We’ve all heard the doctor horror stories (and if you haven’t, read them here…disturbing to say the least).
We all know that celiac disease continues to be misdiagnosed and that the average time to get accurately diagnosed is 6-10 years.
We all know that because there is no “cure” for celiac disease and no drugs to treat it, and therefore no financial incentive for the medical community, it often gets overlooked.
What you may not know is that so many people, while trying to find a reason for their ailments, are diagnosed as having psychological issues. Imagine that? A doctor saying you need psychological help simply because he/she can’t find a physical reason for all your symptoms.
I hear it over and over again and it frustrates me to my core.
I want share a story that a fellow celiac sent to me. Not only is she a celiac, but she is a registered nurse. And yes…she was told she was crazy.
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I am a registered nurse and I knew um, nothing about celiac disease 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 to about the symptoms ever said (it was always in there somewhere), someone finally listened to me and tested the right thing.
I am honestly not surprised about the lack of health community knowledge about celiac, 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 celiac demanded attention and finally I returned to the GP and she mentioned celiac 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 autoimmune 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 celiac 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 diagnosis 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
One day, when all of the doctors have been replaced by computers, this will never, ever happen again…
Molly nearly all medical students have handheld “cheat sheets” ie they google symptoms…they STILL don’t come up with celiac when they enter our symptoms.
Had one idiot intern googling symptoms on chart (when no one had talked to my friend yet) walk in after a few poke & push announce she likely had lung cancer…in an otherwise healthy, never smoked, doesn’t work industrial or construction woman. Meanwhile her lung was 3/4 collapsed & filling which he missed. 18 doctors, a sign that anyone saying the word cancer in her room would meet with dire consequences & kicking out the resident that loudly complained about it while his patient was napping. FINALLY got to an infectious disease expert who was stumped for 3 days before reaching a disease 8 people on the entire planet had (& died from) with accessory celiac. So much like Irish she was at heavens gate before someone bought a clue!
With the variety of symptoms this disease & associated auto immune issues comes with its almost no wonder it takes a while to riddle it out…hopefully before we are dead!
I know that in some cases celiac is just really hard to figure out (as SconnieGirl’s doctor pointed out, it mimics a lot of other diseases), and a technology-based diagnostic procedure wouldn’t necessarily make a huge difference in figuring out the most obscure cases. But in so many other cases (including mine), people are going on WebMD and putting in their symptoms and then going to their doctors and asking to be tested for celiac, and finding they do indeed have it. For me, that was after several years of being blown off by doctors (not called crazy, although they did all think I was stressed).
Personally, I would be happy to have a doctor typing all of my symptoms into a computer system and then testing for the different options the system came up with (because it’s still a reality that it’s nearly impossible to get tested for anything without a doctor ordering the test and insurance paying for it). It’s more systematic and logical and removes the burden on doctors to just remember everything themselves. People look things up at work all the time; why shouldn’t doctors? We know they’re too busy to keep up with continuing education, and we know medical school tries to cram too many facts into them for anyone to possibly remember, so why do we expect them to operate without the help of the technology that everybody else uses? Sounds like the intern you’re referring to didn’t do a very good job, but for the most part I think it’d be a valuable tool if doctors would just swallow their pride and use it.
First words out of my GI’s mouth after diagnosis? “You’re NOT crazy!” I almost hugged that man! Fourteen years of being dismissed had done a number on my confidence.
Don’t you know, I’ve since talked to most of the doctors who missed the opportunity to diagnose me. I don’t want anyone else to be passed over. I was gentle so as not to hurt their egos plus I wanted them to hear what I was saying. They all glazed over a bit.
Part of the issue is that there is an overlying “germ bias” in medicine – if there isn’t a microbe/entity that causes it, then it’s not really a “disease”. Autoimmune disorders (A-IDs) are largely “inflammation” syndromes, which automatically raise suspicion. That is “naturopathic/homeopathic talk,” not real medicine. (Note: I *don’t* believe that for a minute.)
I also believe, because many A-IDs disproportionately affect women, that there’s a gender bias at work unless it is an A-ID that affects men and women more or less equally or has a genetic component (i.e. rheumatoid arthritis, acute intermittent porphyria) or, if it affects men, it hits them five times as hard (i.e. lupus).
