nettiebeads

Sounds like you're doing a fine job, mom!!!

I've never had a "formal" test for my celiac. I had the BIG D (gassy, foamy, float and gross smelling) for six weeks, went to my dr, was put on the gluten-free diet. Immediate relief. At the follow-up he pronounced me celiac and was sent on my way. That was 10 years ago and all the drs since haven't bothered to refute the dx because of lack of testing. I know what my body does after being glutened and that's good enough for me. You feel better off gluten, have bad physical problems when you eat it - voila celiac. I wouldn't knowingly ingest gluten now for anything. The affects are just too hard for me to handle and I so love feeling healthy.

Annette

Hope you're better this a.m. Sounds like you got glutened big time. Don't know about all of your symptoms, but it does sound like it was a shock to your system.

Annette

Hi, I was wondering if anyone has tried Senekot for chronic C. Is this safe to take on a daily basis?

Or, do you have any other suggestions for this problem?

Thank you!

My mother used to use it a lot. I have two regimines. One is dried apricots and raisins every day. That usually works pretty well for me. If things aren't going well, then it's Citrucel. Usually two tabs in the a.m. get me going. If not, then I take two more at night and then two the next a.m. That's almost always done the trick for me. Of course, there's always milk of mag - but that's a last resort.

Hope that helps.

Annette

I do not know the difference between being celiac or gluten intolerant. Therefore I cannot answer that, however, sounds like you are definately on the right path!

Can anyone clarify the difference?

Where's Tarnalberry when you need her? Does there really have to be a difference? The diet is the same, and some have surmised that the amount of damage is the deciding factor. I don't think I had much damage when I was dx'd by diet challenge alone after 6 weeks of D. But that's the only test I had and I so won't ingest gluten knowingly for any other test. gluten-free is the only answer to either dx.

Annette

I appreciate this board soooooo much! It has been so helpful.

I have invited my mom and husband to visit the board and also do some research on the subject before they send me off the the insane asyllum. They use the old excuse "you can believe anything on the internet" or "you can look up anything on the internet and believe its you".

I know this is it, although I have not been officially diagnosed. I am thinking about doing the enterolab gene and stool test.

I'd go for those tests. People who have had them are nearly 100% satisfied. The regular clinical tests have too high of a false negative rate to be as reliable as enterolab. Plus many of the more forward thinking dr.'s think that go by your body's reactions to gluten - on and off - is the most reliable test. It's called the diet challenge and is a reliable dx tool.

There are websites from (gasp) the NIH - national institute of health and NIDD National intitute of digestive disorders that are (bigger gasp) government sponsered. If your relatives and dh don't want to believe them, then THEY have a problem. WE believe you so you have lots of people on your side already. It's hard to for lay people to think that a pill WON'T help but a change in diet will.

Keep us posted on your progress!

Annette

Anybody do aerobics classes, step, dance/salsa, jazzercise, whatever, and have a good shoe recommendation?

I used to do a lot of aerobics, but it's been a while and I currently only have running shoes so I need to get something mor appropriate for aerobic/dance.

Any suggestions would be much appreciated

I won't promote a specific brand or style, as each person is different. Look for cross-trainers and shoes made specifically for aerobics. The heels on the running shoes have too much of a flange to facilitate the lateral movements used in aerobics. Good support and cushioning is a must. Your better brands cost more, but well worth the investment. Try lots on, (try the salesperson's patience - just don't "settle" for one that will work). Me, I swear by New Balance, but even then I try on different styles since they are different. Nike is good too, but then I have a long skinny foot and the lasts of these two brands seem to suit me fine. For me, Reeboks are out.

Hope this helps some.

Annette

was reading thru there gluten free list, wow lots of good stuff thats gluten-free. noticed that none of there instant rice packs have gluten so does this meen no cc risk? anyone had any cc problems with the company before? i was thinking maybe cooking up the rice noodles to go with my pork tomorrow night something diffrint would be great like that

Had some not too long ago - yummy and no problems for me.

Because you're human. Maybe a little bit of denial? I was dx'd nearly 10 yrs ago by diet challeng alone. That was good enough for my gp then, and no other dr's have questioned the dx since. (except one internist that I don't see anymore) Do the diet challenge. If it works and you start to feel better, you'll be able to stick with it easier. It's the first step that's the hardest with it. But you know that we'll all be here for you. And doesn't your family deserve a healthy parent that can do things with and for them? And don't you deserve to be as healthy as you can be to enjoy life more?

Annette

I agree with Plantime. The biopsy has been considered the "gold standard" but too many false negatives abound. Some of the more progressive thinking drs are thinking that the best determination of celiac disease is how one's body reacts when gluten is removed from the diet, then introduced briefly about three weeks later. In other words, the diet challenge. The gluten-free diet is hard and scary at first, but after awhile it'll be second nature - and you'll love having your health back!

Keep us posted and please feel free to ask any questions on this board. There is a wealth of information and experience here.

Annette

Verner's is good too. I drink that when my stomach is bad.

Annette

Just out of nowhere I started to cry over having Celiac, just because earlier I looked in the fridge seeing 2 of my favourite foods that i cant touch ... this is the first time this has happened in a LONG time ... and i feel like an idiot

~lisa~

Why should you feel like an idiot? You're a very normal human being that has a disease that is so not mainstream. It's frustrating at times. After nearly 10 years of this, I'll still look in the pantry and just want to give up - same ole same ole and I don't want to spend outrageous prices for something yummy or cook from scratch. At least this forum is a safe place to vent and find out you're not alone.

