How Many Have Self Diagnosed Celiacs?

[nutralady2001]

I was self-diagnosed for nearly 12 months until I had to have an endoscopy/colonoscopy for other reasons. Here is part of what I wrote elsewhere in the forum

I come from a family riddled with auto-immune disease, although no-one has been diagnosed with Coeliac Disease. Going back 5 generations at least ( don't have any info for further back than that) there has been rheumatoid arthritis, Type 1 diabetes mainly. I have Hashimoto's Disease ( immune system killed of my thyroid gland,) my son number 1 has Type 1 diabetes , daughter has lichen

planus an auto-immune skin disease similar to psoriasis

I went gluten-free about 12 months ago as a trial, after talking to a friend then re-introduced it to see what would happen........headaches,brain fog from hell / debilitating fatigue were my main symptoms so I went gluten free again.

I had to see a gastroenterologist about a month ago as at my last lot of yearly blood tests which I have every year I was badly iron deficient and had to do a bowel screening as a result. The screening showed blood in both upper and lower intestinal tract. The doc then gave me the referral to the gastro

I have had IBS since I was 12. When I told the gastro about the IBS and described the symptoms and told him that my worst year was 1966 when I was so bad I was on medication which was steroids, he said it was consistent with Inflammatory Bowel Disease not IBS.

He scheduled an endoscopy and colonoscopy which I had done and he told me before I left there was no cancer etc and said he would send a letter to my GP. I knew he had taken biopsies as I got an invoice from a pathology lab

I went back to my GP yesterday to see her and check the report he sent. You could have knocked me over with a feather when his letter said that findings of the biopsies were consistent with Coeliac Disease !!!

Since going gluten-free I've had a few slip-ups and to be honest deliberately cheated on a couple of occasions . I have been taking the iron tablets for my iron deficiency and didn't realize that they had gluten in them. I think from my reading that sometimes gluten is doing damage without any physical

symptoms so even after being (almost) totally gluten-free for 12 months there is still damage to the villi

You aren't allowed to join the Coeliac Society here unless you have an official diagnosis and provide your doc and gastro's names with a letter from your doc saying you have Coeliac Disease. Not sure if there's any benefit know they provide lists of restaurants/places where you can buy gluten-free food but my friend and I seem to be doing that quite nicely with the help of Mr Google

All I can say is trust your gut instinct and ignore anyone who tries to put you down for being gluten-free or say things like "Well it won't kill you"..................yes that was said to me when I said I was gluten-free for dietary requirements for a conference I was attending. I'll be going to the same conference (it's annual) in a few months time so let's see what they say when I actually say Coeliac Disease this time and not gluten intolerant.

[donna mae]

Well like many of you, I have a story as well and venting to do.....

What a Journey;

I had never heard of Celiac Disease before, until my Uncle was diagnosed this passed summer.

He called me to say that it runs in the family....so we should all get tested..!!!!

I have two children my daughter 20 and my son 22.

My daughter had been suffering for this entire year while away at university, my son for years (who also has dermatistis herpetiformis) undiagnosised for years.

Not to mention all the symptoms that I too have had.

I went to the doctor to let him know that my daughter had just been tested by her doctor with the blood test and the biopsy and they both came back positive...and wanted him to test my son and I.

His reply was "it's all in your head" you don't have this. I was so angry....and still upset...

My son wanted to leave his office, and I made him wait with me till the doctor came back into the room. He said it was an expensive test, and why would I want to pay for it, because he knew we didn't have Celiac........

Well a long story short...we both had the blood test - positive

we both had 9 biopsy and tested - positive

The month before I was diagnosed with Spondylolysis, with multiple fractures in my spine.

Is this not red flags waving in his face, clearly I have calcium deficiency, not to mention, I also have Osteoporosis, acid reflux, migraine headaches, lost 47 lbs in 2 1/2 months, to list a few.

I feel like a poster child for Celiac......

But no, it's all in my head.

Ok.... that's me finally finding a place to rant....

