What Should I Call "it"

[pedro]

Hello

I have a question.

If I don't have Celiac genes, but I have all of the wonderful symptoms a Celiac person gets, What should I call "IT".

Is this Celiac?

Have a great day

[ArtGirl]

I don't have celiac genes, but do have two intolerant/sensitivity genes. So, technically, I do not Celiac (at least by current definition). So I say that I am intolerant to gluten.

I'm confident that as the research on all levels of gluten intolerance proceeds, and as more genes are identified as a genetic link and the whole range of symptoms is better understood, that it will all be lumped into the same category.

That said, most people who I would talk to would have no clue what the difference would be and most have never heard of Celiac, and some don't know what gluten is. Heck, some people don't even know that white bread has wheat in it! With the increased media coverage, maybe some of the ignorance about the gluten issue will be overcome.

If I'm dealing with a really ignorant person, I just say I have an allergy to flour and can't eat any breads or have any breading on my food. They seem to be more able to grasp an allergy than an intolerance.

[Guhlia]

I DO have Celiac, but even if I didn't, I would probably still say I did. The "disease" word is very powerful in getting people to take things seriously. I just say that I have Celiac disease which is kind of like a serious allergy to wheat, flour, and a few other things. That seems to give people the general idea without scaring them too much or making it seem to unimportant.

[Nantzie]

I'm in the same boat. I hate the term intolerant. Makes it sound like I'm completely turning my life upside down so I won't get a tummy ache.

Most of the time I say I have celiac disease. If I'm ordering in a restaurant for example. It just makes things more straightforward. Sometimes it's the first time the waiter has ever heard of it, so I don't want to complicate things. I just need safe food.

If someone I don't really know asks about it, at a party or something, I just say I've got food allergies. If they ask more, I tell more. Who knows, they may be having symptoms or know someone who does.

I've also run into a couple people who have celiac (not here) who think that people without a positive biopsy don't have any right to be part of the celiac world. So unless I'm here or know someone with celiac really well, I kind of dance around the subject. I won't say I have celiac, but I will say I was "diagnosed" a year ago, or when I found out I had "it", blah, blah, blah.

If I know someone well I'll say that I have a genetic varient of celiac, or I say I have a related gene that researchers are investigating as being another possible celiac gene. Which is true. They know they haven't found all the genes.

It's kind of hard because I'm not entirely comfortable claiming the term if I don't have a diagnosis, but really, what diagnosis you get depends on how well-informed your doctor is.

If we all went to Dr. Lewey, I'm pretty sure 99% of us would walk out of his office with a diagnosis of celiac disease because (from what I heard) he will diagnose based on dietary response alone. Then there are a couple horror stories of doctors flat out saying that they would never make a diagnosis of celiac, regardless of test results because the diet is too hard.

Really what they need to do is either rename the disease, or expand the diagnosis parameters to include dietary response, not just biopsy results. But who knows when that will happen.

However you figure out gluten is your problem, you belong here. Whatever symptoms you had before, and whatever symptoms you have after being glutened, we're all in the same boat.

Nancy

[loco-ladi]

I am new to this but I seem to have the best results when eating out (when I have to) by saying I have a food allergy DO NOT put any croutons or crackers or anything with flour near my salad ( I also go without any dressing as who knows what is in their brands they use), yes I went out with hubby today to the "best" restraunt in town and the one and only thing on the lunch menu I "felt" would be safe was a salad, so far...so good, no quick but unendingly long trips to the bathroom and I did so enjoy the look on the waitress's face when I said "food allergy" she basically got that "panic'ed look" I so love to see as maybe, just maybe they will take special care.

I also mentioned one other time after recieving my salad at another restraunt that alot of ingredients that arrived on my salad were NOT listed in the menu and lucky for them I "think" they should all be safe for me to eat....... I HATE when they do that!

[Canadian Karen]

Look at it this way: You do have Celiac. It may not be to the point that it is registering on the tests yet, but you still have it. That's the way I would look at it.....

