this is a total life change not a band-aid like before.
Finding a functional medicine doc has been a huge help for me! Episodes are fewer & farther between, knowing what pill combos stop the longer term issues of accidental gluten (yesterday due to m&m’s their flavored varieties have wheat so now my favorite treat is out).
I have what I’ll call an amicable relationship with my doctor. 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 CRAPOLA!” when he saw my guts. My completely useless gallbladder saved my life, not doctors. I don’t know where to begin building that trust again.
I’ve had this conversation with so many people. I was in a very serious car accident while I was in college. The doctor put a pin in my knee that was too long so I had a very painful time relearning to walk until another doctor took it out.
Like many, my first MS symptom was optic neuritis which was misdiagnosed by eye “specialists.” I was diagnosed a couple of years later when I was numb from the rib cage down.
Then I had pain and digestive issues for years which were attributed to whatever health issues that doctor wasn’t responsible for. I don’t present “typical” got CD and could not figure out what was wrong! I went to a new doctor when I had a cold and she heard my misery about this ongoing issue, ran a basic allergy test, and sent me to a naturopath.
It took me several months to get the naturopath to run a more extensive allergy panel and CD test; the CD test came back negative but I don’t care. The first panel showed a wheat allergy so I’m living like I have CD anyway. The naturopath has tried to argue with me that’s didn’t need to give up soy but I have multiple autoimmune thyroid diseases and still showed a sensitivity on my allergy panel, so I ignore her.
And that is how I deal with doctors: I consult them but I do my own research and follow the rules MY body needs. I have learned to be my own advocate. Many doctors really WANT to help but they are blinded by their own experience or lack thereof. Find a team of medical professionals that can be your consultants and then do YOUR job: take care of yourself. It’s a journey. I couldn’t imagine, when I was diagnosed with MS and I started cleaning up my diet, that I would have the knowledge, experience and lifestyle that I have today!
I was told all of that for years and years. Then I moved. I got very lucky that I went into the dr. after weeks of pain, I used to just ride it out…like the other drs. told me too. What actually sent me into the dr. was that my hair started falling out.
My new dr. was very nice. She gave me meds to help control the symptoms, drew some blood and recommended I cut gluten out…just to see if it would help.
WOW…one week later I went in and told her that the gluten-free thing had really helped. She told me that my blood work showed I had celiac’s and that my blood work also showed malnutrition. That was why my hair was falling out.
Then she walked me through the diet and warned me of lots of the common hiding places for gluten in common foods…like soy sauce.
My Dr. has Celiac’s. She has been wonderful. But I got very lucky in finding her. She has restored most of my faith, but it is in her…not the profession. I trust her when she refers me to another dr.
I do not blindly trust other drs. anymore. I question everything.
I work with doctors, well, surgeons, who are doctors but tend to be more like sociopaths whereas a clinician tends to be more like a regular asshole. Not all, of course, but quite a few.
The doctors big ego and the horribly short amount of time they spend with a patient lead to many wrong conclusions because lots of different diseases have overlapping symptoms. We, the patients, are our own best advocate, as V said. Go in with a written list of symptoms and questions. If they blow it off, find another doctor. If you think you have a specific disease or disorder or whatever through your own research and family history tell them. A good doctor will listen and start from there. Bad ones, we all know too well what the bad ones do. Tell you that you’re crazy, that an oophorectomy will fix you right up, stuff like that. Try to keep the frame of mind that you are the consumer or customer and the doctor is the provider. You don’t owe them anything, and they, if they have any sense at all will realize they need you in order to afford that nice Jaguar or BMW. Don’t hesitate to tell a doctor that he/she isn’t exactly what you’re looking for and then go find another.
For what its worth, I’ve found the female doctors to be much better about listening to their patients than male doctors. That’s not a scientific find, just anecdotal based on personal experience.
Add in MS, Fibromyalgia, Sjogrens’s, Lupus, Myasthenia Gravis, blah-blah-blah, plus more MRIs (tracking all the grey matter lesions) and spinal taps that I care to remember…. and that was me. Over 20 years.
