As much as I (we) hate having celiac disease, I’m happy to at least have some diagnosis that explains my issues.
Well…most of my issues anyway 🙂
But there are tons of people out there who do not have the benefit of a celiac diagnosis.
Perhaps they went gluten-free before getting a diagnosis, feel great and refuse to go back on gluten to get an official diagnosis.
Or they don’t have the money to get the blood test and biopsy.
Or their blood test came back negative but they just “know” that gluten is wrecking havoc with their body.
If you can relate, then the following “Dear Gluten Dude” is for you.
What do you call yourselves? What do you tell your doctors? Does it affect your health insurance?
And if you say you’re gluten intolerant, do you get taken less seriously?
Please offer up your sound advice.
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Dear Gluten Dude,
First off, I just want to say how much I love reading your blog.
I’ve been struggling with this issue for a while now and don’t quite know who to contact, so I’m hoping you can offer me some advice.
I am a college student and was “diagnosed” (I use that term loosely) with some sort of gluten intolerance about a year and a half ago. The problem is, I’m not exactly sure what it is that I’m dealing with. My doctor initially dismissed my symptoms after doing maybe two blood tests (apparently the test for Celiac Disease came back negative) and after putting me through therapy for half a year (because I was clearly making everything up) with no real results it was decided that I should have a colonoscopy and an endoscopy.
(Side note – this is a really fun way to spend spring break during your senior year of high school!)
Anyway, my results from the biopsy apparently indicated signs of celiac disease but it was not 100% certain. I was told to try going gluten free and if I felt better, that was that.
I did this and after some time I felt a lot better. I told my doctor and they said that was good and then I never heard from them again.
(Another side note – this was at one of the top pediatric gastroenterology clinics in the nation.)
Here is my dilemma. I was never formally diagnosed with anything. I don’t know the results of my blood tests or biopsies because the hospital is charging something like $120 to view my medical records and that’s not really something I can manage right now.
I know I can’t eat anything with gluten and if I do, I feel absolutely awful and it takes a good while for things to get back to “normal.”
Now…I know the point is that I have an answer as to why I have been sick all these years, but it is still bothering me that I don’t exactly know what I have. I don’t know what to put on forms when I go to the doctor and I feel like if I just put “gluten intolerance,” I won’t really be taken seriously
I know it’s not worth it to go through all the tests again, but it’s just bugging me that I don’t have a definite answer.
I was just wondering if you could offer me some advice about this issue. I know to avoid gluten, but that’s about it. If I say I have a gluten intolerance, I’m not sure if that is accurate but if I say I have Celiac Disease, I’m not sure if that is true either.
Thanks in advance!
I feel for you as I am in the same boat. In my situation , I have to pay everything out of pocket because I don’t have insurance. I’ve seen two different doctors and both said that I need to get tested and to eat gluten free. So I did and I feel better than I’ve ever felt. Like you if I ingest gluten I feel horrible.
So what do I “label myself”?—gluten intolerant. My body cannot tolerate gluten so therefore I am gluten intolerant.
Sometimes I say I have undiagnosed Celiac Disease with a smile. I say that as a joke but in reality it’s probably true. This is something I also battle with not knowing but I’m not sure if I want to go through all the tests and possibly eating gluten again just for some tests. I’m happy the way my life is right now.
I’d say stick to gluten intolerant or maybe gluten sensitive because you know for a fact you have that.
Hope this helps.
I am in the same boat as you, and this is the route I usually take, as well. My blood test for Celiac came back negative even though I have all the symptoms, so my doctor at the time dismissed me. I went gluten free anyway and all of my symptoms went away or became exponentially better. When I finally found a new doctor who actually listened to me, I explained the situation and told her I was gluten intolerant – and that’s what’s in my medical records. (And we both agreed that after 2 1/2 years of being gluten free, it would be a literal pain to go back on gluten just to get retested.)
I mostly use the term “gluten intolerant” when conversing with others, especially if I can explain it to them a little more. My husband often tells people that I have Celiac because it’s easier for him to explain it that way. I may have to start using your “undiagnosed Celiac” term because that’s almost certainly what I am!
When dealing with wait staff at restaurants, I tell them I am allergic to wheat/gluten as they understand the implications of that much better than they do an “intolerance.”
Why don’t you tell the wait staff that you are a coeliac (whether you are or not is immaterial)? They are not asking for a certificate from the doctor to serve you.
Most restaurants understand coeliac disease well.
I have a celiac diagnosis and it is a relief to know what has been wrecking your system for so long. So, I can understand your frustration and worry.
I recommend that you request only part of your medical records – ask for the results of your Celiac panel, transglutaminase IgA and/or IgG test, colonoscopy, and endoscopy. These are generally one page (two at the max) documents. Asking for just these things will be less expensive as they usually charge by the page. The results are generally easy to read and should give you a better understanding of what this doctor is or is not telling you. This should give you some piece of mind that you do or do not have celiac. If not, and you feel that you must know (like me) then the next step is probably getting a second opinion and if you do that you will have the reports to share with him or her. it sounds like you need a new GI doctor anyway. One that will help you with any celiac crises or additional symptoms that you may suffer going forward.
Good luck to you. Be well.
Good idea. You may also try getting your endoscopy and bloodwork lab results directly from the lab(s). I might be cheaper.
I have put gluten intolerance on medical history recently. It is all I have, but I told my allergist recently I do think I am “a probable celiac”.
I do not like not having an accurate diagnosis, but I am one who is completely unwilling to Ever go back to eating it again. I would be doing significant damage to my already damaged “on the inside” self.
I suffered for months with no help from my doctors and I do believe all my tiredness and other minor symptoms I dealt with most of my life are from gluten. I just took them as normal…I knew no different.
My ob/gyn and my gastro have said I am probably “just gluten intolerant”. How can they say that? I’m not going to list my symptoms here and my other auto immune issues, but to me I am “classic all the way”.
I did have the blood work done – after I had been almost gluten free for a few months. I say almost as I was having hidden sources here and there. I had just cut out bread, pasta, and cereal as I knew it was bothering my stomach. I knew nothing about celiac disease and neither did the doctors I was seeing.
I have had an endoscopy/colonoscopy done, but this was after 8 months of real gluten free. I had it to rule out other issues and I was still having symptoms though 90% better than what I had been the year before.
If you had signs on your endoscopy and you know you feel better ~ to me that is proof enough to say you have Celiac Disease.
But I totallly understand since your doctor was iffy on it you still feel iffy. I have come to have a very bad taste in my mouth when it comes to doctors now. They don’t know as much as we do. We are dealing with it. We are living with it. We have been raised to trust everything a doctor says…and that is sad.
I feel like I have to prove myself to many: family, friends, doctors, and even to some in the celiac community. But it is what it is. I know and I have my immediate family to back me 100%.
I do want to tell people I have celiac disease. I too want to know.
But the fact is I won’t ever have it written on a medical piece of paper.
I have told my family I have to have their backing 100%. They have to know if I ever end up in the hospital they are going to have to fight for my food. This is my major worry.
Know you are not alone. We need to keep spreading awareness together: Celiac on Paper or Not.
I completely sympathise with you on this, even though our medical systems are completely different this is almost exactly what happened to me in the UK.
I had positive bloods
I good chunk of the typical symptoms
and a semi-positive endoscope (because eating the required amount of gluten required made me far too ill).
One specialist put me on a gluten free diet, the hospital changed my specialist who then claimed I put myself on a gluten free diet … erm, no!
Even the tiniest amount of gluten from any grain makes me noticeably ill so therefore, for the time being, I have stopped fighting for an official diagnosis until I’ve been travelling.
I just wanted to show you there’s not only you that has been treated this way and you can overcome it … maybe you should just hang in there and avoid gluten until you can pay for the tests again.
