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CINDYTW Posts: 5,783
11/29/11 12:09 A

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Yes Britney the testing for Celiac only finds people with total destruction of the villi. Nothing in between. That is why it is so unreliable an indicator sometimes.

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FITBRITNEY's Photo FITBRITNEY SparkPoints: (4,303)
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11/28/11 4:50 P

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I am reading The Gluten Connection by Shari Lieberman and she believes that people with gluten intolerance are on their way to having full-blown celiac disease. People with intolerance do not test positive because they haven't damaged their intestines enough YET. There are stool and saliva tests that can confirm sensitivity/intolerance but there are only a few labs who do them. Plus doctors and insurance companies don't know about them. I agree with what's been said over and over. If you go off gluten and feel better then that's your confirmation.

Britney


-You have to participate relentlessly in the manifestation of your own blessings.


CINDYTW Posts: 5,783
11/23/11 5:50 P

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Feel free to ask! It is easier starting from no processed foods. Just be aware to check spices I had to throw some out for unspecified starches. Also herbal teas can have barley, something I learned the hard way.

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TRIN-SB Posts: 72
11/23/11 4:46 P

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Hi,

I just wanted to add another THANK YOU for all your answers, thoughts, etc.

Today I have sorted my pantry and what is in my kitchen. There is not as much to dispose of as I thought (the pasta goes to my husband). Because I have already banned glutamat and yeast extract, I don't have any convenience food at home. I even made something I can use to cook my own vegetable broth (veggies and salt)... one has to be creative!!!

I'm sure I will ask for help again! :-) Have a nice evening!!!

Sabrina

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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,512
11/23/11 10:33 A

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I have no hard feelings from your words, Cindytw. I just wanted to clarify a few details. You said both are real. I love the varied perspective on the ills generated by gluten. IBS is food particles going into the blood stream; that hurts. The healing is real. This is what we are all striving for; we want fast miraculous intestinal wall repair, pain removal, and the ability to continue to eat it. We know this is not valid. Glyconutrients are essential to this action and the trace sugars found in fruits and vegetables in possession of the trace sugar N- acetylglucosamine, body synthesized proteins and essential fatty acids are most needed at this juncture of the process. Clean fatty acids like organic coconut oil speed things along in the restructuring and hole filing but it never seems fast enough when pain is screaming and being ‘afraid of food’ takes a strong hold. You have been here for me from your first posting. I needed you. I then added you to my friend list really early in your spark and Cel team membership. Keep posting, Girl. We feel your words hit your heart deep and true; just like cupid’s arrow does in a romantic setting. Wise counsel based on personal experience and actual quotes from trusted sources has always been your creed. It is good to see the near but different side to the similar bodily affects and that even the doctors get confused on these topics. Is this a chicken or an egg? / Is it allergy of intolerance? The lines blur when pain wants quick answers.

YAHOO, this team membership has grown since its beginning in 2007 to well over 3 thousand people. I have been counting since summer 2009. A few of us write but I am sure all of us read nearly every word. We want to be filled with the hope you inspire and yourself accomplished when you draft for us in heartfelt words. It is as if you are expressing our feelings and yours, simultaneously, with each familiar answering session. Every time someone asks the classic questions; I too, can feel the huge need for hope behind the dire stress requesting new information to them with your offering of true facts. And comprehension begins to dawn on what the doctors have stated, which sounded like gibberish at the time; or has yet to explain.
Yes, gluten is gut damaging.
Yes, the body responses seem different.
Yes, there is hope.
But we will always be forever changed with implementing these permanent changes. One doctor was quoted as saying, ‘Some can take 2-3 years of denial and self testing to get past that emotional barrier found in ‘free will’. It seems, progress is based more on the ‘ability to accept’ than it is to physically acquiesce to or physically allowing ourselves to learn the protocols and avoidance rulings. Knuckle down and do it and let the feathers fly! The unfair shock of discovering cross contamination is scary and moments of self trust seems lost because control over the hidden ones is more training than obvious label identification. Finding all the little hidden spooks sure seems like a confidence booster in a silent conquering success story. The published books, the team camaraderie, and the social adaptations are the difficult journey steps, especially when we ride deep in denial. The doctors do not say so the condition is not real or so our personal denial assumes. Reality sure hits home as the gut pain and complete comprehension sparks anger and frustration at the health system and to the harness of eating laws and chaffing of the newest chains placed on food choices are the necessary changes in most aspects of our social lives. Adapt we must and the understanding what it is and how it got there is a soothing activity to the sensitive emotions as the stages of actual grief of ‘an old life lost’ work through to believing in self as all the mandated gluten-free rules are enacted to live this way. I am on the other side. I am gluten-free. It still hurts socially! But with my friends here on these Spark pages and in support groups throughout the world I can live the new life and blaze my own trail to a healthier me. Thanks, Cindtw. Thank you, Team