In regards to the psychological talk: unfortunately this also goes hand in hand with gender and A-IDs. There is a relationship between some A-IDs and the experience of trauma, and women are both far more likely to experience trauma and to express trauma than men are.
However, celiac defies all logic in relationship to the above. It has a genetic link and affects both men and women pretty much equally, and is largely devoid of a trauma trigger (other than the diagnosis itself, and what it does to your grocery bill). But the notion that your food could be killing you seems to be nutritional, not medical. And apart from dramatic consequences (as seen in another historical “nutritional disorder,” phenylketonuria [PKU]), it doesn’t get airplay. So it’s easier to fall back into failsafe: these vague symptoms are just psychosomatic responses because there’s no good cause.
Pfft.
“You’re not crazy, you’re sick and you probably have celiac”
has a familiar ring to it. 🙂 I believe this was the subtitle to my latest guest blog article “Celiac Awareness Needs to Start in the Medical Profession”, so I can totally relate!. I knew I wasn’t mentally ill. I knew it was organic.
How many people do you guys think are in mental health wards and they are really just sick from gluten? My GI doc and I think “tons”. It saddens/angers me actually and I wish I knew what could be done about it.
To the writer:
Every day is a healing day. Hang in there!!.As a nurse, you have the ability to reach more people in the medical community now. Your struggle will become your way to educate. Take good care of yourself!
🙂
I am not celiac. I wish I was. Count your blessings everyone of you.
I went through 20 years of the same symptoms and many tests to see why I suffered so much with IBS. My daughter has the same problems as I do. But she was lucky enough to be able to go to an allergist. He had just returned from a two week refresher course and it happened to cover nickle allergies. Which is what we have, plus I have an allergy to grass and grass family plants. Which includes most of the remaining grains.
So I am stuck with not being able to eat a variety of foods that are good for me. No leafy greens,no nuts,seeds,sprouts,choc, no processed or canned foods. No stainless cooking utensils, and the list goes on.
Be happy you are Celiac, seems to be a far easier life to live than mine. You have more variety available with your diet. I have to bake and cook everything that goes in my mouth. And that gets pretty tiring.
I am really happy to have Celiac websites available to me though, the recipes etc have helped me tremendously in food preparation with a few exchanges of ingredients.
I can relate to each and everyone of you suffering from the bloating, the painful muscle spasms, the constant running to the bathroom. ETC…….Lived on gravol and immodium for years just so I could eat and keep it in for more than 5 mins.
Blessings to each of you and to those who are just starting the healing journey.
Thanks again
Sharlene
Wow, Sharlene… that’s a pretty humbling list of requirements. And the whole list of grass plants that are off the table – rice, wheat, rye, corn… wow. That’s like the woman I ran into in the market the other day whose children were allergic to wheat, milk, corn, rice, and peanuts/treenuts and who couldn’t eat food colorings, nitrites, and sulfites. That’s about the time to unplug off the grid and become a homesteader… (which I’ve considered a few times). My most sincere respect for what you balance.
My god, Sharlene. I’m Celiac with several food allergies, dairy and eggs being two of them and it’s a challenge for me but nickel?! Are you feeling better? I can only hope you are.
Whew, I’m still trying to wrap my head around your situation.
