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Hard Time Coping


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27 replies to this topic

#16 Canadian Karen

 
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Posted 24 August 2004 - 07:14 AM

Hi Charlotte,

I just also wanted to mention that I get the feeling that you think that your intestines are so far damaged that they are beyond repair, so why bother now.....

I have read many posts here from people who have literally been at death's door before their celiac was even discovered, and once going gluten-free, their recovery was amazing.....

It is never too late.......

Karen
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Karen

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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

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#17 sunflower

 
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Posted 24 August 2004 - 07:23 AM

Gretchen,

You're welcome :)

This was the best site about additives that I managed to find. However, they do not specify ingredients that can possibly contain gluten or dairy (this is what I actually looked for). I even wrote to them with a suggestion that if they update the site in the future, they might consider the matter of gluten and dairy intolerance. They wrote me back that their site is based on a research of some scientist who has not published any updates yet, so they cannot update the site, either.
Still, I think that the site is very informative :) (although it did make me loose appetite for most processed stuff...)

Anna
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#18 tarnalberry

 
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Posted 24 August 2004 - 07:33 AM

I was a little surprised, on the additives page, to see "amaranth" - and note that it's "banned" in a number of countries. as a grain (well, botanically not a grain, but as a whole food) it's generally considered to be quite safe, and has been consumed for ages. I imagine they're referencing an extract of it, but it'd be nice if it were clearer.

not to mention the potassium nitrate that they warn against - which is the ingredient used in toothpaste for sensitive teeth, and the guar gum they warn against.

and I gotta love the mistake on the unnumbered list: next to casein, they list that celiacs must avoid it because it's structurally similar to grain gluten. _that_ I certainly haven't seen backed up in other research!


I don't mean to just take shots at the list - I appreciate you posting it, but I think it takes a bit of an alarmist view, to a point, and needs to be tempered in the reading. It does serve as a good collected source of some information though, which is better than anything else I've seen about additives so far.
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#19 clanning

 
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Posted 24 August 2004 - 11:12 AM

:D Thanks to all!! I've been out buying gluten-free cookbooks etc. I told my husband that we were having a total gluten-free supper tonight. His comment was "no were not, I guess we will have to go out to eat and you can stay home." :angry:

I do sort of feel as thought my gut is shot but I've been told it will take A LONG time to repair the damage and it will not be 100%.


Charlotte
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#20 terri

 
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Posted 24 August 2004 - 11:24 AM

Charlotte,
The trick is to never tell them you're making a gluten-free meal! They will never know, believe me. Wait for a month or 2 then let them know they've been eating gluten free if you want to. I think just the sound of it scares them. Bake them cookies but use Pamela's mixes and they'll never be the wiser. I served our company homemade bread I made from a gluten-free Pantry Mix, spaghetti with fresh mushrooms, onions, garlic and turkey sausage (shadybrook farms) and Classico spaghetti sauce, and Tinkiyada rice noodles. After dinner I asked if they could tell it was gluten-free bread or noodles and they were shocked. They couldn't taste the difference at all and kept raving about the bread. All you need to do is research the brands and use the ones that are gluten free and continue cooking as you always have. Don't give up. You are worth it!
  • 0
Terri
Northern Virginia

gluten-free since March 27, 2004

#21 sunflower

 
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Posted 24 August 2004 - 11:54 AM

Tiffany,

It's funny - I looked at the site again to see that about casein, and I am not sure if I saw that page "Unnumbered" last time I checked (well, about a month ago). So either they are doing some updating, or I missed it at first (though I'm pretty sure I haven't seen celiac disease mentioned there before). Well.

Out of curiosity, I googled "casein"+"similar to gluten" and I did get some results of other pages where it is written about similar molecular structure of gluten and casein, too. I haven't heard of that either, which does not automatically mean it might not be true. I don't know everything. Regardless of the molecular structure of casein, I think that the sentence saying that celiac people must avoid casein as a rule is wrong. As for amaranth, Wikipedia (http://en.wikipedia.org/wiki/Amaranth) says it can mean a few different things, among others "a general term for all members of the plant genus Amaranthus " and "a dark red to purple dye once used for colouring food but now banned by the FDA". It does not say that those 2 things are connected, which is good, because I love amaranth :) As for the other additives, well, there is quite a lot of them, so googling each one might be time consuming ;).

I've never been good at chemistry - that is why I looked for this kind of page! ;) This is the best one I found so far, compared to other "E" lists which give just the "E" number and its chemical name, which is of course no information for me. I'm not saying that it is the best one that exists or that it does not contain any mistakes for sure. If anybody finds a better one somewhere, I'd love to compare.