I was never formally diagnosed. I’ve now been gluten-free for over 3 years. But my dad was formally diagnosed with celiac disease, and my sister, brother, and finally, my mom, all have issues with gluten and have removed it from their diets, never receiving formal diagnosis either. About 10 years ago, I had the blood test, but it came back negative. That actually put me off track, thinking it wasn’t gluten that was causing my issues. But I got worse, and was so fatigued, had so many digestive issues, and recurrent illnesses, that I finally decided I would try the diet to see if I felt better. I did, so I never went back. By then it was too late for an endoscopy, but I’m not about to go back on the diet to get a firm diagnosis. I know gluten (and for me, dairy) is the enemy, and I’ve finally reached a point where I have gained great health and wellness. I don’t call myself anything in particular. I tell people I cannot tolerate any gluten or dairy – even slight amounts – but at restaurants, I do say I have celiac disease or an allergy. I know that’s incorrect, to some degree, but it seems as though it’s taken more seriously. Ultimately though, I’ve gotten past the frustration of not having a diagnosis. I know gluten is the problem. I avoid it. (My other family members that have not received formal diagnosis say they have celiac disease, for what it’s worth)
Some additional information about the medical records…my doctor is at a major teaching hospital in Philadelphia. Whenever I have tests, I get an email from the hospital saying that my results are in and I can view them online. It doesn’t cost anything to view. They also provide a reference for what is a “normal” range for each test. My doctor adds her comments to this. In this day of everything being digitized, there should be no problem for you to access the records electronically.
BTW, I, too, was never diagnosed. My former doctor (actually I hope she is a former-doctor..) kept telling me not to go off gluten, just eat more fiber. When I went off gluten after recommendation by a nurse friend, the idiot doctor (six months later) did a celiac blood test.
I wouldn’t eat gluten to get the test; therefore, no diagnosis. I say I am gluten intolerant.
Gluten intolerant or Celiac. I know what’s wrong with me and no I don’t have a blood test. I was “diagnosed” with an ulcer at 12 years old. It made sense back then. My stomach hurt all the time and my mom beat the crap out of me so I had stress.
Fast forward 20 some years and going through a divorce, ended up in the ER because the pain was so bad. Go see the doc months later because the daily prilosec was not helping and working with constant diarrhea was becoming very difficult. The doc did lots of basic stuff including a stool test for the ulcer which it turned out I didn’t have.
So after trying lots of drugs and doing basic tests to rule things out. She had a epiphany and told me to try going gluten free for one week and see how it goes.
Well, it was an amazing change and the longer I went, the more things changed. Less headaches, restless leg all but disappeared. My food no longer shot right through me.
I asked my doc if I need a blood test and she said no. “We know what is wrong and we know what happens when you eat gluten (the macaroni & cheese incident) so until the test becomes necessary, I don’t think we need to do it.”
So like you, I have no official diagnosis. I say gluten intolerant mostly because people don’t know what Celiac is. I don’t care if people want to take me less seriously because as soon as they say something stupid about my disease, they will quickly learn to take me seriously. 🙂
I had the same doc I think ! The one who tells you : “no need to be tested, eat GF products, that’s all!”. That’s all? Really? What a shitty advice, thanks a lot, here’s my money.
In fact it is pretty stupid. We know gluten makes us sick, ok, but people need to be diagnosed BEFORE the GF diet. Why is it so important? For our health first of all, to be able to get a medical follow up (intestines but not only, cancers, thyroid, diabete, etc), to be able to go to hospital and to avoid to ingest some poison there, to make sure that our body is really healing and to know if the diet is enough if we have celiac, to be less treated like hypocondriacs, etc. A test is NOTHING and they didn’t even want to give us that after years of pain. Personnally, I am pretty angry against those kind of doctors who are unconscious to let us by our own without even CHECKING, as if we didn’t worth it. They believed us, nice, but they did bad actually.
Moreover, IF we do have celiac members of our family may too. That’s what’s happening to me. My brother has lots of vitamins and nutrients defiencies, but it is still ok for the practionners even if he’s below the ranges. “Eat more that food, that food, that and that”. He already does but they do not trust him. He has a low creatinine in blood which indicates malnutrition, but no GI symptoms and no weight loss (I did myself have anemia and low creatinine which indicates malnutrition, but I was GAINING weight! Go figure! And I’m the only one having GI pains and transit troubles). For now, he has only insomnias, fatigue, and brain fog. When he complained he was told all was in his head and he just needs vitamins supplements. My mother thought he needed a psychiatric help and medecine. I was in the same boat so I had to fight for years to HIDE my symptoms. So my brother does currently. I had more joints and muscles pain and more GI symptoms which was a help to understand what I was suffering from since I am a child. For instance I’ve always have a HUGE belly and constipation, he doesn’t at all. But still, bloodtests say he is in malnutrition.
IF I had been tested, maybe now my brother would not have to wait to die a little more years after years, wait to have more symptoms and body damage to be listened and, maybe, tested. I do not want him to go though that but now I can’t do ANYTHING else than watching. He will not go gluten free on his own because he’s convinced it is a fad diet. So wait and let his body and mind die little by little until it becames extreme, if it does.
On the other hand, it would’ve also be helpful for my parents and others in my family with unexplained and untreatable anemia, and for my children (if I have children in some years!).
Dear practionner, who didn’t think a simple test would help… It would’ve help more than you thought.
Personnally, I am NOT satisfied with those medical practices. I find that actually irrespectful to not even care about checking if we carry the disease. It was JUST a bloodtest and MAYBE a biopsy. For years of pains and suffering, we don’t need and ask much. They didn’t even give us that. Personnally I feel angry because I find that this is totally unfair to benefit from our lack of information. If I knew, I would’ve insist a thousand times to a thousand doctors. But I didn’t knew. And I was sick, so I was weak and unable to fight – I had no strenght, even in my muscles – and I wanted to feel better more than anything. Now, I am very angry.
Moreover, a GF diet is much more harder to follow, when gluten really makes you react, than what they think. Gluten isnt only pastas and bread (LOL). I am all but thankful. What those kind of practionners do ISN’T HELP. What appears like some kind of comprehension for the practionner – personnally I dont care if the practionner “understands” and is “human”, I prefer my health and my family’s – is in fact a total mistake and pretty irrespectful.
We dont need them to know if gluten makes us sick – we dont need them to try to eat GF, everyone can try alone – we need them to be sure than we dont have an autoimmune disease, or 2 or 3 by the way, and to take care of us if we do!!!!!!!!!!! With those kind of “nice” doctors we’ll never know for celiac. It is NOT a good thing, it is a shame.
I started eating gluten-free 18+ years ago… long before it became popular to eat gluten-free and before the new testing became available. I am self-diagnosed through trial and error. I have all the symptoms of Celiac. I call myself Celiac. In my opinion, its up to a doctor to prove otherwise. They won’t because it would be irresponsible for a doctor to require me to eat gluten and put me in danger. They were SO helpful all those years of stomach issues (sarcasm intended), and if any of them questions it now, they can kiss my behind.
About a year and a half ago I gave up gluten and a lot of my issues improved or went away. I did that without talking to my doctor about it first because I didn’t know you had to have gluten in your system to get tested for celiac.
I have been having acid reflux and stomach problems for nearly a year and finally got in to see a specialist. Specialist asked me to eat gluten for at least a month and then go and get tested. Still have another few weeks to go before I can get the blood work done. Just trying to figure out how I am going to pay for it ($$) – I live in Ontario and it isn’t covered by the province’s health care system.
I just tell people I can’t eat anything with gluten in it and leave it at that.