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
11/22/11 6:24 P

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Sabrina no fight here! We are all free to share our opinions even if someone's is a little different.

Margie I do not mean to down-play reactions that gluten sensitive people have I was only stating what is generally accepted as true. So far I have not heard that gluten sensitivity does the same type of damage. If it did, everyone would be diagnosed Celiacs. I know that there can still be horrible reactions, just not the specific ones Celiac testing is looking for.

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JENCORINNE's Photo JENCORINNE Posts: 1,932
11/22/11 3:49 P

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emoticon

My 2 cents worth - As others have said the testing can be inaccurate. Unless you have the gene testing and know you don't have the genes CD can always be on the table. It's possible you weren't eating enough gluten for the test to be accurate or not enough damage has been done for the antibodies to be made for the test to accurate.
Some doctors don't believe in gluten intolerance but are slowly turning around, slower than accepting CD is on the rise.
If you feel better off gluten, and you're other health issues might get better too, by all means go GF, we'll support you here. emoticon

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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,512
11/22/11 2:43 P

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This is going off the thread theme, sorry.
Trin-SB- In hindsight, my doctor had explained that any one of the four main channels can get blocked with toxins as in an overload of back work once hidden in fat cells. As the liver cycles and processes, the excess of things get placed in pocket places like the joints and in fat cells. Dieting can hurt from the haunting of poisons or toxins coming to the foreground again. In dieting the liver patterns are shifted to work real hard. My liver does storage mode really well. Toxins are now exposed again because of energy recall and fat cell reduction. A toxin can be a food particle of an unfriendly nature (intolerance item or a protein allergen; or the specific cycling is in need of enzymes at that moment are in short supply. It could also be caused by heavy metal; or foreign life like a fungus or bacteria (mold of many kinds bloomed in the aftermath. I am not a doctor but due to my many food intolerances and place of residence; I am learning to please my liver and my immediate tongue satisfying needs. BUN, Bilirubin, infections and high white blood cells among other things were flying high flags.
BUN: At a Glance | Blood Urea Nitrogen - Lab Tests Online
labtestsonline.org/understanding/ana
ly
tes/bun/
- 121k - Similar Pages Jul 5, 2011 ... Overvew of the BUN (Blood Urea Nitrogen) blood test, used to evaluate kidney function and monitor the effectiveness of dialysis.

Laboratory tests
www.sh.lsuhsc.edu/fammed/OutpatientM
an
ual/content.html
- 94k - Similar Pages Table containing common tests done in an outpatient setting and some characteristics of ...

BUN is directly related to protein intake and nitrogen metabolism and
Bilirubin - blood: MedlinePlus Medical Encyclopedia
www.nlm.nih.gov/medlineplus/ency/art
ic
le/003479.htm
htm - 19k - Similar Pages Bilirubin is a yellowish pigment found in bile, a fluid made by the liver.