Thank all of you for your replies. I took celiac tests, and the day before I pigged out on bread products all day just to make sure the gluten would be in my system. But all tests were negative. This was after learning about the nickel first. I lived a low nickel diet for about 2 years, and felt better, but not really good. I had days of off and on.. Then I went for more tests, due to always being plugged up, post nasal drip,cough etc. And that was when the grass discovery was made. Along with other things that didnt interfere with diet. So another learning curve came along, learning how to live without wheat and other grains. I am really careful with the grass and nickel so I can tolerate rice products on a daily basis. I dont eat lots of it though. If I have bread I dont eat cooked rice. I have no problem with root vegies, minus yellow turnips but can swedish turnips, the purple and white ones. Cabbage is ok too, and most meat, careful with fish and occasionally squeeze in a few shellfish. So many things I could buy if it didnt have soy, nuts, choc,etc. But, you know, with all the stuff going on with the GMO thing right now, I am just as happy being already trained into not eating those things. Soy and corn are the worst of the bunch. So happy to not eat those. Do I feel better? A huge big resounding YES I DO. I can leave the house, drive on holidays,dont have to learn where all the bathrooms are anymore. I know where each one is and how far apart they are, right from the northern part of BC , all the way to Vancouver. I know which are the cleanest, heated,flush, and which are closed in the winter. I thought about writing a bathrooms around BC book, but never did. Still think about it though. Still thinking it would make the best seller list. 🙂 Thank you all for your replies and your support. And its nice to meet you. I dont have to much time every day to check this page, but will check in as much as possible to gather ideas and hints from all of you. I pass on lots of info to my youngest daughter and others I know who suffer celiac dis-ease. Thanks again Sharlene
Sharlene,
I had so many intolerances at one time that my “okay list” was whittled down to almost nothing when I yelled…:what the f…, what’s left. for me to eat??”””..Hubs deadpanned “driveway gravel”?
I have been able to reintroduce a lot of foods but I cannot have many foods that are high histamines (that’s a big list of foods I Love and relied upon ) and yet, I am not complaining ever again about what I cannot have after reading what you deal with.
I have a question, if you do not mind my asking—-has any doctor suggested that this allergy can be overcome? treated in any way? injections? anything to heal your system… like a leaky gut protocol?
I hold you with the highest esteem for managing your diet so well and adapting to the rigors of it. I am sure it is not easy at all.
Hi Sharlene it sounds like you have it really tough. Just wanted to check if you are sure you aren’t Coeliac? I have nickel allergy too. Not as severe (well, I don’t take as much care of it as you do) and I know it improved immensely when I started taking zinc citrate. Not chelate which is the common form of zinc. Available if you ask a chemist to get it for you. Xx Helen.
Hi Helen, Was interested more in the zinc thing. Does it work like chelation in clearing the system or is something that coats the nickel from being ingested? Thanks Shar
I had been dealing with autoimmune symptoms, in and out of the ER and so much more for over five years… always the first, maybe second recommendation was psychiatric care. I can’t even count the times I either left crying or so pissed off I was literally punching my steering wheeling screaming “I AM NOT CRAZY!”
Two years healing now, advocating for my own health.
Sometimes this doesn’t even go away after diagnosis. After being biopsy diagnosed during emergency surgery to have my gallbladder out I was called crazy. I also have debilitating pain and swelling in one of my legs, my ankle will swell to twice its size and my calf will swell enough to become rock hard, this is pretty obvious to a doctor that there is a problem.
Instead he simply listed in my chart that it is a somatization problem. Basically, I’m so batshit crazy I am making myself sick. And not just the problem with the pain and swelling but ALL of my problems. Um… since when can you be so crazy you give yourself gallstones and need emergency surgery? Since when can you be so crazy you give yourself an AI disease? About the only thing I’m crazy enough to do is have fantasies of punching him right in his stupid face. We all know a celiac wouldn’t do well in prison so they’ll stay fantasies lol!
I can’t figure out why doctors are so obsessed with preferring people be mentally ill rather than physically ill. Frankly though it is my experience that there is more than one that shouldn’t be practicing medicine.
Frankly that’s proof of sanity in my book, Adalaide…
Next time someone hears that, maybe they should respond:
” I’m not crazy, you’re just lazy. FIGURE IT OUT!”
The best comebacks are always thought up way too late to be snappy or witty. I always win in my head though. 😀
perhaps people can use it for future ref? 🙂
put it on a tee shirt for wear during doctor visits?
“I’m not CRAZY, you’re just LAZY” t-shirts. I’m all over that one! But then again I own and wear a “More Cowbell” tee – hey, it was a gift.
Adalaide, to be told you have a “somatization problem” is a new one on me. I recall you talked of this before and I was speechless.
I’m always so sorry to read of what people have gone through before getting any kind of diagnosis.
