Invisible Illness Week -- mvps & celiac disease

[rm]

1. The illnesses I live with are:
Mitral Valve Prolapse Syndrome
Celiac Disease

2. I was diagnosed with it in the year:
MVPS: 1984
Celiac: 2006?

3. But I had symptoms since:
MVPS: since age 11
Celiac: since birth

4. The biggest adjustment I've had to make is:
MVPS: because I was still growing it didn't feel like an adjustment, it just was.
Celiac: I cannot eat any food that contains or has come into contact with gluten. This includes wheat, barley, rye, and oats (although oats is a matter of discussion amongst celiacs)

5. Most people assume:
That I'm on a low-carb diet. That I have an eating disorder. That I'm lazy. That I suffer from mental health issues as primary illnesses instead of periodic symptoms of both illnesses. That I'm just a fussy eater.

6. The hardest part about mornings is:
I don't like them, but unless I've been exposed to gluten they aren't probably any worse for me than any other person who hates mornings. When I've been exposed to gluten, it is not always possible for me to leave bed.

7. My favorite medical TV show is:
My childhood was extremely medicalized for reasons both related and not related to these issues. I have an accute medical phobia and don't really enjoy shows like this, although I will watch them sometimes for other plotlines but have to look away a lot.

8. A gadget I couldn't live without is:
Without the Internet I never would have gotten diagnosed with celiac disease and I probably would have had my gall-bladder out too. The Internet isn't just for porn.

9. The hardest part about nights is:
If I've been exposed to gluten and have been able to function I crash early. I also commonly experience night-sweats.

10. Each day I take [?] pills & vitamins.
Unlike many people with MVPS I am not on beta blockers. I do however have to take large doses of antibiotics any time I have dental work. Because celiac disease often comes with severe dental problems -- that's a lot of antibiotics, which over time have been sort of shit for my system. Meanwhile, there is no treatment for celiac disease other than to eat a gluten-free diet, but I always carry pepto in case I am exposed to gluten, and daily need to take substantial B-vitamins, D and calcium.

11. Regarding alternative treatments, I:
I use them a lot to deal with symptoms when I've been exposed to gluten and to deal with the permanent damage my body has suffered because of how long it took me to get diagnosed.

12. If I had to choose between an invisible illness and a visible one, I would choose:
I'm very lucky that the diseases I have probably won't kill me, and probably won't do more damage to my body now that I know what they are. It's a pretty good deal in the scheme of things.

13. Regarding working and career:
In any business situation with food, I have to choose either to explain my illness or have assumptions made about my weight and body image that can be damaging to my authority.

It is also very hard work in film with celiac disease -- I have to bring my own makeup to set, pack my own lunch for which there are never refrigeration facilities and work long days with unpredictable access to food that won't make me ill.

14. People would be surprised to know:
That there are times when I am seriously utterly grief-stricken about these diseases that I freely admit aren't a big deal in the scheme of things. Without them, I probably would have been a professional dancer with a company. Without them, I would have a nice smile. Without them, I wouldn't have spent my whole life having people insist I was bulimic because of my teeth or the bags under my eyes. Without them, I'd be taller. Without them, my feelings about my gender would not be complicated by how my body has let me down. Without them, I would not constantly have to deal with accidental symbolic slights (I cannot break bread with you) or intentional ones (in Catholicism, I cannot take communion and so my soul is suspect; sometimes when I ask about food ingredients, impatient workers will tell me "you just better not eat then" -- you can't imagine what that feels like). Without them I'd be able to just stick my fork into whatever Patty is having for dinner; we wouldn't need separate pots and I wouldn't have to watch what she eats before kissing her. Without them, I'd also spend about 35% of what I do now on groceries; celiac disease is expensive.

15. The hardest thing to accept about my new reality is:
So many of the symptoms I live with could have been prevented by early diagnosis if I lived abroad. That's hard. There's also a lot of food I feel deeply sentimental about I can't have -- Anzac biscuits, semolina bread, etc. That's hard too.