Why are you paying for the blood test in Ontario? If it is ordered by a specialist it is covered, but not those tests you get done in Rexall, the blood test at a proper lab. Unless this has changed in the past couple of years…….. just curious.
the blood test for celiac’s isn’t covered by OHIP (Ontario’s health care) as far as everyone I know who has gotten it can tell me.
Whether OHIP pays depends on where you have the test done. From my experience, if you go to a lab in a hospital, you don’t pay. If you go to a private lab (like Gamma-Dynacare) you pay, even if you have a doctor’s referral. If you have any health insurance through your employer they may for it as a diagnostic test. So try find a hospital lab.
Sorry, to clarify my own comment. The blood test isn’t covered by OHIP at all. I actually have no idea who pays when its done in a hospital lab, I just know I never had to pay when I had it done there.
Well I’m under the impression that I will be paying for it. Which is just great for my finances.
Hi College Student!
Your experience with the medical profession is not unusual, do not think you are ever alone in that one. Happens in a similar way to most of us. You are lucky that you found out what is wrong at this young an age.
How to deal with “naming” it, well your Doctor’s disinterest is not uncommon. This is something that only diet will help, there is no pill for it so a lot of medical professionals are just not too interested sad to say. There is no “cure” it is lifelong. This explains the reaction you got, top clinic or not.
What the odds say that you have is something called “microscopic colitis” which in some circles is believed to be a precursor to full blown celiac disease, in others a separate condition. If that name helps, use it.
Doctor shop until you find one that takes you seriously. Easy this is not. Then spend the $$ to get your test results released to the doctor.
What to say on doctors screening forms -gluten intolerance, explain your journey verbally to the doctor. Stick to the facts about being tested, and what you know of the results. Sticking to the facts, without conjecture, is best and will not give you any future problems with health insurance.
What to tell your friends/ servers in restaurants/ other people around, well in my experience keep it short sweet and to the point. You have a condition that requires you to follow a celiac diet. In fact, servers in restaurants and people like that, just tell them you are celiac. Gets the point across quickly and underlines the seriousness of your condition.
Best of luck on your journey, and I hope that my comments have helped somewhat.
Joanna
Hi,
I can relate to your questions cause I chose to go gluten-free long before I even heard the word “Celiac”. (I won’t go into full detail here. But if you’re interested, you can read it: http://www.laurawestkong.com/gff/2012/my-gluten-story/)
Surprisingly, many health care providers supported me in going gluten-free, said they’d heard it helps improve a wide variety of conditions. In the end, my GI doc finally gave me a celiac blood test after my being very strict gluten-free for over a year, without any gluten challenge. Said it didn’t matter whether or not I’d been eating gluten!!!
I’ve given up pursuing an answer to whether or not I have celiac. I just want to feel well, aka normal, again. I don’t care what you call it. If I had to self-diagnose (kids, don’t try this at home. Get medical supervision, preferably someone that knows what they’re talking about) I’d say chances are good that I have celiac.
When I fill out medical forms I put gluten in the “Allergy” box. Yes, I know that’s not technically accurate, but the doctor’s going to ask about it, and I explain it all at that time. Putting celiac also is no guarantee you’re going to get taken seriously.
If you’re not being taken seriously for any reason, you’re going to the wrong doctor. And changing doctors repeatedly to find the right one can be tough without good insurance or a large bank account. Personally, I’ve received the best help and been taken most seriously by a holistic doctor.
When I eat, I eat strict gluten free, like someone with a serious case of celiac would do. I don’t fool around with that. If a substance causes me so much pain when I eat it, I’m not taking any chances with it. Pain usually = something wrong. If I’m not celiac and not suffering intestinal damage when I eat gluten, there are still a host of other body parts that hurt. You can’t tell me I’m not bring damaged somewhere. And when the leaky gut hits, even if its caused by something other than celiac, that’s still serious intestinal damage.
As far as what to say to other people, I usually say simply “I can’t eat gluten. It makes me sick.” That’s accurate and enough info for most people. I avoid going into detail unless I know the other person truly cares about me or is interested in learning. Actually I’ve encountered both types, caring and interested, quite a few times. Sometimes people tell me about others they know who have problems with gluten and I can tell they truly care, both about how to help their friends better and also helping me not to get cross-contaminated.
Try to get as much medical and nutritional support as you can. I know that’s hard as a student. And educate yourself. Being knowledgeable can help you discuss issues better with health care providers, as well as help you live a more healthy life.
And consider this, if you were to get a definitive diagnosis, that doesn’t mean your troubles would be over. Diagnosed or not alike, people continue to struggle even after eliminating gluten.
If you have any other questions, feel free to contact me via my blog, http://www.laurawestkong.com/gff While I don’t post as consistently as Gluten Dude due to fatigue and other issues (I often develop food intolerances to the very recipes I’m developing right before they’re complete…frustrating on so many levels) I haven’t fallen off the planet and am always glad to help in any way I can, or just listen and share your pain and frustration. Not give medical advice, mind you. I’m not licensed to do that. 🙂
Stay strong and don’t give up.
I, too, have a semi-diagnosis. I had positive blood tests and my doctor urged me to try the diet for a few weeks to see if it made a difference. Made such a difference that by the time I could get in to see a specialist and arrange for an endoscopy, I’d already been gluten free for several months. Specialist explained that I’d have to eat the equivalent of two slices of bread every day for 2-3 months before having the endoscopy if i wanted it to be accurate (doctor had not mentioned this when urging gluten free). My (now) husband and I were in the middle of planning our wedding at the time, and I just wasn’t willing to spend 2-3 months miserable at one of the busiest times of my life just to (possibly) confirm what I already knew. This was reinforced after I did some research on the endoscopy/biopsy process, and saw how often things went wrong or were missed – or (as above) people were deemed to be ‘not celiac enough’.
So, while I think it’s likely that I have celiac – I’ve got several family members with it, I tested positive on blood and genetic tests, had several vitamin deficiencies, have had a great response to the diet, and get obviously sick for days/weeks if exposed to gluten – I can’t say 100% for sure that I have it. This doesn’t really bother me except for one thing: I’d very much like to talk some other family members into getting tested, and I think a formal celiac diagnosis might help me make that argument. Otherwise, I can’t see that it makes a huge difference. Perhaps if more follow up care was available for celiacs, I’d be more interested in completing the diagnostic process.
I’m pretty sensitive, so I generally tell restaurants I’ve got celiac disease, because I think they take that a lot more seriously. I tell family and friends that I’m gluten free and, if asked, explain the circumstances. But most of them have seen such a huge change in me over the last two years that they’re just happy I feel better.
I am in a different but maybe the same situation here in Jersey. In April of this year i was diagnosed with h. pylori (scary little bacteria, don’t google it…) and was given a four week prev pack of antibiotics. i remember looking on the warning and seeing in tiny little print that in rare cases colitis may occur after treatment, sometimes permanently. I ask the pharmacist about this and assured me that he has never seen that happen. (let me think about this in retrospect…this guy looks ten, why would i feel reassured by him). Anyway, the antibiotics were bleeping horribe. Shortly after the course of treatment i became a trainwreck. I didn’t even want to be around me. Figured out something i was eating was causing the problem so i began the process of food elimination. First food i picked: gluten. Jackpot baby. This is how uniformed i was-first dinner: Campbell’s Tomato soup and GF crackers. Next morning i was wtf??? I ate well, no gluten. Go into the kitchen get the can out of the garbage, third ingredient is wheat.
I guess where i am going with all this is that i am on the next step, i go for a celiac panel next week. What do i do if it says negative? Or positive? Guess we will find out. The other question i have is my doctor informed me that even though i have not been eating gluten the antibodies will still show up and that will confirm the diagnosis. True?
Cheers y’all, its finally Friday!