How did I learn to trust doctors again? Who says I do? Well, there are a couple (like my orthopedic surgeon that fixed my knee when after 3 years of being told I was too young for a total joint replacement), and the dermatologic RN who took one look at a rash I’d had since high school (HIGH SCHOOL!! I’m 48 now) and said “that’s not eczema…. that’s DH. Get tested for Celiac.” That’s how I learn to trust again. One at a time. One who listens. One who helps. One who doesn’t tell me I’m crazy. That’s how. And, damn it, it’s not easy.
On a good day I would say that I regard my doctors as my unofficial team, and take the best of the knowledge of each. Thus building up a picture of what needs to happen to move forward.
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.
Trust, no, respect, not much.
I am my own advocate now with the amazing celiac community my main source of information and support.
Thanks you guys.
I don’t have time for regrets or recriminations. This disease took enough of my life.
Thank God for the Atkins diet, gluten low enough to let me hold 2 pregnancies (doing before, not during, not ideal for during pregnancy).
Don’t even start me on trusting paediatric doctors with my kids.
Doctors are just people with a lot of extra training. Medicine isn’t an exact science. But, Doctors are also in a business. When my GI doctor did me wrong, I wrote him a letter telling him how he failed me, how he could have helped me, and why I was never coming back to him.
He personally called me and apologized! I was stunned and then I was thankful.
If you don’t like or trust your doctor, and you don’t think he/she is capable of changing, the take your business elsewhere.
Donna ddv
Donna, you’ve given me an idea – I need to write my old physician a letter, letting him know how he ‘done me wrong’ and advise him to investigate those with IBS and test for celiac before anyone else suffers. He most likely doesn’t know how I have now been diagnoses or that he overlooked it. He needs to be educated too!
David, LOL!!! I’ve met many of the clueless asshole variety. I also was diagnosed with lymphocytic colitis before the gluten intolerance diagnosis. I begged the gastroenterologist for celiac testing, since I had ALL the symptoms, and she said “You tested negative 6 years ago (blood only), you do not and will never have CD.” WTF?!? So I got Enterolab stool and gene testing on my own and went GF/DF, got much better, and she was fired. I read the progress notes she sent to my PCP…about me doing too much of my own research, etc.
I have had a string of really disappointing doctors, and I researched most of them well! They rarely fully examine the human body, they never think outside the box, they have no interest in figurnig out root causes, and they are simply happy to be medication pushers/managers. Keeps you coming back I guess. What ever happened to HEALING the sick and Doing No Harm?
So I started paying big $ to see an integrative medicine doctor. That was a life-altering experience, but it concerns me that these docs are only available to the wealthy. Over time though, I started to realize the top fuctional/holistic docs come with their own set of “most common diagnoses.” They treat food intolerances, fibromyalgia, chronic lyme, etc. When I presented with Amyopathic Dermatomyositis, a potentially serious autoimmune disease, the inegrative doc sent me off to a traditional rheumatologist, because I didn’t fit into the usual list of conditions they are comfortable treating. Sigh.
So I am my own advocate, I’m practically my own doctor, I keep meticulous copies of all my lab results, I research like crazy, and I USE my doctors for whatever I think I need. I also disrobe in their presence to force them to examine me. I tell them all about my chinese medicine doctor and her acupuncture and herbs, I talk about my diet and its effect on my progress. I feel like it’s my job to open their minds and make them accept there is a large world of alternative/traditional health care and diet therapies out there that they need to learn about and acknowledge. They may think I’m crazy, but I don’t care. I want to be a pebble in their shoe…insignificant, but always uncomfortable.
We need massive health care reform in this country, and not just of the payer variety!!
I agree with Donna. I have been royally screwed by some doctors and told them so. It frightened some of them and they didn’t respond well, but most were stunned and asked me to help them find out more about the condition.
My GP is actually wonderful – he admits when he doesn’t know enough about something and sends me to someone. I had a back injury that wouldn’t heal with painkillers – and he sent me to a PT who rightfully found that the problem wasn’t in my back, but my IT band muscles in my legs. Once we fixed that problem, everything went away.