[MySuicidalTurtle]

I think gluten intolerant sounds nice.

[VydorScope]

Why is the name of it so important? Tell everyone you have the extremely rare Pedro Disorder if you want.

With my son, I tell people he has "Lots of food allergies" and leave it at that unless they push. 99% of the time that is enough for to accept any food decisions/questions I might have with out any problems. We always bring his food when we eat out (restaurant, church, friends, etc), and never has anyone given us any problems after we say something like "he can not eat your food because he has lots of food allergies" I think most ppl are just happy THEY dont have to deal with it, and are happier letting us worry about it.

[Fiddle-Faddle]

As far as I can tell, celiac disease (as diagnosed by intestinal boipsy) is what happens when a gluten-intolerant person continues to eat gluten, regardless of genetic predisposition.

Those genes cannot guarantee that you will develop celiac; lacking them does not guarantee that you will never get celiac, as evidenced by people here on this board who have biopsy-diagnosed celiac disease, yet lack the genes that would supposedly predispose them.

There are other factors, such as lyme disease and mercury toxicity, that seem to be able to cause irreversable gluten sensitivity; if not caught early, obviously that could progress to full-blown villi damage and a diagnosis of celiac disease.

I do agree that "gluten intolerance" and "gluten sensitivity" do not sound like legitimate health problems to the uneducated. I think you should feel free to call what you have celiac disease if you are comfortable with that.

Really, gluten causes so many discomforts, you ought to at least have the comfort of choosing what to call it, regardless of others' opinions!

[Fiddle-Faddle]

Why is the name of it so important? Tell everyone you have the extremely rare Pedro Disorder if you want.

:lol:

[Lisa]

[little d]

HI

I have been tested everything negative, but i have alot of symptoms I even felt that emails that i was getting from my local Glutne intorlant Group Pres. here in N. Central Texas that I felt guilty to be getting from here that I asked her to stop so someone else deserving with I guess the Label of celiac disease. I am not as sick as everybody else here, I guess that I don't understand what sick means. Is it having the D all the time at least 3 times a week along with C stomach burning, noisey gas from my stomach, gassy, nausea, heartburn, I get really hungry between meals, lots of cravings for my fav Brownies that really does me in, very tired after meals I want to sleep all the time 8hrs is sometimes not enough when I know it has gluten in it to much, if I do vomit which is rare, it only happens when I eat raw tomatos with the seeds so I don't eat those. I would like to contiue being tested even if it was trough one of the privete labs, but of course $ is a big road block for me. I don't think that Insurance will cover outside labs. When my Gastro told me of the last test being normal they offered to give me a referal to another, I politly declined because of I know what is wrong with me, and I don't want to spend any more to have someone smarter than me telling me that I could IBS when i know that I have too many symptoms for IBS and we can control my body with Meds well I don't want to if I can do it with healthy foods well I can do that and Natural Vitimins, I know I may have to go down that path because I'm proned to brake my foot and I am not getting enough calcium and other vits in my to get stronger. Ok I know that I just ramble on I'm sorry for that. Not knowing what if anything is wrong with me bothers me a little. People really don't want understand, my husband has been supported of my change he does'nt understand what causes it I have told him. When my GI told me the results I started eating reg food again and gained all my weight back, felt horrible all the time. And even my husband encouraged me to start the gluten-free again so I can feel better, dinner time he ate gluten-free as well not by choice I have to trash boxes so he won't know, you know he can tell by the taste.

Thanks Donna

[Nantzie]

Really, gluten causes so many discomforts, you ought to at least have the comfort of choosing what to call it, regardless of others' opinions!

I like that logic.