16. Something I never thought I could do with my illness was:
I was only able to consider myself an athlete after my celiac diagnosis.

17. The commercials about my illness
There aren't any.

18. Something I really miss doing since I was diagnosed:
Eating cookie dough. Not having to plan my food and my food risks ahead.

19. It was really hard to give up:
A sense of being invincible.

20. A new hobby I've taken up since my diagnosis is:
Like I said, I only started fencing after diagnosis.

21. If I could have one day of feeling normal again, I would:
I have always been sick. I don't know what normal is.

22. My illness has taught me:
That my otherness is not my imagination, nor my fault.

23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
That you can't eat out in restaurants without a gluten-free menu. You totally can, you just have to assert yourself. And I have no patience for people who put their perception of what is "nice" over protecting their own health. Also doctors who describe celiac as "a rare childhood illness" -- that's not true on several levels -- it's pretty common and it's life-long, but the U.S. is weird about this one.

24. But I love it when people:
View celiac disease as a cooking challenge. Are aware of when I'm walking slower (either because of celiac or MVPS issues) and slow down automatically without comment -- I hate having to ask people to slow down. Don't apologize for eating gluten in front of me -- it's fine -- why would I begrudge you good food as long as I have some good food too?

25. My favorite motto, scripture, quote that gets me through tough times is:
Mostly I don't. Mostly I think of fictional stories and people and find solace in that.

26. When someone is diagnosed I like to tell them:
Which gluten-free products are awesome and to fucking get control of themselves and start viewing this as a way to be more intentional, because you don't have a choice anymore. Most people get diagnosed with MVPS as adolescents, so I don't usually meet people just diagnosed with that.

27. Something that has surprised me about living with an illness is:
That I have an illness. I down-play it a lot, but I have to think about it Every Single Day and some days it's the only thing going on in my day.

28. The nicest thing someone did for me when I wasn't feeling well was:
My diagnoses both were during pretty fucked up things in my life. My friends are patient with me. It's not epic.

29. I'm involved with Invisible Illness Week because:
1 in 133 people have celiac disease. Most have not been diagnosed. Celiac disease undiagnosed can b hell to live with it. It can also lead to significantly higher risks of epilepsy, depression, anxiety disorders, neuralgia and intestinal cancer. Diagnosis can save your life. Diagnosis can also cure other diseases or symptoms you've been living with for years.

MVPS is a big pain in the ass and also has neurological symptoms including anxiety and depression. But it's not nearly as scary as doctors make it out to be.

30. The fact that you read this list makes me feel:
A little weird. Also a lot of these questions don't really get at the symptom sets that come with these diseases, so if you have any questions, I guess this is the place to ask.

Comments

[trillian42.livejournal.com]

Is there any fail-proof test for Celiac other than a strict elimination diet?

[rm.livejournal.com]

Nope.

There's a blood test that has crap accuracy
There's the whole intestinal biopsy thing that sucks (biopsy, then stop eating gluten for 6 months, then another biopsy to see if the damage healed, then EAT MORE GLUTEN and biopsy again to see if the damage has come back).

Because of this my diagnosis is actually "presumed celiac."

[ladyofthelog.livejournal.com]

cookie dough: I find that you can do a 1:1 substitution of fearn rice baking mix for flour in the classic tollhouse cookie recipe on the back of the nestle bag, as long as you don't add the salt. Delicious and happily consumed by Martin. A tasty variant - add 1 tsp maple extract and 4-6 shredded strips of bacon for the infamous gluten-free bacon chocolate chip cookie.

ETA: if I haven't told you already, the fearn rice baking mixes are AMAZING and the best I've found.

[dulcinbradbury.livejournal.com]

Alton Brown developed a gluten free chewy chocolate chip cookie recipe: http://www.foodnetwork.com/recipes/alton-brown/the-chewy-gluten-free-recipe/index.html

I haven't tried it yet myself, but, I've kept it in the back of my mind should I be looking for a gluten free dessert.

