Lisa

Hey every one that has helped me through Celiacland:

I am posting this because I feel it can help some of the new people (not that I am not one, but think it can help someone).

I have been two month gluten free (as always, as best as I am able). My energy is creaping back, I have more positive thoughts, I can tackle more tasks and basically have a far better outlook on the future and most importantly TODAY.

I big D issue, a few weeks ago was an issue daily, then every other day, now it is about every three days. I am not sure at this point whether it is a gluten issue or the ongoing healing process. It took a long time do the damage and I cant expect healing to be over night. The B-12 shots help alot. Since the big D has subsided, I have started taking Oil of Olay vit's (read somewhere they are gluten free) and feel that will help now that absorbtion is beginning.

I will treck on as best that I am able. But I have a question. I know that many people have different levels of tolerances, when you feel totally healthy, do you ever thing that you are "cured". I DO know the fact, that this is for life. But when you totally feel healthy what keeps you from eating a piece of pecan pie for Thanksgiving. I DO know the answer, but when symptoms keep you motivated and the symptoms are gone how do you deal.

I also wanted to thank all the people who have supported me during the early stages of this creepy disease. Hear, hear to all of you. I'm still here with ya'll and I intend to stick with you.

Lisa B.

100%

I have the CSA Product book and it is great for starters. I reference it when I go to the grocery store. It helps me memorize brand names and I usually buy two of each that I know is safe ....it helps me imprint my brain.

I have dropped some hints about a palm pilot for my upcomming birthday (along with it I want a personal technician to show me how to work it). I will get some help to down load the Delfi List.

I will be 51 shortly and I still remember when TV was black and white....a palm pilot would be from another world. . Isn't it odd that 51 does not seem so old, but black and white TV REALLY does. Wow, maybe I AM REALLY old.

Lisa B.

Ashley, I could almost have written your post.  My biggest symptom has been abdominal bloating to the point that I look pregnant, but there are lots of others too like not being able to eat dairy.  I have had colonoscopy and endoscopy and biopsies.  I did not get results yet.  I am not going gluten free until I find out if I need blood work done too.  I think it should be done if the biopsy is not completely conclusive. 

I see my doctor in about two weeks.  I am not going to accept "your digestive tract is irritated and inflamed"  -- I got that part.  I want to know why and what to do about it!

Hang in there and keep asking questions till you get a yes or no answer.  I know that is not always easy with this condition, but I want to know before I go gluten-free.  Once I take away the gluten, the blood tests won't show anything.

Feel better.  ((hugs))

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For all of you out there, that are not gluten free yet........eat a really BIG piece of chocolate cake for all of us, please (but don't tell us how good it was).

Lisa B.

By the way, you guys are great! I don't think I posted this 10 minutes ago and I've already had 2 replies. Thanks so much! I actually printed out a couple message board conversations and highlighted things that relate to me and the symptoms I've experienced. I'm planning on taking everything in to the GI appt with me and demanding the tests. Whats another tube gonna hurt, up your bum, down your throat..same difference right?! Might as well poke me with a couple needles while they're at it! haha I guess I'm just worried that I'm looking for something and celiac disease is all I've found that makes sense. I needed some justification.

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It took me 10 minutes to read your post

Do not go Gluten Free before any test or you won't be a true read.

Endocopy test is no problem and you won't remember.....Good luck

Lisa B.

The symptoms that you listed are classic celiac symptoms. I would request/demand that the GI Dr. to an endoscopy test with a biopsy to rule out celiac.

You can't live your life this misserable. Hope you find a cause and get well soon.

But....I bet your have Celiac Disease

Lisa B.

It is most likely anxiety. What tests are you going to have...colon?

We have all been through this type of things. Just think you're on your way to healing by getting tested.

Good luck and let us know

Lisa B.

Thanks, Lisa, but I've made my mistakes (and no doubt will do so some more) and there's always stuff about which there's legitmate disagreement. There are also topics about which I know very little, so I try to stay out of those.

richard

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Never the less, I trust your experience. You are far wiser than me, as I am three months into my Celiac experience. You have many years preceeding me. What I have learned in these few months, I have informed my doctors and friends that truely care for me as a friend. It truely has been quite a ride.........

I am just beginning to feel like my "old self" again. Thanks to you and other on the site, maybe life can return to normal.

