I Have The Gene....

[givenupgluten]

To make a long story short..I have had stomach issues all of my life, in one form or another. I was diagnosed as having IBS about 10 years ago, with no tests done. My mother has celiac and was diagnosed at age 23...my syptoms mirrored hers completely. I had the celiac blood panel tests done in the beginning of the year (while eating gluten) and tested negative. My dr. felt there was no reason to look into celiac as a diagnosis from that point on. I found a new dr. but had to wait an extensive amount of time to get in to see him. In the meantime my symptoms were so bad, I decided that gluten free diet couldnt hurt. So I tried it, and felt about 70% better within the first week or two. Then, I met with my new dr. he said that he wanted to me to take the gene test to see if I even had the gene and then we'd go from there. My results came in yesterday and I DO have the gene. He told me that if I needed absolute proof whether i have the disease NOW, then I would need to go back on a gluten challenge (eating gluten for several months) prior to the endoscopy OR I could remain on the gluten free diet if it was helping - if I was satisfied enough with the outcome, and no exact diagnosis. I opted to not go back to eating gluten, and to instead remain on a gluten free diet.

....this is my question: For those of you who do not have a definitive diagnosis, but feel certain that you are gluten intolerant, how do you approach your other dr's/health care professionals/family with this info?? Do you say that you have 'celiac disease?" Do you let them know the results of the gene test and that you are now living a gluten free lifestyle and that's that? I want to visit a nutritionist but am not sure whether to approach it as "I have celiac...help me"...that feels like lying, since I am uncertain BUT I do want people to be clear about the severity and importance of it for me. How do you handle these situations?

Also, for those of you who have the gene, did you have your children take the gene test as well?

[ShayFL]

If you respond positively to the diet, then by all means say "I have Celiac disease."

[*lee-lee*]

my doctor has not given me a definitive diagnosis. he believes that i need a positive biopsy, despite the positive antibodies in my blood and the presence of the DQ2 gene. i say that i have Celiac and don't think twice about it. i don't have kids yet but when i do, i intend to test them for the gene.

[givenupgluten]

Thank you both! I appreciate your responses. From this point forward, I think I will simplify it by saying "i have celiac." It seems like the most direct response rather than me going into detail over the nitty gritty details of it all. Why make things harder on myself right? Haha

I dont have children right now, but that was one of the first questions my mother posed to me when I told her that I too had the gene. She asked 'how will this affect YOUR children???" Of course, I have no idea how this will effect them, but it seems like getting them tested early on for the gene makes the most sense. So I can either rule it out, or proceed with caution.

[*lee-lee*]

i think if you have the gene, you can pass it on to your kids but that doesn't mean they will develop Celiac. you can always raise them gluten-free. it certainly won't hurt anything.

[mftnchn]

I say I am celiac. If I am asked further questions, such as by a knowledgeable health care provider, I lay out all the evidence I have. I was overseas and unable to get the blood tests and biopsy before going gluten-free so I don't have the typical gold standard diagnosis.

However this summer I saw a new PCP who takes only celiac or gluten intolerant patients. Her comment when she saw my Enterolab test was it was the most dramatic she had ever seen. And besides that I have a whole list of evidence.

It took me 10 months though before I felt confident in the diagnosis, I'd didn't just jump into that.

You can say you are gluten intolerant but people may look at that as less severe when you need them to be extremely cautious. I think it is whatever works in your situation.

To me your mother's diagnosis and your similarity should be enough for a knowledgeable doctor--many aren't though!

[givenupgluten]

I think my dr. wishes I had not gone gluten free before I met with him, so I could have the biopsy done BUT he realizes and respects my decision not to go back to eating gluten for 3 mo. just to have a test run. He told me adhere strictly to the diet if I'm not going to have to test done to find out for sure. I think I would perhaps be more confident if I had an exact diagnosis, and be able to express my needs better to other people - but I'm not taking the chance on injesting gluten and feeling awful again. It's not worth it to me.

I'm not really sure just how concerned I should be about cross contamination issues at my house. I feel like I must sound overly dramatic when explaining to my boyfriend how we should handle things around the house. I'm not a very straightforward 'this is how it needs to be' kind of person, so I'm not completely confident in my ability to express my needs. I feel like a hypochondriac! But I also want to be as safe as possible. Once I told him we should be more careful re: keeping counter tops clean and not sharing utensils,etc..he has responded very positively and I often find him sneaking an extra cleaning session in the kitchen just to 'make sure.' While I am concerned about being safe, I also do not want to burden anyone with this.

How do you find the balance between being safe, and yet not overwhelming yourself and the people around you?

[*lee-lee*]

i think that's awesome that your boyfriend is sneaking in extra cleaning sessions in the kitchen! it doesn't sound like you're burdening him at all. my boyfriend, on the other hand, isn't as patient. i'm still working on drilling it into him. he makes himself pancakes and leaves the mess on the counter. i have to keep asking him to please clean up after himself...and then i go back over everything after he's done.

it's only a burden on people if you allow it to be. i'm already thinking ahead to the holiday season and intend on bringing my crockpot with me to visit relatives. i'll be able to make a dish that i can safely eat and share with others. i won't be relying on them providing food that i can eat plus i get to show off that gluten free eating can still taste yummy!

i haven't done much dining out at restaurants but when i have to, i try to find out where we're going and call ahead and speak with a manager about what they have to offer. doing this makes ordering easier once you get there. plus you can always excuse yourself and speak privately with the waiter about your restrictions if you're uncomfortable discussing it in front of others.

you just have to remember that you are doing this for yourself and to feel better. if that means a little burden once in a while, so be it. the alternative is feeling crappy...and who wants that?