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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Many People Are Actually Self-diagnosed?
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124 posts in this topic

Self-diagnosed with my doctor agreeing. We were going to do the blood work and biopsy, but when I tried to eat gluten again to get ready, I was completely miserable. So I didn't bother. Nothing could MAKE me go through that again. So here I am, going almost a year gluten-free (though I've only gone 3 months without CC, simply because I live in a house with 5 gluten eaters).

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And what about all those Atkins people? How many of those that stick to the diet do so because the lack of gluten has made them feel better, and they don't even realize that that's what it is.

Yeah- hey! I was one of those "Atkins People" for over 11 years! I never could figure out why I would detox for 2 weeks solid, then feel great but everytime I tried to eat pkg'd low carb food (hidden gluten) I feel awful but if I ate fruit I was ok ???? Talk about confusion. There are a TON of low carbers out there that can't lose weight or feel right except on the diet. The sad part is that so many of them probably do not have to be completely grain free. They just need to be OCD about gluten & possibly dairy.

I am self-diagnosed by the way. After racking up about a dozen symptoms over a 2 yr. period (after going off Atkins) I felt like I was dying. I ran into a friend with Celiac and made the connection. The only way I'd been eating (to feel well for about 13 years) was 2 different diets that were both gluten & dairy free. Guess what? I'm feeling better! I've been gluten free & mostly dairy free for about 3 months. Ha - amazing.

I would have tried to get a diagnosis (for the sake of my kids and have them tested too) but this all happened right after my DH was laid off & we don't have Med. Insurance. Now it's too late but I have my answer. I've been proving it myself for 11 of the last 13 years that I'm either Celiac or Gluten Intolerant.

It's a relief just to finally know what this is - not just treating symptoms & happening on something that worked.

FooGirlsMom

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I am another that couldn't understand why I felt so great on the first stage of the South Beach Diet and then went downhill when I started adding in whole grains and fruits. I never made the connection. I ate whole wheat everything because I thought it was healthy. I thought my bathroom issues were due to having my gallbladder removed. I eventually went on to have constant stomach pain, reoccuring outbreaks of shingles, mono, the flu, repeat sinus and bladder infections, rashes, it was nightmare the last year on gluten. I had an EGD to check for an ulcer and they told me I had gastritis and noted significant inflammation in my small intestines but didn't biopsy for celiac (I'm in WV and basically doctors here act like they've never heard of it)! I kept getting sicker and finally my cousin who works for GI doc in Maryland asked me to send her all the records from my labs and the EGD so the doc she worked with could review them. She immediately called and said he said it looked like celiac and to quit eating gluten and see if I felt better and sure enough. That was the problem the whole time.

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I think many doctors are less inclined to listen to women, especially young women, treating them as if they are hysterical and attributing all symptoms to "depression".

This was my experience. I'M JUST A STUPID LITTLE GIRL WHO DOESN'T KNOW BETTER!!!!!!!!

By the time I suspected Celiac, I had two issues: The anxiety from hell, and the fiery hatred of a trillion suns for being dismissed. Oh, and fatigue didn't help. This meant that having to look for and deal with another doctor was an absolutely terrifying thing for me. I had every intention of looking up doctors, or maybe calling an old one to ask for the testing, but I kept hemming and hawing and procrastinating. MY WHOLE LIFE EXPERIENCE WITH DOCTORS (well, I had a nice pediatrician, I guess) up to this point was one of either dismissal and =!@$#$^& or ignorance. Not encouraging.

So I just said, "&%$# it I'm just going to go gluten free." And what do you know, that's my issue. My parents see how serious I am about this and they've told me they're proud of me. The only issue is that they don't realize they very well could have it. But I don't know if an official diagnosis would make them more receptive to the idea that they could be Celiacs too.

All this to say, I'm self-diagnosed. :P

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After 4 years of feeling horrible (headaches, jaw ache, extreme fatigue, sick-like having a cold all the time, feeling like Alzheimers coming on) my doctor ran a test for allergies and included a Celiac test without telling me. He called one night and said, "Your blood work came back positive for Celiac Disease. You need to see a gastroenterologist. My phone is cutting out, bye." That was it! I had to Google it!

I followed up with endoscopy from gastroenterologist and he confirmed. It has only been 3 weeks, 3 confusing weeks. Glad to know I am not a hypochondriac, like my doctor made me feel for the last year.

