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How Many People Are Actually Self-diagnosed?

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It amazes me how many people are self-diagnosed. It is also amazing to me that we have all been so underserved by our doctors, many for years.

At first I was hesitant to participate in this board because techincally, I don't have celiac. Neg blood and biopsy. It surprises me that so many people aren't "Gold standard" diagnosed, but we all fit in here. It doesn't matter what you call it. I am glad I spend more time here figuring that out. I wish the doctors felt the same way.

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You really shouldn't be so surprised; the estimate is that for every one celiac diagnosed there are 29 undiagnosed. And celiac is usually the very last thing that pops into a doctor's mind, because the drug detailers have not educated them on it :o

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I have also heard that another part of your anatomy can be affected rather than the villi or the skin... And even with the usual tests its often hard to find. I think too that many are very intolerant of gluten even if they don't clinically have celiac.

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At first I was hesitant to participate in this board because techincally, I don't have celiac. Neg blood and biopsy. It surprises me that so many people aren't "Gold standard" diagnosed, but we all fit in here. It doesn't matter what you call it. I am glad I spend more time here figuring that out. I wish the doctors felt the same way.

Funny, I felt the same way at first but soon realized that researching on this board convinced me I was right and my Dr.s were wrong. I can't begin to thank all the people on here that helped me in the beginning.

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I'm also self diagnosed, I went gluten free shortly after my oldest daughter was diagnosed at age 3. All of my wierd symptoms were explained...I was anemic, very short, enlarged lymph node, migraines starting at age 5, moodiness, and IBS type symptoms with stress.

I never realized how crappy I felt all my life, until I started to feel better! It hasn't been easy by any means, and I've had to cut out even more foods to feel 100% (like dairy and coffee), but I feel great and wouldn't go back on gluten for a second just for a diagnosis.

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After being sick for many years, I visited my OBGYN in July 2008. After talking with him, he said what I was describing sounded like celiac disease. I went home and stared researching and self diagnosed myself with celiac. Started following the diet right away. Within a few days, most of my symptoms were gone. My mom was amazed at how good I felt by just changing my diet. Went through the blood test and biopsy several months later by a gastro in my own hometown (very small town). Both came back negative (Of course! I had already started the diet).

Just yesterday, I visited with my "new" Gastro Doctor (2 hour drive from home). After reading all of my symptoms, he said there was no need to further test me for Celiac. He said if the diet is working, there was no need to test any further. He would consider me Celiac. He was very helpful and knowledgeable.

As of now, I am a self diagnosed Celiac with 2 doctors' approval. I also don't have that golden standard of diagnosis, but I know that I feel much better following the Gluten Free diet......

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Hi all,

I'm not sure I qualify as self diagnosed since I am not sure if I should consider myself a candidate for celiac or gluten allergic/intolerant. Long story short, I developed symptoms about a year and a half ago (extreme fatigue, bloating, severe gas pains, constipation, severe sinusitis, vertigo, anxiety, etc.) and went wheat free in September 08 after talking with my acupuncturist. I felt slightly better, then was eating rye bread and having symptoms so eliminated rye and barley as well. I am only starting to feel really good again over the last week or so.

Last March I went for a doctor's appointment for something else but when asked about allergies, I told her that I had stopped eating wheat because I suspected I was allergic and was starting to feel better after going gluten free. She asked me to describe my symptoms in detail, and when I did, she asked if I had been tested for celiac disease. I asked if there was a test that didn't involve eating wheat again, and she said no. I told her no way was I going to make myself sick for 3 months plus the recovery time to have tests for something that I may or may not have, and in the grand scheme of things wouldn't matter because the treatment for celiac (as we all know), as well as the treatment for gluten allergy, is a gluten free diet. Besides, aren't you born with celiac disease? Could I really just all of a sudden develop symptoms at the age of 36? Bread and pasta were my favorites when I was a kid and I didn't have any adverse reactions then...

This board has been a wonderful resource. People are really helpful. And most of the info applies to those that are gluten intolerant as well. While I realize that the intent of the forum is to help those with diagnosed celiac disease, there has never been anything posted on the forum about needing a biopsy diagnosis to use the board, and I believe that means that this community welcomes anyone who has problems with gluten. If I am wrong, I apologize.

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Well--I would guess this board is self selected by interest. All really are welcome. Most here seem to like to help each other. Most seem to have gone through great difficulties before getting here where we get more useful information from each other than we often do from other sources.

