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radgirl

Is A Medical Dx Crucial For You?

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Does the Dx from a doc give you a sense of completion to this whole mess? Or does that even matter? If everything comes out negative, yet you still live a gluten-free lifestyle, is that enough for you or do you continue your search for a concrete Dx?

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My tests came back negative, but I was already feeling better by not eating gluten, so in the end that was enough for me, but not enough for my school. The only reason I sought a dx was that my college requires a meal plan and I needed a dx to get gluten free food.


Symptoms on and off my whole life

Major symptoms starting 2005

Zero blood antibodies

Gluten free with positive dietary response since April 2007

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After reading the stories here I realized I was very unlikely to get a diagnosis through the typical means so I had a chat with myself and asked myself if it really mattered. In the end, no it didn't really matter. I got tested with Enterolab and tried the diet and saw for myself how much better I do.

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The only reason I sought a dx was that my college requires a meal plan and I needed a dx to get gluten free food.

That sounds horrible. I was actually just reading about how some people go on gluten-free diets to help their depression and anxiety, along with other mental illnesses. I wonder if that means they'd have to get a psychiatrist to tell your school that you needed to have gluten-free food or something. Don't know if they'd even accept that either. Pretty weird though.

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Please don't get the impression that my school didn't go out of the way to accommodate me. They just couldn't cook special meals without paperwork and have been great since. I think there would have been more wiggle room if I couldn't get the paperwork. Luckily my doctors are very good about listening to me and what I say about my body. I said gluten made me sick, silent celiac and autoimmune disorders run in the family (which they know about), and that going off gluten makes me better. They said that they would give me a gluten intolerant diagnosis based off of that. It


Symptoms on and off my whole life

Major symptoms starting 2005

Zero blood antibodies

Gluten free with positive dietary response since April 2007

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I have an official dx. Not really by choice, it just happened that way. I was so sick that it took over 6 months before I felt better. Without that dx I might have given up on the diet.

I do like having the dx only because it keeps me in check. Along with being violently ill by even slight cc! It is also nice for my kids. If they ever have a problem my dx may make it easier for them.

Hez

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I don't need an official dx. I know my body better than my doctor does, and if I feel better off gluten than on it, and feeling better is what matters to me, then... I already have my answer.


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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Guest j_mommy

I didn't say anything about my symptoms for a long time and then I told my primary Dr. He sent me to a GI right away and she tested for everything and celiac came back positive!

So I kind of fell into the DX. But I did want a biopsy! I chose to wait to go gluten-free and do the biopsy even though it wasn't for a month after my blood tests! The biopsy was positive but I would have went gluten-free if it wasn't!

So in the end...the question is...Is it important to YOU to have a Dr. Diagnois????

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I don't need an official dx. I know my body better than my doctor does, and if I feel better off gluten than on it, and feeling better is what matters to me, then... I already have my answer.

I don't have a dx and either does my daughter BUT all bloating, gas, and diarrhea have stopped since going gluten free. We are still new to this, but are enjoying the new positive "side effects". So, I am just wondering...so you say you have celiac disease, or do you say you are gluten intolerant? People ask me why I do this. They want me to validate it somehow, and I hate labeling, but I am just curious how you handle this.


gluten free since 7-07 with positive dietary response

Enterolab results positive for gluten sensitivity

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I wish I could have had a diagnosis. But by the end of one month of being gluten-free, I felt so good and I saw my doctor. She was amazed with the positive health-related results and said if I had the endoscopy and the results come back negative, she wouldn't suggest that I eat gluten again anyways.

Sometimes I feel like I'm lying to people when I say I have celiac, because I don't actually know if I do.


Tapioca intolerant

First cousin dx'd with Celiac Disease

Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.

Gluten-free since June 2005

Dx with IBS February 2005

Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

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I am pretty sure I have dermatitis herpetiformis, and I consistantly get out breaks after I have accidently consumed gluten. I am 50 and getting ready to retire soon. We will have to get our own health insurance, so I dont think getting diagnosed would help. I will just stick to a gluten-free diet.


"The only thing constant in life is change"

Celiac not confirmed, but positive results with diet change

Gluten free since 10/06

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Last year I started the gluten free diet in October and stayed on it until April. I felt so good I thought maybe I didn't need the diet and that I was wrong to diagnose myself. But, after about 2 months I was so sick. I went to the doc and told him my symptoms and that they cleared up on the gluten free diet. He said it sounded like celiac or gluten intolerance to him and that I should get back on the diet. He didn't do any tests because I don't have insurance and would have to pay for them out of pocket. He said he could recommend a nutritionist but they are expensive and I could get all the info I need off of the Internet. So, in a sense I have an official diagnosis. I just tell people my doc said I have celiac. :)


Diagnosed celiac disease July 5, 2007

Starting over on the gluten free diet

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It's important to me to get one. My blood tests were negative according to the doctor. I plan to post the numbers here when I get my records though. I have a "borderline" wheat and barley allergy so I really want to determine if it is allergy or a true intolerance. I know for me the course of action is the same regardless. But I want to know exactly what I'm dealing with. With an allergy, I can cheat once in awhile. With celiac, I can't. All I know is my sinuses have been great since going gluten free. Stomach is still quite upset though, but it has only been 2 weeks, and I've had a few slip-ups along the way.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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----snip----With an allergy, I can cheat once in awhile. With celiac, I can't. All I know is my sinuses have been great since going gluten free. Stomach is still quite upset though, but it has only been 2 weeks, and I've had a few slip-ups along the way.

It took me awhile to get my head around that because I kept thinking of it like my MSG allergy. I can fudge a little and have something with MSG and take a Benedryl and be okay. Definitely not so with gluten!


Karen B.

diagnosed with Celiac Nov. 2003

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I don't have a dx and either does my daughter BUT all bloating, gas, and diarrhea have stopped since going gluten free. We are still new to this, but are enjoying the new positive "side effects". So, I am just wondering...so you say you have celiac disease, or do you say you are gluten intolerant? People ask me why I do this. They want me to validate it somehow, and I hate labeling, but I am just curious how you handle this.

I generally say that I am gluten intolerant. If there are further questions, I say that my blood tests were inconclusive, but my dietary test was conclusive.

I don't give a flying flip about validating my physical health (or mental, really) to someone else. If you have wonky knees (that's the technical term, you know :P), and hence don't go running every day for five miles, do they ask the details of your diagnosis? No.

If I ever get a "well how do you know that's really it?" question, I'll probably say something along the lines of "well, how do you know you feel bad when you have the flu and better when you don't? 'cause you know how you feel. same thing." and wouldn't answer more questions after that, because they're not looking for information, they're being rude. :)


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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If I ever get a "well how do you know that's really it?" question, I'll probably say something along the lines of "well, how do you know you feel bad when you have the flu and better when you don't? 'cause you know how you feel. same thing." and wouldn't answer more questions after that, because they're not looking for information, they're being rude. :)

I could frame this and hang it on the wall. :-)


Karen B.

diagnosed with Celiac Nov. 2003

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