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Compassion

Where To Begin...

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Hello everyone!

I am new to the forum, but have been learning and reading for the past few months. I have finally gotten my biopsy results back, after fighting for someone to listen to me for years... and when she read the results over the phone it said that there were no findings for celiac disease. I think the nurse was a bit taken aback when I started to cry on the phone, I am sure that most people don't cry when they hear they "don't" have a disease. But I was so convinced that this was it. After many years of feeling miserable and searching and being patted on the head and told it was "stress", "fibromyalgia", "IBS", "nothing physical, perhaps you should take an antidepressant", I thought this would be it, the end of my search. The beginning of another hard journey to be sure, but at least a path that has a name.

However, I have been gluten-free since the day of the biopsy and my symptoms are almost gone. Because I didn't have the diagnosis I have knowingly cheated three times... and each time I have almost immediately had to deal with the ramifications, and I am finally to the point now where once again I have to trust my body, trust my instinct and listen to my own heart and follow my own path to healing.

I guess what I am seeking information on written elimination diets... a long time ago I went to a naturopath who had done testing and I had Candida Overgrowth, and so I was put on an elimination diet followed by a yeast free diet... and I am looking to find something that would be helpful to chart and figure out what exactly are causing or exastrubating my symptoms. There is something that isn't sitting right with me and I am scared to think it might be rice, because that has become my new best friend...

I am just so tired of searching, of trying, of getting it right and then getting it wrong... It has been so helpful to hear of others that are struggling and shining through some of the same things... it has made this whole process a lot easier.

Thanks for any thoughts, and I look forward to connecting more in the future.

Compassion

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The biopsy could be wrong. It isn't 100%....especially if you've been eating gluten-free, your insides may have had time to heal, and therefore the damage wouldn't show up on the tests! But I say as long as you're feeling better on the gluten-free diet, don't stop! You're listening to your body, and its telling you that something about eating gluten makes it sick!

I don't have much to offer about the elimination diet, I'm sure someone more knowledgeable will be along shortly...

In the meantime, I hope you continue to feel well, and know that you aren't alone :)


Sweetfudge

Born and raised in Portland, OR; Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, crucifers, popcorn, most red meat, coconut milk :(

Started eating a Paleo diet Spring 2011. Love it!

The grass is always greener where you water it.

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I'm not sure what you're looking for when you say 'written elimination diet'.

There are two approaches to elimination diets, often. One is to eliminate one item from your diet for a while (one to four weeks), and see how you feel, then reintroduce, and see how you feel. Another is to eliminate all but a few items from your diet for a number of weeks, and reintroduce one at a time for a week or so, and see how you feel. Throughout the time, using either method, you record what you eat, and how you feel, in whatever manner works best for you.

I did an elimination diet of the later type. I found it mentally *very* challenging, because there were only 12 foods I could eat - and that included salt, olive oil, pork, lamb, sweet potatoes, apples, carrots, and five other things I can't remember. It allowed me to pinpoint dairy as a problem, but I spent a fair amount of time planning the 'physical' approach (what foods I'd eat), though I underestimated the planning I needed for the 'mental' approach.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Hi Compassion!

I think that you are on the right track. More and more, the biopsy is no longer considered the "gold standard" in diagnosis. If your biopsy comes back positive, there is no doubt, but if it comes back negative, it certainly doesn't rule out celiac by a long shot! Here's why:

The damage done to the intestines is often very "blotchy". Picture someone's back with a spotty rash on it. Now, picture a doctor being blindfolded and told to take biopsies of this back. It's basically hit or miss as to whether or not he's going to hit a rashy part or not, right? So if he doesn't end up "grabbing" a piece of the rashy part, does that mean that the person doesn't have a rash on their back? Of course not! It's the same with the biopsy of the intestines..... All a negative means is that damage could still be there, he just didn't get any of the damaged parts with his little "grabber"!! This is what we mean when we say there is never a false positive - all that means is that he happened to hit the damaged part during the biopsy. Also, it explains what we mean when we say there's lots of false negatives - damage could definitely be there, he just didn't hit those spots with his little grabber.

If you have experienced positive results with the gluten-free diet, then I would definitely consider gluten to be the culprit. Even if you don't consider yourself truly celiac, you at the very least are gluten intolerant, which to me really is exactly the same thing - gluten is poison to us, whether you have the celiac label or not..... <_<

If you still required confirmation of some sort, why don't you try Enterolab? Lots of our members here have used them to determine exactly what they are reacting to. I personally didn't use them, as I was positive with both bloodwork and biopsy, so I didn't require further digging...... but it just might be the answer for you!

Oh, almost forgot! Welcome to the forum! You will find a great bunch of people here who will help in any way they can and ask any question you want, no question is considered silly or stupid here on this forum!

Hugs and welcome!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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You didn't mention whether or not you had the Celiac bloodwork done. Did that come back positive? If the bloodwork came back positive, then you DO have Celiac. The biopsy is really hit or miss like Karen said. Welcome to the forum!


~Angie~

Gluten free since May 2004

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Thanks everyone for the replies...

A few things.. by "written elimination" I mean, that when I did this with my naturopath she had something akin to what she called a triangle elimination diet... where I gradually cut out food groups until I spent one day fasting with certain teas, and then the next day lettuce only, over the next few weeks adding back things.... and it was all on a sheet for me... first elmination was coffee, sodas, teas etc., next elimnation was white flour etc.

