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DEBBIERNDDHC's Photo DEBBIERNDDHC Posts: 461
12/27/10 4:16 P

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Welcome Mara! I will tell you what my diagnosis consists of. I had the gene, and the antibodies. I also have the nutrition deficiencies and all over body pain. and the headaches from hades. Anyway, i have not had the biopsy. I have never had GI complaints so i dont know, I haven't seen a gastroenterologist, so I don't see the point in it. We have these conversations in medicine (i am a nurse) all the time, if your testing will change your plan of action, then you do it. If it isn't going to change anything, then why do it? Why run up a debt or put yourself through the risk of the procedure itself if it doesn't change anything? I have been very lucky, my pcp is an awesome dr from India and is very holistic. He is very current on the cutting edge of medicine but also in middle eastern medicine etc. He referred me to the nuerologist who tested me for celiac. this particular dr is also a licensed accupuncturist. His entire staff is very versed on the lifestyle of gluten free and so forth. So, i see how fortunate i am when i hear others who have such a hard time. I welcome you Mara and i support your mindset as well. It is a shame that some dr's are so stubborn about something that isn't "their Idea". Good luck with it as well!

NEVERGIVEUP68's Photo NEVERGIVEUP68 SparkPoints: (20,120)
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12/17/10 1:10 P

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Welcome to the team Mara. I too skipped the doctors and listened to my body.Doctors don't always know everything. My problem is that i eat now and than gluten that make me sick. I am new to all of this.

Edited by: NEVERGIVEUP68 at: 12/17/2010 (13:11)
KRAVBABE's Photo KRAVBABE Posts: 1,181
12/17/10 12:32 A

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Welcome to the team Mara. I too skipped the doctors and listened to my body. Fit_Hawg is right. Doctors don't always know everything and there are probably a lot of people who should be GF and don't know it.

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DJ4HEALTH's Photo DJ4HEALTH Posts: 43,972
12/16/10 11:13 P

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Hi and welcome to the team. I agree with not putting your daughter through all that pain and damage just to get tested. I would also tell your doctor that these are her symptoms and that you will not subject your daughter to all that again just to get a test that may or may not test positive for Celiac emoticon

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley


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JENCORINNE's Photo JENCORINNE Posts: 1,933
12/16/10 9:19 P

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emoticon to the group!



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CINDYTW Posts: 5,783
12/16/10 8:34 P

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Oh that gives me such hope! It has been harder for me to give up dairy than gluten! I LOOOVE my cheese!

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MAPHIX74's Photo MAPHIX74 Posts: 375
12/16/10 8:10 P

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For me it has been the opposite. Seems like after many years off gluten, my system has healed enough that I can now digest dairies much, much better.

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CINDYTW Posts: 5,783
12/16/10 6:46 P

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I can't tolerate dairy anymore either and sometimes suspect more are coming...I think for me it had some to do with getting older, but more with quitting smoking. I was a nicotine junkie for many years and all I had to do if something didn't feel right was smoke a cigarette and I felt better. Without that I had to listen to the signals I was getting and deal with them. Plus, since it was a trauma to my system I bet it aggravated the Celiac, being an autoimmune disease.

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JENN03275's Photo JENN03275 SparkPoints: (33,101)
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12/16/10 3:32 P

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Has anyone found that as they got older that food allergies and intolerances are coming out? Along with gluten, I avoid walnuts and bananas because they make the roof of my mouth burn. Well, I still eat bananas becuase I love them.

Jenn

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ILLINITEACHER52 Posts: 7,257
12/16/10 2:58 P

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Welcome to the team! I don't have a medical diagnosis either but am not going back on gluten to get one. I was told I have IBS but never told how to resolve it. I avoid gluten, dairy, corn and peanuts and all is well.

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JENN03275's Photo JENN03275 SparkPoints: (33,101)
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12/16/10 2:30 P

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Welcome to the group! Everyone here is very supportive and helpful. My dr. Won't diagnose an intolerance but I have decided that I am in control over my body. I have been diagnosed with IBS in the last 5 years and most recently fibromyalgia due to Lyme Disease. Much of mt research has shown that a GF diet can help these conditions. So why not try it!! I am in control of what I put into my body!

Jenn :)


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CINDYTW Posts: 5,783
12/16/10 1:27 P

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emoticon I don't have a "true" diagnosis either because I refused to go back on gluten for a number of WEEKS to get the biopsy! I did have a positive blood test, so both the GI and my primary just conceded that I have it and that is it. I already knew before the results came in that I had it though...and would be GF today regardless! Sometimes it is just a matter of doing what you know is right, even when some disagree.