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Like many people here I feel extremely let-down by my doctors' inability to twig on in the face of what now seem like some pretty obvious symptoms- recurrent canker sores, total exhaustion, severe depression since childhood. Medicated (ineffectively) for the depression, and told to go away and deal with the canker sores and tiredness, they didn't know why and once they'd established that I didn't have cancer in my mouth they didn't know what else to suggest. Many miserable years.

My suffering lead me to search high and low for help and THANKFULLY I eventually visited a nutritionist and she said she suspected I had been celiac since birth. A gluten-free diet very rapidly eliminated my symptoms, and I've been ulcer-free, depression-free since I started the diet(about 3 years), plus I can stay awake all day B) I was able to wean myself off all my meds about a year after starting the diet, and I haven't looked back, now I can roll with the punches. Any accidental glutenings lead to a dramatic return of symptoms for a few days. I haven't been back to see my doctor in all this time, I'm not going to hold my breath as to what her reaction would be <_< Honestly, I would love a proper diagnosis but I don't think it's possible at this point. Might pay for the genetic testing. If I could get an appointment with a sympathetic doctor who might diagnose according to symptoms that would be sweet, but I'm feeling pretty cynical about doctors and like I just need to get on with looking after myself.

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I am also self diagnosed-with my nutrionist who agreed with me. I had "ibs" issues since I was a child including joint pain, ITP (platelet levels drop extremely low), bad acne, fatigue, brain fog, bad menstrual cycles. Then in 2009 I had dh on the back of my elbows that persisted for eight months and then directly after that I had appendicitis.

After the appendicitis suddenly I got dh on my face and scalp and my hair started falling out. I was determined to figure out what was going on. At the time I had no idea these symptoms were connected to gluten. I had been to a bunch of doctors in the past who were of no help and only wanted to medicate my symptoms. God answered my prayers when I happened to find a diet online to help with menstrul cramps (as they were getting really bad) Well the diet said to cut out all gluten and dairy, so I did for one month and all my symptoms drastically improved-suddenly the light bulb went on. I am gluten and mostly dairy free now for 4 months and am feeling so much better!

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Like many of the illnesses in my signature, I diagnosed myself with celiac first. Actually, I'm not "official" right now, but a high IgG from recent lab work (I only got it after I called a month later and made them fax it to me... :angry: ) and symptom relief from avoiding gluten pretty much speaks for itself. After many years of "IBS", depression, nerve pain, fatigue, insomnia (alternated with days that I just can't get out of bed), joint pain, a hiatal hernia, and many other symptoms (I swear, I could have written the majority of posts in this thread), I have recently decided to go gluten free.

I was first diagnosed with the POTS, and then 9 months later, EDS. I have met too many people with EDS on various message boards and forums who have had issues with either celiac or gluten-intolerance to ignore the fact that I should at least investigate it. I've since read some statistics that there is a higher incidence of celiac with those who also have EDS. Also, right around the first time I started suspecting that gluten might be exacerbating my underlying health conditions, at least two of my friends started asking how much gluten I was eating, and suggested that I give it at least a month.

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You really shouldn't be so surprised; the estimate is that for every one celiac diagnosed there are 29 undiagnosed. And celiac is usually the very last thing that pops into a doctor's mind, because the drug detailers have not educated them on it :o

This is so true. The drug companies seem to do all the "educating" of the medical community after they get their MD. Celiac/Gluten Intolerance cannot be "cured" or even "masked" with drugs. It is only the old-fashioned way - through diet - it can be managed. They have no interest in it because there is no profit in it.

FooGirlsMom

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This is so true. The drug companies seem to do all the "educating" of the medical community after they get their MD. Celiac/Gluten Intolerance cannot be "cured" or even "masked" with drugs. It is only the old-fashioned way - through diet - it can be managed. They have no interest in it because there is no profit in it.

FooGirlsMom

Hi all!

I am new here but I want to chime in on both topics if I may.

Self-diagnosed with confirmation from a doctor.Finally!!

Totally agree with you about the $$$ made from NOT diagnosing, just symptom-management with DRUGS. This is a long answer (sorry!) but shows how much they rely on drugs and surgeries to solve problems when a proper diagnosis and dietary change could have spared me years of misery.

