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Self-diagnosis


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21 replies to this topic

#1 Saw

 
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Posted 10 May 2005 - 07:03 PM

I'm a newbie to this site. I would love anyone's input on my self-diagnosis! In Nov. of 2003 I started getting horrible reactions on my face- swelling and itching (it would start at my mouth and then spread thru-out my face) It was horrible and would last for about a week... I missed sooo much work. This happened 2x a month! Then more symptoms developed- finger tingling, joint aches, finger stiffness and extreme tiredness. All the auto-immune type tests came back ok (a relief), but no diagnosis. Two of my doctors had the nerve to tell me that "I just need to relax"!!! They were useless, after months of tests, alot of frustration, I started a food diary and eliminated wheat......eventually gluten from my diet. After about 4 months (started April 04) on gluten-free diet, I felt great. My symptoms are odd and don't fit the gastro symptoms of celiac disease. Now it's been a year and I feel the need to get a diagnosis. Any input on my next step- since I've been gluten-free for a year? Also, does anyone else get facial swelling (that begins at the mouth 2 days after eating gluten)? Thanks!!
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#2 ianm

 
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Posted 10 May 2005 - 07:12 PM

I am self diagnosed since early 2004 and see no need for an official diagnosis. However If you feel it is important then do it. I went to so many doctors and not one of them ever suggested a food intolerance. I was so sick for 36 years that I just can't bear the thought of eating gluten again. I nearly lost everything I have because of this. I am starting to get my career and personal life back on track and to be knocked out of action for a test is something I just cannot afford to do. I am also a single parent so my son needs me to be as healthy as possible. The way I see it the only "cure" is the gluten free diet so a formal diagnosis isn't going to help me. All I know is that I am healthier at 37 than I was at 17 because of the gluten-free diet and that is all I need to know.

No face swelling but my gut was another story. Extreme fatigue, brain fog and weight gain were the worst of my symptoms.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#3 Saw

 
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Posted 10 May 2005 - 07:48 PM

Thanks for your input. I would like to know if I have celiac disease verses gluten sensitivity- is there REALLY a difference between the two? I'm also wondering if I should see a nutritionist.
I feel very fortunate to have found a fairly quick "cure" for my symptoms. I have been reading other's stories and how many years they have been sick (ianm- you are such a strong person to have gone thru sooo many years of illness)... I feel very grateful to feel good again.... It's because of other's telling their stories, that I am well today. I'm also much healthier- no more processed foods! I can't believe how bad I used to eat (although I miss ALOT of "good" food- Pizza!).
Also, brain fog- I can relate, I used to mix up words or not be able to access words when talking to others, I thought I was going crazy!
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#4 judy05

 
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Posted 10 May 2005 - 08:35 PM

Yes, there is a difference between Celiac and Gluten Sensitivity. I was diagnosed as Gluten Sensitive because I had a neg biopsy, no intestinal damage and was Neg for the Celiac gene. However, if you have the gene you can be gluten sensitive without damage to the villi, but if you continue to eat gluten you will probably develop damage and will have a Celiac diagnosis. There is another school of thought that those of us with Gluten Sensitivity also have Celiac without having the gene. There are supposedly other Celiac genes that haven't been discovered. Hope this isn't too confusing, in any case we all must be gluten free for life.

There are over 200 known symptoms and all of us have different reactions which makes it hard to diagnose. I saw a dietician but she didn't help me the way that this board has. Most of the foods you miss can be substituted with gluten-free foods. I try not to eat many processed foods and I have other food intolerances.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#5 KaitiUSA

 
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Posted 11 May 2005 - 03:01 AM

I am not self diagnosed but since you have been gluten free for a year your blood test and biopsy would show negative since you have been off of gluten. If you want an official diagnosis you will have to be on gluten heavily for a good 3 months.
The face swelling seems like a reaction you are having to the gluten. Do you really feel you need a diagnosis with all the problems it is causing you?
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Kaiti
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#6 ianm

 
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Posted 11 May 2005 - 02:53 PM

You said you missed a lot of work because of this. Do you really want to go back on gluten and miss more work? I'm not sure if the test is worth doing if you have a lot of responsibilities.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#7 Saw

