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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,514
1/17/12 7:40 P

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Welcome to this great team. Through their support, I learned to tear down my food problems one at a time. I started with gluten removal and a new understanding of the Elimination Diet process. I test food- test me and test the new snail trail of changing thoughts and habits to better health by discussing nutrition with my Doctor of Nutrition. I have been G-F since 5-08 and do not plan to look back. I have removed thousands of items from my ‘foods I can eat’ list. One G-F specialist in a book once said that most Gluten-intolerants and Celiac people stay in a denial period of up to two years.

I am delighted have a program that will find the things that hurt and act as silent energy drainers. I hope to get back to some of the foods I stopped eating but maybe I never will. The wearing out of the immune system and adrenal glands is crucial to avoid since some doctors do not protect their own when they work 24 hour shifts. My ‘Find It and Stop That’ diet has me feeling so much better; my comprehensive program will shift as soon as I find another no-no filling my pantry shelves with foods I can not eat.

As each of my emotional upheavals based on ‘denial for a cause’ gradually settle to become an accepted new habit, I go back to sharing the kitchen space with the gluten eating other no-no’s eating family members. Whole nutrition, blood work lab reports with hormone balancing, and pharmaceutical grade supplements (without additives and preservatives) seem like magic that no prescription drug or a doctor’s denial could ever accomplish. These lessons have taken me down the unfamiliar road. All decisions to pull a food are based on body responses and or lab results. And most MDs do not have the time or deep knowledge of nutrition to be a primary resource for this type of extreme change. Nutrition is my decision. Choosing to go gluten free has been part of my success to the new me. I do not regret it.



Edited by: MARGIE100%PURE at: 1/17/2012 (19:43)
The greatest love story is your own.
If you miss out of life to the fullest; they win.
You are the happiness master of your own mind.
Thought is an active dynamic energy to harmonize and corrolate good.
Clear all paths to love thru forgiveness.
I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
Awaken new ways to approach the dissolving of a problem;
CINDYTW Posts: 5,783
1/13/12 11:07 P

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It is hard to go off gluten and go back on! My GI couldn't get me in for 30 days after and by then, it brought tears to my eyes to think about it! He said like 8 WEEKS to get the result! NO! I refused to do it. Great responses here! The testing is notoriously innaccurate, you may want to try GF and see for yourself.

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JENCORINNE's Photo JENCORINNE Posts: 1,932
1/13/12 1:55 P

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A lot of great advice already and adding my 2cents. 1st of all it will be an endoscopy (small intestine, done via mouth) not colonoscopy (large intestine, via the other end). I read your saying colonoscopy and went oh-no, wrong end. Speaking of that end there is a lab, enterolab that will test your feces and you don't have to be eating gluten for the testing. Some people/doctors don't trust them, do your own research and make up your own mind on the subject.
There is also gene testing, if you don't have the genes you'll never be positive for CD but can still be GI.
There's also the chance that the test was negative because there wasn't enough damage for positive numbers. I've found recently that different labs have different levels of what they call positive/negative. 1 lab might be anything over 20 and a 2nd would be over 100. Do you know what your numbers were?

You wrote about your periods going down to 1 or 2 days. That happened to me. My CD was activated I believe in an accident at 13 and not diagnosed for 20+ years. I went from week long heavy periods to a heavy month being 1 1/2 days by my early 20's. I was craving red meat all the time and at times had to stop myself from putting raw meat in my mouth. I repeatedly asked my Dr to test my iron for anemia, I knew there was something wrong. It always came back in the normal range and my Dr wouldn't look further. Since going GF the cravings have stopped, I have more energy, don't bruise as easily and my periods are usually 3 days, I celebrated when I had a 4 day one.



Edited by: JENCORINNE at: 1/13/2012 (14:03)
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GFNOMAD's Photo GFNOMAD Posts: 1,498
1/13/12 1:27 P

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Since she went as far as having the genetic test done, maybe she won't but why would she want to take the chance. Is her doctor up to date on the latest research. I've heard of recent cases where the doctor has denied the existence of food allergies therefore the person was not sick from that. That's what I was told 30 years ago.
There's a lot that the medical community doesn't understand yet and are discovering all the time. Even Dr. Fasano has been changing his position over the last couple of years. It wasn't so long ago that they said that CD existed in 1:10,000 and now it is 1:133.


Edited by: GFNOMAD at: 1/13/2012 (13:46)
Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,909
1/13/12 12:59 P

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Interesting. I know 2 people whose Dr. did tell them they were gluten intolerant and since their biopsy and blood work both came back negative they wouldn't necessary develop CD, but of course still need to stay on a GF diet. Now I am wondering if my cousin who went so far to have genetic testing and because of the tests her Dr. said yes she was gluten intolerant but the gene testing says she won't develop the actual Celiac.



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GFNOMAD's Photo GFNOMAD Posts: 1,498
1/13/12 12:10 P

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I am consistenly frustrated by the emphasis on CD and not Gluten Sensitivity. Only 15% of those with gluten intolerance (GI) will test positive for CD. If you are gluten intolerant and stay on a gluten diet long enough, you will only become more ill and finally develop CD.
The most telling way of discovering if you are GI is by going on a gf diet and keeping a food diary. You must be careful of hidden glutens and corss contamination. I recommend reading www.glutensensitivity.net and check established non-commercial medical websites such as the University of Maryland Center fro Celiac Research celiaccenter.org/
Barb (dx 1981)

Edited by: GFNOMAD at: 1/13/2012 (12:16)
Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
art-cleanse


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GRACEANDSPARK's Photo GRACEANDSPARK SparkPoints: (236)
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1/13/12 11:08 A

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I do have the tingling in my feet - but I'm also diabetic. I'm a well-controlled new diabetic, though, so the chances of it being diabetic neuropathy are VERY slim.

