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Say You Have Celiac Without Dx
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34 posts in this topic

Does anyone do this? Because I do and I know that sometimes it is looked down on by some people. 
The reason that I do this is because I feel that there is no way that I don't have celiac and am gluten intolerant. There are two other people in my close family who have severe reactions to gluten like me. When I was consuming gluten I was experiencing symptoms of a damaged villi, vitamin deficiency and all that. 

Also sometimes it is just easier for me to not tell people that I self diagnosed or try to explain the difference between gluten intolerance and celiac. 

So what do you guys think about people who do this?  

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For me...I think the difference is to whom you are speaking.

 

In our family - after I was finally diagnosed my teens tested negative yet had complete symptom resolution gluten-free -- one of them has officially been dx'd by symptoms, genes and symptom resolution and the other is happily NCGS without dx.  My eldest was an adult at the time of my dx - had one positive antibody test along with positive biopsy - one of her children is official dx and the other never ate gluten because of our history and this little one already had other digestive issues as soon as food was introduced...so remains officially NCGS.

 

Now that you know a brief history...I say if you are talking to a sibling or close relative it is important for them to understand a little more about the issue than a server at a restaurant or even when you explain your need to be gluten-free to an acquaintance or co-worker that is dismissing your need to be gluten-free.

 

One member here's mother had Celiac Disease with severe consequences and when symptoms arose she self diagnosed and tells folks she has been diagnosed with Celiac Disease -- she simply doesn't say by whom or how she was diagnosed.  Given the situation in my own family - I found this brilliant.

 

One last note for those that are reading along -- I remain a staunch proponent for pushing our doctors to understand testing procedures and do believe if at all possible people should attempt to obtain a diagnosis -- sadly, that is often prevented by their doctors. 

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As you've already displayed severe symptoms when you've consumed gluten, personally, I would not want to go through eating gluten again for 6 weeks in order to get an official diagnosis. I did and felt far worse eating gluten than I did originally. (Plus, think of the damage it does to the gut while consuming it!)

I'd say, what you tell others is your own business. If it makes you that ill when eating it, there's obviously an issue. I wouldn't wish on others what I went through just to get an official diagnosis. Having said that, if there are others in the family still eating gluten/wheat displaying symptoms, try and persuade them to have tests before giving up eating gluten. At the end of the day though, it's your choice whether you get tested and you don't have to tell others anything. That way you are not lying about the condition.

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I have struggled with this question too. I think I'd say go for it where it enables people to take your need for restrictions seriously.

I have no official diagnosis, but many symptoms that resolved on the gluten free diet. In the end, I think a proper diagnosis at the onset goes far in so many ways.

 In my case, I went gluten free for my baby's sake: I was nursing a baby with IgG/ enteropathy to gluten grains. In tandem, I had been experiencing major and bizarre onset of symptoms. Gluten free resulted in shocking reversal and then I clued in. My physician told me my gluten free status would not affect blood tests, but I'm certain it did. So, she would not refer me on. Since then, I have struggled with my non-diagnosis on several levels:

1) I have no leverage or pathway for further screening and proper micronutrient assessment despite ongoing, chronic fatigue. 

2) I am stuck interpreting my flare ups on my own, such as: is this reaction the result of a glutening, or do I have IBD or something else going on? why am I so completely exhausted?

2) I have no credibility or leverage for my children's assessment and am now getting obsessive about requesting a panel for my five year old (different doc). I worry about getting a false negative and then having the door shut permanently since I can't claim celiac disease Dx in the family.

3) I struggle with the psychology of requesting gluten free at restaurants without feeling I have legitimate and a proven reason to be picky

4) I struggle with telling my story to extended family and friends: Yes, I'm certain I need to be 100% gluten free (including crumbs), really it is not "for fun".

5) I hate hearing alternate explanations from others: You are tired b/c you are a mother. / You need a good night's sleep. / You are sick often b/c you have bad luck./ Maybe it is stress./ Maybe your enamel didn't form because of antibiotics./Kids get upset tummies.

 

Do others feel similar psychological struggles?

 

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Yes....and I was diagnosed with all markers.

 

I most especially hate your number five which played a very large part in it taking 43 years and completely destroyed health to finally find celiac disease was an issue for my entire family.

 

Pregnancy is one of the common triggers for celiac disease.