It actually makes me crazy that doctors call us crazy! I mean really, how crazy do you have to be as a doctor to have my medical chart in front of you and to say that its all in my head?
We aren’t all nuts, other than the nuts that the doctors are all driving us. (And the fun kind.) But yet doctors push and push that we’re crazy not sick. And for some this even continues after a celiac diagnosis. About the only coherent thought I can form on the subject is WHAT THE HELL?!?!
Oh Irish I am so using that for future reference!! I got told I was just ‘genetically weak’. I wanted to be so rude but wasn’t brought up that way. Fibromyalgia. Stress. ‘Stop stressing and do yoga. You’re immune system is weak because you don’t control your thoughts.’ I was sick all the time!!!! I was stressing as I work and have to children and a husband to look after while I was continually sick. Some medical practitioners should really work in a lab and stay away from people.
genetically weak??!! oh Helen…that is just unbelievable. Idiot!
My friend told me she had a fellow celiac tell her that her doctor finally said to her in frustration, “Ruth, you’re just broken!”.
broken? 🙁
We don’t want them in the lab either … lol
Simple answer is abbot & pfizer labs pay best for writing their prescriptions. More “crazies they help” (cough) the better vacations disguised as continuing education the pharma companies will pay for.
My surgery to remove a healthy gall bladder made my healing from celiac worse because I was missing an apparently vital filter. My GYN/fertility doc was actually the one that asked if I had ever been tested. She knew my GI guy & was stunned even he operated without testing for the pain being severe gut spasms instead of gall bladder.
My GYN was stunned to learn my years of infertility/miscarriages were likely related to celiac and has vowed to test women should they have similar issues. She can see now that my very early and difficult peri-menopause was also a big fat clue.
My gall bladder was the first organ to go 30 years ago. I honestly do not know anyone in my large extended family who still HAS a gall bladder.
(we could have had a family plan extraction rate….)
BTW, I have tried to use the GB card and the fact that they all are on thyroid meds as a way to get them to be tested, but that failed miserably. 🙁
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Adalaide, has your doctor linked the swelling to the celiac? I have that in my left leg (oddly, my right leg is my problem leg -had a TKR last summer and still have problems with scar tissue formation). The vascular doc says it has nothing to do with it, but the nutrition NP I’ve seen says oh yeah. If I stick to the strict anti-inflamatory diet along with the GF, it really helps.
I have awesome friends that helped me link my diet to my symptoms. I haven’t been at this whole “don’t eat anything” thing very long, but I feel better than ever. (Or I did until this weekend… oops!) And “don’t eat anything” is an exaggeration brought on by my resentment of not being able to eat cheese every day.
To answer the question of “Why GP’s don’t look for CD”, my GP had this to say. “See the thing is, we work off of facts. This is this and that is that. There are so many symptoms that go along with it and auto-immune disorders that mimick it, that it’s (basically the last thing on the list to look at).” Med schools glaze over it, because they have the notion that it is a rare disease. Basically, it’s not something they can treat. We will treat your symptoms, not what is ACTUALLY wrong with you.
I was sick for almost 10 years. I saw every doctor that would agree to see me. EVERY one of them told me I was crazy, fat and lazy. EVERYONE! One doctor told me to take a daily 20 minute walk. smdh I couldn’t get off the couch due to lack of energy that could be attributed directly back to severe malnutrition. The only time I managed to get off the couch was for the 20 yd dash to the toilet. Ah, the life of a celiac! I, after many years of dread surrounding food, pretty much stopped eating and voila! My symptoms started to lessen and I started cruising websites for gastro diseases that are better without food. I found a link that went to a page that listed a whole long list of possibilities and there in the middle was Celiac. I found it in a medical book and devoured every word. This was better than food, even chocolate!!! This was information that would not only help me to help myself but would prove to myself ( I was actually starting to think I was crazy) and to the doctors that I had been right all along. I went GF on Aug 5th last year and will never go back. I am still not medically diagnosed ie testing because I REFUSE to willingly go back to the pain, the running, the praying, and dreading food to show a doctor a piece of paper that says I really am sick. I don’t need a piece of paper, I have peace of mind! And those TV commercials are right – THAT is priceless! I now educate every doctor, nurse, PA, the people in the checkout lane, the people in the farm store, everyone! This is a disease that we have to take the charge on since the medical field seems so reticent. I am also allergic to many other things but I AM NOT CRAZY!!!
