luvs2eat

I'm the only one in my family... altho my brother or sister refuse to be tested. They have, I'm sure, the derm part of celiac and because they can take meds (for eczema, etc) they're not willing to give up their yummy breads.

My daughter was just diagnosed.

And I'm thinking that the 1 in 333 will soon be 1 in way less than 333. It seems more cases are diagnosed every day... just look at the membership on this board! It astounds me how many new folks come every day with a brand new diagnosis.

Maybe both, but definitely from my mom. I think my sister and brother had the DH form, but are not interested in being tested as there are meds for skin stuff... even tho I've explained the small intestine damage, they're not interested. Yikes!

Dang... I was hoping I'd stumbled on to why I can't lose weight... other than the fact that I EAT too much. haha

No constipation whatsoever!

I drink plenty of water... exercise (more recently)... eat 2 Viactiv calcium chews a day.

My babe of a significant other is flabbergasted that I don't go every day!! I don't give it a thought... till it's like 5 days... and then I wonder more than worry.

I've been gluten-free for 3 years. I didn't lose weight initially... I attributed that to my swift diagnosis.

I started gaining weight. At first I attributed that to eating TONS of food I was allowed to eat to compensate (in my brain) for all that I can never have again. Once I got over that... I ate more normally and continue to eat well (lots of fruits/veggies, etc).

So... my intestines that used to shoot thru whatever I ate at warp speed, have slowed considerably. Not to be too graphic here... but I can go days and days (like 3-5??) without moving my bowels... and when I do, I'm not constipated or uncomfortable at all. I just don't have to go often.

So, now I'm wondering if my food is sticking around in my intestines and nutrients are just absorbing and absorbing and absorbing and it's causing me to gain weight. Maybe I've gone from malabsorption to hyperabsorption.

Whattya think??

I'm a frozen blueberries and yogurt kind of gal. I throw the blubes in a small container and take 'em to work. After a few hours, the blubes are defrosted just enough and have kept the tiny yogurt just cold enough.

I sent her some Manna from Anna bread mixes... that's been my greatest find so far!!

Interestingly, her doctor told her she was LUCY to be diagnosed at 25 (I wondered if it wasn't like telling the bride it's good luck when it pours rain on her wedding day... ha) because she will avoid many problems in the future by going gluten-free now... like unexplained anemia and osteoporosis.

She's thrilled to hear too that more restaurants are offering gluten-free menus.

Like everyone's said... and I've said in the past... there are so many worse things... this is nothing.

The same thing happened to me after I'd been gluten-free for less than a year. I was so excited... and thought maybe I could "plan" a wicked good cheat maybe once a month.

Didn't even get to try it out though... cause the longer I was gluten-free, the more sensitive I became. Now I don't even dare try it.

I dream!! I read an article recently about a restaurant in NYC that serves gluten-free pizza and beer!

Her diagnosis is definite. Luckily she loves to cook... I swear that was my saving grace... knowing how many foods are made and what to avoid at restaurants, etc. It's an ongoing education.

I told her to get herself in here ASAP as this is where the info and answers to questions are!

Homemade risotto... gotta love sticky rice and cheese.

I've had people ask me, "Can't you just eat a LITTLE??" I tell them that I can... if I want molten acid shooting out my butt. Ha ha... it's graphic, but it makes my point.

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!!