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This Weird Seeming Life

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    Be the change you wish to see in the world!

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Posted 23 March 2005 - 06:02 AM

Like foods extrememly high in saturated fats like fast food burgers and gressy pizza's.

exactly...and things with MSG, hydrogenated oils, and so forth too.
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Positive bloodwork
Gluten-free since January 2004

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Posted 23 March 2005 - 07:13 AM

It is good to read others feel, out of the box, or question normal. I thought I was doing pretty good with my family and explaining to them what I can/cannot eat. Then my son brings over a pice of Birthday Cake and is put out because I told him I could not eat any of it ....even a taste.
My other son is planning a wedding and wants me to do the rehersal dinner (He is 25 and 2nd marriage) We just had a big row because they want me to make sandwiches, chips and make pasta salad. (Last time I make a cake I got sick I believe from the flour being mixed into the air from the mixer) I asked him to find someone else to be in-charge of it and now he is put out with me! Then my husband and I went to a restaurant and he got embarrassed when I was asking about the food! JEEZ! They make me feel like I am too focused on myself. It is so difficult just starting out and trying to not accidently injest gluten! I thought I was doing pretty well but when I went to the Specialist and he asked me if I was gluten-free he said that if I "thought" I was then I probably wasn't. If I could say I am gluten free then I have educated myself enought to know. Thought that was kind of a rotten thing to say at the time but as I read all the posts here on the site ...I believe him. When I go back I will be able to say "Yes, I am gluten-free"
Maybe this is "more than you all need to know"
Frustrated day I guess..........
Laura :(
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Posted 23 March 2005 - 07:40 AM


It sounds like your son is looking at your diet as being some kind of an "Atkins Diet" fad that you are going through. It sounds like he doesn't know or refuses to believe the seriousness of the situation and that celiac is not "just an allergy" but an auto-immune disease. What I think you should do is print off an article about refractory celiac disease and insist he read it (I used the one that is on this site, just search "refractory"). That is what did the trick for my family and co-workers.

Good Luck!
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positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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Posted 23 March 2005 - 09:24 AM

You say this is your sons second marriage. If it was the first I could understand his point of view a little. For the second one I would say he's on his own with planning and food especially if he isn't willing to understand your condition.

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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.



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Posted 23 March 2005 - 09:24 AM

You are not alone, Michael (and Laura!). It can be very depressing, always planning your diet so strictly, not being able to buy impuse foods like all your friends, and especially the business of having to put every waiter through something like the Spanish Inquisition over simple things like soups and salad dressings. It really gets me down sometimes.

In fact, the thing that eventually convinced me that I really was celiac and not just imagining it happened because I was tired of being "the weird one". I went to visit some old friends, and was having a great time when they decided they had to have some hamburgers. I hadn't had a regular sandwich in months, and I didn't want to start explaining celiac disease to the guys, and thought "how bad could one sandwich be?" because I had never had severe celiac disease symptoms before.

Needless to say, I found out pretty quickly how bad one sandwich can be after not eating gluten for a few months. I spent most of the night on the toilet with vicious pains, felt utterly terrible for a few days afterwards, and you could hear my stomach rumbling a block away. I was miserable, and realised for the first time that celiac disease could be an honest-to-god, full-blown, dangerous disease and not just an odd feeling in the stomach. That was when I knew that I had to start taking my gluten-free policy seriously.

All this is just to illustrate that, yes, I fully understand your feelings. This life often seems weird and tediously abnormal. It can be a chore, and it continually makes you feel like a freak. My daughter, who is three, constantly asks me why I can't eat bread and other things. She "gets it", and I know she doesn't really think I am weird in a bad way, but at this age everything that is out of the ordinary gets thorough investigation and repeated quizzing, just to make sure I'm not making it up.

Still, she is a lot easier to deal with than the adults who constantly ask me can you eat this? Can you eat that? What's wrong with this stuff? What happens if you eat it? For some reason, they always think they want to know what my symptoms are, and when I finally break down and tell them my symptoms (you know the things I'm talking about) they make faces and tell me how disgusting I am for "sharing".

(Tell me I'm not the only one this happens to, please!)

On the other hand, what Kaiti said is very true. The eating habits of our society as a whole are not exactly healthy, and arguably "abnormal". I don't mean to get all preachy here, but if "the celiac experience" has taught me one thing, it's that a lot of very weird, and often sickening, things hide in the food we eat. For about five years before I discovered I was celiac, I was "mostly" vegetarian (didn't eat red meat or poultry, for a bunch of reasons, including ethical, ecological and psychological ones). Even then, I did a lot of label reading, and tried to eat relatively healthy things. I often broke down because junk food is just so tempting, but the thought of all those processed ingredients and unhealthy additives always disgusted me and kept me "clean" for the most part. My friends and family thought that was abnormal, too, but to me it was a logical and informed choice.

Now that I am gluten free (mostly - I'm still learning the ins and outs of a gluten-free lifestyle), I frequently get the chance to surprise those same friends with interesting facts about the things they eat, and I like to think they've sometimes had their doubts about exactly who is normal and who isn't. Most people don't realise, for example, just how much corn syrup they drink and eat in their processed foods, or how much we use wheat as filler in things that really have no need for it whatsoever, or what kinds of things can hide in processed meat. When I point these things out to them, they are almost always shocked. Hopefully I've caused a few people to think twice about the junky drinks and foods that they buy on impulse, and maybe try for a slightly healthier, "purer" lifestyle.

I like to think about that when I'm feeling especially depressed about always having to plan ahead, check the labels, and ask servers detailed questions about the food they give me. There's nothing wrong with eating a banana instead of a candy bar, or a salad instead of a hamburger. It's better for me and it just might be better for our society and our planet.

(Yes, that was me being not preachy... B) . I'm terrible at it, aren't I?)

-- Jeremiah
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