I got the fat and lazy thing too. I wanted to just slap every doctor that said that. I got fat while being very physically active. While working a job 5 miles away from home, taking public transportation to work every day but leaving work late enough that there were no buses and walking home I was gaining weight. Then as I got sicker I couldn’t work, couldn’t even leave my house. And I got told the same thing… go walk every day, it’ll make you feel better, energized, blah blah blah. I could barely walk to the bathroom and even that was so painful I wanted to cry. I couldn’t have mustered the energy to walk around the block if my life depended on it most days. “Eat less” they say. There were many days that I didn’t even have the energy to eat. I have to go up a set of stairs to get to the kitchen and when I weighed my hunger vs. my energy level I decided I just wasn’t hungry enough to go up the stairs. Not every fat patient is a fat and lazy patient but doctors are too damn lazy to see that. The thing that always pissed me off the most about being told to eat less and exercise more is that the doctor telling me this was fat!
i think the doctors made me crazy! maybe it is some kind of social experiement
when i was a little girl my tummy always hurt when my mum took me to the doctor he told always told her i was making it up so i didn’t have to go to school. everyone always thought i was just being a difficult child. but when your bones hurt and you just want to sleep or you had been vomiting all day or you couln’t poo for 2 weeks and boiled rice is your favourite food and you cant stop acting a bit strange but you cant understand why and your doctor says you are just a liar, it really messes with your head.
i was really sick by the time i was 18 and by the time i was diagnosed at 28 i was malnourished my bones were breaking really easy my bone density level was that of an old woman in your 90s, and i was a depressed and anxious wreck who couldn’t get to work to function as a sane person.
(thanks to the blood bank by the way for noticing that my iron level was decreasing on each of my visits and recommending i see a doctor about possible coeliac disease.)
i am pretty sure i was a depressed child from effects of the illness and i am now an adult how still feels like a fraud even to myself because i don’t trust how i feel, even though i know it is not my fault.
life is definately a journey
Indeed it is Donna…indeed it is.
I had to laugh this morning because doctors have left me more than once frustrated and in tears. A couple weeks ago I actually blew up right in a doctor’s face when he told me all my current issues are anxiety and I just yelled at him. I don’t think I was helping my case for not being nuts at all was I? lol 😀
Yup. Doctors will make you crazy all right.
I feel so bad for all of you guys, I really do. I have no idea what kind of doctors you guys have, but I feel so lucky that I have the family practitioner I do. After reading some of these stories, I will never ever take her for granted, and quite possibly never let her retire. It took about two years for my diagnosis because of family history with lactose intolerance and low tolerance for lipids and thyroid diseases and ovarian cysts (I actually got them all, which was fun) but that is nothing on ten or fourteen years of being called crazy.
These stories amaze and sadden me and they speak volumes about our medical industry. When something as important as people’s health is driven by profit, it will never be the most effective system. Greed and arrogance will always gets in the way.
Crazy is doctors who cannot see what is right before their eyes.
I went to the same primary care doctor from 1997-2010. He sent me to every single specialist there is. He was willing to work with me to find the cause of the many, many symptoms and AI conditions I developed. This meant I spent hours in doctor offices, had more tests done and scripts written for me than you can imagine….but NO SYMPTOM RESOLUTION.
I was diagnosed with everything under the sun!.
I was a willing patient back then, taking drugs and following advice.
Where did it get me? Close to dying.
Yet, when I asked him point blank at the end of my rope in 2010, what would make me feel so anxious & exhausted..Doc, this is not me!
He answered “Nothing I know of” His next suggestion? A psych doc for meds.
Here’s the kicker: THIS GUY HAS THREE CHILDREN WITH CELIAC.
Think he feels bad now? oh yes. His only response : “I did not know how it manifests in adults.”