Jersey Girl
post script:
“From now on, I’ll connect the dots my own way.” ~Bill Watterson, Calvin & Hobbes
You won’t be able to trust the results of that celiac panel if you haven’t been consuming gluten. Going gluten free before being tested is how so many of us unintentionally ruin our best chance for a positive diagnosis.
Love the Calvin and Hobbes quote!
This is tricky to answer.
How long have you been strictly GF? Once you stop consuming gluten, the antibodies start to go down.
You could very well have a negative result, but it may not accurate.
This is why people should always be tested before going off gluten.
It is often too difficult for people to go back on it for testing.
If I had to do it right now, I would refuse. But that’s just me.
It comes down to this: how important is a DX and how much gluten can you tolerate before you are too ill to function.
And…since some tests can be falsely negative, then what?
It is a dilemma, for sure. I had negative blood panels myself and was left unDXed for years.
Some people–they think up to 20-30%–are sero negative.
Hi College Student
My son became ill at age 13 and celiacs disease was diagnosed by the naturopath by looking at malabsorption issues. My whole family went gluten free immediately and we all felt immerserably better after three days. We went to the GP who said don’t go gluten free yet (ie continue to suffer). Our GP referred us to a pediatric gastroenterologist who 9 months later said my son had the classic symptoms of celiacs disease. We scheduled a gluten challenge for the summer when he finished exams. One small meal of gluten and he suffered enough that he decided that was enough of a test for him, no endoscope was needed. He’s a clever young man and we discussed the pros and cons of suffering a few weeks and having the endoscope but he decided against a formal diagnosis.
We went ahead and notified his school that he has celiacs disease (without the formal diagnosis), using that term. We tell friends he is suspected celiac who is on a gluten, dairy and soya free diet and has absorption problems as a result of celiac disease. We are up front with the GP that he is better on the gluten free diet and that we did not do the test. She is encouraging him to do the test when he is adult (she seems to think that I am preventing him from taking the test for some crazy reason). She disagrees with the supplements he takes. When we are in an environment with people we don’t really know and food is an issue we say “he has celiacs disease which is an autoimmune disease which gives him many varied symptoms including gastro symptoms and severe migraines and part of his treatment to stay well is that he cannot eat the same food as everyone else and he is so sensitive that we appreciate your trying to accomodate him but he prefers to bring his own food.”
I have a daughter who clearly has celiacs disease as well and we say the same things about her but she hasn’t done any of the process that my son went through (which wasn’t much).
My third child has no gastro symptoms but has dermititis herpaformus and so for her we say that she gets terrible rashes from eating gluten, soya and dairy. For her we call it an allergy.
My husband doesn’t say much about himself. He just doesn’t eat out and doesn’t drink beer anymore and has switched to wine when we are with friends and he just says that he has an upset stomach today and isn’t up to imbibing or eating or whatever. He never uses the celiac word and doesn’t believe he has celiacs disease although he is going through a gluten challenge and endoscope for diagnosis in January to rule out crohns, colitis and IBS.
In regards to myself, I say that my son has celiacs disease and that I eat gluten free so that I can learn what obstacles he will encounter so that I can teach him to advocate for himself. People accept that so readily, you could not believe how easy it is for me. But that is not the whole story, but honestly people need to back away and not pry so much! 🙂
All that being said, I think that you should just tell everyone you have celiacs disease, treat yourself as if you do have it and only tell your close medical practitioners the whole story. That’s what I am telling my two kids who we believe have celiacs disease to do. If someone questions you about how you were diagnosed, go through the story if you want or just say “it’s a long process” or just say, “why do you think you might have celiacs disease too?” Putting a question back at people usually gets them back to asking about themselves and you are then off the hook.
Best of luck!
I understand 100%. Since 1997, I’ve said to doctors it’s wheat.
Everyone must remember most doctors don’t know the correct info.
I don’t like using the term “gf diet.” People think of Lady Gaga.
Simply explain that my body is much better without gluten.
Doctors never verified if I was celiac or not. You can’t look at your
blood test results? That’s a bunch of hooey. I always get copies.
I used to say “I’m gluten intolerant and probably celiac.”
Answer=I have a problem with gluten. My body is much better now.
I have to follow a gf diet to stay healthy. (only allowable time) gf diet
To this day, not one MD in Canada will say I’m celiac.
Have documented everything since hell arrived in 1988, but that
doesn’t matter. I put a end to their shit-show in 2007 by going to a
naturopath and confirmed finally with Celiac Disease.
Side note: I am big-time sick as we speak. I will post in “Celiac and the link to other diseases.” Figured it out finally. Something has been attacking for at least 6 months. It mimics celiac like a parrot.
It has become so bad that now it’s easy to know what it is.
I don’t like these Kodak moments anymore. Everyone must read it.
This time, it will be tears of joy. Sick, tired, messed up and laughed at since 1988. Little did they know that they were fueling my passion and quest to prove everyone of them wrong. Give me a hour or so to collect myself. As of this morning, finally know the cause.
What to call myself….. a confused diagnosed celiac….. I did stop glutenfor 2 wks or so before my blood test. Had i known that was wrong I may have still stopped. I was gettin off the charts igg, igM, RA factors, extreme anemia ( gettin b12 shots ) , elevated c protiens, kidney, bladder and of coarse leaky gut among diverticulitis, and other intestine situations. I started with a nutritionist to start ridding my system of this gluten situation and all my problems are still present but already so fast(which i thought was not possible in 6wks) my blood work is nearly normal and I am having better days for the most part. I have been given so many antibiotics etc it seems now my gi doc is blaming that for my dysbiosis of the gut. Of coarse 4 positive celiac biopsy`s and my some what common sense knows I am living with it and an answer has helped me feel less crazy for the most part. It is a relief to know and I feel lucky to know, now just if excepting it would get easier. Thanks for listening. Good luck.
Danielle
You already have lots of advice above but I would like to reinforce two important things to do now and in the future.
1. Contact that pediatric GI who did the scopes and say you REQUIRE copies of your test records. Do not leave it up to doctors to “get your prior records” for you. It is important that you keep a file with all medical tests done.
I too learned this the hard way, which brings us to #2.
2. Always, always, always request a copy “for your files” whenever you have any testing done. Not just celiac-related but any kind of medical test. Don’t wait until later. Tell the nurse who is prepping you, and then tell the doctor too. You want a copy of the record when you leave the office. If they don’t have the results at that time, make it clear that you want a copy mailed to you or faxed to you when they have it. And be sure you follow up.
This will save you a lot of frustration in the future. At least from this day forward you will have a record of your celiac/ gluten sensitive record..
While I have my confirmation, I do have sympathy for everyone who doesn’t. A very wise woman said that being diagnosed doesn’t have to mean a medical diagnosis from a doctor. Not only do I agree with her, but in your situation I find this even more applicable. The doctor did find compelling evidence but it sounds like they stopped short for some reason or another. You know, for absolute certain that gluten will ruin your life. If you feel that saying celiac will cause you to be taken more seriously (I have no doubt this is true in many situations) then by all means do it. You have been diagnosed. FIrst, sort of in a haphazard and offhand way by the doctor who stopped just short of the label. Second, by yourself if you choose to do so. You aren’t hurting anyone by saying the word celiac and if it keeps even one person from rolling their eyes at you and frustrating you, go for it.
I know that the money can be difficult to get for medical records, and you may not be able to get them all, but a warning. I have lost decades of medical records. Find out how long records are kept at the hospital that has them and don’t let it go so long that they are lost forever. At the very least, if it is only a few dollars, get copies of the test results.
