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How Many Of Your Gi Doctors Were Willing?


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33 replies to this topic

#16 SadiesMomma

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Posted 25 March 2004 - 09:48 PM

What is rhumitoid arthritis like? symptoms? I have been kinda hesitant to ask my doctor in fear that they think im nut for going there about every little thing. I just dont know though. I get severe pain in my ankles, shins, feet, knees, wrists and hands and fingers... I dont know how to explain it. I am 21 years old and experiencing pain almost daily. The pain in my hands gets so severe just a minute after beginning to write that I just dont do it anymore eventhough I love doing it. Also I cant go on long walks. I used to be able to do every sport, now I can barely walk to the mini-mart down the road without aching all over for the next day or so. Is this anything like arthritis? Anyone know what it could be?
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~*HEATHER*~
Living gluten-free, Egg, Dairy, Nut, Soy, and Corn Free since Winter/Spring 2003

Fathers be good to your daughters,
Daughters will love like you do,
Girls become lovers who turn in Mothers,
So mothers be good to your daughters too.

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#17 Laura

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Posted 25 March 2004 - 10:22 PM

You might want to look into fibromyalgia -- what you're describing sounds similar to some of my friends who have fibro.
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#18 SadiesMomma

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Posted 26 March 2004 - 06:25 AM

Wow.. serious? What is that? Can it kill me? :(
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~*HEATHER*~
Living gluten-free, Egg, Dairy, Nut, Soy, and Corn Free since Winter/Spring 2003

Fathers be good to your daughters,
Daughters will love like you do,
Girls become lovers who turn in Mothers,
So mothers be good to your daughters too.

#19 seeking_wholeness

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Posted 26 March 2004 - 08:36 AM

Heather,

No, fibromyalgia won't kill you! :) I believe the word means "muscle-fiber pain." It's one of those "syndrome" diagnoses where doctors don't really know what the cause is, but they have some theories and are working on some therapies that may produce improvement in symptoms. I have read about it in connection with chronic fatigue syndrome. You might be interested in checking out this website for one theory on the origin of these conditions. I hope this helps!
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Sarah
gluten-free since November 1, 2003

#20 gbeauvais

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Posted 26 March 2004 - 11:46 AM

Rheumatoid Arthritis (RA) is an autoimmune disease which has been indicated as having a possible/probable link to celiac disease in just about every medical article I have read.

RA is a crippling disease that causes extreme pain to the sufferer and often progresses from the pain to deforming the hands and feet. There is no cure yet, but people who are newly diagnosed, such as my husband, are now being treated aggressively with immune system suppressants, which help to keep the body from destroying itself, but in the process keep it from protecting itself. If you are in that kind of pain, I would highly recommend that you see a rheumatologist immediately. They can test with a blood test and get you treated as soon as possible. If you do have RA, delay can really cause major problems. A friend of my husband's died recently at the age of 33 because it had gone into her heart, and we have friends who are in and out of the hospital all the time. This is nothing to fool around with.

Even if you don't have RA, there's obviously something very wrong. People are not supposed to be in that kind of pain. My husband was misdiagnosed for years, carpal tunnel, tendinitis, etc. He was living on handfuls of aspirin and Ibuprofin. From your signature, I can see that you have taken your health very seriously. You have eliminated all of these problem foods from your diet, which is really hard to do, so you are obviously not a nut. If your doctor treats you like a hypochondriac, I would find another doctor fast and don't look back. If you would like me to send you some articles to show your doctor, feel free to email me privately and I would be happy to do that. sfpaperhanger@aol.com. Best of luck!

Gerri
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#21 debmidge

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Posted 28 March 2004 - 08:13 AM

SadiesMomma is correct when she states that she really can't shop around for doctors. The average American would be surprised to learn that most doctors don't treat Medicad patients. I put my mother in law (82 yrs old) on Medicad and I was under impression that that's all she had; so I called her doctors to tell them that she has changed over to medicad & they freaked out and told me that they could no longer treat her.....then they asked me if I dropped her from Medicare, to which I replied no. That makes the difference for a senior citizen, but young people who are forced to go on Medicad it's different. The problem is that doctors don't get reimbursed by govt enough for Medicad patients and if govt increases the payment to the normal level, the rest of us get higher taxes. It's a no win situation I tell you.
Same thing with my disabled brother. I called a back specialist who is the only Dr. in NJ who does some back procedure & in speaking with his office once they found out that he was on Medicad, they refused to treat him. Unbeknownst to me he too was on dual Medicare and Medicad so if he wanted it, they can treat him. I told this doctor's office that I hope that this doctor never finds the cure for cancer because he would only use it for the paying patients. The receptionist was speachless after that comment but she got my point.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#22 Niteyx13

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Posted 01 July 2004 - 03:23 PM

