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Hi everyone, I am a new member with tons of question!!!!!!!!!!!!!!!! My mom has been sick most of my life and here recently (past 10 years) has been extremely hard on all of us as a family watching her suffer from intestinal problems. All of my life she was constipated with horrible pains which made her not want to eat. Test after test and surgery after surgery, including this new surgery tomorrow morning. I am growing disappointed in the doctors. She has had her large intestine removed, since then it has been hell. She is not on a bag, they connected the colon back to the small intestine. Since that surgery 6 years ago she has Berret Disease which is a disease of the esophagus, now since the the esophagus is turning into her stomach they are going to remove that and reattach her stomach to the esophagus. My Mom is a very spiritual women-Christian. I believe her faith has keep her this long. I on the other hand believe in more of a holistic approach to this WATER, cure for everything if you believe in the power of it. After watching Good Morning America and hearing that young women describe her pain and suffering, I emailed my Mom right away and asked if ANY of these DOCTORS has tested her for this, seeing that when I read the site and some of the foods listed are her FAVORITE it woke me up to the fact, that all this time her diet could be causing this horrible pain that she cannot describe to even her children. Doctors have been telling her all along that her Villi's are not working. My question is what does a daughter do now know she could be facing another unnecessary surgery. She has agreed to getting tested after this surgery. Being that I just found this information this morning I am worried that this surgery is another set back. Please all responses are helpful!!! SHe is only 54.

Frustrated

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Hi! Welcome to the board! Hopefully, you have finally found the answer to your family's prayers. Most of us go years (the average from onset of symptoms to finally getting a diagnosis is 11 years!!!) before finally finding out what what wrong with us all along.

First, the information on this site it tops in my books. Also, someone posted this link this morning, and it describes celiac disesae in more "layman's" terms:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Your mom definitely should have the bloodwork done to rule out celiac disease. There are some people on this site who basically have been on death's door before finally finding out and have bounced back to a life of health again once they started the gluten-free diet.

Keep plugging away! One thing we have learned the hard way is that you have to be assertive and pro-active in regards to your health - that's the only way most of us finally got diagnosed.....

Hugs and again, welcome!

Karen

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Hi everyone, I am a new member with tons of question!!!!!!!!!!!!!!!! My mom has been sick most of my life and here recently (past 10 years) has been extremely hard on all of us as a family watching her suffer from intestinal problems. All of my life she was constipated with horrible pains which made her not want to eat. Test after test and surgery after surgery, including this new surgery tomorrow morning. I am growing disappointed in the doctors. She has had her large intestine removed, since then it has been hell. She is not on a bag, they connected the colon back to the small intestine. Since that surgery 6 years ago she has Berret Disease which is a disease of the esophagus, now since the the esophagus is turning into her stomach they are going to remove that and reattach her stomach to the esophagus. My Mom is a very spiritual women-Christian. I believe her faith has keep her this long. I on the other hand believe in more of a holistic approach to this WATER, cure for everything if you believe in the power of it. After watching Good Morning America and hearing that young women describe her pain and suffering, I emailed my Mom right away and asked if ANY of these DOCTORS has tested her for this, seeing that when I read the site and some of the foods listed are her FAVORITE it woke me up to the fact, that all this time her diet could be causing this horrible pain that she cannot describe to even her children. Doctors have been telling her all along that her Villi's are not working. My question is what does a daughter do now know she could be facing another unnecessary surgery. She has agreed to getting tested after this surgery. Being that I just found this information this morning I am worried that this surgery is another set back. Please all responses are helpful!!! SHe is only 54.

Frustrated

Welcome to the boards, you have come to one of the best places for information that I have found. I would start by having her call her doctor and go in for a celiac panel, before the surgery if possible. If she is celiac she will heal much more quickly gluten free. You may want to suggest she try being gluten free after the blood work is drawn, it won't hurt her and may help. Go through this site throughly and ask as many questions as you need to. It also wouldn't hurt for you to get a celiac panel done on yourself, of course I am a firm believer that everyone should be screened.

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. My question is what does a daughter do now know she could be facing another unnecessary surgery. She has agreed to getting tested after this surgery. Being that I just found this information this morning I am worried that this surgery is another set back. Please all responses are helpful!!! SHe is only 54.

Frustrated

HI

Gosh, such sad news on the board today.

This is such a burden for you. Do you have siblings you can discuss putting a hault to the surgery tomorrow? It seems she has been through so much and they still don't know what is causing the problems that resulted in the surgeries???

I think you got really good suggestions from the previous posters esp ( I think someone said have the dr look at the GMA article?) we know The Dr's don't like being told what to do...only you can judge how he/she will take it) I know my dr would be happy to re'c any info i find...but I'm lucky that way.