I guess my point is that a doctor is only an advisor, and their advice can be good, bad, or awful. Its up to us to use it or not, and to pursue things when we know something is wrong and we’re not crazy 😀
If any of you haven’t read it, I highly recommend reading this book: http://www.amazon.com/YOU-Patient-Insiders-Handbook-Treatment/dp/B001E96H1M
Merry Christmas, Happy Holidays, and all to everyone!
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’m excited to get started with a new doctor at the Mayo clinic next month, a doctor who actually specializes in celiac disease.
I might actually be able to trust her…
Gluten Dude—I have not trusted doctors since I was a pup of 18. I HATE going to any doctor and it was an accident that I found out that I have Celiac disease. They are like lawyers—-a necessary evil. Doctors have always thought that they are the great healers. One have to remember back in the day doctors did not even wash their hands and went from patient to patient causing countless number of women to die shortly after childbirth. Isn’t it interesting that Celiac disease on one of the most common autoimmune diseases, but the most under diagnosed. And don’t get me started—well yes—doctors don’t listen to women and they think we make shit up to see them. Ya know Shakespeare said “kill all the lawyers”. Hmmmm just thinking lol!!!
After a year I was beginning to think I was the only “accidental” celiac. These days I find the only thing doctors are good for are running tests I’ve decided I need and prescribing antibiotics or steroids when I am sick enough to actually call and make an appointment. That doesn’t happen often these days.
This is the part that is really scary – how many of us all have similar stories. I am SOOOOO thankful that I finally have a team of doctors that I trust. Ask me this 5 years ago and I would have had no nice words for my doctors – ask me now and I feel that I trust mine fully.
Read my whole story about struggling for diagnosis at: http://innercirclechic.soluckygifts.com/about-us/carey/
By the way, the question I asked my doctor that referred me to my new primary care physician was “Who would you send your wife to?” and I got the RIGHT answer!
I tell anyone that has anything even remotely like Celiac to be tested – and insist on it. I want ALL people to be tested actually – 1% of the population is out there walking around miserable and can be saved from their suffering!
C
When I was diagnosed, (12 years ago) I wrote a one page letter listing symptoms and issues over a lifetime- and the “simple” test that led to renewed health. I gave the request to please test for celiac more often and then sent to 100 local physicians. Planting seeds.
awesome idea! I would love to do that nationwide – imagine the impact that would have!
Absolutely! I have encouraged others to do the same in the past (at various times) – before Facebook, before Twitter, before my book, before I had a website. I have more ideas than time, LOL – but with all the recent conversations, etc – I am ready to start this request (with a prepared letter) again after the holidays. I had proof that letter writing and my ‘voice of a mom’ can make a difference! I was able to change the way a medical facility provides foods for others with allergies (I know celiac isn’t an allergy) – after an experience we had earlier this year. http://www.dsimpsonbooks.com/1/category/rehab%20make%20a%20differencef8b06544ac/1.html
Putting action to ideas to make a difference for others 🙂
Now that is very cool Debbie…
I just saw my primary care doctor last week for a yearly physical. Along with celiac disease, I have high blood pressure and anemia to deal with. The anemia has been haunting me for decades. I was diagnosed with celiac 17 years ago and have been following a gluten free diet since then, so I’m a long term g-free girl. But, the anemia continues to give me problems. While discussing this with my doctor, I asked him if the anemia was caused at least partly because of absorption problems in my intestine. He said, “No. Once you follow a gluten-free diet everything heals up and you have nothing to worry about anymore.” Of course, I know that this is not true, because I READ. I think I’m in the market for a new primary care doctor.
When I, a 63 year old female with a then twenty pound weight loss, went to my doctor, she immediately ordered a celiac blood test which came back negative. With continued problems and weight loss exceeding 40 pounds I was finally diagnosed by a GI but then that was it. “oh, just eat no gluten and you’ll be fine”. After 15 months of being GF I was worse than ever and down to 107 pounds at 67 years old.
