luvs2eat

Thanks for the info, celiac3270, and you're right, of course, Viola... it's just that I hate to see my kids go thru what I've gone thru... and on the other hand... I've said in other threads that, given the horrors that can happen to people on any given day ... this is nothing.

Her endoscopy looked negative. The biopsy will tell... or will it?? told her she should really come here and read the wealth of information. She'll have to choose to continue with the physical symptoms or go gluten-free. She's in a quandry at the moment, even knowing about the higher change of small bowel cancers.

My only real symptom was diarrhea (foul smelling and with undigested fat...sorry to be graphic) ... unrelenting for 2 months and maybe occasionally before that. Also, after I ate, I'd sit and listen to what sounded like a tornado in my belly... no pain... just lots of noise.

(edited to add that when I saw my GI for the first time, he asked me if I had any acid reflux and I told him occasionally, but it was always self-induced... from eating too richly or too late in the evening... BUT after I went gluten-free... guess what never happened again??)

My doc treated me for giardia (parasites) while we waited for the bloodwork... that was SUPER positive!! I never even had the endoscopy... I just went gluten-free that day!!

My daughter has the same symptoms... recently unrelenting diarrhea and the other fun aspects. Her blood work was "inconclusive" which I now understand to be in the middle of 3 categories... the first being negative, the middle being inconclusive, and the last being positive... so inconclusive does NOT mean negative.... she has some elevated antibodies.

She's been pushing the gluten for this test (on my recommendation... her doc didn't say a word).

Tonight she's having "blue box mac and cheese" in what I'm certain will be a farewell to gluten!

My middle daughter is having an endoscopy tomorrow... her bloodwork was inconclusive... altho from her symptoms, I'm certain she's a Celiac.

Of all the things to pass on to my kids!!

One got my acne and fibrocystic boobs, one got my tendency toward pilonidal cysts, and the one who loves to bake bread, just like her mother, gets the Celiac. I was really hoping the dilution of their father's Russian/Polish blood might spare them.

How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

I'm sort of going thru the same anguish I did when I was diagnosed 3 years ago!!

I seem to be becoming more sensitive as I remain gluten-free. But it really takes a clear glutinizing for me to feel unwell.

I never felt really poorly... just had unrelenting diarrhea and such a noisy belly, it used to make us laugh!! I was a huge gluten eater!! Making different breads was my fav baking time.

The longer the diarrhea went on tho... it was beginning to feel like ACID shooting out of me (sorry for the graphics), and as I've said on here before... it took an entire year for all to get back to normal.

I bought this nifty "as seen on TV" knife that has a dial to dial the thickness of the slice I want. I got it at Bed, Bath, and Beyond for only about $4.00. I make my Manna from Anna bread and wait till it's completely cooled. Then I slice the entire loaf and put 2 slices in each zip-lock bag and freeze.

Make him come into the bathroom with you after you've been glutenized! That'd make a supportive person out of anyone who was with ME!! haha

Oh my, Jnkmnky... all those sound wonderful!!

I always brown bag it too... or pick up salad at the salad bar at the local grocery. I make Manna from Anna bread and slice it into slices when it's cool and freeze it in 2 slice bags. I toast it and make awesome sandwiches to pack... or I just roll up meat and cheese to dip in a little salad dressing or mustard. I often take a container of whatever was for dinner last night and microwave it.

Check out the microwavable packages of red beans and rice (and others) by Zatarains in the grocery. I like those too.

I've had those lovely moths in flours and corn meal. If you bring any flours home from the store and put them in the freezer for 24 hours, you'll kill any of the little "wormies" that turn into the moths and then they should be fine on the shelf for a while.

Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

He tested everything blood might tell him and examined me, asking questions about every single system to determine that my only symptom was the slightly elevated ANA.

His explanation of an autoimmune disorder was great! He told me my body was like a country (I asked him if that was some kind of FAT joke??? ha) and my immune system was my army, poised to fight off any invader (disease). But sometimes when there were no diseases to fight, the army got restless and began fighting amongst themselves... and this internal fighting is an autoimmune disorder.

Anyhow, I see him now once a year, he asks me 1,000 questions, I say "no" to every one (cross fingers it's always that way!) and I'm on my way!

Thanks for the input on visiting your GI everyone!

I read about everyone's doctors... and wonder if I should be seeing my GI on a regular basis. To be honest, I saw him exactly twice... once to be examined and schedule my blood work and again to have my colonoscopy. He told me then that he had good news and bad news.

The good news was that he knew what was causing my unrelenting diarrhea... the bad news was that I couldn't eat gluten anymore. This was from my blood work alone.

As a (former) nurse and one who's cooked my whole life (I was 49 at the time), I was able to find good food lists... I went gluten-free that day and wasn't often accidentally "glutenized." As I saw steady improvement (I've mentioned before that it took almost a year for my bowels to get back to what I considered normal) I've not found it necessary to go back.

I've been gluten-free for several years and I'd be hardpressed to submit to a gluten challenge to have an endoscopy. Is there a reason to keep seeing the GI doc?