 

As for testing your child.  Are they currently eating gluten?  If so, I would simply tell their doctor they need to be tested every three years based on your history....more frequently if symptoms arise.

 

While gene testing is not perfect...these cases are often aided by having them run.

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Pregnancy is one of the common triggers for celiac disease.

 

I didn't recognize it all the time but looking back my first pregnancy is when my symptoms started....that was 6 years ago :(

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One member here's mother had Celiac Disease with severe consequences and when symptoms arose she self diagnosed and tells folks she has been diagnosed with Celiac Disease -- she simply doesn't say by whom or how she was diagnosed.  Given the situation in my own family - I found this brilliant.

 

 

Not sure if you're referring to me and my mom - but this is exactly the case with my mom.  Her brother has Celiac - diagnosed 15 years ago.  And I was just diagnosed 6 months ago.  Given her symptoms, there's simply no way she doesn't have it.

 

But if you start to explain how you know you have it, but you don't have an "official" diagnosis, but here's the reasons why you couldn't tolerate getting an official diagnosis... but you know you have it...  Then people who don't understand the disease start to think you're crazy.

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I hesitate to say I'm actually celiac, what I usually revert to saying is that I'm severely intolerant to gluten and wound up in the hospital after just 10 days of trying to eat it to get a celiac DX. I explain about my neurological complications and TIA that I had. And many people remember the severe systemic skin rash I had during my first pregnancy that I eventually resolved by cutting gluten.

 

I do struggle with psychological issues as a result of my lack of DX and I wish that I had one. But I can't risk getting disabled or dead to get one--so I'm stuck where I'm at, until medical science comes up with a better DX option that doesn't involve hospitalization or permanent disability.

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I didn't recognize it all the time but looking back my first pregnancy is when my symptoms started....that was 6 years ago :(

 

Yup! When pregnant with my now 7 year old, I got a serious systemic skin rash, that I eventually traced down to gluten. 

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I really  don't blame you. Altho I try and tell others to get tested. But like stated above , If I wasn't already DX'd I am not sure I could go on a gluten diet. Altho I do worry about kids. I know my daughters  oldest 4 , has got problems. In order for the school to treat it like a health problem, she needs a DX for him. Her Dr. Doesn't believe he has a problem. So she just put him on a gluten-free diet. So I worry when he starts school. I would push for a DX. 

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As long as you take the gluten-free diet seriously, I say call yourself whatever you want. No one knows your situation better than you do. Most people don't need the extra information of how you get diagnosed, anyway.

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Not sure if you're referring to me and my mom - but this is exactly the case with my mom.  Her brother has Celiac - diagnosed 15 years ago.  And I was just diagnosed 6 months ago.  Given her symptoms, there's simply no way she doesn't have it.

 

But if you start to explain how you know you have it, but you don't have an "official" diagnosis, but here's the reasons why you couldn't tolerate getting an official diagnosis... but you know you have it...  Then people who don't understand the disease start to think you're crazy.

 

Nope...you were dx'd by blood and biopsy if I remember correctly.  I was speaking of a member without official diagnosis that has no doubt that she has Celiac Disease based on her mother's celiac and her own removal of gluten and symptom resolution.  She does not want or need an official diagnosis.

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Nope...you were dx'd by blood and biopsy if I remember correctly.  I was speaking of a member without official diagnosis that has no doubt that she has Celiac Disease based on her mother's celiac and her own removal of gluten and symptom resolution.  She does not want or need an official diagnosis.

 

Ah... yes - I have an official diagnosis.  My mother however does not.  But she tells people she has Celiac - they don't need to know that it was self-diagnosed.

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Ah... yes - I have an official diagnosis.  My mother however does not.  But she tells people she has Celiac - they don't need to know that it was self-diagnosed.

 

Yep...it does work both ways and really is no one's business.  Especially considering the less than stellar experiences of some folks trying to obtain "official" diagnosis :)

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I have Celiac Disease.

My mother has it, my only sister has it, an aunt and uncle on my mom's side and another aunt and uncle on my dad's side has it.

No, I have never been officially diagnosed. Blood tests all came back negative, but then again so did my sister's whose Celiac was confirmed with biopsy. 5 years ago I decided to try gluten free for a few weeks to see if I'd feel better and I never turned back. There has never been a doubt in my mind that I have Celiac, and I have always considered myself as having it. There is no way I will ever do a gluten challenge. My doctors have been on board with this.