The other thing is something of a chart, and although I have made them before, but I wanted to see how others did it... just where I put the food I ate, how much, when, and then what I felt like... to help find what I react to.

The other question is whether or not I had the bloodwork done, and I did not, the GI went straight to the biopsy.

Thanks Karen for the rash anaolgy, that was helpful for me to picture that way.

And I have been considering Enterolabs, but I have been putting more faith in my body and myself recently, so I am finding less and less of a need for "outside" verification, but I won't rule it out for in the future.

Compassion

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Welcome to the forum. I can't help you with an elimination diet as I have never had to do one. My food allergens rise up and strike me in the face. So, it has been pretty easy for me to figure out what I can't eat.

Again, I welcome you and hopefully you will find any answers you need here. You seem to be doing well and keep up the great work.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Compassion,

Just wanted to say welcome to the board! You have been given some great advice so far. I just wanted to say that we are sad you have to go through all this...but happy that you have found us. It is such a great resource. Someone will know something about just about everything :)

Remember, the biopsy can not rule out Celiac, it can only rule it in. Plus, many people "only" have gluten intolerance, not Celiac...but the diet is still the same. It is frustrating and we understand...we have all been given the run-around at some point. Myself included. I had the positive bloodwork, was TOLD to go gluten free by my GI BEFORE my biopsy...one month later had the biopsy...he only took one sample (supposed to take many!) and then they wondered why it didn't show up. Hmph. So, we understand...but we are here to help you through it, whatever path you take!

Laura

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I haven't done an elimination diet, but I just wanted to say welcome! And don't worry abt the biopsy. My bloodwork was "borderline positive", I'm still not sure what that means. The gluten-free diet makes me feel good and that's enuf proof for me. Listen to your body!

I was also told, "it's just stres", "take some antidepressants", "it's probably CFS" etc. I feel really good now. And I'm just a *little* resentful. Yarrrrr

Welcome, ask anything (I'm new and can't answer much, but I'll try!)! Yay!

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Hello everyone!

I am new to the forum, but have been learning and reading for the past few months. I have finally gotten my biopsy results back, after fighting for someone to listen to me for years... and when she read the results over the phone it said that there were no findings for celiac disease. I think the nurse was a bit taken aback when I started to cry on the phone, I am sure that most people don't cry when they hear they "don't" have a disease. But I was so convinced that this was it. After many years of feeling miserable and searching and being patted on the head and told it was "stress", "fibromyalgia", "IBS", "nothing physical, perhaps you should take an antidepressant", I thought this would be it, the end of my search. The beginning of another hard journey to be sure, but at least a path that has a name.

However, I have been gluten-free since the day of the biopsy and my symptoms are almost gone. Because I didn't have the diagnosis I have knowingly cheated three times... and each time I have almost immediately had to deal with the ramifications, and I am finally to the point now where once again I have to trust my body, trust my instinct and listen to my own heart and follow my own path to healing.

I guess what I am seeking information on written elimination diets... a long time ago I went to a naturopath who had done testing and I had Candida Overgrowth, and so I was put on an elimination diet followed by a yeast free diet... and I am looking to find something that would be helpful to chart and figure out what exactly are causing or exastrubating my symptoms. There is something that isn't sitting right with me and I am scared to think it might be rice, because that has become my new best friend...

I am just so tired of searching, of trying, of getting it right and then getting it wrong... It has been so helpful to hear of others that are struggling and shining through some of the same things... it has made this whole process a lot easier.

Thanks for any thoughts, and I look forward to connecting more in the future.

Compassion

I too am new to all this but in this ongoing process found a book called "the Complete Food Allergy Cookbookd" by Marilyn Gioannini that had how to deal with the elimination diet stuff...kinda confusing...but it had a lot of good info in it...

Right now i am just mostly reading everyones posts and trying to figure out how to use this forum as i have never been involved with one before... <_<rescuebug

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Hi Rescuebug! Welcome to our little corner of the world! There's a great bunch of people here!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I noticed you said you went to a naturopath many years ago. I don't recomend you do this for a celiac diagnoses as I have heard that they can often, However I have not heard much info about it for a few years , so this may have changed.

I did know of someone who was told by a naturopath that they had celiac, however they were also told that if they didn't eat gluten for a year they would be fine. This is indeed what happened and while obviously they did have an issue with gluten it was not celiac as once you've got it, you've got for the rest of your life even if your symptoms almost dissapear, their is no "cure" as such only what I guess you could call managment of the situation

Like I said I haven't heard much on the naturopaths for a few years, I am not trying offend anyone who may have been diagnosed by a naturopath or anyone who may wish to go down this path. This is just what I have being told/ read.

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If you can afford the Enterolab tests, I would recommend getting the whole food panel test done. It will immediately pinpoint if you are sensitive to thiings like dairy, soy, corn, etc. Plus it will give you info on how you react to gluten (are you highly sensitive or allergic) and will give you important info on what genes you carry. Also, it will tell you how well your intestines are working by measuring fat absorption in your intestines. This is important to know because maybe you are not sensitive to other foods, but your intestines are overworked and not processing foods properly.

In my case, I suspected I was lactose intolerant, but after doing the Enterolab tests, I learned (among other things) that lactose wasn't my problem...the casein (or milk protein) was the problem.

anyways, just thought I'd put my two cents in about Enterolab.

Welcome to the board!

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