Here is the first article I gave him after my DX “Celiac: the great imitator”
https://www.mja.com.au/journal/2004/180/10/coeliac-disease-great-imitator
and here was the second–with all 65 of my symptoms and conditions circled in red:
http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
I saw him after 2.5 years of healing and never stepping in his office during that time because I am not there looking for answers anymore and he could hardly look me in the eyes. I needed him to check a tick bite I got. I figured he could handle that. I leave all follow up care related to celiac to my new GI doc.
I do not really blame him. I have not sued him. He’s a really nice guy with a nice family.
But I hope to God the next time he sees someone with the symptoms I acquired, he will order the damn celiac panel.
I agree completely with her words:
“Do not rely on your GP; if something is wrong with you, you need to make them understand.”
I’d extend that to apply to all areas of your health – not just looking at symptoms that might be celiac disease or something else. I’ve had a lot of great experiences with helpful doctors, and a few experiences with doctors that were fairly ignorant and missed obvious warning signs.
Hoping this isn’t TMI, but I’ll share one experience:
For me, the worst was when I moved to a new town and saw a GP that my hubby’s co-worker recommended. I saw her about the usual stuff, but at my yearly GYN appointment with er, after talking to her about the pain I was having, she recommended I see a sex therapist. Seriously.
Needless to say, I found another doctor right away. After one exam, he had me booked for an ultrasound which found a blood-filled cyst on one ovary. I was sent to a most-excellent OB-GYN doctor who operated within a few weeks and found that I had an extremely bad case of endometriosis – along with the endometiral ovarian cyst, I had endometrial tissue covering both ovaries, tubes, uterus and even my bladder. A sex therapist couldn’t have helped with that.
One thing I try to remind myself often is that GP doctors just can’t specialize in everything. There are so many health issues out there with so many symptoms. I firmly believe you have to do the research and be your own advocate. You don’t have to find a doctor that is an expert, just one willing to listen and to order all testing possible to help figure out your problem.
I agree. We do have to be our own advocates, but in many states and according to many health care plans, people have to go through their primary care docs to get to the specialists, (rheumies, cardios, endos, etc…) and to have tests run, to have lab work; etc..
Even then, those “specialty” doctors make errors, too.
I almost had another invasive breast biopsy because one radiologist
and one breast cancer doc said I needed it. A second was “on the fence” and the third opinion…. disagreed strongly. She’s considered the best there is around here, so I went with her and she has followed my case for a year.
Glad I listened to the third. She’s was right.
I got the same thing. I had terrible pelvic pain. The doctor I saw, way back in college, told me I was frigid and needed to learn how to relax and enjoy it. Unreal. It turned out, after years more of escalating misery, I wound up having to have an emergency full hysterectomy in my 30s when an ovary twisted around on itself after years of untreated endometriosis and hemorrhaging ovarian cysts.
As for the celiac aspect, I had another doctor, years before, tell me that my celiac-related symptoms were due to depression and that I really needed to be on an antidepressant. I asked, wasn’t she at least planning on running any tests? Thinking, of course, that she should rule out any physical problem (which I was sure I had, rather than depression). She looked at me with the patient face one might reserve for reasoning with someone with a very low IQ and declared that there “was no test for depression.” She had made up her mind. It couldn’t possibly be anything else. And I was, obviously, so stupid I must’ve thought there was a blood test for depression. I could go on and on and on with my horrendous patronizing doctor stories spanning decades. If anything requires the slightest amount of thinking or diagnostic effort, then the patient is obviously crazy.
E.J.
Isn’t that terrible? I’m so sorry you had that experience as well. I too had to have a total hysterectomy in my early 30s. It was worth it though, as I’m totally pain-free now. Hope you feel better now too!
IrishHeart,
Good point, and something I wasn’t thinking about. I have been blessed with good insurance that doesn’t require referrals, but also with a GP now that is probably a little “referral happy” anyways, which I don’t mind. He wants me in the right hands for whatever care I need.
Good for you for getting a 2nd and then 3rd opinion about your biopsy. I hope it turns out well for you!
Doctors look at me as thought I am a medical enigma! I have learned to live with it… LUCKILY I have figured out what seems to work for me, for the most part… And what doesn’t! Overall I am a very very happy individual… However, I do have stomach attacks pretty regularly. It doesn’t help that I don’t have a large intestine either.
