nettiebeads

I really appreciate your comments - and would love to hear more! Please help me get back on the right track and be more educated in a topic, though I've had forever, I am quite ignorant about.

One thing that's starting to make sense to me after reading more - my exhaustion level. I thought it was just from being a mommy, wife and working a couple nights a week waitressing that was making me so tired and down right lazy. But maybe it's because since giving my daughter gluten (we kept her off it till she was 1, just in case...so far so good though) I've cheated more (and cheated more from working at a restaurant)...so that could be causing my tiredness. Right?

You HAVE GOT TO STAY gluten-free!!! I didn't, even though I knew better. I was eating cereals with malt flavoring and drinking Smirnoff twists and other malt beverages. I wasn't having reactions like I normally did when I ingested wheat. But I developed neurapathy - felt like I was walking on stumps every morning. My face was numb and was having other problems. It wasn't until I joined this forum in Aug 05 that I learned what I was doing to myself. I finally cut out ALL gluten (except for accidental cross-contamination) and have been on the straight and narrow ever since. Boy, what a difference. I was having such brain fog that one morning I was sitting at my computer at work and couldn't remember how to do a routine function on my software - and it's the same program that I've used for 5+ yrs! But now I'm back to multi-tasking, (but not as much as before) and can work out and go home and work on projects, clean, cook or in other words be normal (well, as much as I can, for me ) So, even if you don't think you're hurting yourself, you are doing damage. And you owe it to others around you to be as healthy as possible and to take care of yourself for yourself and those who love you!

Take care (I MEAN IT)

Annette

If she's your friend, then why wasn't she more concerned for your health? Some people would rather remain ignorant. It's easier for them.

Try the triumph dining cards. It'll help.

Annette

I keep meaning to order these, but I haven't gotten around to it

I have been diagnosed with celiac disease for almost two years now, I share the same frustration that many ppl with celiac disease have. Eating out, parties, conflicts with family meals and such; but it seems to get become almost boring trying to explain myself every time I go eat something. Yes, it is gluten-free, no I did not eat any chips and so on... I understand some ppl that I am close to have concerns, but it becomes very tiring. I was just wondering has anyone ever felt the need to just giving up? I am to the point where I do not care anymore. It is my body, my health, not theirs... Then again that almost sounds mean... Right?

oh yeah. Been there many times - so tired of watching, worrying, cross-contaminated... I was at a seriously low point when I found this forum. It's been helpful, especially knowing that there are so many others in the same situation. Keep at it - you are not alone!

Annette

Annette,

I am french-canadian of mixed origins, probably some first-nation heritage and some scottish, Irish and French mix as well. Also - my son had severe colic for his first 4 months, when I cut starches and dairy (breastfed him 12 months), it went away. Could he have celiac disease also?

Hello,

I have not been on the message board lately, and was so glad to see posts about St. Louis restaurants. There are two other restaurant chains that have a gluten-free menus. The first is Carrabba's Italian Grill in O'Fallon and Creve Coeur and the other is Mimi's Cafe in Chestefield. I have not have any problems eating at these places.

OOH! Chesterfield! I'll have to mapquest that one. We usually go to El Maguey's on Manchester. I don't know if what I've had there is gluten-free, but I haven't ever had a reaction. Thanks!

I personally can't wait to try more of her recipes. My hubby (when we were dating) bought me one of her books nearly three years ago. I finally tried her pizza - it was great!!!!!! Now I have to rearrange my pantry so I can have containers with all of her mixes. I know it seems pricey, but it's SO worth it and having yummy bread substitutes is worth every penny (IMHO). The egg replacer from Enr-G runs about $5.60 or so, but you only need two tbls so it would last forever.

Annette

It so sounds like celiac is a definite possibility. What is your ethnic background? Anyone in your family complain of tummy problems? Celiac is the great pretender of all of the autoimmune diseases. With 200 symptoms it can be hard to dx, and then there are some who are asymptomatic who have celiac! If you have been regularly ingesting gluten products, then go ahead and find a dr who is willing to run the full celiac panel for you. If you have been fasting or significantly reducing your gluten intake, the tests may be skewed. Then you would have to go back onto gluten heavily and for quite a while and even then there would not be a guarantee the the tests wouldn't come back with a false negative. Or you can do what other people have suggested and do the diet challenge - go gluten-free, see how you feel after 3 weeks or so, try something with gluten and monitor the results. I was dx'd with just the diet challenge alone by my then gp and all of my drs since then have accepted the results. (except for one - she didn't know a thing about celiac and it was obvious). Cutting out diary was mentioned - that is a good idea too. If you do have celiac, then the villi have been damaged and can't produce the necessary enzyme for digesting diary. You can probably reintroduce it in 3 months or so.