This article discusses the laboratory test that is done to measure bilirubin in the blood.
Bilirubin
www.elmhurst.edu/~chm/vchembook/634b
il
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- 11k - Similar Pages The heme initially breaks apart into biliverdin, a green pigment which is rapidly reduced to bilirubin, an orange-yellow pigment (see bottom graphic).
I was in the throws of several complications: Fibromyalgia/Chronic Fatigue Syndrome/hypothyroid/ Adrenal Fatigue (most undiagnosed at that time)/ wearing mercury amalgam tooth fillings/caffeine addiction (especially in diet mode)/ half a century aging body with declining hormones and less hydrochloric gut acids in strict diet modes/ 24 hour lifestyle (on-call at work, while rebuilding my under construction home)/ in Katrina storm town with 99 degree summer heat and high humidity environment and my filters were backing up! My immune system was working but not fast enough or well enough to remove my toxins as I sent them in. The crap ended up as fat. Fast increasing with serious inflammation and lots of pain relievers both prescription and over-the-counter as noted by my doctor. Food issues have to be met by the gut tools that digest my eating desires and pain remedies. I needed to relearn how to protect my protectors, the filters of my gut that protect me from environmental influences, even when the food medicines and the immediate world around me are not good for me. I have to pay the fiddler. Sounds like the effects of that drug the doctor has you on, Trin, is turning and some other measures need to be addressed. I had to go natural. I am not a doctor. I did some research; so this is a pick I found to explain GGT on the internet…
GGT blood test level and natural treatment by Ray Sahelian, M.D. ...
www.raysahelian.com/ggt.html html - 26k - Similar Pages GGT is an enzyme that metabolizes extracellular glutathione and can be induced by various xenobiotics, drugs, and ethanol. All these compounds, including ...

Edited by: MARGIE100%PURE at: 11/22/2011 (14:49)
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;
TRIN-SB Posts: 72
11/22/11 1:11 P

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@Margie...

which one of the liver lab results is not right???

I've got high GGT levels (due to medication) and they are slowly rising...


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TRIN-SB Posts: 72
11/22/11 1:09 P

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Hi,

I didn't want to start a fight here... I just didn't understand what I read about it and my doctor was no help here...

Thank you for explaining *again* the difference. I think I've got it now! As I said, I've got other issues, too, and sometimes I'm overwhelmed with all the info I have to read and digest.

Thanks a lot!

Sabrina


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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,512
11/22/11 1:09 P

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Suebnelson is right about the liver and it’s big roll in digestion of glutens. My MD doctor requested an update of lab tests and discovered a flagged item. I sit at a high BUN ratio and other liver working tests. The MD interpreted this as ‘within normal range’. My Doctor of Nutrition advised some treatment to help pull down the higher liver numbers. Each doctor and lab result interpretations vary from the basis of practices beliefs and the tools available to them. My IBS signs have diminished but the liver characteristics are not wholly sound, yet. The MD saw things as ‘fine’; the other trade doctor sees potential of trouble and wants to act now to prevent while we still can. The other trade doctor will sit with me for all my silly time consuming questions and discuss ever notation and point in my lab results. It works like a parent/teacher conference. This is one area of care my MD does not have the time resources to direct me. I am the general contractor of this gut reconstruction project. A second opinion was wanted. I am lucky to have places to ask these questions and get fair realistic and often fact filled answers. Sometimes I feel overwhelmed by the information. Sometimes it will lead to more comprehensive questions at our next visit.

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;
MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,512
11/22/11 12:38 P

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Cindytw- May I adjust a detail, here? Gluten sensitive is ‘an ouch’, too. We address this by learning the tricks from actual Celiac tools. We face the same social rejections from the people around us. We get IBS, we get inflammation that hurts and damages tissues and prevents the gut from absorbing nutrients that lead to malnutrition and other disease complications because of it. I am delighted that you see a difference and can quickly respond to any question asked of this team. Thank you for being you!!! And thank you for sharing your time information and personal stories with and for us.