I have had horrible bouts with gastro symptoms for over 12 years (at times so bad I had to stay home from work for days. I was told it was "IBS") and in Feb. 2008, I "erupted" in horrible burning muscle/joint pain, insomnia, exhausted, foggy head came on me out of nowhere, itching and red skin/scalp, hair loss,depressed moods! ..tons of debilitating and bizarre symptoms. Doctors were useless and I had to fight for many tests and blood work, even MRIs to find the CAUSE of the pain and illness. I was prescribed --and ultimately sickened by--hundreds of drugs to "try". That's what doctors do---medicate and "symptom-manage" and shove you out the door. One rheumatologist insisted I take methotraxate--even though I do not have rheumatoid arthritis!! I was given pain meds, sleep meds, arthritis drugs that ripped my gut, muscles relaxers, anti-depressants, anti-anxiety meds...etc... So many condescending doctors; so much anguish trying to find out what was wrong with me. One example of this craziness: The gastro's NP told me it was "just GERD" and gave me a whole slew of drugs, including anti-depressants!! (which I threw away). She snarled at me "Don't be ridiculous!You can eat gluten." EVERY drug I tried (briefly) because I was desperate --and they all made me sicker and sent me to the ER more than once with dehydration. I lost 90 lbs rapidly and most of my hair and I thought I would die before someone figured it out....I even said the words, "I would rather be dead than live like this"--even though I did not really mean it because I would get out of bed every single day and fight to find an answer. I was skin and bones --I was very "voluptuous" :>) and active before this happened to me!!---but I couldn't keep anything in. They said I was hypothyroid, put me on synthroid, but it made me go "hyper" so I asked another doctor to check my TSH--it was fine and I had very low thyroid antibodies so I asked him if I needed to take it--he said NO!

For pete's sake!! What the heck was going on then?? I was trembling and unable to sleep more than 2 or 3 hours a night for many months...and I developed anxiety (something new for me) ...and of course, the doctor gave me xanax and a script to see a psychiatrist.!!! Because my father had just died and I was obviously upset and feeling so poorly, I went. I am psychologically sound (gee, that's good to know!!:>) and the psychiatrist actually said to me....Do you have food allergies?? I am grateful to her for suggesting it because that's when I started researching. Turns out, that was likely when the celiac was "triggered"....even though I had classic GI symptoms my whole life. This horror dragged on and on. Everyone tried to give me drugs, not help me get well. Told me it was "menopause", "stress" and I would leave a doctor's office and say "you don't know ME---this is not "just stress". I'm ill because of something going on in my gut!!I knew it had to be SOMETHING so, I started reading and researching and wondered about celiac. Begged for a blood test--it was "indeterminate". Whatever that means.

I was determined to find the CAUSE of my problems.I even went to a Naturopathic Doctor who treated me for a year and said "maybe it's gluten"?? I should have listened to her--instead of the MD who told me (after an IgG test that said I had a severe reaction to" soy" ) to avoid that for 6 months.I did as he said, using a rotation diet that included WHOLE WHEAT !! and guess what? Worse symptoms!

I wandered from specialist to specialist for 3 years, getting more and more burning neuropathy and struggling to walk and sit and lie down without pain, and doing anything I could to get the musculo-skeletal pain under control with all forms of PT, massage, chiropractic, biofeedback, acupuncture,etc...with NO relief. Doctors shrugged their shoulders at me. We even thought about going to the Mayo Clinic. We had spent thousands of dollars--our entire savings--looking for an answer. We made jokes about finding a DR. HOUSE to figure me out. But it wasn't really all that funny.

One day, I received an email from my cousin's wife (a celiac) who said...I heard about your struggle with a mystery illness---are you sure it's not gluten??? PLEASE GO GLUTEN FREE RIGHT NOW! My husband, who has watched me deteriorate for 3 years said "I AGREE"--I don't care what the tests or the doctors say...let's do this!!

So, we did.

A few weeks later, I returned to my primary care doctor and told him what I believed was wrong with me...and he said with a look of horror on his face " OMG, you are right!! I don't care what the blood work says...those tests can be wrong! NO gluten and dairy !!You had so many symptoms, I didn't make the connection..." Now, this guy has children with celiac and he could not see that was what I had??? &^%$! He apologized, but I am having a hard time trusting doctors ever again. I refuse to eat gluten to have the biopsy done. I am not poisoning myself!

I aged 10 years in 2. I do not even recognize myself in the mirror. My legs and arms are so weak. This even affected my once beautiful white teeth. I am a mess.

But, I refused to give up.