Annette

Glad to give you a listen and a cyber hug. What you're feeling now won't last forever. It's just getting through it that's so hard. I tried to get off of my antidepressent (zoloft) but I couldn't. Period. But I sure can relate to the adjustment part and of course the depression caused by glutening. Whenever it happens to me, I'm sure I'm the most horrible person in the world and can't understand why my husband could stand to live with me. But it passes. Just take it one day at a time, or even an afternoon or evening. Do something that always makes you feel better - baking, reading, watching comedies, anything. Think of it as recovering from an illness like the flu - I always take time to indulge myself then. You can get back to the daily grind of chores and such - they'll wait for you!

Take care and hope you're better soon.

Annette

I had a bad reaction to it, and I tried to find out afterwards of it was gluten-free but I couldn't find out for sure.

As the product is made from 56 or so herbs and spices, no telling what set off your reaction.

Yes, celiac can really suck! But she has got to realize that gluten is POISON to her body!!! Does she want to get pregnant in the future? Untreated celiacs have a higher miscarriage rate than the general population. Does she want to be healthy when you both want to do things, go places, have fun? She can't if she's miserable. It'll take a while, but she must learn to associate her favorite binging foods not with the taste and mouth satisfaction, but with the reality those foods cause---Bad stomach, pains, crushing fatigue, brain fog and all of the negative stuff that last for days, a week or more. It takes either maturity or a desparation not to ever feel so sick again.

Annette

We just went gluten-free with 3 y/o ds. This could just be a coincidence but a day or two after we started he had a fever for a couple days and selpt A LOT. It's happend in the past where he'll get a fever, no other symptoms and then after a few days he'll be back to normal. His eczema had a big flair but dh and I thought it might be due to the sudden rise in humidity. Well, after the fever was gone his eczema was gone too. Could this have anything to do with starting gluten-free diet?

And one more question: I know everyone is different but how long until we know if it's working/not working? We have seen slight improvement in his D. Not just brown water anymore, but clear water with other "stuff" in it. Still very stinky though.

TIA

Well, the fact that you notice a difference in his D would seem to indicate it's working. I would feel slightly feverish when glutened - it probably throws the immune system out of whack. Just keep up the gluten-free diet - change is based on many things - how sick, how long sick, degree of damage, and how totally gluten-free the person really is. Watch out for hidden gluten in meds and toiletries and always beware of cross-contamination.

Hope you guy is well soon!

Annette

Does anyone know if Jagermeister is gluten free?

I'm sure it is. It's out of anise seed which gives it the licorice flavor.

Hola,

First time logged on here. In anyone else's experience has there been a direct correlation (connection) between extreme fatigue, nausea, stomach pain, and flu (or cold like) symptoms without a fever? Or sleeping a full 10-11 hours and still not feeling rested or refreshed? My girlfriend is celiac and I'm still learning about it all to make to it easier for her. We can't tell if all of those symptoms are just part of having Celiac's or if she keeps getting into gluten some where or if it could residual effects of a gluten-binge from over a week ago? Any advice, information, etc. would be much appreciated! Thanks in advance!!

Oh the heck yes!!! By the way, you left out brain fog. Everybody's body is different and reaction times vary from person to person, and even in the individual. Get some L-glutamine in the health section of any store - it promotes healing of the intestine. But be sure it's gluten free, of course. But for the most part, the after effects just have to run their course. Make sure she's getting a high protein diet - 50 grams or more of protein a day. Give her some good multivitamin/mineral supplement. Remember, celiac causes malabsorption so while gluten causes damage, the body can't absorb what it needs to heal itself. It's a pretty good double whammy. You didn't state when your g.f. was dx'd or how long she had been sick before she went gluten-free. And has she gone through her meds and toiletries? Gluten is hidden in very many places.

I hope this helps some and she's better soon.

Annette

I sure hope that's true. Not that I'd go back to full fledged gluten eating, but if it would protect against the accidental glutenings I would be thrilled!

Does he know about the Triumph dining cards? They have been a big help to me. And there are restaurants out there with gluten-free menus. Celiac isn't a death sentence when treated properly; but food is such a social event that I understand both sides of your problem. I'd like to eat out more-but my hubby is an ex-chef and doesn't like to spend money on a dinner that he could have prepared better and cheaper.

Annette

My symptoms have changed over the years; at least the physcial ones. I used to get D - you know the special kind of D only celiacs have. But for the past 4 years or so it's been the C - severe enough to have to use MOM at times. But Citrucel is very effective for it. And I've found that bananas, rice and cheese really bind me up when before they were never a problem. The other symptoms - brain fog, fatigue and such are just the same. You do experience changes because of child birth and also because of age.

Annette

They are good! They taste just about like the real thing, and they are very crispy right from the oven.

Yep, I discovered them too! A Seasoned product that's SAFE!!!!! Even my husband, the ex-chef, highly approves of their flavor.

What the blazes is going on with me?? Am I gluten and lactose intolerant?

I'm going to try eating a bagel tomorrow to see how I feel...I wonder if I shouldn't cut out all dairy as well and see what happens?

Like I said...this is soooo insane....all I want is to feel good. I'm too young to be this old!

Laura

Why are you going to eat a bagel?

No horrible consequences. Could be all positive. I don't understand their thinking - There lots of medical conditions regulated by diet - not just diabetes. And believe it or not, I read where the newest thinking is that if your body responds positively to the gluten-free diet, then do it. I personally wouldn't wait until you got the results. Go gluten-free now as of this minute. See what happens. It sure couldn't hurt!

Annette

sorry, I'm with the others... who would want to eat fish out of a can. But, of course, I'm on the coast, but you can get fresh tuna, salmon everwhere....cannned stuff is aweful.

Oh rub it in why don't you!!! I'm in a land locked state, in the middle in a small town in fact. I have to drive 2 hours at least to get something flown in that day. But I've never had a problem with Chicken of the Sea tuna in water.

Annette