What Do I Call Myself?

[SheaLynne]

This feels like confession time LOL. I am admitting self-diagnosis of some kind of gluten sensitivity. I will never willingly touch gluten to my mouth again. <vows with right hand held up>

Here's my history...

No big illnesses or anything else growing up. Lifelong anosmia (lack of sense of smell) that the docs can tell me nothing about.

During college years, began to have "episodes" of "D" in which I felt I might die in the bathroom (probably not really that bad if I knew what nearly dying really felt like, but...pretty bad!). These come in several waves and then are over, leaving me with no bowel movements for days.

During my last semester of college in 1992, I went to the student health center and described my issues, and they actually said "Some people have problems with wheat, that could be it." And they sent me home with a kit to do a stool sample. I returned it, but never went back in for any kind of results before my semester was over, and then I wasn't a student and couldn't return to the same doctor. Honestly, my only thought at the mention of wheat being an issue was the thought of "What do you eat if you can't have wheat??" I'm such a "bread person" that I think I mentally blocked that out as a possibility.

So, then the "IBS" dx became the catch phrase, so I "self-diagnosed" myself with IBS and tried to pinpoint what could be a trigger. I thought it was stress or alot of greasy/fatty foods, then I thought it was because I was drinking alot of liquids with my food when they happened (when in social settings where I was trying not to eat too much by holding a glass of water the whole time, or when eating at Sonic and drinking a large slush).

As the years went on there were other "little" things that seemed utterly unconnected. We had a bit of trouble getting pregnant. Then our first child had a critical heart defect. It took nearly 2 years to get pregnant again. I had severe nausea, etc. with my pregnancies. The episodes continued. Between pregnancies, I began having random muscle twitching. My family doc. dxed "benign fasciculations" and said it was due to stress. Stool began to have floating white stuff and at times undigested food in it.

Joint pain has been an issue for several years (including left hip and lower left ab pain that I could never tell for sure what was causing). PMS symptoms have escalated to an unacceptable level. Anger and outbursts, tears and crying that would inevitably tear my family apart if continued. Something had to change! So I started researching and learned that food sensitivities can affect you this much.

I cannot afford any type of testing, especially if it is likely to give me a false negative, so I tried a gluten-free, dairy-free diet and got immediate results. Within two days I learned what a calm stomach feels like. I didn't even know what turmoil my digestive system was in! Or how much gas I had! Wow. Who knew your body would actually have a normal BM every morning like clockwork?? Within a few months the twitching subsided (though I do have bits here and there, which make me wonder about unintentional glutenings?). Joint pain is gone. Left ab pain gone. I *think* I may be beginning to pick up some smells, so I am hopeful that perhaps my anosmia was related to gluten.

Recently I decided to gluten challenge with wheat communion bread at church (I have been bringing my own gluten-free piece, but I forgot it that week and decided to make that my challenge so I could see what symptoms I can tie to gluten)--I had gas all afternoon, and "D" the next morning. Joint pain back. Tired. I also think I had a problem with Rice Dream rice milk. I switched to Rice Dream and I spent a week with "D" that I thought was a bug others in my family had a bit of, but when I looked it up and found potential probs with Rice Dream, I stopped it and had no BM for 2 days...then drank it again and had "D" again. Stopped and within 2 days I am back to normal. (Drinking homemade rice milk now with no problems.)

SO....with all that said, I am certain gluten (as well as dairy and soy) is out of my life for good. But what do I call myself? A self-diagnosed celiac? Or since I am not diagnosed by biopsy, just "gluten intolerant"?

Thanks for all the info you all share. I'm reading and learning!

[Jestgar]

Why attach a label at all? Just tell people you get really sick when you eat gluten.

[cassP]

rice dream has barley or barley malt in it- which means it has gluten. I would at the very least call u gluten intolerant.

[bparravicino]

Funny what you mentioned about your lack of smell. Since I've gone gluten free, my sense of smell has improved.

[srall]

My story has many similarities to yours. Trouble getting pregnant. Nauseated the ENTIRE time, never could have a second child, muscle twitching, joint pain...just so many things. I'm also self diagnosed. If I'm in a restaurant I say I have Celiacs. Most of the time this makes no difference because most people don't know what celiac and gluten even mean. I think people understand food allergies so I use that one a lot too.

I even did the communion test a couple of weeks ago with the same results as you. How can any of this be all in our heads? (Which is what I felt for years...and I know some people still think I'm nuts)

[NorthernElf]

I call myself celiac - most people get it. Saying intolerance just doesn't seem to give it credibility - esp. since I know folks who say they are intolerant and still eat some gluten. I have zero tolerance to gluten, so I consider myself celiac.