I think your attitude (not taking anything for granted just because somebody made a Web site about it) is reasonable. A recent example, which has nothing to do with celiac disease: I googled the word "khamsin" to check when exactly it blows. Some pages told me that khamsin is a strong east wind, some that it is a strong west wind, some said it can blow March to early May, some that it blows late March till mid-April, some said it blows in April. The only thing they certainly agreed on was the fact that it is indeed a type of African wind that carries lots of sand. :P This just shows how you can find backup for almost any theory you can think of, if you search the Web for long enough :)
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#22 crc0622

 
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Posted 24 August 2004 - 12:39 PM

Oh, yeah, Charlotte - never tell them!! There are quite a few of the gluten-free mixes that are great. I requested that the commissary get some gluten-free stuff (I'm a Navy wife) and they had them in about 3 weeks - 6 different kinds. They are actually pretty good and I'll bet your family would never know!
If you ask at your grocery store, I'll bet they'll get you some mixes and things (and in far less time than it took on base!). There are quite a few brand names - Gluten-Free Pantry, 'Cause You're Special, Pamela's - - there are others. I have seen the Bob's Red Mill gluten-free Flour Blend and pancake mix in the SuperTarget. (Make sure they are gluten-free, thought, because Bob's makes non-gluten-free stuff, too.)
Start looking around and you'll be surprised what you can find. My local grocery store (Publix) also has several gluten-free cereals. Look in the organic or specialty foods section. Also, in the Asian foods section you can find rice flour, rice crackers (wasabi flavor is yummy) and the Thai Kitchen noodle packets you add boiling water to. This is just an idea of some stuff you can get in mainstream stores. It is a pain to have to drive all over town.
I have mail-ordered from Gluten Free Trading Company and there are places you can get bakery breads, cookies, etc. too. Read as many posts as you have time for! I spent hours on three forums for a couple of weeks after diagnosis and I already feel like an old hand, just 7 weeks after dx! You can do it!
Celeste
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#23 tarnalberry

 
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Posted 24 August 2004 - 01:07 PM

clanning, I would encourage you to have a heart to heart with your husband. if your doctor told you that you could end up DEAD in three years and your husband is STILL very unsupportive, it seems that something else is going on here. it may help him if he can understand that this doesn't mean he has to be strictly gluten-free, only that what YOU cook for the family (or yourself) will be gluten-free, and that he really won't notice much of any difference (except maybe an improvement!). he may be afraid of what he thinks will change, only because what he envisions isn't true!

please talk to him, though. and maybe have your doctor write him a note. you're going to need some moral support in this!

(and if they still insist on eating out, make the tastiest dish in the gluten-free world, and let them see a smidgin of leftovers, and tell them too bad they didn't want your food! - hmm... maybe it's a way to keep all the flourless chocolate cake to yourself?! ;-) )
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#24 clanning

 
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Posted 24 August 2004 - 03:42 PM

:D I made someone's recipe for gluten-free Kung Pao Chicken IT WAS AWESOME!!! Even my husband liked it. The other kids are eating it and liking it as well. I haven't told them it's gluten-free.

After reading the cookbook I'm getting my son tested
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#25 Canadian Karen

 
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Posted 24 August 2004 - 04:27 PM

I am so happy you have found out that gluten free cooking can actually taste good!!! You can do this! You are only 37 years old and have decades of happiness ahead of you with your family! Make it happen!

Hugs.
Karen
  • 0
Karen

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......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#26 Littlewolf

 
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Posted 24 August 2004 - 05:10 PM

You wouldn't want to deprive those 7 of a good, long life on your part.

If possible, unless someone mentioned this and I missed it, try to spend a little time each week planning out your meals so you know. If you use gluten-free mixes for cookies and bread. . or a bake mix, mix up a big batch of it so it is always on hand if you need to make something quickly. You can store it in ziplock bags.

I suggest shopping for food at the Gluten-Free Pantry <http://www.gluten free.com/> which delivers food to your door. We have tried the pizza and coffee cake and you would NEVER know the diffence between it and food with gluten in it.

Don't give up!
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#27 lilliexx

 
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Posted 24 August 2004 - 07:47 PM

as many others have suggested try tinkyada pasta! i made a lasagne the other night and it was sooooo good. my son had no idea anything was different about it!!

for asian dishes try tai kitchen. they have a lot of curry sauces and mixes that are gluten free.

in time this will get easier!! when you start feeling better you will realize that its worth it!!
  • 0
Gluten free since July 2004

I have made it one year and feel much much better!!!!!!!!!!!!!!!!

#28 terri

 
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Posted 25 August 2004 - 04:59 AM

Did you make the recipe on the lasagna box? I'm thinking of trying it. I made the Tinkyada stuffed shells with my pre gluten recipe and they came out great!
  • 0
Terri
Northern Virginia

gluten-free since March 27, 2004




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