[imaginarycircus.livejournal.com]

I also have a MVP, but it's because I have Ehlers-Danlos syndrome. I've never heard of MVPS. I remember when I first friended you, we thought I had celiac. My biopsy and blood panel were negative, but I think I feel better when I avoid gluten, but I don't have to be extra careful about every thing I eat the way celiacs do. I was very relieved not to have celiac. I was even more relieved when they told I don't have Lupus. I've leaned to live with fibromyalgia, IBS, and Ehlers-Danlos, and my fun hormone producing pituitary tumor. None of them are life threatening. Once we get my apnea straightened out I expect to feel pretty good. It is all a bit exhausting. And I have also never really been healthy, but I was able to climb mountains and run long distance until my mid 20s.

These things make us survivors.

[graene.livejournal.com]

Thank for providing a name to take with me to my next physical. I've always thought it extremely odd that my 'chronic fatigue syndrome' has been in 'remission' for almost fifteen years, but this:

"Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type);..."

rather explains things, given that this

"Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis."

perfectly describes my on-going joint issues and those of my brother, father and grandfather.

Regular yoga has helped manage it tremendously, btw. Strengthens muscles to stabilize joints while supporting them and the general body-awareness to avoid excesses. I'll be sending this to my cousin also.

[saomigray.livejournal.com]

I know someone else who has celiac disease, and I never realized that was what she had until I started reading your lj. I only understood there were things she couldn't eat, and it seemed to be a sort of allergy. We didn't treat her differently, but when snacks were bought that were to be consumed in her presence labels were read to make sure everything was cool.

I didn't know her when she was diagnosed, but I understand she felt very unwell for a long time and couldn't figure out why. At the time she had a diet rich in glutens and had to change really everything about the way she ate.

The disease also seems to have contributed to some nutrient-deficiency related mental unbalances I don't quite understand.

[dsmoen.livejournal.com]

No one understands them fully, and each celiac's different.

I'm not especially sensitive to wheat despite being celiac, and even I have to re-think things. For example, I don't have a problem having a burger cooked on a grill flipped with the same spatula used for wheat buns. A friend of mine would literally have a seizure and be on the ground if that happened.

So even as a celiac, I have to temper everything based on my experience not being as extreme as some.

[viciouswishes.livejournal.com]

In any business situation with food, I have to choose either to explain my illness or have assumptions made about my weight and body image that can be damaging to my authority.

Thank you for this. I have many severe (take me to the ER) to mildly annoying food allergies and sensitivities, and I've felt the same thing. Especially when I frequently have to turn down dessert because of them.

[rm.livejournal.com]

It is the one thing that pretty consistently makes me snap at people, when those thought are expressed, especially if they are waitstaff.

[laughingacademy.livejournal.com]

Without them I'd be able to just stick my fork into whatever Patty is having for dinner; we wouldn't need separate pots and I wouldn't have to watch what she eats before kissing her.

Well, damn.

[fireflygirl.livejournal.com]

Without them I'd be able to just stick my fork into whatever Patty is having for dinner; we wouldn't need separate pots and I wouldn't have to watch what she eats before kissing her.

This! Exactly!!! (Sorry, delurking because of the shared celiacnesseses)

[browneyedgirl65.livejournal.com]

#23 is interesting. Can you trust the restaurant workers? I don't even mean people who will say to themselves "Well, what she doesn't know..." (which are in a whole class of rant to themselves) but that there are so many people who do not pay attention, who are utterly clueless, who have no idea of what goes on around them. The sort of people who serve a rice gumbo with shrimp by mistake to someone horribly allergic to shrimp/crab/etc (as in, resulting in ER trips) and who had ordered the red bean soup...

