Self-diagnosis

[shanmcg5]

Hello everyone! Long time troller, first time poster...

I am writing on behalf of my wonderful boyfriend. For twenty years (he's only 30 years old) he's had every Celiac Disease symptom there is (gut pain, acid reflux issues, DH, tingling in hands and feet, inability to gain weight, exhaustion, liver abnormalities....). With some persistence from me, he went to a doctor (internist who then referred him to a gastro doc). The doctor was not really interested in hearing his thoughts on Celiac Disease, but did do a blood test. However, the doc told him he had a "classic case of IBS" and to take fiber...thanks....

Anyway, the blood "test" came back negative...a nurse from the office called...and that's the last my dear boyfriend has heard from the doctor. He's very frustrated and I don't blame him.

Our options were: second opinion or self-diagnosis. We've decided to take the self-diagnosis route. We don't live in an area that has a vast selection of doctors and my cousin/BFF is a nutritionist and she's the one who tipped us off about Celiac Disease in the first place! We've already implemented gluten free meals and foods in the house, and when he eats those, he feels great. Then he'll have some gluten and be in the fetal position within minutes. I'd say right now we are 50% gluten free. July 7th is gluten-free-Day....Gluten Free Day. We know that to get a second opinon he needs to be on gluten, but we felt that if the gluten free lifestyle worked, there would be no need to go to another doctor and be told IBS again. He's had surgery on his stomach and esphogus already (10 years ago) so an endoscopy is not out of the question, it's not something he's thrilled about (another reason we chose self-diagnosis).

My question is: For those of you who have gone the self-diagnosis route, what do you tell people, especailly family and friends? Do you tell people you are allergic to gluten, that you have celiac disease, that you've self diagnosed yourself???? He's very private and I know he'll want to give others as little information as possible. He is also a little worried that without a proper diagnosis, people won't take him seriously when he says he can't eat gluten. He's finally accepted the fact that it most likely is gluten causing his problems and is sick and tired of being sick and tired.

Thanks!

[Jestgar]

I just tell people that gluten makes me sick. It isn't their business why, unless I choose to tell them. Would people question you if you told them you didn't eat broccoli?

[TiffLuvsBread]

My question is: For those of you who have gone the self-diagnosis route, what do you tell people, especailly family and friends?

For me, there is no point in having a doctor tell me I have it. I know I have it, so that is enough for me. I am self-diagnosed just like your boyfriend. I feel like a superstar without it, I want to curl up and die with it. We have a family history so it wasn't hard for me to decide to cut out gluten and see if that helped. I tried cutting out dairy and soy first with no improvement. The moment I got rid of gluten I was a whole new person. I cannot imagine eating a gluten-heavy diet for even a day, to get an accurate (maybe, maybe not . .) test.

I've only been eating gluten-free for 20 days. Life is completely different. I am VERY strict about the diet. My friends know what's going on and they support me. The first time I tell someone why I can't have pizza at the pizza place, I tell them "it is an autoimmune disorder and my body cannot process anything that contains gluten. Like this pizza crust." That's pretty much all it takes. If you say "allergy" they want to know all about it. ("So, like, you sneeze and stuff?") But if you say "autoimmune disorder" people kind of just take it and go "WOW, that's terrible! OK well no pizza for you!" and everyone moves on. I too don't like to sit around and talk about my gas and intestinal pains, so I tried wording it so many ways to avoid extra questions and awkward conversations at a public dinner table. I think this is where I nailed it, and actually it's the same thing my dad says and neither of us have had to sit down with anyone and discuss personal details.

I would suggest going gluten-free ASAP, for his sake. The pain he feels is very very real and thinking back to how I felt just 21 days ago I panic at the thought of being contaminated or eating something accidentally. My fiance decided to make the house 100% gluten-free and that he would eat my diet. He says it's silly to buy two loaves of bread, two kinds of pasta, etc, and that he wants to support me as best as he can. Plus he also fears cross contam. and doesn't want to risk having all purpose flour anywhere around.

He will get more comfortable talking about the disorder once he is on a 100% gluten-free diet and starts to feel like a whole new man.

[leadmeastray88]

I don't have clinical diagnosis, because I didn't have positive bloodwork and I didn't get a biopsy. However, I have a family history and all of my symptoms resolved on a gluten-free diet, so I've been deemed "probably Celiac". I consider myself to be self-diagnosed.

My family and friends have seen how sick I was, so it was really a relief when I told them I was 'gluten intolerant', and that it makes me sick to eat it. They've seen my improvement, and don't question it. My step-grandmother is extremely skeptical, and says "well you can eat it sometimes can't you, because you're not Celiac?" and whatnot, but for the most part they are supportive and understand. My friends especially, they always buy me my favorite gluten free snacks such as Cheechas and Rice Works chips and whatnot.

As far as public situations such as restaurants, I say I have 'Celiac Disease' because I think they take it more seriously. It's so important that they know that preparing your food is a huge responsibility and they need to take necessary precautions.

Some of my in-laws didn't understand at first when I chose not to receive the host at church anymore, and said "Can't you just have a little piece?" and I say "No, because even a tiny bit will make me very, very sick." Then they understood. You just have to be calm and politely explain.

Those who truly care about your boyfriend will understand. Those who do question/are skeptical don't matter and can shove it. You can't put a price on your health. It ultimately doesn't matter what other people think because they don't know how you're feeling.

Take care

[shanmcg5]

Thanks everyone for your responses! The situation will probably determine his response/explanation. He's hidden his sickness for so many years that I think a lot of people will be surprised. I have to say, I am excited and optimistic for this change, for both of us. I am so glad to know there are others out there who decided a clinical diagnosis wasn't necessary.

[OptimisticMom42]

I'm not self diagnosed but I have found that many people that I talk to know what celiacs is and have a friend or relative who is gluten free. You can just tell the truth. "Gluten really makes me ill, so I don't eat it." Everyone has something that upsets their stomach.

[mom2blondes]

I wasn't entirely "self- diagnosed", but since I didn't get the diagnosis from a "real" doc, I feel like I'm in a similiar situation. A chiropractor I was seeing as a last ditch effort to find help led me to get stool testing done and it was VERY high.

I tell people I have an auto-immune response to gluten, so I cannot have it ever again. When in a restaurant I say I have celiac disease. With my friends in the medical field I tell them I had positive test results, and I have chosen not to have an endoscopy and to go gluten free anyway. That usually does it.

[Amyleigh0007]

Why not just say he is gluten intolerant? People wouldn't question someone who said they were lactose intolerant so why would they with gluten? From your post it pretty much sounds like he can't handle gluten and feels better without it so that would make him gluten intolerant.