Good luck, keep us posted, and please don't hesitate to ask questions. We've all been there and we understand.

Annette

I did not know that! Thanks for the info. My hubby (who can eat wherever he wants) balks at taking me to PF Changs or Outback. (too pricey) Maybe I can get him to try this place. But our all time favorite eatery is Hannigans on the Landing. I've used my Triumph card there and haven't had a problem (real chef, not a cook - makes a big difference)

Annette (in Rolla)

It's a SUPPORT group. If they look down on you, then they have a problem. You self-dx because of necessity, not for attention or because you needed to belong to a group of some sort. Go, if they ask you questsion just smile and say you found out you had celiac. End of story.

You are right to be concerned about ingesting gluten again. What you have done is the diet challenge and it has come back positive for gluten. I was dx'd that way 9 yrs ago. No tests, not even bloodwork. My gp announced celiac and said the gluten-free diet was for life. He's since retired, but none of my other drs have questioned the dx. I tell them the symptoms of ingesting gluten and they don't argue with me. (except for one internisnt I used to go to.) Even my GI dr believes me and treats me accordingly. So it's up to you. You know your body best, and if gluten is the equivelent of poison for it, then stay away!

Hope this helps some

Annette

Malt-o-meal Fruit Dynobites aregf, and if you access to Always Save brand (generic with yellow lables) their Coco Crunchies are gluten-free too. Or you can do grits.

I've had rib pain, but it usually coincides with gall bladder attacks. I'm sure mine will come out in a few years. But I figure it's not dibilitating or keeping me from work, so I'll let it go. How bad is yours on 1 - 10 with 10 being the worst? That's the best way to gauge whether to see the dr about it or not.

Annette

I'm am new to all of this. I found out about 18 months ago I tested positive for celiac but didn't have any problems until the last month when I got very ill. I had scopes, scans, and many other test. Now they are treating me for celiac and crohn's. I don't know what to do, eat, etc. I need some help. Jenny

I don't know about Crohn's but a lot of people start out with mashed potatoes until their tummies settle down. Jello, hot rice, some fruits and well cooked veggies and grits are good starters while you heal.

Hope you're better soon

Annette

Why won't it let me keep "gluten-free" just as I type it? When I go back through and read a post I typed... it always puts it as "gluten-free". It keeps all the other initials.... DH... D... etc. Why not "G.F."? It's a pain to have to type gluten-free all the time...so in my posts I just use the initials. I don't understand why it gets fixed?

GRRR! It did it again... unless I put periods in between the letters it spells out the words. I don't get it!

It's called a macro - computer short cut in other words. So for girl friend it would be Gluten-free or G.F. or something like that. Otherwise it will be read as gluten-free. I used the initials "celiac disease" when posting about my walkman or discman as they now are. posted as celiac disease walkman. Makes for strange posts.

Help! What is fruit pectin and is there gluten in it? It's in jams and jellies. Thanks guys!

I don't know exactly what is in pectin, but think of it as a type of gelatin. It is gluten free, that I do know.

Hi. For those who were once lactose intolerant but can now tolerate it nicely, how long did it take?

I was lactose intolerant for years before diagnosis but it seems to get getting a bit better on the gluten-free diet. I can now tolerate yogurt daily (YAY!) and small amounts of hard cheese.

I've been gluten free for about 4 months now, so the other day I tried regular-people milk on my cereal. Big mistake - my body is clearly not ready for that

Just wondering, for those of you who can tolerate dairy again, how long did it take?

Thanks!!

My celiac was dx only 6 weeks into the disease, so I probably had very little damage done (dx by diet challenge, no tests). But it still took me quite awhile to tolerate yellow cheeses. I think nearly 6 months. I still don't drink as milk and eat as much cheese as I did pre-Celiac.

Snacks, we go to Costoco and get dried cranberries,(craisins), trail mix with dried fruits. mango strips. my kids will fight over them. rice cakes with peanut butter and jelly. Rice krispie bars. ( we make them with raisins and other dried fruits) Others are fresh fruit cut up with a dab of chocolate sauce which we make with BAKERS chocolate. Or fruit with yogurt.

My favorite is on the side of the tapioca box. It is fruit tapioca. They suggest apple, I use orange juice and thrown in the rotten fruit of the day. the stuff they wouldn't eat, I hide in the fruit tapioca. We can have real cool whip but not the calorie free.

FYI-I think Quaker rice cake are heavily cross contaminated, and last time I looked Rice crispies were flavored with malt so they aren't gluten-free.