I'm so sad that the medical profession does not have a clue.....(at least the ones I've come across)

So yes, in one way I guess we too had to self diagnose, and wait for help.

I think it is so important for us to listen to our bodies, and follow our heart and don't give up, there is someone that will listed to us. (even if you have to sit in a doctor's office and wait till he gives in)

My son can't believe he is the same person, feeling so much better, he's finally on his way.

Sadly, my daughter has no support at school, and is still suffering....praying for her...

Thank you to all who allow me to rant....

I wish you all the best of health.

Donna Mae - gluten free since September 6th, 2007, and feeling much better....

[Matilda]

...

[nutralady2001]

Good grief. How ridiculous. Sometimes I think, medical incompetence aside, we're our own worst enemies.

Yep here it is in black and white I think the bottom line is they don't want to be sued!

Open Original Shared Link

We are writing to advise the rationale for the decision of the coeliac societies in Australia to require a referral letter from a registered medical practitioner for membership.

The state societies are self help charitable organisations which give information and support to people with coeliac disease, dermatitis herpetiformis and those medically diagnosed as requiring a gluten free diet. The information and support given is for the gluten free diet which is the only treatment for these conditions.

This decision was made in consultation with our consultant doctors and solicitor after receiving many applications for membership from those putting themselves on gluten free diets and those being put on gluten free diets by alternative practitioners without any medical testing. Many of these people were coming to us later saying that they wished we had told them to seek a proper diagnosis as they now do not know if they have these conditions of not.

Our consultant specialists advise that a gluten free diet should never be trialed as this does not provide a diagnosis of coeliac disease and subsequent investigations whilst on a gluten free diet will render a false negative. The trialing of a gluten free diet may also delay the diagnosis of a more serious condition.

From a legal point of view, we are told that as we are giving information on the treatment for these medical conditions then a member should have a referral from a medical practitioner.

The referral required must state that the person has either coeliac disease, dermatitis herpetiformis or diagnosed as requiring a gluten free diet.

Should you require any further information, please do not hesitate to call the undersigned.

Yours sincerely,

THE COELIAC SOCIETY OF AUSTRALIA INC

[Joss]

Given that we have to have an official DX I visited my doctor and told him my blood test came back positive several years earlier and that I had chronically low iron as tested by them, osteoporosis, thyroid disease, migraines, asthma and all I needed was for him to sign my membership form. Guess what? He refused and wanted to test me again. I told him as I was gluten free that would not work and because I am a severe asthmatic I am not having a GA for the endoscope either. He told me that even if I am gluten free, I can still test positive in a blood test. Where do they learn this crap?

Joss

[mrsry]

I guess I'd have to say I'm self-diagnosed; after having a lot of improvement when I ate gluten-free I went to my gastroenterologist. He was very skeptical and said I wasn't "classic for Celiac". All I could think was, "huh?" I had GI symptoms as well as headaches and a rash that doctors said wasn't eczema or dermatits. My only guess is that he said that because I'm Asian. So I did the blood test but he wanted me to do a host of other tests as well. The lab screwed up the bloodwork and canceled the test, so after he told me to go back I said no way. Eating gluten again was making me so sick! It took 3 weeks after I stopped eating gluten again to feel alright.

If I ever really need to have proof, I guess I'll go with Enterolab.

[rsm]

Self diagnosed here as well, gluten free for 8 months and feeling much better. My doctor said he was impressed that I had come to the celiac decision and said stay with the diet. He told me he has had so many false negatives that the diet is the real test. My youngest daughter just had a blood panel run, her antibodies were between 3 and 4, not celiac. She's going gluten free anyway. We have a family history of bowel and stomach issues, anemia, pernicious anemia, alopecia, lactose intolerance and thyroid issues that go back for generations. We don't need to eat gluten! I don't eat dairy either and I much prefer it that way. Celiacs or just intolerant to gluten, either way I am gluten free from on.

Don't wish to be mean but I am unimpressed with the medical community on this issue. My kids and I know more about this disease than any doctor any of us has seen. That's frustrating, I was told for 25 years to keep eating more fiber, wheat fiber of course, no wonder I never felt better.