I have a similar situation, but I went through years of medical issues. I had to loose everything, move to another state, before I even heard of gluten. Because of financial issues, had to move back to the state that I unofficially diagnosed with hyphochondria and pill seeker. I want so bad to get the official diagnose, but it truly destroyed me, and fear of the damage it could cause and what my family and I would have to go through. I read that gluten hypersensitivity mirrors celiacs but is more prone to neurological issues, in which, I have. To go through the process and not get the diagnose, would prove to everyone that they were right about me. My family and I , have been gluten-free for a couple of years; I believe my son has it, he’s been considerably better, no more missing school.. My husband is now showing signs of celiacs when he eats gluten, but that sounds too ironic. We just insurance, next week my first doctor’s appointment since I’ve been back. I’m hoping the medical system don’t find out I’m back, and, again, destroy my reputation and any chance of help I need. I have some connective tissue problem disabilitating right now, no idea what it is. I want my reputation back so bad, people and family have called me a liar and a fraud, I lost my career, I was a court clerk, had a BA degree, because I was sick so much. I feel like unless, I get a doctors note, I’ll never be legitimized. People don’t believe that gluten can cause so much havoc in someone’s life, but if you have undiagnosed celiac’s it can…think, poisoning yourself every day of your life, how would someone react. No one believes it’s an autoimmune disease. Well, the doctor, I’m seeing next week has read a book on it, so I’m hopeful. Unless, my past catches up to me, I hope I should be treated respectfully, with my new issues. I can uses any extra prayers.
Hon, you said:
“Anyway, my results from the biopsy apparently indicated signs of celiac disease but it was not 100% certain. I was told to try going gluten free and if I felt better, that was that.
I did this and after some time I felt a lot better. I told my doctor and they said that was good and then I never heard from them again”
OY ….. okay, please hear me out. I may have a solution for you.
If a biopsy “indicates signs of celiac”—you have celiac.
It’s like being pregnant–you aren’t “sort of”—you are or you aren’t.
They should have been more specific and provided follow up care.
There are several stages of villous atrophy, called the Marsh Score.
“Scores range from stage 0 (normal intestinal mucosa, celiac disease unlikely) to stage 3 (villi are totally atrophied and crypts are elongated and increased in number). Unfortunately, celiac disease is not the only disorder that can cause these changes.
A celiac disease diagnosis, therefore, must be confirmed through other blood tests and the patient’s response to a gluten-free diet.
Definitive diagnosis depends on a positive small bowel biopsy and a demonstrated response to a gluten-free diet. Diagnostic criteria include architectural changes in the small intestine, including mucosal villous atrophy with crypt hyperplasia and increased intraepithelial lymphocytosis. The rate of change may be slow and the changes nonspecific.
Multiple tissue samples are vital to an accurate diagnosis. Celiac disease can cause patchy lesions in the duodenum, which can be missed if only 1 or 2 samples are taken. Research shows that when only 2 duodenal biopsies are obtained, diagnosis is confirmed in 90% of cases. However, 3 and 4 biopsies increased detection to 95% and 100%, respectively.”
—-The Univ. of Chicago Celiac Center
There’s a reason why only 3% of celiacs are diagnosed, in my opinion–it’s because DOCTORS fail to recognize this is not just a “rare childhood disease”. In fact, people over 50 are being diagnosed at an alarming rate because–guess what? They had celiac all along and they are so ill and had multiple autoimmune diseases develop as a result of being undiagnosed that it cannot be ignored.(This is my experience. My primary care doctor said he did not know how it manifests in adults–and his own children have celiac)
Other reasons:
(1) blood tests can be falsely negative (mine were, but I have celiac)
(2) biopsies are done incorrectly
(3) people’s collective symptoms are dismissed
(4) genetic tests aren’t done to assist in diagnosis
(5) lack of follow up care from the GI doctor who did the biopsy–
because if you respond favorably to the gluten free diet, have normal vitamin levels after a few months…and had a “positive biopsy” –despite the “vague” way it was worded– and he SEES all this in you, then a diagnosis CAN still be made.
I just saw a young woman I know get a DX–six months after going GF. My GI said he could say she had celiac, based on her “iffy” celiac panel, her normal CMP, CBC panels of blood work (which had anomalies) and her GI symptom resolution. Most importantly, her dangerously high liver enzymes (i.e. fatty liver) are back to normal.
A previous doctor had disregarded all of that, yanked out her gall bladder and told her she did not have celiac.
I told her, don’t listen to that guy–go see mine! 🙂
But, the main reason why such a large percentage of people who have celiac (that’s 97%!!) remain undiagnosed is….doctors who fail to see a celiac standing right in front of them!!!!
If you really want to see if you can get a diagnosis,
(1)get copies of the biopsy report –just those few pages;
(2) bring it to a new doctor, one who is celiac-savvy–and you can find one by calling the local celiac support group and ask them who their medical advisor is;
(3) explain your symptom resolution from a GF diet
(4) then, he can do a relatively inexpensive genetic test for you (blood or stool sample)
(5) and now, you have 3 of the 4 criteria needed to make a celiac diagnosis. If this person is willing to do it, of course.
Understand, the celiac blood panel will be negative — because you are off gluten and the antibodies will likely be negligible.
Please, read this article and print it out. Dr. Alessio Fasano, one of the leading celiac researchers explains the better criteria for making a diagnosis:
http://celiaccenter.org/documents/CD%20Diagnosis,%20American%20Journal%20of%20Medicine%20August%202010.pdf
In part, he says: “The biopsy, considered the diagnostic gold standard, has been recently questioned as a reliable and conclusive test for every case”.
I hope this helps you–or anyone seeking a celiac diagnosis.
No matter what, if gluten makes you sick, stay off it. Dr. Fasano, Dr, Green et al. recognize gluten sensitivity as a real medical condition– and soon, everyone will follow suit.
Always–and I mean always!–get copies of any tests done and keep a file for yourself. This is very important. Trust me on this one.
Best wishes to you!
After my sister was diagnosed with Celiac Disease and based on the fact that my symptoms mirrored hers almost to a T, my doctor and I decided instead of putting me through expensive testing that my insurance will not cover that I should just alter my diet.
Based on the improvements I have noticed and the fact that I suddenly became sensitive to soy and dairy (again mirroring my sister) I refer to myself as someone with Celiac Disease even though I’ve never had the test say YES.
My sister had to go to the extent of a pill camera/scope after they tried everything else before they finally detected and diagnosed what it was. U/F for her they removed her gall bladder thinking that was it before they did get it narrowed down. (SO glad she found out, because I was also having gall bladder pain and was probably headed for removal – she saved me an organ.)
For me the benefit of getting a diagnosis in the UK is that if you are a low-income earner than the health-care system gives you free GF food each month on prescription (bread, crackers, pasta, etc.). This might seem funny considering you can’t even get your medical records without paying — shame.
But for people in the UK, it’s worthwhile to note.
Also, you might need to be careful about family histories. There is colonitis in my family for example. Self-diagnosis is sometimes the easiest/quickest way.. I was convinced I had colonitis until they showed me my healthy colon on the monitor. So, it’s a pain in the ass (literally sometimes) but perhaps necessary to be sure of what you have.
Oh my, help with the food has to be wonderful! Groceries go way up.
I would love to have an official diagnosis; however an upper GI showed nothing (or should I say the determined my food digested too fast) after years of dealing with feeling horrible, tired, sore, etc. and finding out about my sister, my doctor gave me 2 choices, go gf and see if it mattered or start taking a long term RX for acid reflux (why that was option b I have no idea, I guess b/c of the upset belly all the time). That and my health insurance makes it impossible for me to afford a mammogram – I’m afraid to see what they’d charge me
Now I’ve been gf for 4 months and I got a bit of gluten (a very tiny bit from a counter top or something when I was away from home for the holidays) the other day and I PAID for that … no way I want to go back on gluten to push for a diagnosis at this point. :o/ That and seems they really aren’t very keen on testing for or diagnosing it around here; though I was happy that my doctor acknowledged the existence of the disease – unlike many doctors in my area.
