Lisa

Thanks Julie:

All those things will be helpful tomorrow. We signed waiver for all her hospital records to be in his office by now. We live in a small town so lots of the tests are done at the hospital. He should have the records by now.

I feel so helpless. She is getting married in June and I want her to be in good health to enjoy this time.

She is in college and commutes from home. When not going to school she sleeps until lunch and misses meals. Typical young persons agenda. We'll try to work it out tomorrow.

Thanks for your impute.

Lisa B.

Bones:

I was treated with IBS symptoms for 27 years. It wasn't but four month ago that my symptoms got so out of control that my GP set me to the GI guy. I believe that I was pre-disposed and maybe have been non-symtematic (sp) for celiac disease for many years. But, during a period of high stress four months ago, the celiac disease kicked into high gear.

To make a long story short...during this time when I went to lunch for a salad, a half hour later, there was my salad and 1/2 of my stomach acid. I could not leave the house. So, hence the GI DR. I had an endoscopy exam with a biopsy and a colonoscopy. Colon, was great. Endoscopy and biopsy indicated scalloping of the upper intestines and flattening of the villi....which is consistant with Celiac Disease.

Two and 1/2 months into the gluten-free diet, I am not just beginning to feel like I can join the rest of the world. Every third day is a not so good day and am looking forward to every forth and every fifth and every sixth.....

I don't know if this answer any of your questions, but I hope it did. I wish you well and your children and if you feel they need to be tested, go with it.

Best of luch and I hope that I have been helpful to you.

Lisa B.

PS - If you are entertaining testing DO NOT GO GLUTEN FREE BEFORE TESTING.

It will not show the true testing/readings.

Hey Guys:

Annie and I are going to the doctors again tomorrow. Annie suffers from cronic constipation and has great pain after eating. She "goes" about every third or forth day, with the constant urge to do more, but can't.

She wakes up every morning with a terrible headache that can last throughout most of the day and sometimes into the evening.

When the stomach pain hits, she is almost doubled over. (I remember the feeling as I was there and felt like I was going to pass out twenty five years ago).

She is not on the gluten-free diet, but I feel that she has a pre-disposition to celiac disease.

My GP tested her for the blood test...but what a joke. Don't know what they tested her for and just got a call that "it" was negative. That was the end of that, so we are going to a new doctor. He is an Ostiopathis Doctor (sp). He is so cool and I really like him. He has certainly made my life more pleasurable.

My question is: Should she do the blood test for celiac disease, or should she do the endocopy. or maybe an MRI.....The headaches have to go. They are sometimes bad enough that she is unable to do what she needs to do.

Eyes check out ok, and no wisdom teeth...those issues we have ruled out.

Any thoughts that I can bring to the doctors office, please.......

Lisa B.

Any suggestions as we go tomorrow.

You're right--I learned that within 8 seconds or so, anything that is applied to the skin is absorbed.  Frankly, I don't know if what is absorbed finds its way into the digestive tract or if just circulating through the bloodstream can harm us as Celiacs.  Does anyone know for sure?  I've been wondering about this.

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Glutens cannot be absorbed through the skin. This isssue is...it you use lotion on your hands and face, put your fingers in your mouth, or lotion near your mouth you will ingest glutens. Gluten is accepted into the body orally only, THEN, it eats at your gut.

Hope this will clear up the question.

Lisa B.

Sorry, but got side tracked by the smell of the beach (OXB).

I did get one response that after you get used to the diet, you know what you know what you are looking for.

Would the palm pilot be work the expence or would more knowledge take you farther in your expanded world of being gluten free. In other words, would it be prudent for my husband to by one for my upcomming birthday and how much would I use it.??? If I don't, he won't be a happy camper.

My thoughts, are not buy, until I know what and where I need to be. Maybe too early to be buying things...........and I don't know where I am going. Gluten Free for sure, but busy with the diet now, and gagets, maybe can wait.

What'cha think?????

Jen, what do you think?

Lisa B.

Lisa,

Which town are you in?  I have cousins in Kill Devil Hills and my family vacations  OBX  every Labor Day weekend.  I was down there  with them in 1996 and 1997 and there was a hurricane.  We were staying in house on beach in Duck.  Loved it there immensely...would like to move there eventuallly. 