My observation? Most GIs can diagnose it pretty easily but that’s as far as they go. You then have to find a specialist who has a better understanding of the disease and where you should be in the healing process. I was living in a major metro area with 4 million people and there is not one single doctor there who works with celiac patients. I ended up at Johns Hopkins in Baltimore.
5 years of doctors saying “You have IBS caused by stress, take Imodium” leaves me not trusting of most doctors, but I feel like I’ve finally hit a few that will help me after years of struggle.
To quote a naturopathic doctor on the short list of doctors that I feel some trust for:
“The problem with the health care system is if you’re able to go to work, they say you’re healthy. If they can’t pathologize you, they don’t treat you until you’re no longer ambulatory.”
Thank goodness I was diagnosed by a specialist who was very thorough in her testing. My GP had/has a very carefree attitude and did not think my severe anemia was a concern. Live and learn………………..
How do I feel about doctors and how did I learn to trust again?
whoo baby….where do I start? I was just raging anger for a long time. Rather than tell my saga once more, new readers can see it here:
http://glutendude.com/celiac/celiac-disease-is-not-trendy/
But since then, I have made peace with this anger and taken positive steps to forgive. Yup, I said forgive….. because anger only makes the one who is angry…. sicker. My PCP had no clue how this manifests and presents in adults—symptom-treating me for years—and he has kids with celiac! The long term GI doc I had (12 years) gave me the same BS —“GERD” and “IBS” Dxes. I heard it all and they were all wrong.
I channel my anger into helping others get a proper DX and learn to negotiate the “new normal” of being a celiac. I use humor to make the pain stop. I try to educate everyone–even doctors!–about Celiac. And I am writing a book. Our stories need to be told.
here is something you can do:
(1) DO notify all the docs who got it wrong (even if you get no replies–it will make you feel better to say “I told you something was wrong!”) and be sure to remind them that the next time someone presents with the same symptoms as yours that they should consider Celiac.
(2) find a Celiac-savvy GI–how?
Call the local celiac support group and ask who their medical advisor is—that’s who you want an appointment with …pronto! (my new GI guy is the one in this area)
(3) you need proper follow up care, so you need someone in the medical community as an ally.
I am fortunate that I found a new GI who not only “gets it” but he is willing to accept articles from me, talk with me (not at me) and he truly cares. He feels terrible about how long it took for me to be acknowledged as a walking dead celiac ( and I figured it out, not any doctor, BTW) and I have sent him 8 other people to help (6 celiacs, one NCGI, one ulcerative colitis)
My best advice? Find someone to help you and then, pay it forward.
Good luck, hon!
I highly doubt I will ever trust doctors again. If I’m in a car accident I will happily have them put me back together again, but I won’t trust them as far as diagnosing illnesses. 10+ years of malabsorption, dizziness, iron infusions, hospital visits, specialist after specialist saying “you really are a mystery!” I was finally diagnosed by my friend who is not a doctor or nurse, and I demanded the blood tests based on her suspicions. They were off the charts. Years and years of unknowingly hurting myself! 🙁 I am moving on but kinda would like to give those doctors the finger too. lol. I didn’t bother getting a biopsy since my numbers were so obvious and all of my seemingly unrelated symptoms matched up. 6 months GF and I finally do not have severe anemia! 🙂
Good point Heather, I can’t speak highly enough of the surgeons who saved my sight after retinal detatchment. So there are some great ones. I just need to remember to only get regular conditions from now on 🙂
oh yes,….”regular conditions”…if only! Right, MW.?..:)
what are those? hahaha ..hmm…ingrown toenails? a “boo boo”? the “common cold”?
I agree. I am grateful for my NEW celiac-savvy GI (that only took me 25+ years to find him) and my female GYN (also very wise –after I struggled for 15+ years with reproductive/fertility/VERY early menopause complications) She had to do a total hysterectomy on me at 47. 🙁
Those symptoms were all celiac-related ! –and ironically, her doctor husband -was the infertility doc I saw many years before!!….:(
and HE did not test me for celiac, either!!