As far as heredity and being born with celiac or not, my understanding is certain people are born with the gene potential which may or may not show up--and when it does show up it is usually due to stress. 33% of north Europeans after all have this gene potential for celiac as do 10% of all others of European descent. Once this stressful situation brings out the celiac you have it for life. Often age brings it on since the aging process has its own stresses. Others like myself had sufficient stress for it to come out as a health condition as a young infant first introduced to grains.

Unfortunately in my case my doctors changed as we moved and at age 4 I was reintroduced to glutenous grains and not told then or later that it had been a problem. They used to think the child would literally "grow out of it" (the grains had stopped me from growing as a 4 month old infant).

I finally figured it out on my own but it took most of my life to do it. For a long time I thought it was just allergies to the wheat family as well as several other foods and a bad case of candida--but didn't realize I needed to avoid all trace gluten. I took herbs to help me deal with a constantly falling apart body. They helped but it wasn't enough.

I am so grateful for the board here on celiac.com to help me clarify the issue! Thus I have been both self diagnosed and doctor diagnosed ironically. Just took 59 years for me to find out about the true ramifications of my condition consciously! After I finally figured it out my now aged mother told me what "failing to thrive" meant (i.e., "failure to grow") as an infant. Apparently my doctor put me in isolation as an infant to figure out what was wrong with me. They discovered that I could not tolerate glutenous grains or milk (unless it was nonfat) and diagnosed me as having sprue (now called celiac sprue).

Am now almost age 60 and in much better health than ever after a very difficult life health wise. I do wonder how much taller I would have been if my parents had kept me on a non gluten diet... Certainly I would have been much healthier as a child and young to middle age etc. adult...and brighter and more successful!

Am very glad to discover that if one avoids gluten etc. those with celiac have a tendency to be more flexible and agile and live longer than many others as well as avoid many of the auto immune and degenerative diseases (the opposite being true if one does not avoid the gluten however). This at least is some kind of silver lining...

Bea

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I find this to be the perfect thread to post this new info from The Gluten Doctors...a huge clinic in California.

Monday, July 06, 2009

Diagnosing Celiac Disease - Intestinal Biopsy with villous atrophy no longer the

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Thanks for sharing that article. It always gives me hope when I read that gluten sensitivity exists without showing signs of damage to the villi. I am so glad that some doctors are finally figuring it out. I just hope that the word will spread. There are a lot of sick people out there who could be so much healtier if they just knew what to do.

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I find this to be the perfect thread to post this new info from The Gluten Doctors...a huge clinic in California.

I have always believed this to be true. As I have mentioned before, my family doctor in Michigan never mentioned celiac disease all those years I was so sick. Then my sister was diagnosed, and I went gluten free 3 months later. My PCP here says because of all my symptoms, and my neuropathy, he KNOWS I am celiac, no doubt in his mind. My neuro follows what Quest Lab said, I have the wrong genes for a diagnosis, yet he diagnosed me with sprue, and gluten ataxia, claiming my neuropathy was caused my nutritional deficiencies from gluten.

I am what I am, and I will always be gluten free, not a doubt in my mind. The tiniest amount triggers a reaction.

Thanks so much for the post on The Gluten Doctors! I live only about 20 minutes away from their practice and didn't know about it. I just made an appointment for myself so maybe I can get some validation on my self-diagnosis. I'll probably take my 6-year-old daughter in, too!

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I live only about 20 minutes away from their practice and didn't know about it. I just made an appointment for myself so maybe I can get some validation on my self-diagnosis. I'll probably take my 6-year-old daughter in, too!

How wonderful. You will have to let us know if the practice is everything I have heard it is.

There is a very good book out there called, "Healthier Without Wheat" written by Dr. Stephen Wangen. He is called The Gluten Intolerance Doctor, but :( he isn't in my area either. The book was very good, I recommend it too.

I agree too, that article is one of the best pieces I have seen in a long time, and it's time doctors start to recognize gluten intolerance as the monster it is. Up until now, they have been treating gluten intolerance as something to ignore, and many of us are in such bad shape.

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Deb- I had seen that article yesterday. Very interesting.

I am a chiropractor diagnosed celiac. Does that count? ;)

I was sick for years and I always suspected it was something I was eating. thought it was candida for along time. I did that candida diet for a month in 2004 and felt much better. however, no doctor believed me and I felt like a loon, so I started eating everything again.

I got my gallbladder out in 2005 and still felt like crap. I managed (w/ some prescription meds) the fatigue, stomach pains, major sleeping issues, and brain fog. Then last fall I started getting hives and facial swelling. They couldn't figure out what was causing it all. I was told just to live w/ it. Then this spring I couldn't get rid of the hives. I was covered over 90% of my body most of the day, even while taking three different antihistamines.