[taweavmo3]

Self diagnosed here too......my daughter was diagnosed first, and her doctor told me no one else in the family needed to be tested unless they had symptoms (that was before I learned so much from this board!).

So I never was tested, I just ended up going gluten free with my daughter, not really intentionally, it just happened that way since we never went out, and I just ate what she ate. I realized I felt much better, my crazy hormones balanced out (and I became preggo with baby #4, lol) and for the first time since my childhood, I was NOT anemic anymore!

I never had bad intestinal issues, just severe anemia since I was very young. I would take a ton of iron supplements, and would still be anemic. I'm also very short (4'11") and have had migraines since I was 5 years old. I still get headaches, but nothing at all like I used to have.

Now my whole family is gluten free, but only one child has a positive diagnosis. I feel it's a healthier lifestyle, and I personally don't feel the need to see proof on paper what my body has already told me to be true. My kids may totally go off the diet when they are older, and that's fine, but at least I know I'll have given them a really healthy start in life. It is a really personal decision though, and I know it's not the right thing for everyone.

[DonnaD777-777]

I was self-diagnosed because i went to doctors all my life and not one could tell me why i had a rash on my arm and why i was so deficient in so many vitiamins and minerals. Finally, i got sick of my bledding sore on my hip bone, an itchy rash all over my stomach (how could i date? i couldn't), diarria waking me up at 6 in the morning until 2 pm, fatigue always, wondering if i was going to go into acomma when i fell asleep and never wake up, feeling good when i didn't eat, and so on. I could give a damn if a doctor diagnose me or not, the fact is, i am well, i don't wake up with diaria (unless accident cc), my skin is clear, i don't feel tired, i am well. And yes, when i get cross contamination, i do get very ill. I do not need approval from a doctor to let me know that gluten makes me sick or effects my nervous system (hands and feet go very numb after cc), and that i pass out the next day after having cc. I am still going to talk on this forum because it is nice to have a network where people are effected the same way after eating gluten. There are great ideas on recipes and good topics on what foods might have gluten in them. Oh, I told my sister for years that i have celiac's and she just didn't believe me....about 8 months ago, she called me and said, you totally have celiac's, she just took a course on celiac's at the medical school she is going to, to become a doctor.

[codetalker]

....she just took a course on celiac's at the medical school she is going to, to become a doctor.

It's encouraging to think that future doctors are being taught something about celiac disease.

[melrobsings]

Self as well.

[oyea]

I too am self-diagnosed. My Mom stopped eating gluten about 4 years ago because she was feeling sick to her stomach all the time (she never tested positive) and being gluten-free alleviated this. My problems started about 4 years ago when I was under extreme stress from a job loss and then taking a job working about 12 hours a day. This stressful time seem to begin my auto-immune issues beginning with Hashimoto's disease. After getting less stressful job, I started noticing VERY LOUD noises coming from my stomach. It didn't hurt, but was very embarrassing because I am in sales, and it would of course start right when I walked in somebody's office!! It sounded like very noisy digestion. I had no idea what could cause such noises, but I didn't think it could be gluten because my Mom and I had totally different symptoms.

In March of this year I started getting really depressed and would cry at the drop of a hat. My Dr did some blood work, and found that I had extremely low iron. I told her about my stomach noises, and about my Mom, and she said I might try a gluten-free diet (but I tested negative for celiac). Well, needless to say, I've been gluten-free since March, and my stomach doesn't make noises anymore (and that embarrassment alone is worth not eating cake, bread etc.). I am also not anemic anymore. I always just tell people I have celiac, because whether I have it or not my body does not like gluten (and I can spare them from hearing my stomach digest my lunch)

[Cynbd]

I am self-diagnosed -- I had a positive blood test and negative biopsy. It took me 6 months to get my biopsy and I was gluten free during that whole time. I felt better immediately after eliminating gluten from my diet.

My GI told me that I could be gluten free and that wouldn't affect the endoscopy By the time I figured out he didn't know what he was talking about there was no way I was going back on gluten.