My situation is similar to the college student’s; no official celiac diagnosis because I was gf for 3 months prior to the blood test. I had a long list of symptoms that I had suffered with for many years, and almost all were alleviated by taking gluten out of my diet. Right now my diagnosis is “gluten intolerant” because all my doctor and I know for certain is that gluten makes me very sick. I feel very certain that I have celiac, and after almost 3 years of living my life as a celiac I am convinced that I MUST know for certain!! I’m happy to live the rest of my life gluten free no matter what I find out, but I MUST find out!! Here’s my plan. I’ve already obtained my medical records from the Dr. that diagnosed gluten intolerance (I didn’t have to pay anything at all–guess I got lucky). Next I am going to do some research ( online and word of mouth ) until I find a doctor who is knowledgeable about celiac and has stayed up to date on the latest research, etc. I am going to request a genetic test from this doctor. If I have the genes for celiac and I get very sick when I eat gluten, and I improve when I am gluten free, I would hope that that would be enough for a diagnosis of celiac. (I know that the scope is the “gold standard”, but after 3 years gf, wouldn’t I be healed completely?) This at least would be enough evidence to convince ME that I have celiac. So to the college student: look into genetic testing–you don’t need to consume gluten for that test. If you have insurance, part of the test might be covered. Stay gluten free and take good care of your health, that is the most important thing to do until you can find out for certain. Good luck!
The genetic testing may not tell you you have it either. There are people who have tested negative on genetic testing yet tested positive via endoscopic biopsies.
I feel that any doctor that tells you you should eat gluten to be tested after you have already gone gluten free – is crazy and putting you in danger.
A piece of paper is not worth my life.
This is true about the gene testing–a few rare cases are neither DQ2 or DQ8–and I just posted about that on another of GDs blogs articles, but I mentioned it as just another piece of a puzzle that may aid her in a diagnosis.
She is not positive on blood panels and she is not going to be biopsied again, that’s for sure.
Odds are pretty good, if she has a positive biopsy (and I believe she does from what she has told us) , that gene test will show DQ2 or a DQ8.
Great link, Irish Heart. I’m in that .4% of celiacs without either gene. My doctor calls it “non-genetic celiac” so that’s what I’ve been calling it. I had previously just called it an allergy, but if my doctor calls it that, I tend to go with what he says (pretty brilliant guy, actually).
I’ve met a few other folks who are in that .4% as well – some day my guess is that there is going to be a term for celiac caused by other genetic autoimmune disorders. That’s what I really have – more markers for diabetes (both types) as well as a slew of the other autoimmune disorders. I was doomed from birth with T1 diabetes, and something happened in my body chemistry to give me celiac as well. I only wish the science was so good 20 years ago, because I wouldn’t have to be undoing all the damage now.
Connie,
Some speculate that celiac triggers first. Then, malabsorption and chronic inflammation create other autoimmune diseases. Some say they occur in tandem. No question most AI diseases are associated with GLUTEN and celiac, IMHO.
In any case, I am very sorry you have had to deal with all of this, honey.:(
My sister and a good friend have type 2 and I wish I could get them to stop the gluten.
Type 1 diabetes and celiac disease may be caused by common underlying mechanisms such as autoimmunity-related tissue damage and intolerance to dietary antigens,
This link with T1 diabetes…is often cited as number 1 under “common conditions associated with celiac”.
you probably already have read these, if so, disregard..
http://www.sciencedaily.com/releases/2008/12/081210180841.htm
and
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2840835/
kind regards, IH
I hadn’t actually, thanks! Now that I work in a field where I can get access to those journal articles, its like heaven – I can research all I want from my desk LOL.
I have been working with my own doctors and nurse practitioners to start them getting in the habit of asking about celiac symptoms and asking people to regularly think about this issue. My NP was sad to find out that over half of her T1 patients (mostly in their 20s and 30s) were testing very high on the IgA/IgG and finding the intestinal damage consistent with celiac (though some were mild). I’ve been telling every diabetic I know to get tested, and every parent of every T1 I meet to start watching for strange symptoms that don’t seem to add up, because its probably celiac-related. There are SO many doctors and nurse practioners I meet that never even beg the question that maybe its something other than hypochondria or someone with “sensitive digestion”.
The more I talk to people, the more I realize – we as humans put up with an awful amount of stuff because we think we’re weird and it makes us uncomfortable. People stomach an awful lot of digestive pain and suffering thinking its “only them” and that they have a “sensitive stomach” when they are allergic to many common foods. I think back on my own grandmother always saying how sensitive her stomach was and it makes me wonder if she was also celiac as she had multiple autoimmune conditions as well. I have also found many of my friends, whom, upon food testing, discover one or more food allergies that they didn’t know about and are finding many “inexplicable” health conditions clearing up.
That’s very interesting. A friend of mine has recently been doing the Paleo Diet to see if some of her chronic digestive and skin issues were food related – shocker – turns out they are! She seems to be gluten sensitive, so I’ve been encouraging her to get a celiac panel before she’s off gluten for too long. Her younger brother has Type 1 diabetes. Not a coincidence, I think.
In addition to the problem of thinking it’s ‘just us’ or ‘I’m just sensitive’ – there’s also the opposite problem: you think everyone else feels the way you do. I could probably have been diagnosed with Chronic Fatigue before dropping gluten, because I was exhausted all the time and fell asleep at the drop of a hat. I never realized that other people didn’t feel that way until I got diagnosed and finally had energy. Same thing with my frequent migraines and stomach issues. You don’t realize how bad you felt until you actually experience what it’s like to feel good.
Well, sure, because we are told there is nothing wrong,
and we figure “this is just how it is”.
Or we are given a quickie DX of “IBS” –which I laughingly call the doctors thinking: “I Be Stumped” —
Or Fibro–because they think all “pain, brain fog and fatigue” must be this syndrome.
Or any other syndrome.
Celiac is the great mimic. It can manifest in so many ways, it can appear to be anything from hypothyroidism to lupus to liver disease to ankylosing spondyloarthropy (yes, I heard all those words)
I did that all my life —listened to the doctors and did what they said—and I allowed myself to have organs yanked out left and right.
Not anymore!
This is why I try so hard to get people to see that gluten is a poison.
Whether you are a celiac or gluten intolerant or just “not there yet”–taking a good and honest look at your symptoms may give you a clue as to whether gluten is your underlying problem.
Gluten = inflammation and inflammation = autoimmune problems.
Just my opinion, of course–but the evidence is overwhelming.
Well, that makes me sad Wendy. I hope I’m not the rare case where a genetic test would be negative even though I might really have celiac. I feel like it’s my last hope for finding the truth, and if it’s negative I will assume I’m gluten intolerant and not celiac. I won’t change the way I eat or my lifestyle at all. I agree that it’s not worth it to consume gluten again for another round of blood work; I was about half dead when I ate gluten and I’ll never go back to that state of health again!
No matter what the tests reveal….if gluten makes you “half dead” (and I was dying myself from it)….
I agree with you….stay off it.
This one food protein is not essential to anyone’s diet. It’s not.
Wheat is ridiculously difficult for anyone to digest (not just my words, but many scientists and researchers) and I am not surprised by the many health problems it creates.
I mentioned the genetic testing as I was tested and came up negative. I was saddened that it did not tell me I had Celiac Disease, but was somewhat comforted reading that others do not have one of the 2 genes, yet tested positive via endoscopy.
IH – sending you an email soon – I’ve been crazy busy here in FL!