I went to a chiropractor/holistic doc. She suggested celiac disease. I told I had been tested 2 1/2 yeaers ago and it was negative. She ordered the bloodwork. The results were actually labelled "inconclusive" because the levels were all elevated, but not to "celiac" level. She then ordered the enterolab stool test. Then I quit gluten completely. I took that and all levels were extremely high.

**Forgot to say that the ONLY reason I was had the original bloodtests is because I insisted I be tested for it. The allergist I was referred to for the testing told me I was crazy and there was NO way I had celiac disease because it was very rare and I didn't have diaherra. When he got the test results his nurse called me and said, "Nope you don't have it. Almost nobody has celiac disease, so I don't know why he tested you for it." argh!

the hives are now gone after 2 months. I got a couple 3 weeks ago when I caught a virus (fever of 103, etc), but just one time. The chiro. thinks that I will probably get them when I get sick because now my body sees that as a normal autoimmune response. I still take a very small dose of allegra, but I don't think I really need it. I am just scared to have NO antihistamine in my body.

My stomach feels good (except the three times I accidentally ate gluten), I now can actually sleep more than 15 minutes at a time w/ no sleep aid drugs, and fatigue/fog are slightly better. I'm waiting for the day for the fog to lift. I've had it for five years. I cannot even imagine not having it. However, I like to :)

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I am self-diagnosed. I had the blood test but decided to go gluten free before I even got the results. The results came out negative but I decided to go gluten free anyway. My symptoms weren't severe but I feel so much better gluten free that I'm not going back! I wish DH would try the gluten free diet because he has constant bloating, explosive diarrhea, goes to the bathroom 3-4 times a day, craves bread, etc. One of his uncles was dx with celiac disease. His mom said she didn't even want to be tested because she would have to give up bread. Diabetes and cancer run in his family and I just wouldn't take the chance. Luckily they are all ok with the kids being gluten free. It took a while for his family to get used to the idea.

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I am new around here. All my tests results were negative, yet I know there is something wrong and I believe it relates to gluten. ( I am in the process of doing stool testing with enterolab).

I want to know how many of you celiacs are actually biopsy-diagnosed and how many of you are "self-diagnosed" celiacs or gluten intolerant individuals.

My drs. basically sent me away saying "you have IBS, go home and take immodium, you don't have celiac". When I asked them if they had any "non celiac gluten intolerant" patients they said, "no". That says a lot. I dont' believe it though.

I started out with iron deficient anemia last year. I've thought for a few years though that I had celiac because I got really sick when I ate Nutrigrain waffles. I have had symptoms since a child, which mainly were irritable bowel. The hematologist sent me to the GI doctor. He did endoscopy and colonoscopy but didn't take a biopsy with the endoscopy because he didn't believe me. I was upset. After I came back to see him I told him I wanted the blood tests. He agreed and they came back abnormal. Now I'm having another endoscopy with biopsies. He told me I have celiac but he wants to do the biopsies. I guess I could have refused but I've come this far so I may as well do the endoscopy again. So I guess I would say I am "self-diagnosed" right now until I have the endoscopy. I can't wait so I can start to eat gluten free again. I had started but then he wanted to do the test so I went back to eating gluten.

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I am self diagnosed. I also have no desire what so ever to confirm that diagnosis. As far back as I can remember I have always been in pain, suffered depression/anxiety/mania, had tummy problems, muscle fatigue, insomnia, and the list goes on.

After going gluten free I feel better than I have felt in a long time. My peripheral neuropathy has been getting better, I have more energy, and my days have been largely pain free. No way I am going back just for a doctor to say "don't eat gluten"

B)

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I also self diagnosed myself as being gluten intolerance, though now learning more about other health problems I'm suspecting there is more to it than being gluton intolerance ( and possibly a health problem- like leaky gut system, causing my food intolerances). Being 17 years old all my symptoms ( even those that were fatal) were being ignored, and the only focus was anxiety/ depression. I also was set up with a counsler etc.... Mention many times to my family about my health problems etc... none seem to believe me, or even think that anxiety/ depression can be caused by food intolerances, and other illnesses. I recently began to suspect that I have candida and did the spit test and it came back positive. I also suspect that there is something wrong with my thyroiy. I think there could be something wrong with my immune system ( which is logical, since being gluton intolerance and candida will damage it) and malnutrition. I assume a lot of my health problems can be diagnosed ( as I've read on) and probably notice with a biopsy in a few areas.