Part of me thinks that my issue with not being diagnosed "officially" is I don't want to seem like a lunatic when I tell people I can't have gluten nor do I want to seem like someone looking for attention, etc. My mom does that a LOT so I'm really sensitive about the idea of people thinking I'm just being dramatic.

That said, I know that if I have the biopsy and it comes back negative, I still won't be convinced till I try going GF and it doesn't work. So, I guess I answered the question if that's what I should do!

www.graceandspark.com - my blog - come say hi!


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JOANIEBUG46's Photo JOANIEBUG46 Posts: 4,212
1/13/12 10:44 A

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You have provided alot of insight. My DD was diagnosed with neuropathy, and has intermittent shaking and numbness, so we're hoping the GF lifestyle will also help that.

I will definitely look into the book you suggest as well.
Thanks again!


Success isn't a result of spontaneous combustion. You must set yourself on fire."
-Arnold H. Glasow


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SUEBNELSON SparkPoints: (70)
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1/13/12 10:05 A

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Wow. You sound like me when I figured this out. My blood test was negative and I was pretty sure that I fit the mold perfectly and requested a biopsy so that I would know for sure. My doctor wouldn't do that for me and told me to just go off for awhile to see if I felt better. He told me that I could always go back on for testing (WRONG! No way can I go back on. The effects of gluten in my system are too devastating.) So I went ahead and went off of gluten at his suggestion.

For me the differences could be seen within a week of being off. For a long time I wished that I had, indeed, had the "gold standard" testing done, but with hind sight I am grateful that I didn't go that route. I ended up not needing a test to tell me what is wrong as my own test of taking it out of my diet proved to me what was wrong. (When I accidentally get any gluten, I not only have intestinal issues, but I have neurological problems as well. When I accidentally ate gluten in the beginning I actually wondered if I might have MS as I lose feeling (numbness) in my fingers, have tingling in my left arm and leg, had to think about lifting my left leg to make it work right. My liver #'s weren't right either. All of this has been resolved with keeping a strict GF diet.

So, go off now or later? Hmmm. Well, if you are tested, which I would say waiting a month really isn't very long in the scheme of things, but keep in mind that sometimes even that test is negative as it isn't uncommon for them to biopsy tissue that does not reflect the condition. Some people take 7 years to get diagnosed correctly. If I were you and had the test done and it comes back negative, I would still go with a strict GF diet for at least a month to see if it improves your condition. The one thing I have learned through all of this is to put the responsibility of your health into your own hands and trust yourself as you know yourself better than anyone else, including doctors.

The other issue to keep in mind is what kind of person you are. If it is hard for you to have people look at you like you have a screw loose then have the test done. Friends, family, and the medical profession trust a test better than your own experience, sadly. The only reason I wish now that I had had the test done is so that I could have PROOF to share with my immediate family, as I am pretty sure that several of them have this, too, but they don't want to hear it. They would listen to me better if I actually had a test that I could show to them when I tell them that this runs in families.

One more suggestion...read the book called....Restoring Your Digestive Health: How the Guts and Glory Program Can Transfom Your Life. This book helped me know how to go about healing my digestive tract, teaching me how to be proactive in healing rather than just going off of gluten. I felt that this helped me the most in getting better, plus this book isn't just for celiacs, so that if your problems aren't gluten related, this book will help you find a way to better health quickly.

TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,909
1/13/12 9:49 A

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You might be just gluten intolerant. If not eating gluten helps than stick with that. I have a number of friends who have had a negative test but know staying away from gluten makes a big difference.
Hope you get better soon.
Donna



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GRACEANDSPARK's Photo GRACEANDSPARK SparkPoints: (236)
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1/13/12 9:30 A

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Hi! I'm a 30 year old young woman who started having "tummy issues" about 9 months ago. It started simply enough - just a bit of tummy upset now and then. Over time, it became much more common - I now pretty much always have a stomach ache.

On top of that, despite being outside a ton last summer (much more than usual - I was training for a triathlon), my vitamin D levels started coming back low. I've also been anemic for years. At first we thought it was due to normal female blood loss, but as that "loss" is only a day or two a month now (it used to be a week a month) and I'm severely anemic, the doctor considers it idiopathic - basically, we don't know why I'm anemic.

I started reading about Celiac and realized I have almost every symptom - even the less common ones! I finally asked my doctor about it and he didn't even blink about the test. He ordered it...and it came back negative.

I literally almost cried. I was so sure that this would be the answer. I was NOT GF before the test - I know better than that - so that couldn't be a cause of a false negative.

That said, is it possible I still am? He said we'd wait a month (we're also changing a medication he thinks might be causing the tummy issues) and if I was still feeling yucky, we'd do a colonoscopy and, if they found anything, a biopsy. However, that would probably be *scheduled* in a month, so it might be March or even April or May before that happens. My GI books pretty far in advance. I don't want to feel yucky till then just to prove I have it, so should I try GF on my own?

I'm sort of at a loss now, so any advice would be great. Thanks!

www.graceandspark.com - my blog - come say hi!


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