Take care, Lisa B.

i don't think what lovegrov said was rude.  there is a certain responsibility in posting, at least i think so, to not post that something is gluten-free or infer that it is without at least minimal checking (of course there are products that are "gluten free" that upon closer inspection aren't due to cross contamination, whether in a restaurant setting, or in a factory where it is produced). i totally understand you're new at this and it's hard, which is why he was giving you the proper warning that the food was not gluten-free.

that said, fast food is just like beyond risky but at the same time there are many circumstances where it seems like the only option.  unfortunately my past 2 experiences with mcds french fries, which normally i have great luck with and are the only fast food fries i'll eat (wendy's are not gluten-free and BK always has an onion ring or two in them) i've gotten sick off of. and 2 different mcds too. so i'm now i'm torn about whether i should just avoid them perm. or not

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If richard says it's ok, then it's okay...if he says that it's not, then it's not. I totally trust him with my health (not to burden him, but to respect him and his experience).

Lisa B.

I am not sure that inhaling flour can "gluten" you, but many people on the site do feel that it is possible.

How long have you been gluten-free? I do think that the longer you are gluten free, you may be more sensitive to glutens that you digest and possibly inhale. Could you work through your college and get a dorm transfer?

Hope that you can work something out. The smell of bread every day would drive me crazy and I never liked bread to begin with.....Kooties in the air, ooooh. But it sure smells good when baking, I will have to give it up to that.

Lisa B.

Scroll down to the bottom of this page. Click on Forums, lots will pop up, then click on the " Gluten Free Cooking and Recipe Forum". I am so computer illiterate that I don't know how to cut and paste, the girls have been trying to teach me for years. (Guess I just don't want to learn, it the reason). It's easy, even I can do it. Good luck. Let me know,and we can get someone else to help you find it. (or cut and paste for you.)

Lisa B.

Here are two more......Adivil Flu and Body, and Thera Flu

Hope that helps

Lisa B.

does anyone know of any over the counter fever reducers or flu medication that we can take?

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Dimetapp

Dristan-Cold Multi Symptom Tablets

12 Hour Nasal Spray

Max Strength Cold Non-Drowsy Caplets

Tylenol- Extra Strength Gelcaps-Caplets

Robitussin

The are no-specific for flu, but will help with symptoms. Found these definites, from the Celiac Sprue Association Product List. Hope this will help. The Delfi Product list, I am sure will be more specific to your question.

Lisa B.

Hi! I'm new to the board and I've just found out I'm allergic to wheat products and other things. I'm a bit overwhelmed looking through boxes, cans and recipes trying to find anything that doesn't contain gluten. I need true & tried recipes that taste good. Thanks christine (internetnut)

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Welcome Christine:

There are some wonderful recipies on the "Recipe Forum". Just click below to find it. There is plenty there for you to get started. If you need anything specific, just ask one of us. We'd be glad to help

Lisa B.

Hi Lisa,

Have you noticed how many people posting here are about to get married or recently have? It's all very stressful, for the mother as well, I'm sure! I wonder whether it's stressful enough to trigger celiac disease in those genetically disposed.

I hope you won't mind me asking. How are you distinguishing IBS symptoms from celiac disease?

Best wishes,

Matilda

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Our Doctor reviewed her history, requested records from past tests, took her off the Donnatol and she is trying Zelnorm for a while to see if she gets any relief from that. He suspects that the Donnatol is giving her the morning headaches. To my knowledge there is not much difference in the symptoms between IBS and celiac disease. He has suggested that we try this first, allow him time to review her records and give this some time. If this is unsuccessful, then we will do an endoscopy to check for celiac disease. My gut feeling is that being 21, she often misses breakfast due to sleeping until lunch and does not always eat healthy for dinner... her schedule is crazy with college and working.........so at this point in time I do suspect IBS although she is genetically disposed for celiac disease as well. We will watch that closely.

Thanks all, for all the mom compliments....we don't always get that from those around us. It's nice to hear.

Lisa B.

I use Zantac 75 or 150"s. the 150's usually clear out my system at some point after taking one, but I am usually home. Pepsid is also ok. Don't think Tums chewable is good, but will have to look it up.

Go to the products thread and search for "antacids". There you will find your answers.

This is weird. I have a thread going about how I was getting better but since July, I feel like I am getting worse. I see the doctor tomorrow. I made the appointment because I think I may have multiple food intolerances besides gluten. But, I was talking to a friend of mine tonight who is an MD (dermatologist) and she asked me if I had ever been tested for giardia. I was tested for parasites back in February when my initial blood work was done but I haven't been tested since and my symptoms strted getting worse in July when I swam in two suspect places- a river and a bay. Could giardia be complicating my recovery? I looked it up and the symptoms are remarkably similar. Here's a partial list:

What are the symptoms of giardiasis?