I am gluten, soy, diary free and see some improvement in just a month(no diarrhea is a huge thing:>) WHOOHOO! but I imagine it will take me a long time to heal as I have had poor health for so long. In retrospect, I can see how it all started in 1985 with the removal of my gall bladder; DXed with "IBS","fibromyalgia"..I had many inexplicable miscarriages, etc...sigh...

ah well, ...I keep my eyes on the prize! I look forward to healing and regaining my health and my life.

whew--that was long, but serves as proof that (1) not all tests are conclusive (2) symptom treating doesn't solve the problem and (3) we are our own best advocates!!Thanks for "listening". This forum has been beyond helpful to me and I am grateful!

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In my household we have one of each. I am self-diagnosed gluten-intolerant: blood work and gastroscopy both negative, trace amounts don't bother me, larger amounts do. My husband, on the other hand, just had a positive biopsy last week. He has very obvious and medically-confirmed Celiac disease.

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I have to chime in and say that my doctors were actually pretty fast in coming to a diagnosis. I was sick for six months prior to diagnosis. My primary care doctor did a whole slew of bloodwork, yet neglected to throw in a Celiac panel. I think that part of the issue is that most doctors think of Celiac disease as having D as the main symptom; however, the diarrhea doesn't start until a lot of damage is done to the small intestine. I consider myself lucky that I see an endocrinologist who personally has Celiac disease. We were discussing my symptoms and the first thing he says to me is "Have you been tested for Celiac disease"? So, I guess I can say that not all doctors are clueless B) Ironically, my blood work was negative. I actually had the EDG done to look for an alternate diagnosis. The gastro doctor said that he might as well biopsy the small intestine while he was in there even though my blood results were negative. I'm very fortunate that he did because the results were positive. Having a diagnosis is good for me because I can honestly admit that I may not have stuck with the diet without it. I feel better already and I can say that even CC immediately brings back all the symptoms.

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I had GI symptoms for about 15 months or so before I finally went to the doctor. I had one bad summer and then I felt better (mostly) for a while. Then this fall I finally had a stabbing pain in my side that I was sure was my gallbladder. I finally went to the doctor. Once I finally went to the doctor I was diagnosed fairly quickly. Thankfully he ruled out my gallbladder and then ran lots of bloodtests including celiac panel. Silly me said "Boy I hope it's not celiac, I don't think I could eat like that".

Of course it came back positive. Then it took 6 or so weeks from then to get my endo (which was Jan. 20) and came back positive.

I feel pretty lucky my doctor never once told me it was in my head and was willing to test for lots of different things.

When I told him I thought he did a great job he said it would pretty hard to miss it with it being in the news and with so much more awareness out there now. Form what I hear on here, I wish that were always the case.

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Well, I think it still is the case (in some cases :P ) but I think less and less so, thank goodness. I am glad your path was relatively smooth. Hope it' s the same for more and more of us :) We deserve a break.

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My doctors have ignored me for years. I didn't know that Celiac/gluten intolerant even existed. It wasn't until I had a random visit with a new chiropractor who within ten minutes told me I had a gluten problem. After ten years and thousands of dollars in tests, I was reluctant to believe him. I did the glutenfree diet for 30 days, thats all he asked of me. Why not, couldn't hurt....I am here to say that most of my problems went away especially the migraines and the vertigo. I have my life back thanks to that chiropractor. I followed up with enterolab and results pointed that I have the gene.

I am disgusted with doctors and forever grateful to my chiro.

Good luck with your future health, you are your best advocate.

Thank you for your last sentence. I needed to hear that.

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I am completely self diagnosed, to the annoyance of my (then) primary care doctor. (We've since changed insurance, I had no issues with my previous PMD.) Since many fibromyalgia folks seem to be gluten intolerant, I decided to give it a try. And I felt better. Not a miracle cure, or suddenly turning cartwheels kind of better, just less sick.

It's been two years now, I'm still gluten free, and it's become a way of life. I still have some fibro symptoms, and arthritic and tendinitis type problems, but I am able to work part time and even have some life beyond that. I'll not go back to eating gluten. I've made that clear to my doctors. I'm too scared of the damage it will do, to eat gluten so the doctors can be satisfied with tests. Let them eat the gluten, they can have my share!

Let me also say that I am so very grateful for the support and information and wisdom on this board. Having this resource with all you wonderful people has made this journey easier and even a bit more fun.