Thank you always for all your Gluten knowledge. Xoxo
I have met a few celiacs with a DQ9 gene.! So, YES, using that diagnostic criteria is not 100% reliable either, I’m afraid.
This genetic component is being researched even as we speak.
The lid will be blown off celiac and associated AI diseases someday–perhaps in my lifetime (I’d love to see that because this disease should not be so darn hard to diagnose!).
http://www.celiac.com/articles/22461/1/New-Genetic-Variants-Might-be-Associated-with-Celiac-Disease/Page1.html
http://www.celiac.com/articles/21628/1/Celiac-Disease-Genetics/Page1.html
“The presence of one copy of DQ1, DQ3, DQ5, DQ6, DQ7, or DQ9, even with one DQ4, is associated with a risk for elevated stool gliadin antibody and symptoms of gluten sensitivity that responds to a gluten free diet.”
Does this mean someone with these genes has celiac–who can say?
The research will tell us someday.
I found this most interesting:
“Tests that detect H.L.A. DQ2 and DQ8 genes can suggest a diagnosis of celiac disease, but they cannot confirm a diagnosis, since 35 percent to 40 percent of the overall American population carries these genes.
Only a small subset – 2 percent to 3 percent — of all people with these genes will ever get celiac disease.
In addition, only about 40 percent of the risk of celiac disease can be attributed to these H.L.A. genes.
We believe that other genes, as well as environmental factors, lead to celiac disease. So far, scientists have identified over a dozen possible non-H.L.A. genes that may be associated with celiac disease, but whether these genes actually play a role remains to be seen.”
http://consults.blogs.nytimes.com/2010/01/13/genetic-testing-for-celiac-disease/
Fascinating stuff! 😉
I too am an undiagnosed coll ege student, but I eat as if I am a celiac. I don’t say that I am gluten intolerant or a celiac, I just say that I’m gluten free and then describe the pain and suffering that occurs when I eat gluten.
I started developing extreme symptoms during freshman year when I was on the cross country team and carboloading. There was a point where my relationship with food was so terrible that I became bulimic. Despite having a terrible freshman year and going home to get treatment, all of the digestive problems that I were told were side effects of bulimia would not go away. I didn’t have health insurance and was paying for therapy out of pocket. I finally went gluten free on my own and discovered that not only the pain was gone, but so were the food cravings, the depression and the sleepless nights.
I was told I needed an official diagnosis for celiac and since I would be getting good health insurance through my university and they have a good gastro unit at the hospital here I figured that I would try. They were going to have me do a gluten challenge for three months. I said okay because I wanted the diagnosis.
Never again.
I was on the challenge for two days and suffered so horribly for the next two weeks that my mother refused to let me do it and told the doctors here that she would not subject me to it. I did get a panel done and it came back negative, but the practioner I spoke to said “I can’t prove you have celiac disease with blood records and everything. But everything that you told me says that you have celiac disease, and by no means should you eat gluten.” She didn’t want me to do a biopsy because a. I couldn’t afford it even with the health insurance and b. we knew what it is.
After all of that, I’m still “undiagnosed”. In the end I just tell people that I’m special and I don’t eat gluten or gluten contaminated products because even if I am just intolerant the results are still severe.
$120 for viewing medical records? That sounds either incorrect, or they’re price gouging and need to be reported. Check the laws in your state to see if that’s actually legal. I understand paying for copies, but unless your chart is over a thousand pages, there’s no need to pay more than ten bucks. If it was your doc who was going to charge that, I’d call the laboratory who ran the tests and fill out the paperwork to have them released directly to you.
I can’t show you the actual ruling but about 20 years ago, the courts found that a medical facility could charge $15 plus $1 a page for copies of records not directly for medical purposes. That amount may have increased by now or she asked for the whole thing when what she needs are lab reports, procedure report and pathology report – 10 to 12 pages. Unless there were more things than just the GI stuff.
good point, Kay!
Anytime I have asked for medical records, the office had graciously sent them OR faxed them to the new doc OR they charged $1.00 a page.
Now that I think of it, that ruling was more like 28 years ago! Agh! I’m getting old. Anyway medical info law was my best class a long time ago but it hasn’t changed much.
I’m assuming you are in the US? Have your records sent to your regular doctor or OB/ GYN ( if you are a girl). They will send them free. Then ask the regular doc for a copy ( which they don’t have to give you as they aren’t their own records but likely will) or at least a chance to read them and take notes.
Another thing you could do is have them sent to your ” new doctor” in another city with a different last name than yours. Like your brother- in – law or your parents next door neighbor. I doubt they will check if Dr. Brother Inlaw is really a doctor.
As IrishHeart says, you either have it or you don’t.
From what you’ve said, I would certainly say that you have celiac and should consider yourself diagnosed as such. Personally, I would write ‘celiac’ rather than gluten intolerance on any forms.
This is because a) you have symptoms when eating gluten b) the symptoms are alleviated when you stop eating gluten, and c) you have “some signs” of celiac in the biopsy.
You should remember that they only take biopsies from a few areas (and sometimes not as many as they should). Even if only one area is showing signs, if it is resolved by removing gluten then you have celiac. Moreover, it is not unlikely that other areas would show more definite signs, if there were a way to biopsy the whole small intestine!
If possible, I would try to save up to get a copy of your results just for peace of mind (or follow the advice of some of the commenters above to get hold of them without paying).
With regard to other situations such as eating out/meeting new people… If I go to a restaurant and they seem like they want to be helpful then I will explain about celiac (if they don’t understand the term). If they seem disinterested and brusque then I tell them very firmly that I have an extremely severe gluten allergy. Unfortunately this probably helps to perpetuate the problem with people not understanding celiac properly; however, you can often tell that they’re not going to take it seriously otherwise and it can be too much of a risk to your health.
I take a similar approach with new people. If they seem kind and/or I’m going to have to spend a lot of time with them (e.g. a new colleague) then I’ll take the time to explain celiac thoroughly. I usually minimise use of the word “intolerance” (because people don’t take it seriously) and focus on the autoimmune aspect, comparing it with more well-known diseases like type 1 diabetes. Obviously this isn’t so helpful for people who don’t “officially” have celiac (although I don’t believe this is the case for the original poster)… If mine wasn’t medically diagnosed but I was confident that I had a gluten problem then I would say whatever I considered to be necessary for my own safety. If I need to tell a chef/acquaintance that I have celiac (rather than gluten intolerance) to ensure I’m taken seriously (unfortunately it’s often not that simple!) then that is exactly what I would do…
I live in the province of Ontario and did not have to pay out of pocket for any blood work to test for celiac. My specialist indicated only one of my three blood test results showed celiac but the endoscopy biospy clearly nailed the diagnosis. I have been gluten free for 10 months now and feel so much better. I cannot believe now looking back now awful i felt (severely anaemic too.) Yes, so many people just have no idea what celiac or gluten is all about. A co worker said to me “you can eat bread right – you just have to avoid gluten”!!! I gave her an education!!
I really enjoy this website – keep the faith – we are all in this togehter.
“Keep the faith – we are all in this together.”
Indeed we are…
Reading all this I’m so glad I’m British because our health service covers all the testing costs as a matter of course and my GI was great. I’m totally horrified about the hoops some of you guys had to jump through to get proper medical attention.
Is this a great country or what??
In many ways, yes 🙂 ….but regarding THIS issue, um, not so much 🙁
Woefully behind on celiac awareness, despite our best efforts.
We press on!
It’s why this blog post GD is so important. Many of you have found a fabulous doctor early on to get it. Many of you have found a fabulous doctor a bit to late, but at least still got it. Too many of us never found that doctor and had to do it ourselves. Not Fabulous or Great At All.
You know how appreciative I am of this post – and thank all of you who are sharing their “non-diagnosis” it helps even if it is to feel better 1% more it Helps.