Could be a lot of reasons for your dd not making it to the bathroom. Could she have a mild UTI? The malabsorption from celiac can cause lots of different problems. Sometimes I have problems too. The urge is just so strong that I can't quite make it to the b'room in time. Frustrating. Anyhow, the flours are a little pricey to make your own treats so I would buy a little at a time until you get a good variety and then you can make cookies and such. But my kids (non celiac) loved apples after school with fruit dip:

1 8-oz package cream cheese

1/2 cup brown sugar

1/4 cup sugar

1 1/2 tsp vanilla

Blend together, chill and serve.

Somewhere on previous posts there are links to the Delphi lists of regular foods that are gluten-free.

oh, quesidilla made with corn tortillas are good too.

In time you will learn to read recipies and just think substitutions like rice for pasta and such. BTW, I never had an "official" test like bloodwork and biopsy. My good ole gp had me cut out gluten when I went to him about having diarrhea for 6 weeks. The D stopped, viola ! Celiac. It's called the diet challenge and is a valid diagnostic tool. None of my other doctors since then have questioned the original dx. Especially when I tell them that if I accidentally eat gluten, I KNOW IT!

Annette

Hi. I've been wondering if my daughter (and myself for that matter) could have celiac. She was a colicy baby and had problems with thrush, as did I. She is 5 now and just doesn't have the energy that a normal 5 yr old, would. Here's a rundown of her symptoms.

Complains often of tummy aches

Gassy

Seems to be bloated at times, especially after eating

Tired all the time, seems she can't get enough sleep

Circles under her eyes

Seasonal allergies

Sinus drainage

Muscle aches (I have fibro and wonder if she may also)

Can be moody and irritable at times

Has had problems with eczema and dry skin since she was a baby

Seems like there are more. But those are the main ones. Just wondering what you all think. I'm looking into the enterolab testing for us both. Any advice on what tests are best. Money is tight.

TIA for your help!

Angela

Very likely. Here's an idea - why don't you both go gluten free for a week? See what happens. The problem with tests is that there are lots of false negatives, especially in children because their immune system may not be fully developed. You both could eat all the meats and fruits and veggies you wanted. You may want to limit dairy as dairy intolerance is very common with untreated celiac. If you don't feel any better w/o gluten, there may be other avenues to explore, but I'd try that one first.

Keep us posted!

Annette

I've eaten refries many times with no problems.

Make him eat it. Not prescribing an antibiotic was plain negligence on his part. Besides, I've heard crow tastes terrible.

Annette

She is only 1. So I don't think it is woman problems....yet! And she is on vits. but not iron.

Sorry....I guess I should have given more info....

She is currently being tested on a trial diet for wheat allergy but is showing problems with other grains (oats and barley) and yet tests neg. in allergy tests with the exception of the barley being boardline. Celiac was mentioned at the last visit. The fact that all her problems started with grains and surrounds grains I am thinking a visit to the GI might be where we are heading. She was fine till she was put on crackers,cookies, etc. When I remove them she is better. We have been on again and off again with grains since she was 7 months. She has done rather well on the trial diet. It was supposed to be just a wheat free diet but I had to remove the barley and now the oats. So we ended up on a gluten free diet.

I go back today to talk with the allergist about the trial and where we head from here.

Sounds like mom's intuition is the best guide for you. Testing on children, especially that young, is very often inconclusive. So what you are doing is the diet challenge and that is a viable diagnostic tool. (it was how I was dx'd 9 years ago. Never had any of the "official" tests) Go with how your daughter is doing and her reactions to gluten and the gluten-free diet. If she's better and healthier going gluten-free, then stay with that. It's a healthy diet and not that difficult. After awhile it's second nature. Just be sure your dd is totally gluten-free - toiletries and such can harbor hidden gluten. Good luck!

Has anyone tried or used "Actigal" it's a prescription to breakdown the stones.

other than nausea, what are symptoms of an attack? Any particular back pain involvedd?

Oh yeah, back pain! It's below shoulder blade (kind below the bra line area) and concentrated on the right side, mostly. I've had my attacks cause pain in my back starting on the right and then the left hurt also. Felt like I had been run over by a truck. BIG truck. I wouldn't wish the pain of an attack on my worst enemy (if I had one). My dr thinks that since my attacks are very infrequent that he'll keep my gallbladder in until I'm having more problems. It's going to come out eventually, I know.

Annette

Anemia can be a symptom of celiac, but only one of 200 or so. I had a hard time donating blood because my count was too low until I finally cleared out the last of the gluten in my diet. I gave blood not too long ago - my hemocrit was 13! Highest ever! And I've always taken supplements with high iron, but it took me a long time even after going completely gluten-free to get my iron that high. But my DD was in the ER for female problems and hers was 10. And she doesn't have celiac. How old is your dd? Do you have her on supplements? Is there anything else about her health that has you wondering?

Annette