When I went for my endo he asked me what I thought he would find. I told him "probably nothing, because I have been gluten-free for 6 months" He rolled his eyes and asked me where I heard that -- I told him I researched, and he rolled his eyes again and said something like "Oh.. the internet" surely saying "it figures" silently to himself. He tried to convince me that it was probably just lactose intolerance. Which I had been living with for 20 years, I certainly "knew my lactose"

My family has been very supportive because they have seen a huge difference in how much better I feel. I used to spend half my day and night in the bathroom.... or running to the bathroom.... or mapping out the bathroom stops when I had to go out... they were always waiting for me.

They have never questioned the results -- they trust what they have seen with their eyes. Heck, who would want to give up Birthday cake, Pizza, and beer for the rest of their lives if there wasn't a problem?

[TestyTommy]

I'm in the self-diagnosed category.

I'd been sick for 8+ years. I'd seen dozens of doctors who shrugged their shoulders and told me it was all in my head. And tried to stuff me full of anti-depressants.

I finally found a good doctor who wouldn't give up til he diagnosed me. My blood test for celiac was negative, but he said that the blood test often shows false negatives and suggested that I try a gluten-free diet anyways. I went gluten-free for 6 weeks, then gave myself a gluten challenge, and I got really sick. I've been gluten-free ever since.

About 6 months ago, my sister came to visit me. She had a horrible rash on her arms and legs. She said she'd seen several dermatologists, but they couldn't figure out what was causing the rash. I told her about DH and told her to get tested for celiac. You probably guessed the end of this story: her blood test was positive.

Last time I saw my doctor, he thanked me! He said he'd never diagnosed anyone with celiac disease in 25 years. But after seeing how much I improved after going gluten-free, he started reading all the new research on celiac. Now that he knows what to look for, he'd diagnosed 3 other celiacs in the past year.

Answering this question depends on what you mean by 'diagnosed'. A lot of doctors say you don't have celiac unless you have a positive biopsy. Others say you have to have a positive blood test. (But you have to be eating about 10 servings of wheat per day for the blood test to be reliable.) Others say a positive dietary response is the best way to diagnose celiac.

[Sugar]

I've read up on it, and it seems to me that the only way ever to know for sure whether or not you're intolerant to gluten is to test it by your diet. It seems a person can test negative in his blood, stool, or intestines, but feels much better when he goes gluten-free. I think a lot of times it's because not enough measurable damage has been done yet, so tests come back negative. Or sometimes the negatives are false. But I don't know. That's how it seems to me from all my reading. And I think, nobody knows how you feel better than yourself, and if you're willing to do enough research and try hard, why shouldn't you be able to diagnose yourself? I think trial and error with diet is the best way, because when it comes down to it, regardless of tests or whatever else, your body doesn't lie. If you feel good without gluten and bad with it, I think it's most likely that you shouldn't eat it. You just have to be diligent in your research and open-minded, and not jump to conclusions. Plus, if you can see doctors that's all the better. But trust yourself, I say. You're the one who's got to live in your body. It's your responsibility.

[silk]

I too am self-diagnosed and just in the past 2 weeks. Suffered through almost all of the symptoms I have seen here and had just started testing with ultrasound, and CAT, which both came back showing nothing and the Dr. mentioned a possibility of Sprue which sent me searching and I found this great place here and in turn, I think, the answer to my problems. So I declined his request for additional testing since none of what he was recommending had anything to do with Celiacs and I personally hate playing guessing games with Dr.s. Have been gluten free 2 weeks tomorrow and feeling so much better. Haven't even been tempted to cheat once because I suffered for....well...I'm guessing most of my life and I'm 48 years old and honestly, there isn't anything on this earth right now that sounds good enough to make me hurt that much. I did eat some yogurt with my rice this morning and I don't think it's suppose to have gluten in it but today I am having some stomach pain so I am wondering if I also have a problem with lactose? Haven't really avoided it these past two weeks..ate cream cheese...and it didn't bother..so I'm wondering if there was a gluten gremlin in the yogurt....May have to contact Dannon.