Seems everyone's stories run the same. I am still undiagonosed, but on a gluten-free diet, because even though my doctor "poopooed" testing me she said "cutting down on "carbs" may help me feel better and lose weight" as she is writing me yet another IBS medication Rx (I am 115 pounds - I don't need to lose weight!). I don't think she has any clue how serious celiac can be, and she wouldn't even pay attention to the article I had about the disease. I was diagnosed with hypo-thyroidism at 18 after becoming pregnant, IBS about a year ago (I am 27 now), was diagnosed with juvenille rhumaoid arthrits at 2, and have always had stomach problems, but my extreme fatigue didn't come until I got pregnant...but it has never left. The possibilty of celiac disease came to me when I found out my first cousin is gluten intolerant, and I started researching. I am positive I have it, but have not yet found a doctor who will test for it. I am working on getting some insurance now, go back on gluten, and I will insist on testing, if that does not work out I plan on going the Entrolab route. I am so glad I am not alone, and I am grateful for all of you that are here. =)

Deanna
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#23 dana_g

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Posted 01 July 2004 - 06:48 PM

I am so angry and frustrated reading these postings I could scream! It just shouldn't be so impossible to get a lousy blood test in this country! You guys have done such a good job at figuring out what's wrong with you, all you're asking for is a little support from your doctors! If I had to start over, I would go to the "Publications and Publicity" section on this site and print out the posting under Launch New Campaign On Celiac. THAT'S what I would give to my doctor, as it directly addresses the lack of information in the world of modern medicine regarding celiac disease, and what is being done to remedy it, including resources. It's geared toward pediatrics, but I wouldn't hesitate to give it to my doctor, since it talks about adults, too. It addresses the need to have physicians add celiac to their "screening checklist"...amen to that! To all of you who are struggling with clueless medical professionals (I use that word loosely) let me say don't give up the fight! Keep at it until you get what you need! We are all here for you! A big hug to everybody...
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Gloriously gluten-free--Dana

#24 lisabarella

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Posted 01 July 2004 - 07:08 PM

Deanna,
You NEED to find a good celiac doctor. Where do you live? I am 29 and I self dignosised this by going to my hemotologist with a list of blood tests that I wanted to test for. You need to do the same. Don't stop until you find a doctor that will help you. I will keep you in my prayers and I can refer you to some good doctors in California (South Bay) and PA (where my mom and brother are).

Lisa
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Lisa A. Barella, PhD
Reno, NV
Confirmed Celiac by biopsy - July 18th 2003
4 people in family with Celiac Disease (mom, two brothers, me)
lisabarella at hotmail dot com

#25 Whoelse

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Posted 03 July 2004 - 08:17 PM

My doctor has been great. I had a negative blood test and yet was still referred to my GI doctor because lucky me I am so deficient in B-1 I have beri beri. The GI doctor says it just seems so much like Celiac disease he is going to do the endoscopy.

I dont know what is going on but I certainly appreciate the open mindedness of my physicians.
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#26 celiac3270

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Posted 04 July 2004 - 06:03 AM

My regular doctor thought that I had "cyclic vomiting", something that's related to migraines (and there's a history of migraines in my family). However, he still recommended that I see a GI doctor to be sure it wasn't something else....wow, I am glad that I listened to him.

The GI ran bloodtests to check for allergies and a variety of other things. I also had a sonogram thingy done and a bone density test. Bloodtests showed that I had celiac disease, but no allergies. My bone density test showed that my bones weren't as "mature" or something as they should've been -- 1-2 yrs. behind, I think. He did the biopsy to be sure...and said that I had celiac disease....so he found it really well.

He was terriffic in finding it, but I think that now he isn't that helpful....I'm going back to him for "check-ups" on the celiac disease.....but he seems to think that I am saying that everything is because of celiac disease....he thinks that symptoms like diarrhea, cramping, vomiting, etc. are not related to celiac disease and it annoys me since I know that it is -- symptoms don't always, and don't usually, leave in under 5 months :angry: ! He thinks that I'm just attributing everything to Celiac.... <_<
Helpful to diagnose, but not to cope.....

-celiac3270
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#27 dana_g

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Posted 04 July 2004 - 02:24 PM

xx
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Gloriously gluten-free--Dana

#28 dana_g

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Posted 05 July 2004 - 09:29 AM

celiac3270, are you supposed to have a second biopsy to check on your gluten-free progress? My daughter, who is 11, is supposed to have another one 6-8 months after being gluten-free. I know you've still been having problems on occasion, and that you aren't allergic to anything, and that you are meticulous about not ingesting gluten. Just wondering what your thoughts are on this.
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Gloriously gluten-free--Dana

#29 celiac3270

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Posted 05 July 2004 - 12:17 PM

I've been....about 5 months, I guess and the doc. hasn't talked of another biopsy...I've heard of that, but I think that my doctor's going to stick with monitoring it by blood test....

I've heard of that, so I think it's just a matter of what the individual and their doctor feel is right. Some doctors might feel it necessary to do a biopsy, but mine, I think, feels that monitoring it with blood is suitable...for now, anyway

-celiac3270
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#30 dana_g

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Posted 05 July 2004 - 02:50 PM

Oh, well that's good that you and your doctor have it worked out. I know my daughter had a fair amount of damage--NO symptoms--and this doc routinely runs a second biopsy. She sailed through the first one, so we're not concerned about the second...I never thought I'd hear myself say THAT! I enjoy your posts--you know so much I have to remind myself you're a kid! Actually, I think you're a grownup trapped in a kid's body...
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Gloriously gluten-free--Dana


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