[ravenskye8.livejournal.com]

Having severe food allergies myself - it's a craps shoot sometimes... you learn from experience where you can safely dine out... Mostly I have figured out a few things on the menu at many different restaurants that I can order safely, and I stick to those... but, every once in a while, someone different is in back cooking, or they adjust the recipe while the menu doesn't reflect that, and you have an interesting reminder that, yes, you're still allergic...

What's odd is that I have had mostly good experiences at restaurants - most places go out of their way to make sure what I'm eating is safe for me... I have the most trouble going to events and catered receptions like friends' weddings and such... the caterers - even if they have been advised well ahead of time of my dietary restrictions - tend to have an absolute fit, and either don't come up with anything separate for me (meaning I end up not eating), or they cook me something absolutely unappetizing that it's embarrassing... I could come up with about 10 different entrees for myself given the ingredients I see on other peoples' plates... they just don't want to be bothered making something different for one person...

[ravenskye8.livejournal.com]

Thanks for posting this... I think I'll do the same...

[alumiere.livejournal.com]

thanks for posting; it's a good prompt for me to make a similar post on my lj

[editrx.livejournal.com]

I hadn't seen this meme; I'm glad to see you posting about MVPS and celiac, as they're so, so misunderstood by just about everyone.

I should probably grab this meme (if I can remember to do it tomorrow).

[newsbean.livejournal.com]

Invisible illness is so difficlt. Back when I was very ill and needed a handicapped placard, I got so many very dirty looks. People assumed I didn't need it just because I looked young and healthy. On days when I just couldn't deal with stranger hate, I carried a cane.

[jinian.livejournal.com]

Yeah, props help. People can still be amazing assholes when I'm carrying a cane, but at least I feel like I could whack them into submission if I really wanted to.

[marzipan-pig.livejournal.com]

to fucking get control of themselves and start viewing this as a way to be more intentional, because you don't have a choice anymore

Yes. I feel this way both about my mood disorder and pain stuff, and when talking to people with both/similar. There's this whole "I don't want to take pills" thing, and it's like, fuck, NO ONE wants to take pills, it's not about wanting to take the pills, it's about wanting WHAT THE PILLS GET YOU.

Also, your journal helped me understand a celiac coworker better; I still have a hard time buying good snacks but I know more what to look for and that it's possible that NOTHING I pick out will work and not to be hurt about it since it's not, afterall, about ME.

[gallo-de-pelea.livejournal.com]

There's this whole "I don't want to take pills" thing, and it's like, fuck, NO ONE wants to take pills, it's not about wanting to take the pills, it's about wanting WHAT THE PILLS GET YOU.

Thank you for this.

[dichroic.livejournal.com]

MVPS has symptoms? I was told I have it (I think I was, there were some language issues) last year during an unbelievably thorough physical. As my mother (who works out 3x per week at age 67) and my husband (competitive rower) both also have some mitral valve regurgitation, I just said "Oh, okay" and went about my business. (The doctor said not to worry, but did mention about the antibiotics.)

Either the leaky valve I have is something else related, or I'd better do some research. Guess I'd better research anyway.

[dichroic.livejournal.com]

..and Google says: I just have MVP - but I'm pretty sure my Mom has MVPS (I've emailed her). So thank you for the education.

[verasteine.livejournal.com]

Thanks for sharing information and your experiences -- it's an education.

I might do this myself tomorrow.

[eumelia.livejournal.com]

Thank you for sharing.

Would it be all right if I link to this (I'm planning on doing a post to raise awareness of this week, though I'm don't have an ID or ICI).

[rm.livejournal.com]

Yeah, feel free.

[misswinterhill.livejournal.com]

I know that this is a shallow comment, but I had no idea you guys got ANZAC biscuits over there too! That's strangely awesome.

There's a company here that makes gluten-free cookie dough in a tube! I know this because I live with someone who is not Celiac, but has an intolerance that exacerbates her MS, so we're a gluten free household :)

It sounds weird to say I enjoyed reading this -- would it be better to say that it was enlightening?