There is still a problem with diagnosis though (I am British too). My tests were all free (thank goodness) but even though I am a fairly classic case, I had to change practices before I was diagnosed. My old doctor had told me I was stressed and anaemic… My new doctor sent me for a coeliac blood test after talking to me for two minutes! So it’s quite hit and miss.
Hi everyone,
Thanks so much for your input. I will definitely try out some of your suggestions for obtaining the medical records. And for those who were wondering, I did ask for all the records because I wanted to see what had been included by the psychologist about my “therapy.”
Thank you all again for your advice. It really means a lot to have support from this community since I don’t know anyone who is dealing with this (or will at least admit to it, but that’s another story!).
I know how important it is to take this seriously. I actually know someone back home who just passed away due to intestinal cancer (they were diagnosed very late with celiac disease) and I just need to remind myself that my health is most important. Diagnosis or not, I know why I was so sick and that is what is most important.
Everyone take care and have a happy (and safe!) holiday! I know I’ve said it before but thank you all so much!!
This is the one (and only) time I feel fortunate to have multiple severe food allergies.
I too had all tests come back negative. I had been GF for a bit before my endoscopy, so I’ll never know if that caused the negative or if I don’t actually have the big C! I DO feel like if I were to tell someone that I was “gluten intollerant” or “gluten sensitive” that I wouldn’t be taken seriously. However, I choose to tell people that gluten is one of my allergies. People seem to understand the severity to which peanuts, tomatoes, corn, oats, peaches, avocados, etc. can not touch or be in my food, so it makes sense to me to utilize that understanding and wrap the gluten in with those other foods!
Hi There,
Here’s my long story…hoping for some sort of direction/support.
I was recently diagnosed with type 1 diabetes at age 22. It came as a complete shock to me but after I got things under control I felt better than I ever had. I had been planning on moving to Madrid after college to teach english and didn’t want to the diabetes to hold me back in any way so I went shortly after being diagnosed. A month before I left I started having some digestive issues, diarrhea and such. I went to the doctor and he told me I had a stomach virus. I thought nothing of it and moved to Spain anyways.
About a month of living there the symptoms started to get worse. The D was happening more often with also constipation, leg cramps, dizziness. I was experiencing all these symptoms in another country and trying to figure out what was wrong. My sugars/diabetes were in control for the most part. After the symptoms getting progressively worse I decided to contact my doctor back in the states to get some relief/help. She said that all my symptoms seemed related to a gluten intolerance or celiac. I looked up celiac symptoms on the internet and basically had every single one. While my health was getting progressively worse and the economy in spain is far from good, I decided to move back to the states and get this all figured out. My doctor recommended going on a gluten free diet just so I could make it home from Madrid.
I started to feel better and a lot of my symptoms went away. I got tested for the celiac blood panel and it came back negative (still eating a gluten free diet at the time of the blood work). After waiting a month to get into the GI doctor and still eating gluten free, I had an endoscopy done and he told me that I needed to eat a piece of bread everyday for the week leading up to the surgery. After eating a small piece of bread for 4 days, I started to get the leg cramping again but no episodes of diarrhea like before. The endoscopy came back negative for gluten intolerance/celiac and he said my stomach delays emptying. I then had a stomach emptying test done to confirm the endoscopy results and it came back that my stomach does in fact delay emptying. I also had the GI doctor do blood work for vitamin deficiencies. He didn’t check for vitamin D, but everything came back fine besides my iron levels were low. He sent me out the door with medicines to try for the cramping and said to eat small, low fat meals for the delayed stomach emptying. I already eat small, low fat meals and eat VERY healthy. I cook all my meals at home and dont eat dairy. Fruits, veggies, legumes, nuts, and fish is what my diet consists of.
So now here I am left with negative celiac results but still eating a gluten free diet (3 months). A lot of my symptoms have gone away, except the CRAMPING, headaches, and constipation. The cramping is in the lower abdominal section and is a dull ache. I am so confused because now I don’t know if gluten is the problem or it’s something else? Does the cramping usually go away after not eating gluten if I have a true intolerance? I just feel lost in all of this and want to figure it out. At 22 years old, I never would have expected all of this and at this point I just want to feel better. I am learning to accept the big life change of diabetes and willing to stay away from the gluten to feel better but the cramping and other symptoms are still present. Can anyone offer any advice/suggestions? I feel crazy, especially since the results have come back negative.
Hi Natalie. Could be a false negative. If you feel better off gluten, stay off gluten…regardless of the diagnosis. As for your other symptoms, I can offer no medical advice.
Perhaps somebody else can pipe in and help out??
Hi Natalie,
I went off gluten 1-1/2 years ago. Felt better at first, but new food intolerances keep bringing symptoms back. It has been a never-ending roller coaster. Speaking from personal experience, (by all means this is not professional medical advice): Get help. Find yourself a holistic doctor or a dietician who specializes in food intolerances and healing the gut. There are all kinds of reasons why people relapse after going gluten-free, even on a careful, healthy diet, and none of them are good. Get help. Get help. Get help.
And support. Remember, you’re not alone. 🙂
Hi Natalie,
As a celiac who is also seronegative on celiac panels, I am often frustrated for people who have negative blood work and still have symptoms and no answers.
Unfortunately, you were gluten free for a month before your biopsy and the GI doctor gave you poor advice about how much gluten is required to do a challenge pre-biopsy.
A piece of bread everyday for a week–is an insufficient gluten challenge amount. This could very well have caused a false negative biopsy.
“Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 12 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet”..
http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets5_Diagnosis.pdf
Sorry, hon. 🙁
I am not a doctor and this is not medical advice, okay—but legumes are notoriously difficult to digest and could be causing your abdominal cramping and constipation. Dump them for a week and see what happens.
Probiotics may help heal your gut and get your bowels moving properly. Culturelle makes one that is GF and Dairy free.
Constipation is often from a lack of enough water. Drink up.
Try a Tbls. of ground flaxseed meal in 16 oz . of water every day for a week and see if that helps.
Chronic constipation, headaches…can also be caused by hypothryoidism and it would be wise to have your thyroid checked.
Diabetes, thyroid and celiac–are a triad of AI diseases that often appear together.
Whether you have CD or not, your diabetes should be more manageable off gluten—if gluten is fueling the inflammation on your system.
Diabetics may see a significant decrease in their blood sugar levels. Therefore, less medication and insulin is needed to be given to the body from the outside in.
You may wish to see your endocrinologist for a thyroid panel and to discuss what happened with the celiac panel and botched biopsy and ask to see a nutritionist. You need some reliable medical advice and the endo is a good place to start.
Just some thoughts. Best wishes to you!
Have you tried eliminating dairy products? It’s npt uncommon to have other food sensitivities, esp dairy. I had to go off most dairy when I first went gf,but can now tolerate ice cream. Not sure what the deal is, but I Can have sour cream, yogurt, hard cheeses, butter and feta, also canned coffee drinks, but I have issues with mozzerella and milk, unless the milk is cooked. A friend thinks cooking the milk denatures the protein, but I suspect bacterial growth may be the real issue. Anyway, tried a little ice cream recently and it only made me a little gassy, no cramps. Word to the wise- bleu cheese can have hidden gluten, and obviously also has dairy. Had some early on; dairy issues and gluten issues! Never again!
This may also shed some light.
http://celiacdisease.about.com/od/diagnosingceliacdisease/f/Gluten-Challenge.htm
Thank you so much for the advice/suggestions. I really appreciate it and its nice to not feel alone in all this! Thank you again.
we got an unofficial diagnosis from our doc (he is a good doc, not a horror story one.) he knows that we don’t want to go back to being sick, so he made it so we don’t have to. if you know gluten makes you sick, just say you have it