Debbie

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Debbie:

To make a long story short. We live in Edenton, NC about an hour and fifteen minutes from the northern shore of the outer banks.

When we moved to Edenton, about 30 years ago, we shared a drive way with Hazel and Logan. Logan died, a few years later Hazel's son died with cancer in his late 30's, and a few years later her son Raleigh, was found in the Currituck Sound.

We have been with her for all the three significant men in her life die tragically.

We are close because Jim, nor I have parents. Our children have never know a grandmother or grandfather. ...So preceeding these tragic deaths, we have taken up with "Hazel". She is my oldest daughters godmother.

So that is why we are at the beach often. Hazel has a beach house at the 1 1/2 mile post and since she is in her 80's we take her there and take care of the house. It is time to wash off the screens and take them in for the season. But it is always nice to have Thanksgiving Dinner there. She's the boss and what she say goes. 80 year's and such......

We are at Kitty Hawk, near Southern Shores, where you would turn off going to Duck. Twenty years ago, no one knew where Duck was, Now it is mega, billion homes. Fore sight, sucks. It seems like missed opportunities wherever we go.

Well, when ever you get there let me know. It would be nice to see people that we have talked to forever to meet in person.

I don't thing that we are all creapy internet folks... Let me know when you get to this area. And, do this check Edenton, NC on the web. It's a really cool place. It truely is a living Museum with our historic homes and walking tours.

Okay, to make a long storey short, I have exceeded my time.

Come visit us Debbie

When and If E-mail me.

Lisa B.

Hi Lisa,

I just bought a PDA and I'm waiting for it to arrive. I'm really excited about what things I'm going to be able to do with it, not just for celiac disease. I plan on downloading  free, gluten-free lists and then purchasing the Clan Thompson for my PDA as well.

I purchase a lot of my foods from Health Food Stores. However, when we travel I have to mostly shop at regular grocery stores. I think this will help take some stress off when going to OBX to visit. 

I also have the Silly Yaks Resturant List which I plan to put on my PDA as well.

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Thanks. I will just put on gluten stuff to reference. When you go to OBX there is a great natural food store there, next to the Outer Banks Bread Company. Great place for lunch, but have not since gluten-free. I think it is around the 6mile post. Right side going south.

You comming any time soon? We tend to a place at the 1 1/2 milepost across the street from the beach. Expecting a Nor'easter there Monday and Tuesday from Wilma.

Is it hard to down load information onto your pilot, or is is self-explainitory?

Hey Guys:

I have read that many of you have palm pilots to aid you in your selections at the grocery store. I am rather technically inept and would be not sure how to work it. ...but I guess I can figure it out.

How useful has it been to you? I'm getting the hand of shopping, buy using the lists that I am sure of when I buy.

Would you feel that it would be useful?

Thanks for any imput.

Lisa B

My favorite is Seagrams 7 and 7-up with a slice of orange ummm. It is almost totie time

Sure--that makes sense.  When you get lots of vegetables, fruit, fiber, etc. it can be harder on the not-completely-healed stomach/intestine.  Not detrimental to your recovery, but it'll make you feel sick right now--maybe hold off for a few more months or drink a little less of it.

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I'll give it a try, thanks.

Hey Guys:

Just a quick question. I am two months into gluten-free diet and still healing. I have been drinking V-8 Juice at work. It is healthy and gluten-free, but it just doesn't seem to stay in....maybe too much acid? Anyone have an issue with this?.

Lisa B.

I have the box checked reply and I dont have a spam folder I dont know why I am not receiving any replies.  I used my personal email not my yahoo so I dont know whats going on does anyone have an idea of why I am not getting email notifications.

Thanks

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Everyone is worthy of a reply of some kind. Try submitting your post and I am sure that you will get a reply.

We are all here to be supportive in any way that we can be. Some are experts in different aspects of celiac disease. This is the week-end, sometimes there is a lull in hits from posts...

Hang in there and keep trying.

I have lost weight over many years 5'8", 123 most likely through no obsorbtion.  There are others here that have gain weight.  Most Dr.'s don't specialize in Celiac Disease, unless they are associated with a learning institution such as Mayo and John's Hopkins.  Most GP's are aquainted with celiac disease in med school and few have seen "real cases".  I read a post from someone on the site, that her dr. called celiac disease the "designer disease" currently.