 
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Posted 11 May 2005 - 06:58 PM

Thanks for everyones input! I definitely do not want to miss anymore work and do not want to be sick again! I'm working two jobs and in graduate school...no time to be ill. However, I would like to know if I do have celiac disease because of the genetic component (plan on having kids in the future). Maybe I could just get the genetic test done?? Also, is having celiac disease a more serious condition than gluten sensitivity? I'm still new to all of this and my doctors don't help...my doctors have also freaked me out with other possible autoimmune diag., so this is probably also the root of me wanting to find out a diag. thanks again for everyone's help!!
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#8 Guest_nini_*

 
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Posted 12 May 2005 - 03:01 AM

I go back and forth on the issue of to self diagnose or not, and just based on my experience, I self diagnosed (with the help of a friend) about 5 or 6 years before my actual dx. However, after 2 years of my "self dx" I began to doubt myself and even had my OB/GYN tell me that I needed to go off the gluten-free diet because it was "bad for my pregnancy" :blink: When I FINALLY got sent to a GI that correctly dx me, I kicked myself for not sticking with the diet for the previous 4 years, BUT I've realized that I needed to have a Dr. tell me definitively what I had because otherwise there would always be some doubt. Now, that being said, I DON'T believe that you should have to go on a gluten challenge and go through the biopsy and such, but you should have other blood tests to RULE OUT the other autoimmune disorders that they are scaring you with.

To me a positive dietary response is an excellent indicator that for whatever reason, you should not be consuming gluten, and in my mind there is no reason to intentionally eat gluten just to have testing done. They can still test you for other autoimmune disorders without you having to be consuming gluten. If gluten makes you ill and miss work, JUST DON'T DO IT!!! :D
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#9 Lesliean

 
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Posted 18 May 2005 - 09:15 PM

I love your answer Judy. You explain so clearly the difference between celiac and gluten sensitive and how we all need to be gluten free.

Enterolab feels you well get an accurate testing up to 2 year gluten free as fecal samples are more sensitive to the tests. One year seems a long time and you might be negative and need to retest on gluten but at least you don't eat gluten for the testing the first time. The gene panel is good for testing of the gluten genes including the new ones that the blood tests don't even test for. My insurance company paid the whole bill and did not require a referral as Dr. Fine is a qualified specialist.
Leslie
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#10 judy05

 
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Posted 19 May 2005 - 12:50 AM

Saw,

Is having Celiac a more serious condition than gluten sensitivity? Here again we have to say it all depends.It seems that people who are gluten intolerant get more neurological problems as well as GI problems, I know that because it happened that way with me. It also depends on how long it took to be diagnosed, some of us were sick many years before they lucked out and got answers. Others get diagnosed rather quickly and have symptoms like fatigue and or anemia, they of course probably don't have the damage as the rest of us. Either way we all know the diet is the prescription, gluten-free for life. I have three autoimmune diseases, may be more. Docs just don't get it unless you find one who specializes in it, I was lucky to find a GI who thought I had it but now he's not sure because I don't have the gene. You could try doing the genetic testing, that way you will know for sure, unless it comes back negative ;) I wish that I could help you more, it has to be your call. I'm sure the future will bring us more answers, maybe more genes will be found.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#11 plantime

 
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Posted 19 May 2005 - 05:56 AM

Since you have been glutenfree for a year, you could also try a "self-test" of the food. By that I mean eat a bit of gluten, and see how you react. If it makes you sick, then you will know not to eat it. If it does not make you sick, then you will know to find a doctor that will run more tests. The face swelling and itching part sounds more like an allergy than celiac, but the treatment is the same: total avoidance of gluten.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

#12 Ann

 
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Posted 19 May 2005 - 09:50 AM