OR... is seeing the rheumatologist once a year okay? About a year after going gluten-free, my blood work showed a high ANA titre... so I had to have almost all my blood removed to rule out Lupus. I see the rheumatologist once a year to repeat this bloodletting and have no Lupus symptoms or elevated anything in my blood. Of course we talk about celiac disease in our discussion of autoimmune stuff.

What would you do if you were me?

Count me in on the Manna from Anna fan club. I make a loaf once a week in my Kitchen Aid mixer and let the loaf cool completely before slicing it and freezing the slices in zip lock bags (2 slices in a bag). Then I toast them for the most awesome sandwiches. It is BY FAR the best bread I've had since being diagnosed. I also buy 2 cases at a time.

www.mannafromanna.com

That rat poison example is a really good illustration to explain the gluten-free diet...

It's a pain to have to ask all the time what's in stuff... cause it seems to me 9 times out of 10, there's something in stuff that I can't have when we're at friend's... and it makes THEM feel so bad.

I hope you feel better soon too!!

My heart goes out to you... as you have access to the best, most delicious bread on the planet... and you can't eat it!

I'm certain that my sister, who also lives in France, probably has wheat issues (more of the skin rash forms) but she's not willing to give up her french bread when she can take medicines for her skin conditions!

Give it more time. You will feel a difference. I've said before... it took a whole year for my bowels to return to normal. It was way less before that terrible bloating and gas subsided.

Good luck!!

Sometimes I don't cope so well and get really mad about not being able to have that pizza... to add insult to injury... I didn't eat pizza for 17 years cause it was the ONE food I couldn't even smell when I was pregnant. I finally started eating it again years after kids ... had just discovered Pizza Hut's pizza with the crust stuffed with cheese, when I was diagnosed.

OUCH.

Like others have said, you do find acceptable and then downright tasty alternatives, but let yourself be mad occasionally. It IS a lousy deal of the cards. Lucky for us, it doesn't have to be life-threatening.

By the time the hospital nutritionist called me back, I was giving HER information. Like other have said, I was one who loved to cook for many years and knew a lot about what goes into foods and recipes.

I went to a program at our hospital and was so surprised to see so many Celiacs in the room. This dopey woman spent an hour pushing her "feng shui" business and how our intestines would feel so much better if we embraced her "life wellness" crap. She fed us some really crappy gluten-free brownies and handed out a "forbidden foods" list. I left at intermission... but not before telling some people around me about the sources of info I'd found already.

I went home and wrote to the program director and asked, "Now, who's been diagnosed with celiac disease who doesn't ALREADY have a forbidden foods list??" Not to mention, I have way more detailed lists than she handed out!! They refunded my money!! I wasn't the only one who complained!

Wait... maltodextrin in foods manufactured in the U.S. are always gluten-free??

Yea, I had that conversation with my friend who has diabetes and just shoots some more insulin when she eats stuff she's not supposed to. I told her that there is no "shooting" for me. A little cheat results in MOLTEN ACID comin' out my butt... it's not worth whatever's being served!!

Sorry BamBam... I've not been in here for a while.... I did answer you via email, but for anyone else... I use the English muffin rounds all the time. I found that you can't HEAP the mix in there or you'll get a huge roll all puffed up at the top. I put in a heaping spoonful of mix and spread it so it's pretty flat across. It rises to just the right height and one mix makes about 12-15 rolls.

I cook 'em for the minimum time on the package and just watch them till they're nice and browned. When they're all cool, I package 'em up in zip locs and suck as much air out of the zip loc bag before I seal 'em up and freeze them.

Enjoy!

When I was newly diagnosed, I often took them twice a day. My doc told me they were not habit forming and to take them according to the directions on the package for as long as I needed. I didn't need them too long, but I too have bottles and packets in old pocketbooks and cabinets!! haha

Man... am I in the same boat... to the tune of about 25 pounds!! I started making the yummiest homemade risotto... who doesn't like cheesy, sticky rice??

I don't even want to FIND gluten-free goodies on the shelves!!

I'm a HUGE fan of Manna from Anna bread mix. I make it in English muffin rounds and have awesome rolls for sandwiches. It holds up better than any other bread I've tried!

I too feel your pain. I miss bread... homemade bread, made from flour, water, yeast, and salt... not 50 obscure ingredients that end up with each slice weighing a ton and so crumbly that it can't hold a sandwich!

I miss cracking open an ice cold beer.

Like my friend says... just cause the neighbor has cancer doesn't make your toothache hurt any LESS.

In the scheme of things... celiac disease is nothing... but I still miss bread and beer!!

Giving up the beautiful yeasty breads that I was so fond of making at home has been the HARDEST for me... so I feel your pain.

I'll have to echo an earlier poster. I'm a huge fan of Manna from Anna bread mix (www.mannafromanna.com). I've tried probably every store bought bread and 5 different bread recipes over the last 3 years and find them all gritty and they don't hold up well at all! Manna from Anna is great... but I still miss my wonderful homemade bread. There really is no substitute.

I recently used potato flour to make a white sauce (butter, flour, milk) and it was very good. The flour required was a small amount, so I'm not sure about substituting it for something as substantial as bread.

Bette Hagman's recipe for a good flour is not equal parts. Not sure what the amounts are as I don't have the book in front of me... but I do know there's a "recipe" for her usual flour.