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I feel really lucky because both my primary doc and my new GI doc basically diagnosed me just by my experience with symptoms and going gluten-free on my own. I did it backwards and went gluten-free by intuition before getting tested. Blood tests were neg obviously but she and the GI doc both understood that it was because I had gone gluten-free already and both said "yeah, sounds like you have it." GI said he'd like to see me get the gene test just to see what it says but there's not rush and I honestly don't think I'll do that. I feel so much better now, and so many other issues have cleared up that I didn't even realize were related, I know I'll not cheat and feel like I do have the 'blessing' of the two docs, even without the blood test, etc. I feel very lucky in that regard.

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I am new around here. All my tests results were negative, yet I know there is something wrong and I believe it relates to gluten. ( I am in the process of doing stool testing with enterolab).

I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

My drs. basically sent me away saying "you have IBS, go home and take immodium, you don't have celiac". When I asked them if they had any "non celiac gluten intolerant" patients they said, "no". That says a lot. I dont' believe it though.

I've had IBS for probably 20 years. I went to my new dr., since my other one transferred away, and I told her about my symptoms. She immediately said she would run tests for Celiac,etc. The celiac test came back highly positive. I was happy she figured it out! I also had a biopsy to confirm it. This was my first appointment with her, so I was really impressed. I have never actually told a Dr. before about my IBS, I just figured I had a sensitive stomach and needed Immodium all the time! (I am not happy I ignored it for so long). I don't really think Celiac can be missed through the proper blood work. But, if you do think you have a gluten sensitivity, just go on the gluten-free diet! It can't hurt you, and it's actually not that hard. I am sensitive to a lot of foods, but eating gluten-free is not hard. Just follow the diet and see how you feel!

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I too am self diagnosed. My doctor basically laughed at me, did a blood test that came back false positive. Years ago I had allergy test done which showed that I am allergic to wheat. Was told to quit my job at a bakery but no body ever told me to not eat wheat. Have been gluten-free since Jan 10, no more headaches, brain clearer,not so gassy, BM is more regular, etc. Have had many test I feel because doc refuses to think Celiac and is focused on 1 symptom at a time. It is frustrating and tiring trying to get a diagnosis and get healthy.

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I find it so awesome that people have self-diagnosed. I'd never heard of Celiac before my (new at the time) doctor told me about it. I'm quite embarrassed to say that I didn't know what gluten was, either. I was quite blissfully ignorant to have a thick file full of other diagnoses and various pills or treatments for fixing them (actually they're all electronic now so we can't really say "thick file" anymore, can we?).

What's terrific, though, is that I've become great at self-diagnosing other problems since the Celiac diagnosis 3 years ago. I'm so much more aware of things in general - of my own and my family's health.

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I was happy to see this topic!

Because I am completely self-diagnosed... I'm not much of one for going to the doctor. Let's see.. an overview:

2007 general misery in the digestive tract. gave up lactose. improvement.

2008 became vegan. gi tract felt even better.

still feeling that my physical energy wasn't what it should be. inside i felt like a much more intense, vitally alive person. outside, i was a bit of a weenie. frequent headaches, hypoglycemic, very emotional, groggy in the mornings, generally low stamina.

2010

APRIL intense headaches / migraines almost every day. pushed through, working 40 hours, exercising -- nothing else.

JUNE completed my first half-marathon. had a migraine the day before.

AUGUST gave up running altogether. it became too much.

OCTOBER could barely make it through a mellow yoga class. realized how weak i had become.

NOVEMBER researching, found celiac.com, began to suspect a gluten intolerance.

DECEMBER gave up gluten for 1 week. had a piece of toast & slice of pizza. suffered a bad migraine for the next five days. I was convinced. I began to build up my yoga strength, run a few miles per week, and learn to eat around gluten.

JANUARY can drink milk! can eat cheese! my gi tract must be healing!!! too much dairy still causes discomfort, though.

I'm learning slowly, though. I'm only just realizing the connection between gluten and mood. Also, realizing that food "made in a plant that processes wheat" can do me in just like eating a piece of toast. :(

Just like with lactose intolerance, it will probably take me about a year to figure out what my system can tolerate, and how to coexist with my strange intestines.

i'm working up the confidence to tell the world "i'm gluten intolerant!" without a doctor's diagnosis. this forum is helping! :rolleyes:

thank you all for contributing to this HELPFUL resource!!!