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BLONDLEE's Photo BLONDLEE SparkPoints: (0)
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12/16/10 1:25 P

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I have to agree with everyone else. I had a positive blood test but still wanted the biopsy because 5yrs ago that was the gold standard of testing. I had already been GF for over 6 months and my test came back negative. I had been eating gluten for a week before like you did but that was not enough time for the damage to be visible. I would ask your pediatrician if she could order the new DNA test. We cannot get it in our area yet so my 2 yr old has not been tested or my other 2 girls. I refuse to have them go on gluten just for the sake of testing. If your Dr. doesn't back you with your concerns I think you either find a new Dr or lay it all out for her. Tell her this is a serious condition that has long term health concerns and that you need her to research and support you in this. It is so much easier to have support than it is to feel like you are backed up against a wall. You will get frustrated(you are already sounds like) and be hesitant to even go to her. (like most of us are)On the other hand if she is not willing to at least support you I would seek out a ND. If you have any in your area. They surely seem to understand each person's body better. I see one for CD and Hashimoto's. She is amazing! Good luck!

CAPRINEQUEEN's Photo CAPRINEQUEEN SparkPoints: (3,732)
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12/16/10 1:18 P

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Acupuncture and Chinese Herbal Medicine have helped me so much, that I am back in school learning these two! I work with elderly clients who have a lot of unresolved pain issues. I am hoping to be able to give them some relief.

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MAPHIX74's Photo MAPHIX74 Posts: 375
12/16/10 12:54 P

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Thanks for the replies and for the encouragement!!!
I agree...why bother?

It is my daughter's new pediatrician that is insisting with getting her tested. For her it is black or white: either she has CD or not. She doesn't even consider Gluten Intolerance to be a real health condition.

I'm also so glad to see others here who rely on holistic medicine. After being sick for years and going to so many doctors who had no clue, I lost confidence in conventional medicine, at least when it comes to chronic conditions. I started using holistic medicine many years ago and I have been so much better and healthier! I noticed that holistic doctors do listen to you and respect your instincts for the most part.



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FIT_ARTIST's Photo FIT_ARTIST SparkPoints: (114,302)
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12/16/10 12:42 P

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Yeah. really! Why bother??? If it makes you sick why do it?

~Laura

"If it tastes good; Spit it out!" ~ Jack Lalanne

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CAPRINEQUEEN's Photo CAPRINEQUEEN SparkPoints: (3,732)
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12/16/10 12:41 P

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Welcome! You have a lot to teach us. I am just 9 months into a GF diet, though looking back, I have had undiagnosed symptoms all my life.

I agree with Laura. It is your body and you are the expert. Drs are good assistants as are Naturalpaths and Acupuncturists...I would not go back on a Gluten diet for anything!

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BAILEYS7OF9's Photo BAILEYS7OF9 SparkPoints: (126,654)
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12/16/10 12:37 P

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emoticon emoticon to the Team!

As this is hereditary and you have a family history w/ it, I would not believe you would have to have a diagnosis as you feel so much better w/o it. I was GF for a month and went back on for a week for the test and was miserable and the test came back negative anyway.

I got mixed replies. Mostly they said I was not on gluten long enough and to do it again. H*ll no! The end result is the same anyway.





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FIT_ARTIST's Photo FIT_ARTIST SparkPoints: (114,302)
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12/16/10 12:36 P

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It sounds as if you are listening to your body. Doctors really don't know everything...
My naturopath says there are a LOT more people out there who should be GF who are not diagnosed.
If you are doing well, thriving and healthy, that's all that matters.
emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

~Laura

"If it tastes good; Spit it out!" ~ Jack Lalanne

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MAPHIX74's Photo MAPHIX74 Posts: 375
12/16/10 12:25 P

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Hello! My name is Mara. I have been on a gluten free diet for 10 years now!!!
I went on a GF diet after my mom, my aunt and my sister all got tested for CD and got positive results. I had all of the same symptoms and all of them improved after going GF. So even though I didn't get tested, I do consider myself to have it. I do know I probably should have gotten tested first but after going GF I could not bare making myself sick for the sake of a diagnosis.

My 5 year-old daughter started showing symptoms as soon as she started eating solids but it wasn't until she was 3 that I stated her on a GF diet as well. She is healthy and growing strong on her diet. I know...I should have had her tested too but it is so clear to me that she gets sick when she eats gluten that again...since I already know how to keep her healthy I don't feel I need the testing and diagnosis. Many fellow celiacs disagree with my approach and some doctors have already tried to put us back on gluten to get tested. We have not been able to go on gluten for more that a couple of days and after that, we are so miserable, we just go back to our GF diet.

When symptoms are that clear...is the diagnosis that important?
Nice to meet you all!

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