Giardia infection can cause a variety of intestinal symptoms, which include

    * Diarrhea

    * Gas or flatulence

    * Greasy stools that tend to float

    * Stomach cramps

    * Upset stomach or nausea.

These symptoms may lead to weight loss and dehydration. Some people with giardiasis have no symptoms at all. 

Help! I feel like Hell. Beverly

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Bernese:

Don't forget about the horses. They often carry alot of creepy things. That's why they have to be "wormed" about ever three month of so. You could may have well been infected by just hanging around them if you a super-sensitive. They carry "botts" fly eggs, skin fungus, tick (lyme disease), parasites and others that I won't mention.

Don't forget to remind the DR that you hang around horses. Not that I want them to be the bad guys, but you have to figure out why you are feeling so crappy.

Look into ALL avenues.

Lisa B.

From what I understand Alcohol is basically a solvent, like dish soap going through your body. For those that have been gluten-free for a while, you body is reacting to other toxins as gluten would be. The body gets more sensitized. (sp) If it dosn't react to gluten, it will react to other toxins. It is just what it does in it's defense.

I still drink, as alway in moderation and what I know is safe. I probably should not during the healing process, but I am holding on to the few consumeable pleasures that I have. If it becomes a problem I will discontinue.

If it hurts, makes you feel bad, quit.

Don't know if this will make any one feel better, but just though I would post in.

Lisa B.

Does anyone know of any soups that are gluten-free?

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Check on the Recipe Forum...there are lots.

Lisa B.

Regionally or course, would anyone in the region be willing to travel to the Outer Banks of NC for a weekend at the beach for a support group/think tank gathering?

It would be a non-holiday weekend. The house has one double bed, four single beds, and room for a day bed, and more space for sleeping bags. 3 bathrooms with and additional outside shower. ( It is more of a home than a cottage) Across the street from the beach and has private accesss to the beach.

This would be a "share weekend" recipies, coping, relationship issues and totally gluten-free cooking which we would take turns preparing a meal.. A $25.00 per person would be for the utilities that we use, per person the rent would be free......and the beach walk would be.......priceless.

This needs to come forth in the nearest of times as the winter months are comming and closing of the house will be close. Any one interested please respond ASAP............sometime before Thanksgiving. would be ok.

Please contact me through my person e-mail as listed on the board site.

This could be really a cool thing. I think that I know many of you now., but meeting you would be a good thing. (hope no whako-among us???)

We will take it a day at a time. And, we will be watchfull for celiac disease to show its ugly head. We'll be watching closely.......

Thanks for your reply.

Hey Guys:

Went to the Osteopathic New Dr....love him. with my daughter.

She has had major Constipation, doubled over in pain after eating at times, headaches every morning, nausia, no sleeping and typical symptions of IBS. I do think that at this point in her life, it is IBS although she is genetically disposed for Celiac as I have been dig.

He has taken her off the Donnatal that was previously prescribed by our GP and started Zelnorm. If this does not help her symptoms, we will do the endoscopy exam and keep her on gluten. She is 21 and it would be a sad time for her to give the pizza up.

We will keep an eye out for her symptoms to "morf" into Celiac symptoms, but for now we are trying to settle the IBS. She is getting married in June and future stress is a "duh". AS WELL FOR THE MOTHER OF THE BRIDE

I would appreciate any imput from those who have been there. I was IBS for 27 years, me is one thing, my daughter is another.....ya know what I mean?

Julie:

Good for you. Now that you know, it is something that you can fix.

Check these sites and they will be helpful to you as to what to eat and where to find things.

Congratulation, you are now on the road to recovery.

Let us know if we can help in any way.

Lisa B.

Cool:

Anyone have a US version?

Lisa B

I was under the impression that only celiac disease caused flattening, or destruction, of the villi.  A lot of things can cause inflammatory processes, but it is the villi flattening that is the classic hallmark of celiac disease, and can only been seen on biopsy.  My GI told me right after my scope my gut looked like celiac disease, but it was the pathology that really confirmed it.

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I have been thinking about this for a while. He said that flattening of the villi is the classic hallmark of celiac disease? That is very interesting!!!! I have had the biopsy and flattening and scalloping of the walls was indicated and biopsy confirmed celiac disease.

I was curious about research being done that would cause the same effects on the small intestines without being a gluten/wheat intolerence. You would seem to think that there may be other things that can cause the same damage, not exclusively celiac disease.

That's cool, I'm glad that you told me that, I did not know. Thanks