Sunday, June 27, 2010

I've been gluten free for 5 days now.

My belly is calming down - I actually went out shopping with Hubs yesterday and didn't have to rush off to the bathroom once - my joints are less swollen and painful, I don't itch as much and I have more energy.

I've found some healthfood stores that have good gluten-free foods and have purchased a breadmaker. . . it's going to take some getting used to, but I can do it.

The one thing that I seem to keep coming back to is eating out - not as restaurants, but at other people's homes; at parties and get togethers and such. I don't want to be rude and NOT eat, I don't want to cause a scene by going on about how I can't eat any of what they've prepared and I don't want anyone to go to special measures to make me stuff that's gluten-free. I told Hubs that I thought bringing my own food would be the best thing, but that didn't exactly go over well with him. However, it's not his body; he's not the one reacting badly to wheat products - so I think that I'm just going to do what I think is right.

My mother doesn't seem to get it. She thinks that as long as I don't eat bread, I'll be fine (and she describes Celiac disease as "having your tummy upset by wheat", bless her). I've tried to tell her that things like pie and cake and pastries and pasta and seasoning mixes and batters and canned soups and breakfast cereals are all off the 'can eat' list now, but I don't think she's understanding that wheat is literally everywhere. It's a good thing I don't live with her, I'd probably hurt her feelings by not being able to eat 90% of what she cooks.

I will say that my food choices are much, much healthier now that I'm having to scrutinize what I ingest. In the past when I wanted a snack I may have grabbed a cookie or a Danish. Now, I have a piece of fruit or a yogurt. Instead of just shoving anything in my mouth without really looking at what I'm eating, I'm choosing more nutritious foods and I'm very aware of what it is that I'm feeding myself.

I know I sound negative about this gluten-free diet, but I'm really not. I'm kind of enjoying experiencing new flavors and textures and foods . . . I'm just frustrated with some of the people around me. I know there are support groups for people with celiac disease, but is there much information for relatives/friends?

Friday, June 18, 2010


I have the results of the tissue biopsies taken during a colon/endoscopy 2 weeks ago.

They are "highly suggestive of celiac disease".

So, there we are. Celiac disease.

No gluten for me.

This is going to mean a huge lifestyle change and I am, to be honest, a little intimidated.

Wednesday, June 9, 2010


My mother goes home today. There was a slight panic in our house this morning when American Airlines decided that my mother's departing flight did not exist.

Me: Are you sure that's the right flight number?

Mum: (Showing me her itinerary that my brother printed for her when he booked the seats in DECEMBER) That's what it says on the ticket...

Me: There's no such flight number.

Mum: (shrugging) That's what it says on the ticket...

(at this point I'm feeling like I'm in a scene from the Grapes of Wrath, where the Joad family have a 'han'bill' promising them work in California and treat it as though it's a piece of ultimate truth)

Me: It doesn't matter WHAT your itenerary says, there's no such flight!

Mum: *shrugging and waving her hands* That's what it says on the ticket.


I called AA to ask what the deal was.

AA Agent: There's no such flight number.

Me: I know. I checked online and asked her, but she's insisting that what it says on her ticket. So, what flight IS she on?

Agent: The one leaving an hour later. Don't worry, she's got a reserved seat.

I got off the phone and wrote down the details for mother (why she wanted me to write them down I don't know; I'm taking her to the airport and getting her checked in).

Mum: Aren't they supposed to tell people when flights change like that?

Me: Yeah, and I don't know why they didn't.

Half an hour later, totally out of the blue:

Mum: I wonder if the new tickets your brother gave me before I left have the new flight number on them...

Me: Wait, what? What 'new tickets'!?

Mum: About a week before I left he rang to say there was a change. I was in town so he shoved the papers through the letterbox...I didn't really look at them, I just put them in with the other tickets.

She hands me a package of papers and sure as shit, the 'new' flight number is right on the front.

Mum: Oh. I thought that he meant it was the flight I came in on that was changed by 5 minutes. I didn't look at it, I just stuffed it in with all the other papers he give (sic) me.

Me: *sigh*

Tuesday, June 8, 2010

A tale of two women.

I have two friends (I actually have more than two, but this story only involves two of them).

They're both roughly the same age. They're both married. They both have children. 'A' has one child. 'B' has two. B has a college degree, A does not. A relies on some public assistance to help her and her family make it through each month - not a whole lot, but some.

They both work for the same company, and have the same medical insurance through that company. The similarities, however, end there.

A decided that she wanted more children. When she had difficult conceiving, she had IVF - a procedure covered by her insurance. It worked, and she got pregnant with triplets. TRIPLETS.

A's babies were born at 25 weeks, which meant that they required lots and lots of supportive care in the NICU. One died after 10 days. The other two are still there. A got the hospital bill for the one who died and realized that, despite her insurance company covering 80% of the cost, she was going to have to file for medical bankruptcy because she can't pay it - and that's just for 10 days of care for ONE child. She hasn't seen bills for the two that are still in the NICU yet, but if she can't pay her portion for one there's no way she's going to be able to pay for the other two.

That's A's story. Now let's talk about B...

When B was 15, her mother died from breast cancer. She also lost a maternal aunt to the disease. Current research suggests that that increases 'B''s breast cancer risk by upwards of 60%. 'B' worries about developing the disease that killed her mother and aunt and wants to be tested (BRCA test) to see if she carries the mutated gene that causes the cancer. 'B' has decided that if she DOES in fact test positive, she's going to have a bilateral mastectomy so she can, as she puts it 'get on with my life without that shadow hanging over me all the time'.

Sounds like a good plan, right? The insurance company doesn't think so. They won't cover the cost of the BRCA test - $3500 - and 'B' can't afford to pay for it herself.

This insurance company will fork out literally millions on IVF treatments and neo-natal intensive care for premature babies for a couple who already have a child, but it won't cover a $3,500 genetic test for a woman whos family history puts her in a high-risk category for developing a potentially fatal disease.

What the fuck, America? Is it just me, or does this seem unfair and fiscally irresponsible?