[rm.livejournal.com]

We don't! But I spent time in Sydney right before I got sick (looking back, I'm lucky I didn't get sick there, as the symptoms that led to my diagnosis were starting to come on then) and lived on Anzac biscuits. Until my diagnosis I used to order them from an AUstralian products importing company.

[ladyaelfwynn.livejournal.com]

I appreciate your candidness concerning celiac. It's been very helpful as we've started the rounds of docs to try and figure what's up with my daughter. She's had tummy upset everytime she eats for about a month and the only thing that doesn't cause lots of trouble are various wheat things (doughnuts, poptarts, PBJs), so probably not celiac disease. What it is though, no idea.

[rm.livejournal.com]

Corn and soy allergies that have intestinal only symptoms are very common as well.

Also note that one of the things that happens with celiac is that eating gluten makes it hard to digest fat -- I was eating toast and plain chicken for over a month and not feeling _too_ awful because of the low fat content while they tried to figure out what was up with me, so you never know.

[these-3-remain.livejournal.com]

Hey, I'm glad (and I hope you are, too) that I met you, because if I hadn't, I'd have never heard about celiac disease. I'm really glad that I know about it now, so I won't jump to the conclusions that someone's a picky eater or has an eating disorder just because of the choices they make with their food.

[gallo-de-pelea.livejournal.com]

I had no idea (but am not surprised) that gluten is an issue in makeup, too.

[themaskmaker.livejournal.com]

Re #14:

My sidekick is an Episcopal priest. There are communion hosts made with rice flour, which we know because we have two parishioners who have celiac disease. The former priest wouldn't buy the rice hosts, and they couldn't take communion for years. Fuck head. And I say that with all Christian charity.

[rm.livejournal.com]

Yeah. Most denominations other than Catholic allow for a rice host. For Catholics there is a low-gluten but not a no-gluten option.

[annlarimer.livejournal.com]

sometimes when I ask about food ingredients, impatient workers will tell me "you just better not eat then" -- you can't imagine what that feels like

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

[redfiona99.livejournal.com]

Hello,

Sorry to bother you but I couldn't help notice that you mentioned fencing. Fellow fencer here, and I was wondering if there was anything that you could recommend in terms of eating while fencing or competing? One of our newbies has celiac disease and we'd like to keep her and prevent her from passing out due to hunger. That happened to a couple of other fencers so we like to keep a stock of food handy but we're also worried about making her ill, because normally the stock is cereal bars.

[rm.livejournal.com]

I'm lucky in that there is a gluten-free bakery a block from my salle. The thing about gluten-free foods is most don't have a long shelf-life. That said, Glutino gluten-free pretzels taste awesome and gluten-free cookies from Pamelas are good and shelf-stable. There are also individual serve squeezy packets of peanut butter that contain like 2 tablespoons worth you can buy, that I use sometimes.

[riverrocks.livejournal.com]

sometimes when I ask about food ingredients, impatient workers will tell me "you just better not eat then"

I have severe gluten, corn, and soy sensitivities, plus several other food sensitivities and allergies.
I have had workers/volunteers in food shelfs/banks respond to my request to read labels so I know I can actually eat the food I'm taking home and wanting to leave the foods I can't eat for someone who can by saying "if you were really hungry, you would just take what we give you".

There are a lot of variations on that particular form of impatience and/or denial, and it can be very easy to internalize that response and want to simply disappear. I keep standing up for myself, but it can be a lot of work.

[rm.livejournal.com]

Do you know that angelfoodministries.com has an allergan-free package? Would that work for you? I was excited to see that.

[juniperus.livejournal.com]

My husband has MVP and, fortunately, hasn't had to go the beta blocker route. Much craziness over anti-anxiety meds many years ago, however... they were Very Bad News.

Thanks for posting this - I know many people who react to wheat, but I didn't know about hidden gluten.