I should be PISSED about all that, I know. I have no children as a result. My deepest sadness.
Yeah, if anyone is going to strangle a boatload of docs, it’s gonna be me.
I serve as my own “primary care” doctor now. I ask either of these 2 docs that I trust now …to order any tests I want. They give it to me. They look to me for my care.
Again, ILLUMINATE the docs who screwed it up, everyone!!….and move forward..
Irish I have the same issues. PCOS diagnosis lead to celiac lead to…
While speaking with social worker friend she mentioned how many “sick kids” keep coming into foster care. Untreated allergies, asthma, in addition to just bad parenting. At first I was very angry that those unwilling or unable to care for kids had no issue producing litters of them. I have evolved to a point where I am taking steps to heal myself so I can become either a special needs foster or adoptive parent for those with celiac type illnesses. Sadly the foster system in my state doesn’t recognize celiac as ” a real disease” & the foods provided to foster parents are “healthy & nutritious” (wheat laiden) foods. Without knowledge or support these kids get shuffled around ultimately ending up in the childrens hospital for long periods because the system is unwilling or unable to ask the right questions.
I have a couple of physician bills that I’ve been struggling to pay, not that I can’t but because I just don’t want to. These are for two different allergist/immunologists who were completely ignorant about how food sensitivities cause one’s immune system to wreak havoc on one’s body, and who knew much less about gluten intolerance or Celiac. Earlier this year when I took my 3-year old to my trusty allergist whom I’d been receiving allergy injections from for the past 15-years, I was basically ridiculed for worrying my (little wasting away) self over something like food sensitivities when I should be concerned about allergies. My son was positive for IGG and DQ8, but I knew my sick child did not have a food allergy. He bullied and I caved so my son endured the $1100-in-his-pocket allergy test. No allergies. I persisted in my line of questioning about cross-contamination with gluten and he firmly told me that gluten-free was just a a fad. I asked the god (gluten oblivious doctor) if he had read any medical journals since graduating medical school and offered to wait while he googled gluten intolerance. I never returned for anymore allergy shots, the god sent the pediatrician a nasty gram stating that I failed to bring him to his follow up appointment, which had been canceled well in advance. Why is it that allergist do not know IgM or IgG? Since joining my son in his gluten-free life, I’ve not had one sinus infection. I’m sure he’d say it was all coincidental, but he’ll not get that chance. There are so many life-long aches, PCOS, endometrosis, miscarriages, herniated disc, arthritis, etc that have all but faded. Now I realize that maybe my brain fog will lift, among other things. So those sharp ruthless pains I felt every single morning over the course of my entire life was actually not normal? The one where countless doctors told me to eat more fiber when the hysterectomy didn’t stop it? The whole wheat kind of fiber? The second A/I-god said we just needed to keep our child old home for about 2 years to build up his immune system. Lab results showed nutrient deficiences, and at this point just knowoing about leaky gut and malabsorption was way more than both these bozos put together. Perhaps if the first god knew a thing or two about the human immune system and food sensitivies he would have caught my undiagnosed/unconfirmed gluten intolerance and saved my child from having to suffer from the poison that is wreaking havoc on his health, mind and body.
I’ve experienced enough improvement (although still healing) to know I will never intentionally eat gluten. Ever. My husband asked our family doctor to test him for antigliadin antibodies. He only ordered lab for IgA. He received a letter from that god reporting, “NO CELIAC.”
I’m bitter at the moment, but I will take Debbie lead and use this opportunity to bring awareness to the gods in this area by explaining how different our child is now that he is has been on a strict gluten-free diet. Also if a 3-year old can assocate the effects of gluten enough to understand food ingredients, the doctors should be able to grasp it too. I hope.
Thanks, Gluten Dude, for this platform!