My prayers will be with you and your mom...Please keep us posted on what you decided to do and if she has the surgery how she does. I'm a real beleiver in 'things happen for a reason' and your hearing this news today, I'd view as a very very special blessing of insight.

Praying for you in PHilly

Judy

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Things happen for a reason and you heard this news TODAY, the day before this surgery.

She is scheduled for treatment at the hospital. They can do the blood tests. Did they do any pre-op. blood work yet? There can be more signs of Celiac in those results. (Vitamin defiency and anemia.)

You've got a lot of research to do in a little time to get it done. Get her full patient history. Call the head of the hospital and get an expert on her case.

Laura

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Things happen for a reason and you heard this news TODAY, the day before this surgery.

I'm a firm believer in this as well.

Good for you for doing some research and finding this forum. You've already been given some good advice. Like the others have said....get the bloodwork done asap. Best of luck to you and your family.

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Guest nini

best of luck to your family, I too agree that there is a reason you found out about this TODAY before the surgery.

My brother in law keeps having intestinal problems and has had surgery after surgery, but has NOT been tested for Celiac and refuses to try the diet.

I was almost dying before my dx, I was so ill... I had been ill for a long time and I was only 33.

Please keep us posted.

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Hi,

I hope your entire family is hanging in.

But can I just say that a day before surgery is a hard time to make dramatic decisions.

What does your Mom want? What does your Dad say?

I am new to Gluten-free Casein-free (november) self-diagnosed. My sister figured it out for herself & I followed. We think celiac explains all the medical weirdnesses of our family, with my Mom leading the way. But to her, a life without gluten is not a life. So far, she won't even consider this as a possibilty. She however is nearly 70 & has been suffering since she was 20. For me it's been about 20 years & at least that many for another sister.

I guess I just want to say that I've recently been through a bunch of surgeries, for breast cancer. Hospitals ramp up everything. Do what you can do. You can only do so much.... And I know what my mother is like, though don't know about yours. Mine has strong opinons.

So I hope you all hug eachother & find answers along the way.

hug yourself (I'm told we should all get 4 hugs a day)

regards,

bb22

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whoa, i so posted to this last night, i swear. anyone see it?

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Okay, so I'm going insane b/c I wrote this long post yesterday! Arg!

Anywho, in abbreviated form. So sorry to hear of your mom and all she has been through! I definitely would have her tested for Celiac. Go here to see how one gets tested: http://www.csaceliacs.org/celiac_diagnosis.php I would take the portion on blood tests with you to her doc, in case they are not totally familiar with Celiac or testing.

My father has Barrett's Es, and I would say that if her damage is severe enough to warrant that surgery, a gluten-free diet will not heal it and that the surgery must be necessary...but you can raise this issue with her doc if you want. I know Barrett's is not something to mess around with.... It leads to esophageal cancer, which is not a good thing. People have different responses to the gluten-free diet...some find quick relief, others it takes longer. There is a good chance if your mom has Celiac and goes on a gluten-free diet, that it may heal some damage and prevent the need for other surgeries in the future, from progressive destruction. However, no one could tell you that for sure.

So glad your daughter has you to help her. And that she has her faith...I'm sure it is what keeps her hanging on at times. I was not sure what you meant when you referred to 'water' and holistic healing. Just wanted some more info on that to understand...

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Hi,

Wish I knew what "I so posted to this" meant? Does posted mean pissed? & are you talking to me? Did I offend? I certainly did not mean to. I wonder, is the blood work really do-able in 8 hours? & I wasn't suggesting that the tests not be run. I've just been in so many hospitals & it is hard to stop a rolling train. The work we all do to weed through the Medical system is hard work - ...... we do what we can.

Or maybe posted means - tune in? & I'm simply paranoid & full of angst. I am 45 & new to web lingo.

Hoping to hear that your Mom is recovering with or without the surgery.

bb22

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bb22--

no, no ones mad! :) i meant that last night i had "posted" (written a message) to this thread and when i came back this morning it wasn't there. i was basically saying, 'uh oh, what happened to my post/message!?' definitely no relation to 'pissed', so no worries! don't worry, you'll get all the lingo down if you keep hanging out here! :)

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Hi,

Wish I knew what "I so posted to this" meant?

I think she means she wrote a response earlier and it didn't get onto the thread. Absolutely nothing to do with you.

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My question is what does a daughter do now know she could be facing another unnecessary surgery. She has agreed to getting tested after this surgery. Being that I just found this information this morning I am worried that this surgery is another set back.

Hi Thinking of you today

How are you and your mom doing?

What did you guys decide to do?

Prayers are flowing your way.

Judy in PHilly

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Okay, so I'm going insane b/c I wrote this long post yesterday! Arg!

Me, too--I thought I replied shortly after the question appeared. Huh.... :huh:

Since it's a day later, did your mom go through with the surgery? And how did she do? My best wishes to her. Maybe when you get a chance, you could let us know of her progress.

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