 

I say I have the disease, and if people ask me how I know, then I tell them about my self-diagnosis and family history. I suppose I could get genetic testing done to be sure, but why bother.

To me, the difference between Celiac Disease and Non-Celiac Gluten Intolerance is only a technicality and both must be 100% gluten-free no matter what.

 

So, if you feel like there's enough evidence that you have Celiac, then I see no reason not to say that you do.
(I am curious whether your family members have been diagnosed or not? If not they should get tested if possible, as well as the rest of your immediate family to see if anyone else might have it and not know.)

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Yep...it does work both ways and really is no one's business.  Especially considering the less than stellar experiences of some folks trying to obtain "official" diagnosis :)

 

Exactly! Some people don't realize that getting diagnosed with celiac is no small feat in today's world if you don't have classical symptoms and if you traced your symptoms to gluten and cut it out before you knew that you were supposed to keep eating it.

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...

3) I struggle with the psychology of requesting gluten free at restaurants without feeling I have legitimate and a proven reason to be picky

4) I struggle with telling my story to extended family and friends: Yes, I'm certain I need to be 100% gluten free (including crumbs), really it is not "for fun".

5) I hate hearing alternate explanations from others: You are tired b/c you are a mother. / You need a good night's sleep. / You are sick often b/c you have bad luck./ Maybe it is stress./ Maybe your enamel didn't form because of antibiotics./Kids get upset tummies.

 

Do others feel similar psychological struggles?

Hi,

 

Ref #3:  It's not being picky to want to maintain your health.  Everyone (who isn't suicidal) wants to maintain their health.  That's why there are so many vitamin supplements and doctor programs on TV etc.  And other kinds of diets also.  So all those people you are concerned may not understand are prolly just as concerned about their own health as you are about yours.  If they would admit it is another thing.  There are many more people following the gluten-free diet these days than are diagnosed with celiac disease.  And they choose to do that for various reasons, but mostly because they think it will improve their health.  Gluten-free is one of the most popular diet trends ever.  If you aren't gluten-free these days, u r square daddy-o! :D

 

You have every right to protect your own health, and also a responsibility to do so.  The gluten-free diet is a medical diet for people whose bodies react to gluten in some negative way.  About 1/3 of Americans have at least one of the genes for celiac disease, so you are not in rare company there.  There are prolly many more people running around with NCGI than have celiac disease.  And many don't know it.  They used to say 90% of celiacs are undiagnosed.  Not sure what the number is now but it's prolly not a lot better.  Doctors haven't been leading the way on identifying and treating this disease.  It is the patients themselves that are taking the lead.

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I am the member Lisa is talking about. Mom was diagnosed by blood testing and biopsy. I had the symptoms. I went gluten-free and my symptoms resolved. Even my doctor agrees that I don't need to be tested. If my "self diagnosis" is good enough for my doctor, it is good enough for me.

 

And it's true that when talking to waiters or others who I don't know well, I will say things like, "I've been diagnosed with celiac disease so I can no longer eat gluten." I say it that way so people who might otherwise feed me gluten will take it seriously. My friends who know the whole story are like my doctor. They see the change in me and they KNOW gluten makes me ill.

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They used to say 90% of celiacs are undiagnosed.  Not sure what the number is now but it's prolly not a lot better.  Doctors haven't been leading the way on identifying and treating this disease.  It is the patients themselves that are taking the lead.

 

Latest numbers I saw from UoC was 85% of celiacs remain undiagnosed and that doesn't begin to touch on the numbers of those estimated to have NCGS.

 

Paul is spot on....our doctors have some catching up to do!

 

And, yes Bartie is the member I thinking of....glad the description was fairly accurate ;)

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How do they know what percentage are undiagnosed if they never get diagnosed?  :unsure:

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How do they know what percentage are undiagnosed if they never get diagnosed?  :unsure:

 

The estimates are produced by the research of the leading celiac centers worldwide.

 

Current numbers are estimated to be:

 

1% of population is estimated to have Celiac.  The numbers vary only slightly between countries with some European countries reporting slightly higher estimates.

 

The numbers for NCGS have risen sharply as understanding, awareness and research of this condition increases.  Current estimates are 6 to 10% of people have some level of gluten intolerance.

