What To Call Myself

[Joanne11]

Does anyone else feel weird calling themselves a celiac if they have not been officialy diagnosed by a doctor? I have a hard time trying to explain what I have to people, maybe it is because I don't really know for sure if I have celiac or just gluten intolerance, but sometimes it is easier to say I have celiac than to dive into the whole explanation of celiac vs gluten intolerance and why I don't know since I had possative blood work but negative biposy, and with the gi specialist I went to you don't have celiac if you have a negative biopsy. Just wondering if anyone feels the same way I do. Can anyone who has been officially diagnosed let me know how you feel? Do you think I am calling myself something I am not, should I just say I have gluten intolerance and not try to explain so much to people?

Sorry for all the questions, I guess I am feeling a little frustrated with the whole thing today

[Lisa]

  Joanne11 said:

Does anyone else feel weird calling themselves a celiac if they have not been officialy diagnosed by a doctor? I have a hard time trying to explain what I have to people, maybe it is because I don't really know for sure if I have celiac or just gluten intolerance, but sometimes it is easier to say I have celiac than to dive into the whole explanation of celiac vs gluten intolerance and why I don't know since I had possative blood work but negative biposy, and with the gi specialist I went to you don't have celiac if you have a negative biopsy. Just wondering if anyone feels the same way I do. Can anyone who has been officially diagnosed let me know how you feel? Do you think I am calling myself something I am not, should I just say I have gluten intolerance and not try to explain so much to people?

Sorry for all the questions, I guess I am feeling a little frustrated with the whole thing today

Joanne:

You do have Celiac and you can call your doctor an (*), or very uninformed.. Your positive bloodwork is enough to confirm Celiac. Bioipsy's can rule Celiac in, but can not rule it out, and it can determine the amount of damage.

It never fails to suprize me that lack of correct information that gets handed out as fact.

Welcome the the world of Celiac. Looking forward to hearing from you more.

[surrender]

I've been wanting to ask this same question. Our family's test results were antibody levels of (normal is under 10): Dad 290, Mom 17, Child #1 is 42, Child #2 is 26, Child #3 is 8. Because these were the stool tests through Enterolab, we don't have positive blood or biopsies. So what are we? And what about others with full blown celiac who get their antibodies down to normal...does that mean they are then gluten sensitive? This is such a confusing issue for me. In the end, we're on the diet for life. Should I just say we have celiac?

[miles2go]

Hi Joanne,

I went through that uncomfortable stage too, when I didn't know what to call myself, since I was only diagnosed with wheat and other allergies by skin and blood tests and couldn't be tested other than genetically because I'd been gluten-light for around eight years. For a while I contemplated doing Enterolab, but the diet had proven itself to me by that time, so I decided to save money instead. I have seen a number of wonderful doctors since that non-, inclusive-, perhaps conclusive dx and when I go to see medical health care professionals now, I tell them that I don't eat gluten. Most of them come back with a response that works the word 'celiac' into the conversation and so I let it be. When talking to friends and others, I can be a little more hedging about it, but if I don't want to go into it at length, I just use whatever I think will get me the least amount of questions. Labels are such silly things anyway... I like Deborah Madison's credo in her Vegetarian Cooking For Everyone cookbook, "The 1,400 recipes in this book are those that I like to cook. If you're a committed vegetarian, you can prepare every recipe in this book. If you are a vegan, you can cook most of them. If you don't attach a title to your eating style, you can cook everything in this book and serve it with meat, fish, or fowl." Like her, I don't attach a title to my eating style, but in my 'cookbook', there just happens to be no gluten.

Margaret

[Nantzie]

I struggled with this for a long time because I didn't want to call myself something I'm not. I didn't want to offend anyone who really did have a positive biopsy.

But as I have spent more and more time on the board, I've seen how small the difference is between someone with biopsy-positive celiac and gluten intolerance as far as how they have to live their lives. There are over 200 symptoms of celiac, and I think the villi damage is just one of them, and the only one that they know how to measure. So it becomes the gold standard for diagnosis.

People with a positive biopsy I'm sure have an additional level of pain and issues with their intestines that I don't have to experience. But at the same time, my particular gluten intolerance gene predisposes me to neurological damage, which the people who are biopsy positive and have the DQ2 or DQ8 genes don't have to experience. When I get glutened, I get moderate GI issues, but I can also barely walk and my speech starts slurring.

It's really a case of six of one and half a dozen of the other. Either way you're in the same boat. I think at some point there will be something like different types of celiac (just like there are different types of diabetes).

That's the reason this board is so WONDERFUL. Nobody here is ever going to tell you that you don't have just as much right to be here as anyone else. In fact, several of the more active and longtime veteran members don't have a diagnosis.

I did a poll not too long ago asking about this, because I felt like I was seeing more non-diagnosis people than diagnosis people. Of the people who voted, 60% did not have an official diagnosis. Makes you feel a lot more at home.

Now, I call myself celiac to family and friends (most of whom don't really get it). I also call myself celiac at restaurants. Here on the board, I avoid the word celiac, but I don't preface my advice or information by saying I'm only gluten intolerant. The only time I really make a specification is when we're discussing the difference between celiac and gluten intolerance, or if someone has negative tests and thinks that that means they shouldn't try the diet.