Gluten Dude, I see you and I becoming FAST blog friends! 😉
Interesting article. I was diagnosed with IBS 11 years but I am constantly in pain, swollen stomach, sore stomach (no diarrhea) but my life has been frustrating every day for the last 11 years. A GP recently told me that I was gluten intolerant and another told me that there was no such thing! Aaaarrrgggh.
Now I’m not sure what to do but have to suffer with the pain each day.
Ask the GP to run a celiac panel?
Yes, I’d recommend finding a doctor that will start by ordering the blood work. You can read about the testing needed here:
http://www.celiaccentral.org/Celiac-Disease/Diagnosis-Treatment/33/
Thanks so much for the link. Will check it out.
It breaks my heart reading this, and makes me feel frustrated and upset all over again at how MANY of us still go through this, all the time. You just want to walk up to doctors sometimes and shake them by the collar until they wake up and start to pay attention to their patients. Dear doctors, please note that if someone has gut pain AND joint pain AND depression – at the same time – it means something different than if you have a patient with gut pain and a different patient with joint pain and a different patient with depression.
Analyzing one’s mental state of health WITHOUT looking at their physical health and how that can affect one’s state of mind? THAT’S what’s crazy. Considering what doctor’s should know about chronic pain and how this can affect you, it makes the entire situation even more incomprehensible.
Right now, my daughter is very sick and none of the doctors can figure out what’s wrong. She’s been diagnosed with celiac disease, and we’ve found allergies and some intolerances, but she’s still sick. She’s in pain every time she eats or drinks anything, so of course she resists eating and has been losing weight.
The look of joy on her face when we get a brief break and for some reason the pain isn’t as bad on that day? It kills me – she’ll eat like she’s been saving up for years to do it.
Now that we’re getting back all these negatives tests, her doctor has decided we should start looking at anorexia…because it must be mental if a few tests don’t give us the answer, right? I like your comment on this, Irishheart – she’s not crazy, he can stop freaking being lazy.
I just want to give a big freaking hug to everybody who’s having to deal with ignorance and arrogance when all they’re trying to do is get better. Seriously.
If your daughter is still actively healing all the damage she has sustained ( and it sounds like she is in the very early stages) there are days where the pain is nearly unbearable. Or at least that is the way it was for me. I am almost a year out and still have those days but they are fewer and farther between now. On those days I drink my meals. Boost is a staple for me. The chocolate isn’t bad if it is cold enough. If her pain is directly related to Celiac healing she (and you) can take heart that it won’t last forever if she is truly diligent about a GF diet. I hope that whatever her ailment that she finds the info that she needs and the products that will give her a good quality of life again. We all deserve it. Those of who have walked a mile in her shoes are more than willing to offer comfort, advice or a safe place to rant. HUGS!
Also, if you are still in the early days of eating gluten-free, there’s a good possibility she might accidentally still be getting some gluten. It can take a while to really figure out all of the cross-contamination and hidden ingredient pitfalls. Are you still using your old cooking utensils, like colanders, for instance? These might have to be replaced.
I made an appointment for a physical and specifically asked for the Celiac test to be done. I started having what seemed like auto immune responses to something over the last 6 months…I am no doctor, just highly self aware and have experimented with eating raw and eliminating gluten and grains and dairy from my diet. Each time I did this, I noticeably felt better digestively. Once I started having joint pain 6 months ago and itchy dermatitis on my face 2 months ago, I was convinced something was up. My doc said over a level 9 was considered Celiac, I was a 53! Going for my endoscopy the 25th. I am just happy I found out what was wrong quickly without having to go to multiple doctors.