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Here's my take on it:

 

I am diagnosed via blood work, endoscopy, and positive response to the diet. One of my family members is self-diagnosed and just tells everyone that she has Celiac. We have all of the same symptoms, and we can trace symptoms and complications back through several generations of our family. She didn't have the best health insurance at the time, so she decided to just go on the diet 100%. And she's feeling much better now. Unfortunately, no other members of our family are willing to get tested or try the diet. 

 

The only time when I have a problem with the concept of being self diagnosed (and this happens a lot in my experience) is when I meet someone who is self diagnosed but readily cheats or is just gluten-lite. Those people spread the wrong information and make the people who do have a serious problem look crazy.

 

However, getting an official diagnosis can be difficult, and there are lots of people on this board who couldn't handle the gluten challenge. So I say that as long as you're 100% gluten-free and take the diet seriously, it is not my place to judge. You make a positive change in your life and you're feeling better. That's what matters.  :)  

 

And if you need to say that you have Celiac in order to get people to take you seriously - go ahead! I sometimes tell restaurants that I am super sensitive and will start vomiting if I digest gluten and they for sure take me seriously then. They don't want other customers seeing someone throw up right after eating one of their meals, lol. Luckily I live in New York (which is gluten free mecca) and I have found a lot of restaurants that take Celiac VERY VERY seriously. 

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I cannot imagine anyone that doesn't need to eat this way, doing so.  So, however we come to be diagnosed, by ourselves or a doctor, yeah!  Call it what it is.  I still am not sure if it is Celiac or Intolerance, but I was told if I went back to eating Gluten I would test positive so, that tells me to stay away from it!  And as far as the rest of the world is concerned I am Celiac so they will take it seriously.  I am getting tired of the look of worry on my husbands face when I accidentally eat something that makes me sick.  Its so bad he has started asking the questions if we are out somewhere.  

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I think that this is a common scenario.  You find out about celiac disease and realize, that is probably why you have been having uncontrollable diarrhea for the past 15 years that you doctor said was IBS.  You go to the doctor with this information and he won't test you for celiac disease.  Your health insurance won't pay for you to go to another doctor.  You try the gluten-free diet.  You feel so much better.  You find out that it wasn't just the uncontrollable diarrhea caused by the gluten but so many other things.  Your insurance changes so that you can finally go to another doctor and you find out that you would have to start eating gluten again to test accurately.  Your gastroenterologist recommends against it since you had been so sick.  Other doctors and people around you treat you like you are some sort of nutcase on a fad diet.  Sign.

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In the beginning I really wanted to know if I was Celiac or not for my own closure. I admit it bothers me somewhat not to have a definitive answer, mainly because I like to have answers! I went gluten free before the issue of testing came up so I will never know for sure one way or the other. Now I consider myself Gluten Intolerant because it sounds less serious to me and that makes me feel better. The way I take care of myself isn't going to change regardless. I know what I am dealing with is serious and once I'm well, I do not want to go backward. No one else in my family has any dietary issues of any kind. I'm always the sensitive one in the family in every way. I have finally become ok with that now that I'm in my late 40's. I've learned to appreciate my sensitivities and take the good with the bad. Yes it's hard to be more sensitive than most of the world, but I'm also a redhead, and an artist, and that's pretty cool. Every cloud has a silver lining, as they say. I've learned that although there will always be insensitive people to avoid, there are many others who are sensitive too, and then others who are not as sensitive but appreciate sensitivity very much. The only way to find the good people is to put the truth out there and see what comes back.

 

I guess I'm getting off the topic here a bit, sorry about that, but it is hard to be different and face the people who just don't get what we go through. Getting back to the point, I think of myself as gluten intolerant but when it comes time for me to eat out at a restaurant I'll be calling myself Celiac all the way, so they will take me seriously!!! Whatever we call it is a very serious illness either way, our symptoms tell us that. It will be a big help when more is learned about it. I think we are unlucky in that all this is a relatively new disease in terms of how many of us there are with the problem now and how little is known about it. Celiac disease has been around for a very long time, but not in such high numbers. Hopefully the facts will get clearer sooner rather than later.

 

I just really feel for those of you who have children who have this disease. That must be sooooo hard for you and for them. :(

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