I also HATE the phrase gluten intolerant. It makes it sound like lactose intolerance - like all it's going to do is give me D for a couple hours. We need to think of a better phrase for it. If there was a better, more accurate phrase I'd use it. Because even though I've gotten more used to it over time, I'm not completely comfortable saying I'm celiac either.

Sometimes if someone who knows a little about celiac asks I tell them I have a "genetic variant of celiac disease". It makes it sound official and mysterious.

In restaurants, all they need to know is how to cook my food. The additional information just confuses things. Sometimes it's the first time they've ever heard of it, so the more to the point you are, the better luck you're going to have.

Hope that helps.

Nancy

[Lisa]

Would positive blood work not indicate Celiac for Joanne? Can someone support my thoughts, regardless as to what she was told by her GI, being that her biopsy was not confirmed and therefore she does not have Celiac.

I do have a positive diagnosis through endoscopy and biopsy and I have no issue what so ever, if those that are not diagnosed call themselves Celiac. I do have an issue, if someone called themselves Celiac for simply diet control for weight loss as indicated in a recent article that was discussed here.

Whatever, however anyone needs to get the food that they need in order to keep themselves healthy, free of symptoms and pain, or to explain a complicated issue in simple terms, I see no issue.

I feel we are just one big family with similar concerns.

[Nantzie]

Oh absolutely Lisa! With a positive blood test she should have been diagnosed as celiac in the first place (a well-informed doctor would have done that). I've seen a lot of people here who have an official diagnosis based on blood alone.

So, yes. I believe that Joanne has actually full-fledged celiac. Not gluten intolerance.

Nancy

[miles2go]

  Momma Goose said:

Would positive blood work not indicate Celiac for Joanne? Can someone support my thoughts, regardless as to what she was told by her GI, being that her biopsy was not confirmed and therefore she does not have Celiac.

I do have a positive diagnosis through endoscopy and biopsy and I have no issue what so ever, if those that are not diagnosed call themselves Celiac. I do have an issue, if someone called themselves Celiac for simply diet control for weight loss as indicated in a recent article that was discussed here.

Whatever, however anyone needs to get the food that they need in order to keep themselves healthy, free of symptoms and pain, or to explain a complicated issue in simple terms, I see no issue.

I feel we are just one big family with similar concerns.

I appreciate your asking this, as I've kind of wondered after reading the board for a while what actually constitutes a celiac (and this may be tangential to what you're asking, Lisa). Is a celiac someone who was born that way, or someone who has had some kind of trauma and then had symptoms? Or is it some kind of standard that (perhaps not everyone) can agree on?

I know I'm fine with where I am concerning a diagnosis, but that may not work for all.

[miles2go]

  Nantzie said:

Oh absolutely Lisa! With a positive blood test she should have been diagnosed as celiac in the first place (a well-informed doctor would have done that). I've seen a lot of people here who have an official diagnosis based on blood alone.

So, yes. I believe that Joanne has actually full-fledged celiac. Not gluten intolerance.

Nancy

I am wondering what Joanne's blood test was? I've been off-line for a few days, so may have missed it.

And....what is the actual difference between gluten intolerance and celiac? Shades of JerryK.

[Nancym]

How about Gluteniac? Cross between Gluten Sensitive, Celiac and Maniac?

[Lisa]

  Nantzie said:

Oh absolutely Lisa! With a positive blood test she should have been diagnosed as celiac in the first place (a well-informed doctor would have done that). I've seen a lot of people here who have an official diagnosis based on blood alone.

So, yes. I believe that Joanne has actually full-fledged celiac. Not gluten intolerance.

Nancy

Yes, I agree. Joanne welcome to the club. You have Celiac Disease. And that's a good thing.

[Lisa]

  Nancym said:

How about Gluteniac? Cross between Gluten Sensitive, Celiac and Maniac?

Perfect!!!

[miles2go]

  Momma Goose said:

Perfect!!!

Hey, hey, that's gluteniah, if you's a maineah.

[Tim-n-VA]

Interestingly, I am biopsy diagnosed but I don't describe myself as a "Celiac". I have celiac disease. I don't know why I make that distinction when I have no hesitation to say I am a diabetic.

[Lisa]

  Tim-n-VA said:

Interestingly, I am biopsy diagnosed but I don't describe myself as a "Celiac". I have celiac disease. I don't know why I make that distinction when I have no hesitation to say I am a diabetic.

I too, refer to myself as a person with Celiac Disease, rather a "Celiac" because that sounds odd to me. I also refer to myself a being raised in the Catholic faith but I am not a "Catholic". Neither one defines me as the person that I am, rather a culmination of many things.

[Joanne11]

  miles2go said:

I am wondering what Joanne's blood test was? I've been off-line for a few days, so may have missed it.

And....what is the actual difference between gluten intolerance and celiac? Shades of JerryK.

Hello, thanks for all your replies.