I would suggest that you contact your local hospital and check with the administration and inquire which doctor would be more educated in digestive diseases.  Many drs. have outside offices, aside from their hosp. work.

To determine whether your intestines are damaged, you will have to have an endoscopy exam with a biopsy.  It is a no-brainer, they shoot you with demeral and you go to sleep.  Send a tube down your throat, take pictures, and clip a little sample to go to the lab to test for a firm diognosis.  You wake up and sleep the rest of the day, then ask you wife what the doctor said.....for three days.

I am in NC and can't help  you with Conn. drs.  Hope this will help you. 

PS:  I forgot to add, if you plan to do further tests to confirm your possible damage, DO NOT GO GLUTEN FREE.  Stay on a gluten diet, or your test will present themselves as a "false possitive".  Do not change your diet until all your test are completed.  Very important.

Celiac Disease is not fatal by any means.  If not addresses, it can open the door to other issues that may be.  Please take it seriously.  Wish you well and please read all you can from this message board.  You will learn SOOOOOO much.  Stay cool and relax and read.

Lisa B.

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Ahh , yes, a very familiar symptom when I get contaminated. Let's see, blisters, dry mouth and the shakes, then you don't stray for more than two minutes away from the bathroom. Fog brain and no driving, can't concentrate long enough and we have a fast highway to contend with before we get anywhere.  Hate those days! Very careful to avoid them as much as possible.

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Shirley:

Glad to talk to you again. I am still not healed, so I don't know whether it is gluten or not. I guess that will take some time. I have only entered a few new things into my diet. Oscar Meyers bacon bits, Oil of Olay vit. (clearly say "gluten free" and Clinique lipstick that I have checked to be gluten-free, Annie Roasted Pepper dressing. Every third day is a not so good one...........but, better than every day. So I guess there is progress here. Mornings are good, I do my run-arounds before lunch, which I have to remind myself to eat, after that not so good. By dinner, I'm fine. I do think that I have to back down on the adult totties. I am sure that will help, but hard to do.

Getting Cold up there?

Lisa B.

Anyone know of a Celiac disease Doctor in Connecticut.  I would like to find out if any damage is has occured to my intestinal trac.  On another note, is weight gain a sign?  I am 6'2, graduated high school at 172, graduated college at 210 and in the last 8 years, I have packed on weight.  I am 260 now and in the last 7 months gained 35 lbs.  I have had the same routine for the last 8 years.  Is my body compensating for something missing in my diet???

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I have lost weight over many years 5'8", 123 most likely through no obsorbtion. There are others here that have gain weight. Most Dr.'s don't specialize in Celiac Disease, unless they are associated with a learning institution such as Mayo and John's Hopkins. Most GP's are aquainted with celiac disease in med school and few have seen "real cases". I read a post from someone on the site, that her dr. called celiac disease the "designer disease" currently.

I would suggest that you contact your local hospital and check with the administration and inquire which doctor would be more educated in digestive diseases. Many drs. have outside offices, aside from their hosp. work.

To determine whether your intestines are damaged, you will have to have an endoscopy exam with a biopsy. It is a no-brainer, they shoot you with demeral and you go to sleep. Send a tube down your throat, take pictures, and clip a little sample to go to the lab to test for a firm diognosis. You wake up and sleep the rest of the day, then ask you wife what the doctor said.....for three days.

I am in NC and can't help you with Conn. drs. Hope this will help you.

Celiac Disease is not fatal by any means. If not addresses, it can open the door to other issues that may be. Please take it seriously. Wish you well and please read all you can from this message board. You will learn SOOOOOO much. Stay cool and relax and read.

Lisa B.

I was diganosed with celiac disease in mid May of this year. It was a postivie blood test, but no biopsie. I got totally better on a gluten free diet, but then in Late July, I started to Have symptoms again... So I had more blood work done, and my anitbodies were better, but still high. I just recently had an endoscopic exam and there was no villi damage. i figured it would show that since i have been gluten free for about 5 months, but My stomach was inflamed. The dodctor said I have Gastritis. Are celiac disease and Gastrits related at all? Has anyone else had a similar situation. Since late July i thought I was eating gluten somehow by accident, but I guess that's not the case. I just have stomach infamation... I'm so confused!!!