I am also new and would like a little advice about self diagnosis. I started out with swelling and extreme itching on my face (lips were huge and quite disgusting) that spread eventually to my cheeks and forehead. I had a butterfly effect on my face for a while (nose and cheeks were very irritated) broke out on my shins and forearms too. Rash was oddly symmetrical. family doctor thought lupus, dermatologist thought some kind of immunological disorder, not sure what though. I had many tests ran, all came back ok for lupus but was diagnosed with lymphocytic perivasculitis. I was prescribed some kind of ungodly steroid cream and told to be very careful using it as it has adverse side effects on liver and kidneys and "Oh by the way, it will only take care of the symptoms temporarily and we haven't got a clue as to what is wrong with you". I of course have not and will never use this cream. I will suffer the rash gladly in contrast to dialysis or liver failure thank you very much. All rashes cleared up a year ago except on my forearms. It stays in varying degrees of irritation except when I drink a beer. I mean it is immediate. I want to rip the skin right off. I can drink vodka, whisky, rum and some wines with no problem....I'm not an alcoholic really...I just wanted to run a few tests on my self ;) My reactions are extremely consistant. So I thought wheat must be my problem. I have no gastrointestinal reactions immediately. However my insides have always been a little squirrelly (irritable bowel syndrome/constipation). I cross referenced lymphocytic perivasculitis and celiac disease and came back with dermatitis herpetiformis. If anyone has the patience to read my life story please tell me what you think. I cannot even tell you how desperate I am.
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#13 mommida

 
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Posted 19 May 2005 - 10:56 AM

Hi ann,
Getting a diagnoses for Lupus is very difficult. I would get a second opinion from a specialist. Lupus can have such a variety of symptoms, but to have a classic "flare" of the "butterfly" rash should reallybe taken seriously. The gluten free diet would also be helpful for Lupus, because of the multiple food sensitivites connected to it. It took 10 years to get my friend diagnosed with Lupus.
You may have Lupus and Celiac or gluten sensitivity.
The average length of time in the US for Celiac diagnoses is 11 years. Get a great doctor to work with for your diagnoses. You shouldn't have to waste time with a doctor that is so ignorant, to say, "It's all in your head".
As for facial swelling being a symptom, I say yes. When I went on the gluten free diet, the first hing that happened was it appeared that I lost weight. The scale didn't show a difference. My face had been swollen.
Laura
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#14 Saw

 
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Posted 20 May 2005 - 07:52 PM

Ann- Your symptoms sound alot like mine... it usually starts at the mouth (burning) and spreads throughout my face (butterfly rash). I definitely feel your pain, doctors are so frustrating! I would leave their offices crying MANY times. They tested me for lupus and multiple other horrible auto-immune diseases, but everything came back ok. Do you have any joint symptoms? stiffness? I notice that if I eat a little gluten I have stiff joints. It's so frustrating! I haven't had a huge reaction since I've been gluten-free. I don't know anything about "lymphocytic perivasculitis", but I'm going to google it and read about it. Sorry, I don't have any answers for you, but you are the first person I have came across with similar symptoms as me.
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#15 turtle99

 
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Posted 21 May 2005 - 04:46 AM

Wow, I see myself in so many of you! I recently got my blood test results back, but they said that it's <20 for IgA and IgG , so I do not have celiac disease. But if Entrolab, says there should be nothing as a result for someone who does not have celiac disease , than does that mean that I could have it, even if my numbers are low? The diagnosis thing is confusing for me.
I suffered many years with :
depression, lethargy, fatigue, brain fog, mood swings, weight gain, animal-like hunger, muscle cramps, very dry skin, rashes, low body temp., bloating, diarrea, anxiety, boarder anemia, difficulty concentrating, memory problems.....everything I tried to do was a terrible strain, everyday was just exhausting, and I just no longer wanted to participate in life.
But according to my own observation, I've been off gluten for more than 2weeks and I have a definite difference.
The giantic brain fog and lethagy went away!!! It was so amazing. I did notice also as soon as I eat some with gluten, or sugar, I face would swell up; I mean it reallly altered my features on my face! It 's like having 2 identities!
There is a very distinct reaction to gluten. It is very obvious with me. And from reading stuff here, I realize that just seeing your own results of change, is enough to confirm that gluten does belong in my body. The question is not whether gluten is a problem, it's a question when is medicine going to find a more definite way to identify why is creating so much havoc to our bodies.
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"Turtle99"
gluten-free since may02/05




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