(Neglected by local hospital)

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I started out with iron deficient anemia last year. I've thought for a few years though that I had celiac because I got really sick when I ate Nutrigrain waffles. I have had symptoms since a child, which mainly were irritable bowel. The hematologist sent me to the GI doctor. He did endoscopy and colonoscopy but didn't take a biopsy with the endoscopy because he didn't believe me. I was upset. After I came back to see him I told him I wanted the blood tests. He agreed and they came back abnormal. Now I'm having another endoscopy with biopsies. He told me I have celiac but he wants to do the biopsies. I guess I could have refused but I've come this far so I may as well do the endoscopy again. So I guess I would say I am "self-diagnosed" right now until I have the endoscopy. I can't wait so I can start to eat gluten free again. I had started but then he wanted to do the test so I went back to eating gluten.

If this is the same doctor I would insist that the second endoscopy be gratis. He should have done the biopsies when he did the first one or at least blood tested you before the scope. His actions IMHO were irresponsible and did nothing for you but the second procedure will definately help his bank account. Doctors like this make me sooo angry. By the way if he already considers you to be diagnosed I would perhaps skip the second endo and just go with it and start healing. Hopefully he did tell you to stay on gluten until the endo is done, if you are choosing to let him do it.

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This thread is awesome. I'm also "self diagnosed". Well, it was suggested to me by a friend actually. I didn't

want to believe her at first. It didn't seem possible that ALL my symptoms(depression, anxiety, severe PMS and

cramping, inability to put on weight and improper fat distribution on my body-no hips or breasts and a huge gut,

a horrible skin disorder on my face which doesnt respond to acne treatment, off and on psoriasis all over my body,

chronic constipation/bowel fatigue, chronic tiredness, and more..) could be due to something as simple

as gluten, not after all my years of suffering and being basically abandoned by doctors who didn't have a clue

what was wrong with me and would only throw temporary (and expensive) medications at the symptoms. But my

friend was insanely right on.

It took a long time and a lot of "testing" (basically not eating gluten for awhile and then eating it again) for me to

be convinced. At first I wasn't sure, because it took so long for me to heal from one glutening that I didn't even realize

what gluten was doing to me. But after going gluten free for longer and then accidentally being glutened here and

there, I began to go wow.. there really is something happening here. I remember the first times I really felt what it

was like to be gluten free.. I was just like.. my God. This is what it is to feel good! This is what its like to be a normal

person! My whole life I've been sick, I just never knew anything else.

One day I ate a supposedly safe chicken dinner, not knowing that the chicken was the horrible Tyson brand which is made with wheat. I had no idea, but a couple hours later I began getting sick. That sickness progressed until it was so bad I nearly had to go to the ER. I was covered in a rash all over my face and neck and suffering from complete confusion/brain fog, sobbing uncontrollably, just way out of it. Understand that at the time, I thought FOR SURE the meal had been gluten free so I didn't know what was going on. My mom ran to the trash and found the chicken wrapper and sure enough it said right on the label "contains wheat".

And that was the day I learned all meat wasn't gluten free, lol. Also the day all doubts were erased for good. I had previously wondered if it was possible that all this could be psychosomatic.. but there is no way you can mentally create symptoms when you didn't even know. The reaction was so scarily severe. I was much more careful after that and I, like many others, have absolutely no desire to ever get further testing. It's without a doubt in my mind that I am indeed celiac.

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Wow! That's pretty much me too. I bounced around different specialists who all gave up and came to the conclusion, after multiple pregnancy tests because I looked 4 months pregnant all the time, that I had IBS. They told me to take benefiber-made from wheat- and essentially suck it up. I went to my little brother's endocrinologist-he has Addison's- and we went through the elimination and reintroduction diet. It was hell. I knew then that the gluten was definetly making me sick because after only a few days going gluten free, my bloat went away and I was regular again. Additionally, my skin sores when away. However, when it came time for the reintroduction, I only made it 7 days. Bringing back the bloat was more than I could bear. Because of this, my doctor says I didn't sufficiently build back up my antibodies. In any case, once all of my doctors saw the improvement in my bloat, skin, constipation, and abdominal pain, they all agreed that I should remain gluten-free. I think IBS is the most grandiose cop out to avoid taking the time to diagnose serious life-threatening conditions. Many of my family members have Crohn's and they had to fight for their doctors to give them the time of day after years of "IBS" and laxatives. People are becoming more aware, but as with anything medical, I suppose, you have to be your own advocate.

