More Ranting About This Horrible Disease..

[Felidae]

I know how you feel abput christmas. My dad is the best baker, and I won't be able to eat any of it. I find it tough to go to my parents house because I have to bring my own spices and they now cook very carefully for me but I still get sick when I go there. The holidays will be difficult. But on the bright side I saw a gluten-free stollen (a kind of christmas cake) recipe on-line.

[Guest BellyTimber]

I identify with Skoki Mom's remark about the logistics.

I've spent the last four hours snacking on some crackers I found sticking out of a bowl, under lots of other stuff, to use them up, and hazelnout-chocolate spread with far trade ingredients while mentally trying to "psych" up to roasting some veg (I don't know if I will though).

I get afraid of running out of gluten-free-WF things and haven't sussed the shopping routine properly after 3 years of this.

I wasn't diagnosed with celiac disease as such but it's obviously that sort of thing.

My nerves were always affected by the gluten and wheat as well as, towards the end, abdominal pain. As to digestion I've had a dodgy 3 years (possibly stress-related migraines) but my nerves have not been as bad as before.

Donna among others will be interested to know that I bought several display units and am now turning the flat round and with the help of an occupational therapist shall shortly be placing the pots, pans and unopened foods in a pantry area within my living room and reserve the "kitchen" (very small) for food preparing and opened foods.

Each of us goes through something different but if you keep coming back Jane you will find different experiences among various people that are near to yours. As to "ranting" our friends will no doubt remember my first few dozen postings!

It's so good to have them here to share burdens with.

Keep listening to your body, in time (I don't know how long) you will begin to know various things it's telling you.

And some people adjust totally in weeks or months but I don't mind taking years.

I'm single but like many others this year was my first holiday away in years because of lack of confidence in catering.

[fisharefriendsnotfood]

Hi guys. I just read over my post again and now I feel really bad about what I wrote. I didn't mean to hurt anyone - I can understand how hard it is for the newly diagnosed. I'm very sorry to anyone I offended!

Many apologies,

Jackie

[skoki-mom]

Hi guys. I just read over my post again and now I feel really bad about what I wrote. I didn't mean to hurt anyone - I can understand how hard it is for the newly diagnosed. I'm very sorry to anyone I offended!

Many apologies,

Jackie

<{POST_SNAPBACK}>

Jackie,

I for one was not offended. I see from your other posts that you are young, and have probably lived with this for most of your life. In a way, you are lucky because you don't know any different way to eat. I'm not saying you are lucky to have celiac disease, because it must be hard for a teenager at times to be different. I'm sure there are times you just want to eat like your friends. For us old fogies, it is very hard to change something like what you eat. After all, it's something we all do at least 3 times a day. If we don't eat, we die! Food is so much more than just nourishment, and not just in our culture, but in all cultures. It's the way we comfort and soothe ourselves, it's the way we give and receive hospitality, it's a lifetime (in my case almost 36 years) of loved ones gathered around holiday tables sharing in memories, both happy and sad. I remember what I ate on my wedding day (couldn't have that now!), I remember what I ate at my baby showers (couldn't have that now, either!), I remember all the things I used to cook for company at my home, my "specialties", well, I could still cook em but I can't eat em! There is a true psychological element to this that is really hard to deal with. I have been in church 3 times since I was Dx and every time I am there I can't help but cry when I realize I will never again take holy communion with the rest of my Christian family. Life is a long road of experiences, I know you meant no malice in what you wrote! ((hugs))

[ianm]

Actually I agree with what you said. I think we spend WAY too much time obsessing over food. We use it as a comforting tool when it is really just fuel for our bodies. The more interests you develop in other areas the less you will obsess about food. I know that when I have nothing to do I tend to gravitate towards the kitchen.

[skbird]

I can identify with both sides of loving foods. I used to be the most food obsessed person I knew. I love to make food, eat food, dream of food. I was not heavy or anything, was not an overeater, but just loved the romance of it all. When I started having food problems I got depressed. I have had to start eliminating foods for 6 years now. When I lost gluten, I was really sad at first because most of the other dietary restrictions I'd had before then were ones I could cheat on, except the nightshade one. But this one is different.

Now that I have been living with it a while, I have found new ways to be passionate about foods. I have also discovered many foods I was "in love" with no longer appeal to me at all. It takes some time but you'll make adjustments.

Yesterday we were at my mother in law's house and she pulled an angel food cake out of the cupboard to serve after our meal. Everyone's eyes lit up at seeing that cake. I used to LOVE angel food cake, would have it for my birthday every year (with strawberries and whipped cream) but I couldn't have cared less when I saw it yesterday. Now that is what I consider to be progress!

Stephanie

[skoki-mom]

I can identify with both sides of loving foods. I used to be the most food obsessed person I knew. I love to make food, eat food, dream of food. I was not heavy or anything, was not an overeater, but just loved the romance of it all. When I started having food problems I got depressed. I have had to start eliminating foods for 6 years now. When I lost gluten, I was really sad at first because most of the other dietary restrictions I'd had before then were ones I could cheat on, except the nightshade one. But this one is different.

Now that I have been living with it a while, I have found new ways to be passionate about foods. I have also discovered many foods I was "in love" with no longer appeal to me at all. It takes some time but you'll make adjustments.

Yesterday we were at my mother in law's house and she pulled an angel food cake out of the cupboard to serve after our meal. Everyone's eyes lit up at seeing that cake. I used to LOVE angel food cake, would have it for my birthday every year (with strawberries and whipped cream) but I couldn't have cared less when I saw it yesterday. Now that is what I consider to be progress!

