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What To Do


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12 replies to this topic

#1 Mark C

 
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Posted 09 November 2004 - 11:59 AM

I have been diagnosed with celiac about 1+1/2 years ago.I had suffered through 15 years of doctors telling me I had I.B.D. or crohns disease.I never had a diagnosis until a year and a half ago.I was diagnosed as celiac and went on a gluten free diet.My villi have recovered,my levels in my Iga & Igg,antigladdin are now normal.My problem is I dont feel ANY better.I have severe pain and discomfort after having a b.m.,and I usally go about 3-5 times a day especially in the morning.Even though I only eat one time a day.I also tend to get very nausiated after b.m.s and eating.I watch my diet very close and eat or drink anything even questionable.Even the persciption pain medication my doctor gives me barely lets me function on a low level.I really beleived I was going to start feeling better ...........but it just has not happened.I even thought I might have bacterial overgroth so my doctor prescribed flaygle for 10 days but no change.
My biopsys always looked bad.........crohnic severe inflammation,loss of villi,ect.My igg,iga,antigladdin were all abnormal as well.Why do I still feel terrible? :(
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#2 MySuicidalTurtle

 
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Posted 09 November 2004 - 02:07 PM

Are you sure you are 100% gluten-free with food, medication, shampoo, and such? Seems stupid to ask but sometimes it's there without knowing it.

Maybe more than one meal a day will help A few small ones?
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#3 Carriefaith

 
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Posted 09 November 2004 - 02:41 PM

Hi,
I know how you feel. I'm over 8 months on the gluten-free diet and still not better. (I'm currently in the process of figuring out why I'm not better). It's still a mystery :unsure:

One suggestion I have is to try and eliminate ALL dairy products. This may help(maybe you've already tried this).

I can't tolerate even small amounts of dairy. If I have anything with milk or lactose listed as an ingredient I'm sick for days! Blah :blink:
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#4 wclemens

 
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Posted 09 November 2004 - 10:34 PM

Mark,
I hope I can help. For the past 2 years I got really diligent about eliminating gluten, milk, dairy, egg whites, and yeast, the foods which are poison for me. I cut out almost all canned or processed foods, and read labels before touching anything which might cause a problem. I feel great! I turned 60 Oct. 8th and feel better than ever before, which is good because I have had symptoms of Celiac since I was 8 years old. I retired from teaching school after 25 years and am now applying to law school (I have passed my Law School Admissions Test).
I thank God for this newfound wellness and health, and I take one day at a time, realizing that I must be healthy to live out the unique and special plan for my life. It is easy to stay away from all those foods I listed, when I feel so well.
You could start by eliminating one food at a time and seeing how you feel. You'll know pretty soon whether it is responsible for your distress or not. There certainly is HOPE, and there will be joy and jubilation too, when you listen to your body tell you just what it wants and needs in order to function more efficiently. I am hoping that you will discover good health. Keep on going on! Welda
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#5 YankeeDB

 
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Posted 10 November 2004 - 08:06 AM

You might want to get tested for other food allergies. If your doctor won't order the test, you can get one yourself from York Labs (which I did) or another place.

I feel best avoiding: gluten, dairy, yeast (includes vinegar and (sigh) wine--I recently found Ener-G foods has a powdered yeast-free vinegar which I like)), soy (big one!), eggs, cashews, pears, and sunflower seeds.
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#6 lee

 
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Posted 11 November 2004 - 07:06 PM

just be very careful about what u eat, esp. going out to restaurants. they might say it has no flour but what about soya sause, stock cubes etc.
i have very low iron due to being a celiac my whole life so try taking vitamins and iron pills. good luck .
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#7 Mark C

 
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Posted 12 November 2004 - 11:05 AM

It has beat me down so much the last 17 years.My symtoms have not changed one bit since gluten-free.I have always had bad nausea all day,pain and nausea after a bowel movement,cramps ect.Pain about 1 inch below my bellybutton on the left side after b.m.The pain medication and bently is the only two meds I take and I know they are gluten-free.I also feel this constant preasure in my bowels.........feels like I am never done going.Also have this knawing feeling in my stomach like bad hunger pains. I have lost so much buissness because I am always sick.The past few weeks have been tough.....................5-6 b.m.'s a day/borderline diarrea.I cant concentrate when I am so uncompfortable.
I worry if there can be something else wrong.I am 38 years old and have always dreamed about starting a family.My wife wants to as well...............but I am scared I will get so sick I wont be able to work.I feel like I can barley take care of myself most times.I am afraid the baby could be born sick.There are a million things that have gone through my mind.My doctors have come to a dead end road with me.They really dont know what to do with me now.People talk about having good/bad days.I have not had a single day in 17 years I havnt felt like this..................and it is torture.Will I ever get better?
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#8 seeking_wholeness

 
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Posted 12 November 2004 - 11:44 AM

That sounds awful! Have they actually ruled out Crohn's disease in your case? Another possibility that sounds like it might be quite relevant is microscopic colitis, which sometimes goes along with celiac disease but doesn't always improve at the same rate. I don't know much about it other than that, but some poking around this site and the internet might yield further information.