My blood test was antigliadan IgG and IgA possative on a scale where <10 was normal mine were in the 40's. I am under the impresion that tTG-IgA is a better indicator for celiac but also that it is directly linked to intestional damage, if your intestines are showing damage then your tTG levels are elevated, I think mine was a 3 or a 4 <5 is normal on my lab's scale. I did not have a total serum IgA done though so I don't know if the tTG was a false negative or not.

[JNBunnie1]

See, I had no positive tests at all. They did an intestinal biopsy, it was 'negative' (I'd only been actively sick for six months, so duh) and they didn't do any of the blood tests. I actually learned about Celiac disease by reading Dr. Jordan Rubin's book the Maker's Diet. Which had a lot of unrelated stuff, but it had a little about celiac, so I tried it and I got better. It actually took almost a year for me to return to my standard mental capacity, and since then I've acttually gotten smarter than I was before. Has that happened to anyone else?

[corinne]

I have collagenous colitis which can be treated by a gluten-free diet. It's too hard to explain to most people so I usually just say that eating some foods makes me sick, to someone who's interested I'll explain that I can't eat gluten and if they're interested I'll explain some more what this type of colitis is (no it's not Crohn's ...). Probably same thing for someone with celiac disease. Different explanations for different people. Occasionally I get asked by those with celiac disease why I'm on the diet and most accept that there are other diseases caused by gluten. So I guess I don't call myself anything.

[mamabear]

The official medical line of celiac disease is the gold standard biopsy proven intestinal damage of lymphocytic infiltration and villous blunting. There are some researchers who have recently published that a positive tTG plus anemia,weight loss or diarrhea is celiac disease .....with or without a biopsy. I have searched the PubMed sites trying to find this reference again( I found it in a medical journal last week, and now I can't put my hands on it)...I'll keep looking until I find it. Also a recent study by some Irish researchers who define gluten sensitivity as positive AGA's and celiac disease as positive tTG or EMA antibodies. At any rate, I think it shows an evolution of the understanding of this disease complex. It is not so cut and dried IMO......

I agree with Momma Goose that it doesn't really matter how you perceive your condition... as long as your docs take you seriously! and check for and monitor for complications and co-existing medical conditions.

[sfm]

  Joanne11 said:

Does anyone else feel weird calling themselves a celiac if they have not been officialy diagnosed by a doctor? I have a hard time trying to explain what I have to people, maybe it is because I don't really know for sure if I have celiac or just gluten intolerance, but sometimes it is easier to say I have celiac than to dive into the whole explanation of celiac vs gluten intolerance and why I don't know since I had possative blood work but negative biposy, and with the gi specialist I went to you don't have celiac if you have a negative biopsy. Just wondering if anyone feels the same way I do. Can anyone who has been officially diagnosed let me know how you feel? Do you think I am calling myself something I am not, should I just say I have gluten intolerance and not try to explain so much to people?

Sorry for all the questions, I guess I am feeling a little frustrated with the whole thing today

I say I am gluten intolerant. I know it's pretty much the same as celiac, but people either seem to understand, or I just give them a basic explanation (I get very sick from eating anything with wheat, barley, rye or oats), and they seem to get it. If you had positive bloodwork for celiac, then the biopsy could have just missed the damage, no? So just because your diagnosis isn't 'official', doesn't mean you are not a celiac. My own blood work was inconclusive, but I didn't have the tests done until I was gluten free for several months.

A lot of people don't know what celiac disease means, anyway, so to me it really doesn't matter much.

Sheryll

[sfm]

  Nancym said:

How about Gluteniac? Cross between Gluten Sensitive, Celiac and Maniac?

Good one!

[Helena]

Joanne, I agree---positive blood tests . .. or even simply a positive dietary response to the gluten-free diet are enough to claim the 'celiac' label.

As for me--I never did go through with the biopsy, but I had a positive tTG test when on a nearly gluten-free diet and a more positive tTG + positive antigliadin test after a gluten challenge. My doctor says that it is very likely that I am celiac and that I should assume that I am especially since I react to gluten!

[Joanne11]

That what I am thinking too, I felt sooo much better after just a few days of gluten free. It has been over a month now and my family even notices a difference in me over the phone. The combination of some posative blood work and a posative dietary response is enough to convince me that I have celiac, but I just wanted to get some different opintions . In the long run I know it does not matter gluten intolerant or celiac as long as I feel better on the diet. I feel that if I had continued to eat gluten and was biposied 5 years from now there would probably be intestional damage because my symptoms were not going away. So I guess that it is better to catch it now than continue to feel ill and do more damage as the years went on, even if thet means not having a concrete diagnisis from my doctor. At least I know I am not alone in being frustrated in not haveing a specific diagnosis from any of the multiple doctors I have seen!

[Lisa]

Smart Girl

Glad to have you amounst us!

[SUZ42]

When I took my results from EnteroLab to my doctor, he said "well, I'll put it down as Celiac Sprue". And placed copies of the results in my chart. So, he took the positive results from the stool, along with the positive Celiac gene as evidence of the disease. Without doing bloodwork/biopsy, as I had been Gluten free for a few weeks by this time.

I wish all the MDs would get on the same page!!!