I dunno if I’m allowed to be here since I’m not officially a Celiac… But I most definitely am. My story sounds like most. I was kind of a sickly child with ear infections and bronchitis every year. I had warts in my teens. My teeth were awful! But I could eat whatever I wanted no problem and I would gain no weight or no adverse side affects (so I thought) I did suffer from extreme gas and I didn’t have regular bm’s but I thought it was normal, that it was just my normal flow. My menstrual cycle was the worst, usually lasting about 8 days! Life goes on, I have 2 beautiful children I work graveyard shifts 10 years (again so I thought) with no problems and then I decide to go back to school and all hell breaks loose. So since about 27 I started having other problems. I was in a car accident on my 27th birthday and got some pretty nice back problems that required about a year of shock therapy(fun!), then my GP said I had bursitis when I complained of pain and stifness in my jjoints, she also treated me for eczema that year! I started to gain weight although I have to admit that I was a beer and food enthusiast/connoisseur, and at night I would get extremely bloated. Now I work nights so night time is my work day, I was in tremendous pain and had no idea why. I wasn’t eating very healthy but no matter what I ate it seemed like I was getting this issue. I would look 6 months pregnant and my inflated stomach was putting pressure on my other organs. So I decided to rehaul my diet. I started counting calories and doing zumba, and slowly but surely I lost 20b pounds and was feeling great! I spent 28 getting all sorts of dental work done (3 crowns, 2 oral surgeries etc) got braces again at 29. While I was dieting I was eating a lot of soups, and since all the dental work I had to maintain a soft diet so I continued with soups and a smoothie about 5 days a week. I was healthy! Feeling great! I was in great pain from the crazy things the orthodontist was putting me through, still with the back pain but taking ibuprofen like tic tacs but otherwise doing awesome. At 30 I went back to school and almost instantaneously my health spiraled downwards. It started with headaches, then the constant nausea, the bloating was there, I would alternate between constipation and diarrhea, and my stomach would gurgle these gas bubbles, my stomach felt sour like if there was curdling going on in there, the brain fog and the exhaustion were a constant, which was not good for my situation (sports mom of 2 juggling work and school) and i started losing weight so off to my gp i go… She tells me I have gastritis and ibs.I stop taking the ibuprofen and start taking acid blockers and acid reducers. The symptoms are still there so I have a slew of blood tests, urine tests, endoscopy (the endoscopy technician tells me that he had the same problems when he was working abd going to school, that it was just stress) and I’m healthy although my iron is a little low and my vitamin D is very low (lights flashing anyone?!) So I leave my gp’s office with yet another prescription (for the vitamins im low in) and the advice to follow an alkaline diet and eat bread or crackers when my stomach is upset (thanks doc) at this point my weight and health is still dropping but I’m trying to follow doctors orders but I’ve pretty much lost faith when I was getting no help. I was
so lost in my sickness and ultimately ended up quiting my job. 1 day I found a celiac checklist and I was flabbergasted by the amount of problems that were all tied in together, I was convinced that this was what i had! I was so excited to FINALLY have a possible answer to my health problems! Boy was I in for a treat. I stopped the prescriptions and I started a food journal and went gluten free(ish) for a month, I religiously logged all my meals and symptoms and at the end of the month sure as sh*t every time i (either accidentally or newbie ignorantly) ingested gluten I was sick. After about a week without gluten I started to feel better! For the 1rst time in over a year I didnt suffer constant nausea!!! Victory! But boy did I suffer when I did get glutened… So here I am off gluten for about 3 months, still trying to learn everything, still trying to maintain everything around cooking everything myself now, still trying to mom and have a life although I hate to go out. I got glutened in a bar in Vegas! I paid 22 dollars for Ciroc and got some wheat b.s.!!! Anyways, I don’t know if I should even bother with the dr (I’m def getting a new gp) because of all the horror stories I read. I really don’t want to get poked and prodded and waste my time for nothing, or nothing different than what Im already doing. I’m still struggling to maintain balance with this new disease, I don’t have time for 1000 drs appointments.
P.S. Im very angry that I had the endoscopy done amd there was never any talk of looking into my small intestines, nor was I ever checked for celiac. I feel failed by the health system
Sincerly,
A hippies daughter who never really trusted Dr’s in the first place..
I was diagnosed with an eating disorder. Everytime I ate carbs I complained that I felt really bloated despite not being overweight. My parents assumed I was lying in order to diet and lose weight. In less than 15 minutes and without me opening y mouth I was diagnosed based on my mother´s sayings and forced to eat against my will plenty of carbs…