It's Only Life  

Posted by Tami in , ,

[Don't Look Away, Kate Voegele]

Operation: Gluten Free Living commenced today.

Here's what's up: my beloved husband, one Jason Jay Hizzlindometrius, has suffered from nasty psoriasis for the last 10 years.  It causes these icky puss filled lesions to form, mostly on his knees, elbows, and... other unpleasant places.  They itch and burn like crazy, the poor guy.  The only effective treatment has been this massively expensive topical cream, which he has to apply, sit around for 30 minutes, and then shower off.  When he finally went to a new derm (read: our term for dermatologist) here in Seattle to renew his prescription for said meds the derm told him that it looked like a classic case of dermatitis herpetiformis (DH).  After a skin biopsy it was confirmed-- Jason has a severe allergy to gluten which causes the nasty lesions to form, and his DH has gone undiagnosed for 10 years. (If you are really curious about DH you can read more here .)

Here are two pictures of what one of my baby's right knee area looks like:




The thing is, not only do 75-90% of people with DH have Celiac disease (the common gluten allergy; it basically makes those same icky lesions form on the inner lining of people's intestines), which Jason is going to also be tested for, but it is linked to numerous other autoimmune disorders.  It also heightens the risk that Jas will develop lymphoma (cancer of the lymph nodes).  What is really scary here is that his dad had lymphoma in his late 40's, which already means Jas is at higher risk to develop the disease.  Also, DH is hereditary and our children will be likely to have the condition.

So, we have to go strictly gluten free.  Especially for the first year-- we can't risk Jason eating anything that could be cross-contaminated with gluten (which is found in wheat, barley, and rye).  It's insane how many things contain gluten, though- check out this list (scroll down about 1/3 of the way to "What do I need to avoid?").  We can't eat out anywhere, save for maybe PF Chang's (they have a gluten-free menu and seem to be GF friendly, understanding that even gluten-filled flour particles in the air can cross contaminate food... at least, so I have heard.  We'll see.) and I hear that Outback and Red Robin also have GF menus but you have to request them.  This is all new to me, and we don't really eat out much, so we'll have to figure it out as we go.

By the way, you may see Outback and think, "Gluten free at a steakhouse?  You just don't get a roll, right?"  But, actually, even steak seasonings frequently have various elements with gluten.  It's crazy how many things you can't have- even soy sauce.  Salad dressings.  Ice cream.  Anything with starch, especially modified food starch, even vegetable starch.  Any thickener.  Pretty much just about anything you can think of!

The deal is, we can't just not eat out- we really shouldn't even eat in anyone else's kitchen.  A crumb on the counter, a fork not cleaned enough, etc.  So it's not just not eating the food people bring to potlucks, but we should bring our own food, our own dishes, etc.  I should note here that I say 'we' because, though Jason has the disease, I need to fully support him.  I can't risk that food I have in the house will make him sick (read: cause horrible skin lesions and increase his risk for cancer), or that even kissing me after I eat something with gluten could affect him.  I know this seems extreme, but I refuse to take chances.  Thus, it's Jason's illness but by the association of marriage it's mine, too.  So, we don't want to be 'that' couple, the high-maintenance one who can't eat anything or anywhere.  But... it's his health, and possibly that of our children.  I would totally oblige for any friends in the same situation, no matter how high-maintenance.

There's a silver lining, a blessing in disguise, in all of this.  But... I am tired of typing.  And, to be honest, I look cute.  Today Jason and I went to a couple of local stores to check out the GF products, so I wanted to look pretty for him :)  And, since I'm feeling a little prettier than normal, I figure I will post a vlog.  But a very cool thing happened today, and you should check it out.  I'll embed the vlog below.  It's actually something that I think will really encourage and bless many of you, and I know it's a wee bit long, but I really hope you enjoy it.

I really need to figure out how to look cute and smiley at the end, so that the picture doesn't make me look like a complete tool :)

This entry was posted on Friday at Friday, November 14, 2008 and is filed under , , . You can follow any responses to this entry through the comments feed .

2 battle cries

Hi Tami! I'm a girl from Mars Hill that ran across your blog on the City. Thank you so much for honestly writing through your addiction which is a road that I am just completely realizing. Though I'm not allergic to gluten, there's a group at Mars Hill that you can join on the City called: Gluten Free, Dairy Free, Egg Free Ladies Group. I'm not sure about the specifics but I know that there is plenty of resources (such as stores to shop, deals on gluten free things, etc.) for people with having to deal with a gluten free diet. Again, thanks so much!

November 15, 2008 at 10:10 AM

Ana,

You're awesome! Thank you! I found the group on The City and requested to join, and I'm really excited for the opportunity to meet (either at a physical meeting or just virtually) other MHC members who are living this GF life. So far we seem to be ok with eggs and dairy, though J has to get a whole lot o' tests done... I'm really hoping he's just needing to avoid the gluten because that's enough of a food purge for us!

We've been so grateful to discover PCC Natural Markets- they have been super helpful and, from the research I was able to do via their website, they seem to be really dedicated to serving people, not just trying to make a buck.

Anyway, thanks for the heads up and for reading my blog!!

November 15, 2008 at 12:27 PM

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