My history - negative blood test and gluten free by the time I had the endoscope (over 3 months) and GP told gastro to look for reflux damage, not celiacs. When I asked gastro if he saw celiacs he told me he wasn't even looking for it. Most definitely not worth eating gluten to try & get positive scope...couldn't do it. Bottom line is I can't eat gluten.

[jensey]

I concur with why label...but I think celiac is probably certain, but I am no doctor. As others stated it is not really worth inviting gluten back into your diet to be able to get a positive blood test.

I am celiac, also cannot tolerate dairy derivatives, my father is the same and like you he cannot do soy either.

I have felt your pain, literally, and I am glad to hear you have discovered what triggers your digestive problems. If you want to label it maybe we can call ourselves "celiac PLUS" lol, or for you and my pops "celiac plus, plus".

I know how hard this must be for you with the limited choices you have! On the bright side the food industry is becoming more and more aware of the food allergies and the options are constantly growing. I hope options for your limitations continue to expand.

With a good support system and better health life will get better. This forum is a great place to get support and share or vent as needed. Life certainly gets better with awareness of what causes the problems and abstaining from them in your diet. Having a place where people with similar issues can completely relate and share their frustrations experiences, strength, and hope, such as this one, makes the process a more tolerable. At least that is my experience!

Good luck and good health are my wishes for you! (labeled or not!)

Jen

[firefightersgal]

I have a self-diagnosis of Celiac Disease. I had a blood test, but it was negative. However, I have the rash called Dermatitus Herpitiformus. My doctor told me, "I don't know what is wrong with you," because my blood test was negative. He wasn't very receptive to the idea that gluten was causing all of my problems: the rash, joint pain, unexplained infertility, miscarriage, and a reoccurring ulcer.

I've been gluten-free for almost four months and my rash is gone. I am hoping that my infertility will correct itself and that we are able to get pregnant again (successfully) soon. It has been a year since my miscarriage and two years of trying for baby #2.

[SheaLynne]

I've been gluten-free for almost four months and my rash is gone. I am hoping that my infertility will correct itself and that we are able to get pregnant again (successfully) soon. It has been a year since my miscarriage and two years of trying for baby #2.

Wow, firefightersgal, I hope you have a great turnaround on that, too. I'm so sorry you lost your baby.

Thank you to everyone for the responses...yes, I agree that whatever I call it, it is what it is, and my diet will not include gluten. I will probably tell most people I have celiac, but in a place like this where so many have been doctor diagnosed, I would certainly be clear that I am self-diagnosed, or by diet only.

Posting my story has definitely made me feel a part of a group who understands and cares. Thank you so much!

btw, I'm doing pretty well with the major changes to my diet. I know I have a lot to learn and sort out as I learn how sensitive I am, but overall I like feeling better and it is worth it. And I cook alot anyway, so it has just been learning to choose more whole foods and not have to "fix" everything so much, and learning to work with gluten-free flours. Social stuff is hard, and I'm still learning how to handle restaurant situations, but I'll get it all down.

Thanks!!

[SoyBoy]

SheaLynne,

Thanks for sharing this story. I'm sure everyone here can relate to your story.

I struggled with the label issue myself. I use the term "soy intolerant" on this forum because the folks here understand. In the real world, I have decided not to label myself (I have the same concerns as you). Instead, I just tell friends and family that soy products give me the S&%#s. It gets the message across, and it is a statement that I can say with confidence.

[anabananakins]

I tell people that I'm really lucky that I tested negative for celiac since it's such a serious autoimmune disease but I don't eat gluten anyway because it makes me super sick and I feel amazingly better without it. I find that by putting it that way they are happy to hear I dodged a bullet but are still concerned enough about my symptoms to be supportive of my restrictions. Of course, not challenging me doesn't mean they are all that helpful in a practical way - I'm sure we've all had people say 'oh no, that must be so hard for you!" as they spread the evil gluten crumbs from their meal all over the table but hey, at least it's sympathy.

I personally won't say that I have celiac, since I'd prefer not to overtly tell the lie (I had heaps of testing done and it was all negative, including the gene testing). But I do often say that I'm allergic to wheat since restaurants tend to think through their answers more carefully when they hear "allergic". Besides, I'd be thrilled to be called out on it because it would mean they had more idea what they were talking about than the average person does.

[GlutenFreeManna]

I am self diagnosed but I will use the term celiac or allergy depending on the situation.

If I am just in a restaurant and need to explain for food prep I will use the word allergy because I find people take that more seriously and it is easier to explain. When I have to explain to people that invite me to eat at their home or offer me food I tell them I have celiac. I consider gluten intolerance and celiac to be the same thing (meaning requirements of food prep are the same), but I think people will be more likely to take me seriously if I use the term celiac. Intolerance or sensitivy just makes it sound like I get a little sick from gluten. I want people to know my problem is a serious medical condition, not just a preference for gluten free food. Now I am in a situation where I need to go to see a doctor about another medical condition that may require surgery and I'm torn about what to say, but I think I will explain I consider myself a self-diagnosed celiac and that having any gluten while in the hospital will make me very sick and hinder my recovery. I'm hoping that is enough. I have never had the testing and I'm not going back on gluten anytime soon to get the testing.