Nancy

[Nantzie]

HI

I have been tested everything negative, but i have alot of symptoms I even felt that emails that i was getting from my local Glutne intorlant Group Pres. here in N. Central Texas that I felt guilty to be getting from here that I asked her to stop so someone else deserving with I guess the Label of celiac disease. I am not as sick as everybody else here, I guess that I don't understand what sick means. Is it having the D all the time at least 3 times a week along with C stomach burning, noisey gas from my stomach, gassy, nausea, heartburn, I get really hungry between meals, lots of cravings for my fav Brownies that really does me in, very tired after meals I want to sleep all the time 8hrs is sometimes not enough when I know it has gluten in it to much, if I do vomit which is rare, it only happens when I eat raw tomatos with the seeds so I don't eat those. I would like to contiue being tested even if it was trough one of the privete labs, but of course $ is a big road block for me. I don't think that Insurance will cover outside labs. When my Gastro told me of the last test being normal they offered to give me a referal to another, I politly declined because of I know what is wrong with me, and I don't want to spend any more to have someone smarter than me telling me that I could IBS when i know that I have too many symptoms for IBS and we can control my body with Meds well I don't want to if I can do it with healthy foods well I can do that and Natural Vitimins, I know I may have to go down that path because I'm proned to brake my foot and I am not getting enough calcium and other vits in my to get stronger. Ok I know that I just ramble on I'm sorry for that. Not knowing what if anything is wrong with me bothers me a little. People really don't want understand, my husband has been supported of my change he does'nt understand what causes it I have told him. When my GI told me the results I started eating reg food again and gained all my weight back, felt horrible all the time. And even my husband encouraged me to start the gluten-free again so I can feel better, dinner time he ate gluten-free as well not by choice I have to trash boxes so he won't know, you know he can tell by the taste.

Thanks Donna

Donna -

I agree with your husband. Go back on the gluten-free diet. Your symptoms all sound like celiac. You totally fit in here. So many of us fall into the gray area, so don't worry about being self-diagnosed. It's very common around here. I had negative blood tests and negative biopsy, but going on the gluten-free diet changed my life completely.

I really suggest the Enterolab tests if you want to pursue further testing. You don't have to order the whole panel. You can do JUST the gluten test for $99. You don't even have to be eating gluten for it. www.enterolab.com

Since your husband is being so supportive and is willing to do the diet with you, just go for it. Don't cook special for him, you're probably making yourself sick from cooking gluten.

Even if it doesn't end up being gluten, there are so many other foods that cause serious problems. The people here are also very knowledgeable about other food intolerances.

So whether it is gluten, or it's not gluten, this is a good place to come while you figure it out.

Welcome to the board.

Nancy

[little d]

Thank you Nancy That makes me feel good

[pedro]

I like it , I like it, I like it.

This is very original

[HannahHannah]

Remember guys, there *is* such a thing as 'non-coeliac gluten intolerance' - google it!

[dally099]

i prefer to tell people that im a super model and as a result only eat coffee and raw lettuce

[sickofit]

Hello

I have a question.

If I don't have Celiac genes, but I have all of the wonderful symptoms a Celiac person gets, What should I call "IT".

Is this Celiac?

Have a great day

The book Dangerous Grains says Celiac sprue and gluten sensivity are different, but the symtoms are the same. So you have gluten sensitivity, rather than being a celiac. I don't know which one I am, just know I can't eat it!

[sickofit]

i prefer to tell people that im a super model and as a result only eat coffee and raw lettuce

That is wonderful! We need a sense of humor with this, don't we?

[Fiddle-Faddle]

The book Dangerous Grains says Celiac sprue and gluten sensivity are different, but the symtoms are the same. So you have gluten sensitivity, rather than being a celiac. I don't know which one I am, just know I can't eat it!

The only difference is, celiac is officially diagnosed by having blunted or damaged villi, as seen via biopsy. If you are gluten sensitive or gluten intolerant and continue to eat gluten, the result is blunted or damaged villi. At some point, the medical community will wake up and realize that gluten sensitivity/intolerance is just early stage celiac.

[Nancym]

You can be a celiac without the 2 genes they know about. It's rare, but it does happen. So you have my permission to call yourself a celiac. I do it too, even though I wasn't diagnosed by biopsy.