Also, I talked with my Dad who has always had similar digestive problems and he told me that HIS father would never eat white bread because it really made him feel bad so I'm guessing they have it too. Also, I have a 22 year old daughter who is 5'9" and doesn't even way a hundred pounds. Always eats like a horse and cannot gain weight and was alway listed as 'failure to thrive' on her childhood wellness checkups. And yes...she has some of the stomach problems too...

Since there is no guarantee with the tests (I have seen false negatives discussed here) I guess what I am saying is...you can either pay the big bucks and get the official diagnosis or save your money and continue to feel better being gluten free and not pay someone else to tell you what you already know. Unless there is someone who actually needs to have a written order from a Dr., who is actually going to challenge the DX? I am diabetic and a member of MedicAlert and I plan toCeliacs on my profile, Dr.'s DX or not. I'm not guessing a medic or hospital would ever challenge the diagnosis and take the chance of being sued for giving me something that makes me sick.

Just answered my own question about the Dannon yogurt...went to the website, and while their plain and fat free yogurts are gluten free...the flavored is not. So why don't they say that on the packaging? Now I know why I have a gut ache again! Yeesh. Good news is...that pretty much confirms what I have thought these past two weeks. I can't eat gluten. What a merry bunch we are. Can someone pass the celery please....

[loco-ladi]

Heres another self diag'ed!!

I had been going to my GP for over a year with intestinal issues, his response...... here try this pretty colored pill........ fwe weeks later, that one isn't working try this color.......and the next and the next....... when he ran out of colored pills he said try the purple one AND the blue one...... I said...... um I dont think so!

I went "home" for a week or so and my grammie invited me to lunch...... as I had many things to do that afternoon I said "no thanks I cant eat just yet I have to much to do" my cousin who lives with her said........ trust me eat lunch you wont get sick........ needless to say I was shocked but said WTF and dug in........ went and finished out my day and thought about it later that night......... HOW did she know I wasn't going to get sick!

Next day first stop is grammies where my cousin gives me "her list" she had spent the last 40 years making...... followed her list and didnt get sick........ hmmmmmmmm photocopied the list!

Get back home and give the list to the dr......... he says its drap nothing in common makes no sence he STILL insists I have acid reflux

Took the list to a dietician.... she isn't sure but most of the items had "wheat" in common, some she didnt think did but "most" did

I start searching online and come up with celiac......... found this forum even........ made my account and read a bit...... went gluten-free but made LOTS of errors as I didnt read enough either online or in this forum

Fast forward 2 years I am almost ready to say dr was right as my symptoms while decreased had not gone away, so last ditch effort I do more research....... again find this forum....... start reading......

OMG I wansn't close at all for going gluten-free did not even know gluten could be hidden under other names, ok so....attempt #2 starts with a vengence!

almost 1 year being TOTALLY gluten-free now with my self diag and I am feeling AWESOME!

Went into dr for some bloodwork and told her (new dr) I was gluten-free and figure I have celiac she said "ya got what?" I have made it my purpose in life to educate her about this if its the last thing I do...... so far we have gotten past the bloodtest and biopsy issues after I explained since I have been gluten-free for so long they would be worthless basically and I WAS NOT going back to gluten just to be tested for something I KNOW I HAVE!

[dh204]

I myself am also self-diagnosed - I had noticed for awhile that I was constantly gassy and bloated and my stomach would always make really loud noises. I also had a major case of acne, weird eczema on my arms and legs, and I was CONSTANTLY tired. I was originally diagnosed with Chronic Fatigue Symptom, and would get blood tests done every so often - and one day the doctor said I had a "wheat sensitivity" and suggested I try to avoid eating wheat products.

Well, I did do that - cut out ALL wheat (it was SO hard at first) and then I noticed that my skin cleared up majorly, not to mention that the digestion problems calmed down and the diarrhea was less severe. I went back on wheat again after about 6 months or so, and all the horrible symptoms came back again.