I hope you can get to the bottom of this quickly so you can start to feel better soon!

--Sarah
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Sarah
gluten-free since November 1, 2003

#9 wclemens

 
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Posted 13 November 2004 - 12:27 PM

Dear Mark,
I felt so bad reading how horrible you have felt these past 17 years, and I want to say that you MUST be closer now to a diagnosis than you were then. It is often hard to remember any good times when you are going through bad times, wait, didn't you say you have a wife? Concentrate on the day you met her. Did you know you loved her immediately? Have you thanked God for sending you such a wonderful partner? Maybe you can focus on one thing at a time that will spark a feeling of gratitude (maybe thinking of your mom or dad, or a day when you and a sibling did something--anything which will remind you of how much your family and friends love you). Have you ever gone on an elimination diet? You stop eating altogether, then add back one simple food at a time, hoping that your body will be able to tolerate what you have chosen. That is how I found out what not to eat, even though I was spending almost a fortune on doctors, specialists, hospitals, and allergists. That is why I say our bodies are our best friends, because they are so loyal and faithful to give us the information we need.

I mostly eat meat, chicken, fish, salad, fruits, vegetables, and nuts. Seldom do I veer from that diet, and although it has taken years and years to get to this point, I feel better than ever. I am 60 and have been fighting this disease since the age of 8. Please grasp on to the hope that we are all sharing here with you. Some days in the past I didn't even want to get out of bed, but God encouraged me to just take that first step of the day, and everything always fell into place after that. I know that things have to get better for you--it must have been so dismal to have endured what you have already. I hope and pray that you will see the light at the end of the tunnel, and keep moving forward toward that. Welda
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#10 ryebaby0

 
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Posted 14 November 2004 - 05:39 PM

Have you tried (you must be sooo tired of sentences that start that way) a simple diet of rice, then rice/chicken.... ? To isolate what food bothers you? Have you been tested for eosinophilic enteritis and/or have your doctors discussed autoimmune enteropathy? Both of those latter conditions are not going to reverse themselves or respond to diet. (My son has AE; an extremely rare case in kids, but less so in adults) I wish I could help you more. I think your concerns about a family are valid, and thoughtful. Tomorrow is another day, and another chance to learn something that can help you get healthier-- don't give up

joanna
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#11 llj012564

 
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Posted 15 November 2004 - 06:04 AM

I have been gluten-free for almost a year and still not feeling well so you are not alone. I have gone over my diet with a fine tooth comb and reduced it to only fresh foods nothing processed in hopes that this would make a difference. So far not helping much but Im not giving up hope it may take time. If I were in your shoes, given the amount of time you have felt like crap I may ask to see another Dr. and get someone elses take on you condition. Sometimes our own Dr gets to close to it and cant see the forest for the trees. Just remember you are the only one who can take charge with your Dr and tell them what you want the cant read your mind. ;) Lora
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#12 baldridgem

 
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Posted 22 November 2004 - 04:22 PM

To all you folks that are not feeling better on a gluten-free diet.
May I subjest you try the Specific Carbodyrate Diet.
Go to Breaking the Vicious Cycle for info. MB
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#13 Rikki Tikki

 
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Posted 22 November 2004 - 06:18 PM

Hi Mark:

I really hope that you feel better soon. I know what you are saying when you say after you find out what is wrong we should feel better. It is not always that way though, I struggle with it often. I read in a medical journal that something like 40 percent of the people do not heal.
I am not sure about the Bentyl, I also take it but when I looked on the list this weekend I couldn't find it.
I would watch your medication and be sure not to eat process foods. Check all your labels to be sure nothing is added. Sometimes this food really sucks and I miss the taste of regular foods and have to admit to cheating a time or two. After a few times of the severe symptoms that follow I have learned that the instant gratification I would get from eating is not worth it.
As far as the extreme hunger pains, I have found that I usually feel that way just before I get sick.
How is your weight gain? I have not been able to put much weight on and I am still about 20 pounds underweight. I also only eat about once a day but we should eat more, sometimes it feels like it's not worth the trouble.
Also, I don't know where you live but when I went to the celiac conference at Stanford last month they said they are going to start a celiac clinic there. That is in Palo Alto California, too far for me but if you live close you might want to check it out.
Hang in there! We are all just a click away!
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice




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