[SheaLynne]

Okay...those are the exact concerns I was having. When I tried to eat at a restaurant Sunday pm, they latched onto the word "allergy" very quickly and understood it couldn't be cooked on the same pan/grill that other things had been with no problem. So that makes sense. (Of course, after clarifying that the eggs from dh's order that I would be eating were not cooked on a contaminated surface, they brought them on the same plate with his pancakes, with the pancakes sitting half-way on top of them...ummmm, no thanks!)

And then the idea that it is not just a "little sensitivity" to others, and to help them understand that I will just *not* choose to eat anything questionable because it is not worth it, the term celiac seems to be more appropriate. Great!

And, soyboy, while I will not use too graphic of language, I can definitely see where that would end all discussion on the matter! LOL Maybe more direct is the answer!

[GlutenFreeManna]

Okay...those are the exact concerns I was having. When I tried to eat at a restaurant Sunday pm, they latched onto the word "allergy" very quickly and understood it couldn't be cooked on the same pan/grill that other things had been with no problem. So that makes sense. (Of course, after clarifying that the eggs from dh's order that I would be eating were not cooked on a contaminated surface, they brought them on the same plate with his pancakes, with the pancakes sitting half-way on top of them...ummmm, no thanks!)

And then the idea that it is not just a "little sensitivity" to others, and to help them understand that I will just *not* choose to eat anything questionable because it is not worth it, the term celiac seems to be more appropriate. Great!

And, soyboy, while I will not use too graphic of language, I can definitely see where that would end all discussion on the matter! LOL Maybe more direct is the answer!

It's just my opinion, but it's really no one's business how you were diagnosed. You are not saying you have celiac to commit some kind of medical fraud. The food has to be prepared the same whether you are celiac or gluten intolerant. And even though I'm self diagnosed I don't consider myself to be lying if I tell someone I'm a celiac. I really beleive I have it. I'm not going to wait for science to catch up to the point where they can diagnose without a gluten challenge and diagnose with 99.9% accuracy. If I did that I would be dead. If someone asks about the diagnosis process and you think they are just being nosey you can say you'd rather not talk about it. If you think they are asking because they suspect they or a loved one has it themselves, you can still tell them to ask the doctor for a celiac panel and biopsy and explain that sometimes the tests are false negative and that the ultimate test if they get a negative is response to diet.

Now with all that said, I'm assuming you are planning on being strictly gluten free and not cheating every once in a while. Please, please to anyone reading this that considers themself to just be a little intolerant of gluten and plans on still eating it occaisionly...do us all a favor and don't use the celiac label for yourself. It really hurts those of us that are serious when someone says they have celiac but then purposely eats gluten. There's a lady like this at my DH's work--she claims to have celiac but she eats cake when there is an office birthday party. My DH understands why I would not eat cake, but all his coworkers did not understand why I couldn't eat anything at the company picnic because _____ has celiac and she doesn't always follow the diet. Just saying please take the label seriously if you plan to use it on yourself.

[BethM55]

rice dream has barley or barley malt in it- which means it has gluten. I would at the very least call u gluten intolerant.

According to the Rice Dream website (www.TasteTheDream.com), RICE DREAM Shelf Stable Non-Dairy Beverages are gluten free. Ok, now I'm confused...

[cassP]

According to the Rice Dream website (www.TasteTheDream.com), RICE DREAM Shelf Stable Non-Dairy Beverages are gluten free. Ok, now I'm confused...

just double checked your link... and NOW IM CONFUSED did they just change their product??? cause i swear to you on my life that for the last year- everyone online has been talking about how it has barley in it!!!

oy, im so confused

anybody else wanna chime in???

[cassP]

ahhh- maybe this is it: (hope this link works)-

Open Original Shared Link

oy- it didnt work.. and i cant find the FAQ page- one of the questions is: are the beverages gluten free- and the answer is that the beverage is made with a barley enzyme, and that after the product is made, the enzyme is discarded. the finished product may have a residual of barley in it- but only .002% ???

[BethM55]

It's just my opinion, but it's really no one's business how you were diagnosed. You are not saying you have celiac to commit some kind of medical fraud. The food has to be prepared the same whether you are celiac or gluten intolerant. And even though I'm self diagnosed I don't consider myself to be lying if I tell someone I'm a celiac. I really beleive I have it. I'm not going to wait for science to catch up to the point where they can diagnose without a gluten challenge and diagnose with 99.9% accuracy. If I did that I would be dead. If someone asks about the diagnosis process and you think they are just being nosey you can say you'd rather not talk about it. If you think they are asking because they suspect they or a loved one has it themselves, you can still tell them to ask the doctor for a celiac panel and biopsy and explain that sometimes the tests are false negative and that the ultimate test if they get a negative is response to diet.