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Tangerine:

I, too, have gastritis as well as celiac disease. I don't know if there is a connection between the two. I take Prilosic (it is gluten-free) in the morning and one before bed and that seems to help alot. Hope you feel better soon

Lisa B.

Welcome to the board! You have just entered the biggest treasure on this site, much more than you can imagine. I have been reading/monotoring this site for about 4 months and it truly is a God-send.

To begin with, read everything you can read on this message board, it is a great resource. There are so many people that have been where you are now. We still have a life, a changed life, but it can also be very fulfilling. It is all what you make of it.

Jenvan (Jen) has a great list of adult beverages that will be safe for you to consume. Sorry about the beer though. . celiac3270 and others can send you the Delfi Product List that you can download on your computer. This is a list of Gluten Free Product (by name) that will help you shop for food this is gluten/wheat safe.

The healing process will take several months and it will vary from person to person, depending on the amount of damage to your small intestines. Please remember that you will not begin to feel better unless you are totally gluten free, unfortunately, for the rest of your life.

Cooking gluten-free can be just as good as non gluten foods.

I am sure that others will kick in, but if you have any specific questions, please post and you will alway get an answer from someone that is sure that the information is correct and safe.

Knowing that you have a diognosis, is always better than the worry and anxiety of not knowing what is wrong with you.

It's kind of a ride, until you get the swing of it. But it gets better. Take care and ask away all you want.

Lisa B.

Wow, okay sorry I did not pick up on that!  My apologies!

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It's okay, don't worry.....Just is a simple mis-communication/or reaction. Keep us with you. We are alll one BIG Family here. We could start a thread about Theology, Sex and Politics............. wouldn't that be interesting. Think that we better stay where we are. Made some good friends here, don't want to go there.

Keep posting, we are all here.

Lisa B.

Great, I am truly glad this issue is over........now we can get on to other things.

Thanks to our Jewish friends on board (not-non- religious friends) that easily cleared up an SMALL issue.

We are all bonded here by a common infliction. We come from all walks of life and religion has no place here. I do feel stongly that this forum should be dedicated to the issues that it has been dedicated to...information and support for those inflicted with Celiac Disease.

Thanks for letting me vent. This is a small pet-peeve of mine.

Lisa B.

After reading the above...I am certain no offense was intented. Perhaps a simple typo.

We are grateful that we have the benefit of this wonderful site that has been literally, a life saver for many of us. I, too, would like to express my gratitude to all the many that have responded to my posts with question that they have already answered to others that preceeded me.

I, every day, read the posts and add my two cents when I feel I can do it safely and supportively. We are all struggling, if we were not, we would not be here. So, we struggle together and make our way.

Maybe some day, I will be as wise as those who have helped me.

Lisa B.

With two months into gluten free.....

I am now feeling better, slowly. I have been keeping most of my meals where they should be. It still seems that every third day is not so good. After lunch for several hours are bathroom trips. It is slow, but progressive improvements.

It does seem that on those bad days, my hands shake and it is almost impossible to type on the computer. I tend to drop things and basically feel very spastic.

I am not sure whether this is a dehydration issue or not. I have a first cousin with MS and that really scares me.

Could this be a side effect of celiac disease? Anyone out there having the same experience?

Impute would be gratefully accepted.

Lisa B.

Thanks for all the information.  It all sound so technical to me.  You all have way advanced me.

Have a question....What is Gluten Ataxia?  I have heard that come up no and again, but don't know what it is

Thanks again for your impute.

Lisa B.

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Found it on the current site, thanks.

Thanks for all the information. It all sound so technical to me. You all have way advanced me.

Have a question....What is Gluten Ataxia? I have heard that come up no and again, but don't know what it is

Thanks again for your impute.

Lisa B.

Try McCormicks Vanilla, to the best of my knowledge, it is gluten-free.

I'm 5"8' and I can't find jeans to fit my slender bod....long and lean (not proud, not bragging,) just would like to find a pair of jeans that will fit.

Any suggestions.....

Lisa B.