I've been gluten free for awhile now, but I've also been living in France for the past 3 years and it is really, really hard. I am constantly getting glutened even though I try really hard to be careful. Plus my husband and his family (they are French) just don't get it at all - they think I am over-exaggerating and being way too dramatic. They are now saying that they won't believe me at all unless I get a positive diagnosis and are putting massive amounts of pressure on me to get "officially tested". I don't want to go back to eating wheat/gluten again, but the husband and his family are saying that it's better that I suffer for awhile in order to have a "diagnosis from a real professional, because self-diagnosing is extremely dangerous" and "anyway, we don't believe you at all, you are being overly dramatic" and "EVERYONE knows that a crumb can't POSSIBLY hurt anyone, since it's so MINISCULE". It's been driving me crazy because no one in my apartment (my husband's teenage sister lives with us) makes the slightest effort (there are crumbs EVERYWHERE) and they don't bother to clean up, plus they leave all their boxes of crackers/bags of bread all over the place, or on top my gluten-free food, and then accuse me of being "crazy" because I don't have an official diagnosis.

Even worse is that my mother-in-law comes over from time to time with food for the husband and his sister and she brings things like boxes of wheat, cookies, bread, wheat cereal, etc and then puts them in the same area as my gluten free food! She won't change her mind at all unless, you guessed it, I have a "diagnosis from a certified professional".

[zansu]

I had been going to several different gastroenterologists for 6+ years with no help. My brand new GP said "sounds like celiac, but the tests are expensive and not always accurate. Give the diet a try and see if that helps" I did and it did, within weeks I was 200% better. When I inadvertently did a gluten challenge (WHo knew spelt was wheat? ) I had my confirmation. That was enough for her and for me. FOund out later the Gastro had done a biopsy when he did my GERD EEG, but he only biopsied 1 place and said negative. I said "bye". So, I don't have the "offical" tests, but my GP was the impetus behind a diet-response diagnosis.

[aphexphonics]

I am a self diagnosed celiac. After being perscribed Adderall XR for my "ADD" and thus having it ruin my life due to it masking my real health problems, i began to seek alternative ways of treating my "disorder". After about a year of research,experimenting on my self,reading, ect i finally stumbled on a website that explained celiac disease and it made perfect sense. I had chronic ear infections as a child. Random nosebleeds. Supper skinny even though i ate a TON. When i was twelve i went to the dentist who was concerned that i was bulimic because i had no enamel on my teeth. I've had a rash on the back of my arms since as long as i can remember.Memories flooded back to me that all tied in together and thus i decided to go gluten as well as casein free.

Immediately my symptoms of ADD and depression as well as anxiety went away and i dropped the Adderall.I still can't believe it. I havent felt this normal ever in my life. My family and friends think i'm crazy but i really don't care as long as i'm on a diet that keeps me perscription med free. I would go get diagnosed and tell my doc, but i always felt like more of a customer to him than a patient considering that when my health problems continually got worse he would just up my dose.

Oh well,i'm healthy at least. Yay!

[sneezydiva]

I'm pretty much self-diagnosed with gluten sensitivity. My celiac blood panel was negative. I did a lot of reading here and also read a few books. However, even after I decided all this, I pushed for food allergy testing. I wanted to check for other food allergy/intolerances, and though I know allergy and celaic are different things, I was hoping wheat to be positive so I would have something on paper. It turned out the wheat was the only positive result. Though it technically doesn't change anything, at the same time it changes everything. Despite all my suspicions, seeing that welt the wheat formed on my skin made it more real for me, and how important it is I don't cheat on the gluten free diet. Since any ill effect is very delayed for me, this is a good thing for me. It has also changed my family's opinions and reactions to me overnight. My mom and DH were already coming around because they could already see how much better I felt gluten free, but with an official diagnosis, all the skepticism from family is gone.

[rinne]

I am self-diagnosed but with a sister and brother who have positive Celiac tests, a lifetime of problems with wheat and then a sudden and dramatic weight loss and illness.