Now with all that said, I'm assuming you are planning on being strictly gluten free and not cheating every once in a while. Please, please to anyone reading this that considers themself to just be a little intolerant of gluten and plans on still eating it occaisionly...do us all a favor and don't use the celiac label for yourself. It really hurts those of us that are serious when someone says they have celiac but then purposely eats gluten. There's a lady like this at my DH's work--she claims to have celiac but she eats cake when there is an office birthday party. My DH understands why I would not eat cake, but all his coworkers did not understand why I couldn't eat anything at the company picnic because _____ has celiac and she doesn't always follow the diet. Just saying please take the label seriously if you plan to use it on yourself.

Thank you. Well written, and I agree with you. I'm self diagnosed, and there is no way I'd eat gluten and be miserable just to prove my point. I'm not 'cured' of all my symptoms, but I feel much better off gluten than on it.

People need to understand that yes, even just a little will hurt, even though everyone has a different level of sensitivity. I'd rather not test mine, really. Whether "celiac" or "intolerant", there's a lot of educating to be done out there.

[anabananakins]

It's just my opinion, but it's really no one's business how you were diagnosed. You are not saying you have celiac to commit some kind of medical fraud. The food has to be prepared the same whether you are celiac or gluten intolerant. And even though I'm self diagnosed I don't consider myself to be lying if I tell someone I'm a celiac. I really beleive I have it. I'm not going to wait for science to catch up to the point where they can diagnose without a gluten challenge and diagnose with 99.9% accuracy. If I did that I would be dead. If someone asks about the diagnosis process and you think they are just being nosey you can say you'd rather not talk about it. If you think they are asking because they suspect they or a loved one has it themselves, you can still tell them to ask the doctor for a celiac panel and biopsy and explain that sometimes the tests are false negative and that the ultimate test if they get a negative is response to diet.

Now with all that said, I'm assuming you are planning on being strictly gluten free and not cheating every once in a while. Please, please to anyone reading this that considers themself to just be a little intolerant of gluten and plans on still eating it occaisionly...do us all a favor and don't use the celiac label for yourself. It really hurts those of us that are serious when someone says they have celiac but then purposely eats gluten. There's a lady like this at my DH's work--she claims to have celiac but she eats cake when there is an office birthday party. My DH understands why I would not eat cake, but all his coworkers did not understand why I couldn't eat anything at the company picnic because _____ has celiac and she doesn't always follow the diet. Just saying please take the label seriously if you plan to use it on yourself.

This makes sense to me if you're self diagnosed. I just don't think I can legitimately say I have celiac when I had very careful and thorough testing show otherwise. That said, who knows what future research will prove and my doctor said she thought there were degrees of gluten intolerance. I'm happy to stick with that term. I sometimes mention gluten ataxia since I have balance problems that mostly resolved while being gluten free and come back if I get consistently glutened (as I was on my recent trip, despite all my precautions).

And I totally agree with you about not using the term if you aren't strictly gluten free. It's not fair. It really annoys me that a woman I know describes her daughter as celiac when the girl wasn't either officially diagnosed or self-diagnosed by totally removing gluten from her diet and seeing an improvement. Some alternative therapist told her she was celiac and she's basically gluten light but she will eat pizza and beer on occasion because she hates to miss out. Agh! She feels sick the next day, but not enough to regret it. Whereas I live as strictly as I would if I were diagnosed celiac but feel that they don't think what I have is as serious because I don't use the celiac label. They are both travelling at the moment and I'm curious to hear how she handled being gluten free on holiday in the US because I found it pretty hard.

[SheaLynne]

Oh, I absolutely agree that any association with the term "celiac" should include being 100% gluten free. As I stated in my original post here, I do not intend to ever willingly put gluten in my mouth again! And that would also include part of my original question, too, because my concern is certainly that I do not want to do any kind of disservice to anyone with doctor-diagnosed celiac. I also would never want to lie about a diagnosis just to get people to take me more seriously, and I realize that a definite dx by diet is not the same as knowing you have serious damage to your intestine via scope and biopsy. Thank you for bringing that aspect into the discussion!

As far as Rice Dream, the things I read included what you've found--that they use barley in the processing but remove it, leaving an amount of gluten that allows for the "gluten free" label. Every discussion I read about it included some who could drink it and just as many who said it gave them problems. There was not much doubt that it gave me problems. It tasted great, so I wish it worked for me.