Stephanie

<{POST_SNAPBACK}>

I can relate in many ways to losing the attraction, it just hasn't happened yet for me with food, lol!! I became allergic to animals as a teen, even though I grew up in a house with both a cat and a dog. I was horrified at my inflamed arms when I got skin tested for my allergies, and I was thinking no way would I be able to live my life without pets. I spent over $1000 (late 80's) and 5 years of desensitization shots, and then I tested more allergic than when I had started! But, by then, being around a dog, in particular, made me so ill I really didn't want to be around dogs anymore. People get offended sometimes when I won't go near their dog, but I just have to tell them that if their dog touches me, my eyes will swell shut and I just may stop breathing! I still like dogs in general, but from a very far distance thank you very much, and I have no longing whatsoever to own one!

[calexander]

I read in the previous post rant about how its not TOO terrible in the sense that we can feel basically fine by avoiding certain foods...but let me clarify...

When you scrutinize, study, fret about, worry about, are meticulous over...WATCH EVERYTHING that enters your mouth...and you STILL have bouts where you can memorize every single square inch of your bathroom...wow, its bad.  When your favorite site on the internet used to be ROADFOOD.com...and now all you can do is look at the pictures, read the stories, and go..."hey yeah, I remember what that food used to taste like, smell like..."

I was recently diagnosed in May.  I was one of those celiacs that did not feel horrible every day.  I didnt have the brain fogs, all the strange other symptoms that come alone with this crappy disease.  I just felt yucky sometimes.  Not all the time, mind you...but enough.  The only reason why I went to the doctor, was because my birthmother told me that gluten intolerance ran in the family. 

So now that its official, I have been gluten free since May 9th.  Since then, I did feel pretty good the first month.  But now...omg.  God forbid, I ingest one single micro-invisible OUNCE of gluten, I feel horrible for DAYS.  If I ingest it, I dont know where it comes from.  I eat fruit, veggies and plain meat.  The only snacks I eat, I have verified, and verified some more...that its safe.  I dont eat ANYTHING that I dont know of as safe.  I use gluten free toothpaste, shampoo.  My vitamins are organic.  I have a dedicated place in my kitchen.  I dont use the toaster, hell I dont eat anything that I would have to put IN a toaster.  I wash my hands a billion times a day.  I wash my handtowels daily.  I have my own butter in the fridge that says KEEP OUT in big black marker. 

Who knows?  And this ISNT ...a HORRIBLE DISEASE?  OMG...this is horrible.  Truly horrible.  Most people look at me, like I have 3 heads, when I tell them I have gluten intolerance.  And the summer party season, was NO picnic.  "So sorry, no, I cant eat that....err...why?...um......"  I just tell people I have a lot of food allergies.  Eating a banana for breakfast makes me gag, just gag.  I used to eat HONEYCOMB cereal. 

So here I am eating healthier than I ever, ever have....and I feel the lousiest I have ever, ever have.  A nanospeck of gluten must have been in something I inhaled, mistakenly smudged on or near my mouth....hidden in an ingredient that was mislabeled on a food product that I have surely scrutinized countless times. 

My eight year old daughter....(tested negative, thank the LORD above).....constantly tells me, "I am sorry, Mommy, that must be bad for you" in regards to everything in general.

My anxiety that I had previously.....has subsided with the absence of the gluten from my diet.  That is the ONE plus, to all of this. 

It has been replaced by anger, deprivation, frustration and the general overall feeling of this totally just stinks.

I felt better before, when I could comfort myself with a soda cracker or a waffle.  Sure....my intestines are going to heal...most of you will mention that.  But I am a smoker.  I sit here and kill my lungs everyday....to sit here and go through all of this sometimes to heal my intestines....well, its just kind of ironic to me.

I needed this...I am sorry.  I know this is more of a support group, where people band together....and I feel like the party-pooper who is just ready to disband from the group. 

Very, very very frustrated...feeling lousy physically today..

Jane in Chicagland...who is approaching 40 on Saturday...and maybe thats what brought this out...

Any other people out there who didnt get diagnosed until midlife when they were truly set in their ways, and got thrown for a loop?

<{POST_SNAPBACK}>

Hi Sandyshoes,

I was so glad to read your email. I guess misery loves company huh? I was just diagnosed about 3 weeks ago. I'm almost 46 years old and have never had to think so much about every little thing that goes into my mouth. I think all in all, it's a great way to eat and to live. It's just that there are times when I just don't want to have to think about it. I really like to cook, but also there are times when I just want to go grab something out. And then it's this biiiiigggg ordeal. I think my frustration is pretty normal for someone newly diagnosed. Did you go through this at first. I've always eaten pretty healthy and been good with reading labels, so that's nothing new.

Today I had to do the lactose tolerance test at the lab for 3 hours. Since 40% of celiacs are also lactose intolerant, my doctor wanted me tested. I had to drink this chalky orange stuff and get my blood drawn six different times over 2 and a half hours. ARRGGHHH!! I had to fast for 8 hours before and then work all day before the test. Needless to say, by six oclock tonight, my blood sugar was down the drain, I was in tears, and at the end of my rope. I sent my husband and son to the movies and decided I'd better check out the message board for some support.

I'm just hoping that the lactose test comes out o.k. Otherwise it's no gluten and no dairy. Oooh Boy. Anyway, sorry to vent like this, but I'm feeling pretty discouraged as I can tell you are too. Hopefully, tomorrow will be a better day. Let me know how you're doing too. And if you have any good pointers for coping, I'd sure appreciate it. Right now, I'm coping with some Haagen Daaz Ice cream. I figure until I find out about the lactose thing, I'm going to enjoy it. It may be my last. Keep in touch.