I do not have celiacs but my niece does. She was diagnosed withCD when she was 2 1/2. She is now 11. I am in awe of her on a daily basis as she not only survives but thrives with a disease that I don’t know if I could live with. I remember her when she was 18 months and starting to get sick all the time. We would take her to the doctor and he would tell us that its was a cold, the flu, a virus, etc. But she never seemed to get better. By the time she was 2 she was lethargic, projectile vomiting, had stomach aches, bowel issues. She looked like a child from a country that was in a famine. Distended stomach, skinny limbs. My brother and sister in law didn’t know what to do many people including some family members were telling them they were over reacting. Her pediatrician told them she was just spoiled and trying to get attention and just needed a swift swat and for them to be tougher on her. My brother and sister in law asked me one day if I thought they were over reacting and spoiling her. I told them NO! Not to listen to any of the people telling them that. Shortly after one of the mom’s in the play group told them to take her to the doc she went to. I am so glad we did. He took one look at her and really listened to what the symptoms were and told us he thought she had celiacs. He called a ped gi and got her an appt that day. The ped gi took one look at her too, took blood and sent her to children’s hospital for a battery of tests that day. We were told if we had waited much longer she might have died. The ped gi also put us in touch with the celiac clinic at john’s Hopkins. Within weeks of going gf she was already doing better. As I said she is now 11 and active and as healthy as she can be. We make sure she is kept up to date on research in celiacs so that she can make informed decisions and be her own advocate. She even knew at 3 to ask if things were gluten free but she said “duten fee”.
Reading all of these posts on this blog give make me feel better that my niece will have support groups to go to if her family and friends aren’t enough. Even though we can sympathize with her we really don’t know what she is going through. Thank you for having this blog in place.
Thanks for sharing your story Karin. I’m so glad your niece is doing well.
I am a registered nurse and I knew um, nothing about celiacs prior to my diagnosis. I have worked in the ER for years and yet knew nothing about it!
As a patient, like all celiac sufferers, I have a horrendous story to my diagnosis, but the long and short of it being that although psychiatric problems were the first/second/third thing every GP I’ve ever been too about the symptoms ever said (it was always in there somewhere), someone finally listened to me and tested the right thing and I praise GOD that I found a good’un.
I am honestly not surprised about the lack of health community knowledge about celiacs, because a) it’s not immediately life threatening and b) aren’t we (celiac sufferers) all crazy anyways??
I wish I had known something about it, because hell, I would have picked it up myself a lot earlier than anyone else did.
As a health professional, I thought I was going crazy with my constant symptoms with no obvious clinical basis, so I just told myself that I was ok and I would just have to live with the constant pain, nausea, diarrhea, vomiting, constipation, teeth problems, nerve problems, etc… list goes on. Crazy aye, I think I drove myself there, I had no answers so I just ignored it, but it wasn’t going away.
My celiacs demanded attention and finally I returned to the GP and she mentioned celiacs, although her third suggestion was maybe I should see the psychologist!! My blood test and biopsies were positive+++ and here I am newly minted gluten free lifestyle, HEALING!
What I want to know is if it is so common, why aren’t GP’s encouraged to test those who have iron deficiency and symptoms of leaky gut or vague autoimmuny symptoms for it? Why isn’t there a bigger push to get them to take notice? Why do we all have to go through so much trauma to get anywhere, anywhere at all with our doctors? How can they diagnose ibs without a clean celiacs blood screen? What gives them the right to make us think we are going mad? Do you know how severely deranged your mental state has to be to be causing actual bodily upset like gastrointestinal symptoms and the others? It has to be pretty high on the level of derangedness!
So turns out I’m not crazy, and I tell myself everyday that I am healing now! I am my own health advocate, I am the only person going to look after myself and that is what I am doing now. Do not rely on your GP, if something is wrong with you, you need to make them understand. It is not in their nature to push past the initial diagnosies to look for something more sinister or hidden unless there are great big arrows pointing them that way. So make those arrows bloody big!
Life goes on… Better and better
Wow. I thought that I was the only one! I’ve actually developed an eating disorder because of years of misdiagnosis. I also don’t want to eat pasta or shop bought gluten-free products as a result. Bloody Dr’s!