I tested negative on the Antigliaden blood testing. With the tips and emotional help from this very team I am able to find other complications that may have lead to my gluten eating demise. Hunger leads to binging on the wrong stuff. No eating at all means malnutrition that in turn leads to allergies, pain, inflammation and disease. Eat right-feel your best. These are some of the guidelines of this good gluten-free team practices.

I cannot have citric acid found in many fruits and vegetables. I found that my body’s response eating gluten is not an allergy but intolerance. I also found my body does not approve of sulfites of preservatives and in lots of normally sound wise whole organic fresh fruits and vegetables. Gluten Sensitive people benefit from most of the very same tools Celiacs use.

And we count our blessings that the blood complications may not directly put us in an emergency situation. And hope that the professionals that do care for our fellow team members that are Celiac in an emergency are well informed about gluten and assisting them to return to good health and out of crisis zones of shock. Thank you for a team blend of Celiac and Gluten-Free I would not be as well off if I did not benefit from our founder, Dotslady, and this team’s generous leaders and members. I give thanks for my newest food tips and the chance to express my oldest gluten success stories.
emoticon

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;
SUEBNELSON SparkPoints: (70)
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11/22/11 12:15 P

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The forum has probably heard this from me before, but OH MY GOSH. Yes...you can still be sensitive without a positive test result. My blood test came back negative and I requested an endoscopy to which the doctor said no. She told me I probably just had IBS and that I should try the diet to see if I felt better. Subsequently, I discovered (after going completely off) when I accidentally ate some gluten a few weeks later that I am SO COMPLETELY sensitive to gluten it is ridiculous. My body seriously does not like it at all. I get digestive problems, terrible insomnea, neurological problems, anaphlaxis, and headaches...basically a full system rejection. Consequently, the GI doc tells me it's an allergy and the allergist tells me its a GI problem. It really doesn't matter since I know, myself, what is causing the problems. Gluten is HIGHLY associated with auto-immune disorders which run rampant in my family. Thank goodness I figured it out. Now my liver tests which had come back abnormal are back to regular levels and I feel 10 years younger.

SUN_CLAY's Photo SUN_CLAY Posts: 16,255
11/22/11 11:57 A

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I am gluten sensitive. I never was diagnosed as celiac because I had a nutritionist suggest trying GF for a few problems I had. I was GF for 2 years, then my sister AND my uncle were diagnosed as celiac. I probably have it, but I don't plan to eat it again to find out. I know it bothers me both stomach/intestine issues and skin. If you feel better, than why not try it for a while?

Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

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11/22/11 10:56 A

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I was tested two years ago; however I was gf then and of course the test came back negative. I am still gf as I feel better and do get sick if I ingest gluten at all. I was not going to eat gluten to get tested again. It is not worth getting sick all over again.

What Cindy said is so true. If you feel better being gf then I would stay gluten free.

BTW welcome to this group. It is a great group and very supportive.

Char

www.celiac.com
I awoke this morning with devout thanksgiving for my friends, the old and the new.
- Ralph Waldo Emerson


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CINDYTW Posts: 5,783
11/22/11 8:57 A

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Gluten sensitivity and Celiac disease are 2 different things but are both very real. The big difference is that those that are just gluten sensitive don't damage their tissues when they eat gluten (that we know of). However, the Celiac testing is not 100%, so you could still have it. If you feel better gluten free, then that is your answer. Many of this group are self-diagnosed and just know that this is the way for them. You have to be the judge of what is best for you in the end.

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TRIN-SB Posts: 72
11/22/11 6:06 A

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Hi team,

I'm new to the group. I've got several chronic diseases... I guess you had a similar topic before...

My question is:

I tried a gluten-free week because I have IBS (irritable bowel syndrom) symptoms. They all disappeared three days into the week. Then I started eating toast again and the symptoms were back.

My blood test results (the autoimmune... ?) were all negative. So my doctor said that it is unlikely that I have celiac disease.

Is it possible to not have celiac disease and still be sensitive to gluten???

Is there anybody here who feels he or she is sensitive but does not have the disease???

Thank you very much for your answers!!!


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