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This topic has been really good, it makes me feel less alone and crazy. At first I thought I really needed an official diagnosis of what was making me so sick. Doubled up in pain, struggling to get through work, not able to move from the couch, losing all my strength that I had built up at the gym, extremely tired... I didn't even think that bloating, bad wind and yellow, floating stools were a problem - I'd had that for years so thought it was normal. To me this pain had just come from nowhere, and my doctor ran so many tests and scans and kept telling me there was nothing wrong. With nothing left to do but lie at home taking pain killers that were not even working anymore. I experimented with my diet. I cut out diary, no difference with or without. Gluten was my next idea because I knew that causes problems in some, and I started feeling better. After 2 weeks I had no pain, had my energy and strength starting to come back, no wind, bloating and my poo didn't float anymore. I tried eating gluten again, and the pain came back exactly as before. I cut it out again and it started going away again.

I told my doctor, he said it was Gluten Intolerance not celiac and that it would be ok if I ate gluten every now and then. He got me to eat gluten again for 10 days and got me to have a full celiac test (which was not a full celiac test I found out later) and the gene test. I came back positive for the gene and negative on the other test. Dr gave me a printout on Gluten Intolerance (I don't know if he ever read it himself) which said that non-celiac gluten intolerance is a psychological eating disorder which is related to a person's desire to control food. That made me mad because I didn't want to be like this, I wanted to eat gluten! He told me to stay off gluten and wait a few months to see if my low iron level improve and then I would be able to get a referral to a GI specialist.

I kept off gluten, really enjoyed feeling well, but I wanted a diagnosis. I found another doctor, she said my symptoms and experience with diet could only be celiac and there is no such thing as non-celiac gluten intolerance. She checked my tests from other doctor and told me I had not had the right tests done and got me to have more blood tests and gastroscope even though I had now been gluten free for 4 months. She said that damage and immune response can't heal in 4 months. Again I was completely negative on all tests. She then suggested that I might have psychological IBS that has been brought on by stress! I completely reject that diagnosis.

GI specialist I saw was useless, he dismissed my symptoms and response from diet. He said based on my tests, I am not gluten intolerant or celiac. He also said my symptoms were mostly likely caused by stress and were a conincidence that they go away off gluten and come back on gluten. He said I should try eating small amounts of gluten, but ultimately I am in control of what I eat and if I believe I have a better quality of life off gluten - it's my choice.

You know what, I do have a much better quality of life now. Those doctors have no idea how sick I felt, they didn't have to live it, they don't care. One of my aunties has cut out gluten now too, and another is considering it. They have had over 30years of bad GI symptoms and exhaustion, amongst other symptoms and always been told by Dr's that there is nothing wrong, this is just what their life is like. The auntie off gluten has never felt this good in her life! They are not getting testing because they don't care what Dr's say anymore.

Trust your body.

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Ok...let's get this straight...you cannot diagnose yourself with Celiac Disease....this is a serious disease...you have to be diagnosed with a doctor...having a blood test and an endoscopy. I understand that you feel sick...but diagnosing yourself will not help. Do not claim to be a celiac...

did you actually go to a GI?

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Ok...let's get this straight...if your doctor says that you don't have celiac...then you probably don't have celiac. If you don't have a blood test and an endoscopy..then you don't have celiac. That is the only way that you can tell. You don't take test that you get off

the computer...or you don't take the word of your "friend" or you don't read an article in a magazine saying that you have celiac.... That means that you don't have celiac. This in fact it is a serious disease...and there are sooo many people that are diagnosing their selves...

because it is cool...it is fun to say I have a disease...( and one that is easy to take care of..) . The world has decided to diagnose their selves..and now we are 'all ' celiacs...

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Most of us who diagnose ourselves actually refer to ourselves as being gluten intolerant. The reason we have to resort to self-diagnosis is because there are so many doctors like those in the preceding posts who will not test for celiac, who dismiss symptoms, who diagnose IBS at the drop of the hat, who ply patients with pills for symptoms rather than trying to find a cause for the symptoms. We can diagnose that our body reacts negatively to gluten, it does not take any genius to do that, much less the genius who wears an MD hat and calls himself DOCTOR. Most of them don't even deserve that honorific. That do not even know that their precious tests will be negative if you have not been eating gluten for four months. They think that people with non-celiac gluten intolerance (if they even believe in this diagnosis :P ) can eat 'gluten lite.' They actually think that people are masochistic enough to make up in their head :blink: symptoms of celiac disease so they can put themselves through the torture of learning how not to eat gluten, and then live without it for the rest of their lives. I guess they figure we do it to seek attention. They sure have some weird ideas :rolleyes:

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    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
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