This is my story too. For over 15 years I suffered with bloating, cramping, chronic constipation, fatigue, itchy blister spots on my fingers and severe rectal pain. Two times I literaly passed out shortly after eating a soft pretzel! Several doctors and specialists were visited - all saying that they could "see" nothing wrong with me. Blood work was normal. Colonoscopy was normal. Everyone of them said, "Eat more fiber. You have IBS." So it wasn't until I was almost dying, was over 20 pounds underweight, that a friend sent me to a nutritionist. She put me on the Candida Cleanse diet - only high carb veggies and protien. Within a couple of days, I began improving. When I began reintroducing food groups back into my diet, grains caused my symptoms to come back. I am now grain free just because it makes me feel better - no thanks to the doctors.

But I can see that my family members suffer from many of the same symptoms, and its frustrating not to have a doctor's word to quote, saying "It's Celiac. And its hereditary. Let your family members know." They just aren't taking my word for it.

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Essentially, I was self-diagnosed, as well.

I grew up eating everything and anything without a problem. That all changed when I hit my 20's. I was working full-time in a very stressful job and my father was diagnosed with terminal stomach/esophageal cancer and given 9 months or less to live.

I was stressed out beyond belief and when the severe cramps and explosive diarrhea started I assumed it was due to the stress. Figured the problem would disappear when the stress did...only it didn't. My doc said it was IBS and I'd "just have to live with it". I tried in vain to nail down what food(s) were the problems. It seemed like it was dairy related so I used Lactaid. Seemed to work at first...then it didn't. Thought it was the caffeinated, sugary sodas I'd gotten hooked on as a pick-me-up when my Dad was sick. Stopped those, but the symptoms didn't stop. I'd started hitting take-out pizza, subs and convenience foods pretty hard when Dad was sick and I was still leaning heavily on them. Suddenly, I was even having trouble eating salads and vegetables. I'd eat them and they'd rush through me in just 4 or 5 hours...something I found amazing since I'd learned years ago in health class that it takes 36 hours for food to travel from stomach, through the intestines, and...well, you know.

Multiple trips to the doc all came away with an IBS diagnosis and an increasing attitude from my doc. I questioned the IBS label since the research I'd done on it all said that IBS didn't worsen over time. I was having one yeast infection after another and my doc did consent to testing for diabetes. It turned up negative and that's the last he wanted to hear about any of it. I got nowhere with my doc after that and decided I had no other recourse than to do what he said...live with it.

And that's what I tried to do...until the symptoms got so bad I actually had fleeting thoughts of doing myself in. My stomach was so bloated I looked like I was 9 months pregnant, my balance was so bad I couldn't walk a straight line, my hands and feet were numb, I felt as though I couldn't control the muscles in my legs correctly, I had no stamina and got short of breath just walking up a flight of stairs, my moods were ALL over the place, I was gaining weight uncontrollably despite severely restricting calories and my family was constantly ticked at me because I was distracted all of the time and couldn't ever seem to finish a thought. I'd actually forget what I was saying right in the middle of a sentence! The worst, though, was the crushingly PROFOUND fatigue. I'd sleep for 14 hours and get up feeling as though I'd never been to bed. I could make it only 2 hours before needing to sleep again and my life was being turned upside down.

I did some research online and cried when I read the symptoms of celiac disease. I was just SO relieved to finally have some reason for what was happening to me and something I could do about it. I approached my doc about it...and the ba$tard laughed me out of his office. Said I was way off and that all I needed was some antidepressants. I refused to take them and went gluten-free on my own. Within a month, I was feeling like a new woman. I told my doc about the change. He said it was just the "placebo effect" - I expected it to work, so it did. I started second-guessing myself. Maybe it really WAS all in my head. I started eating gluten again and I thought I'd die. Terrible cramps, diarrhea, headaches, severe body aches, tingling in my mouth and my feet, etc. I made it 12 days on gluten and quit again.

I found a new doc and she was willing to accept my response to the removal of gluten and its nasty response to the return of gluten as evidence enough of celiac disease, but she did recommend genetic testing, too. I was tested and have double DQ2 genes. Doc said there was no use in doing a scope and biopsy because it was obvious gluten was a problem and looking for/finding villi issues was purely academic and of no real use as the "treatment" would still be the same.

I've remained gluten-free and have felt incredible. My energy is back, the numbnesses are gone, no more yeast infections and the intestinal symptoms have disappeared. I'm back to eating vegetables again without problems and can even add in dairy in small amounts, too!

Interestingly, I got inadvertantly glutened really badly over the July 4th weekend with some flour that had been added to a dish and I had burning of my mouth, terrible diarrhea, pain up under my right ribcage that took my breath away and now...yep, you guessed it, I've got a yeast infection.

What I wouldn't LOVE to do to that doctor that made me suffer through 20 years of symptoms and made me feel bad or wrong or just plain a nutcase for complaining and questioning his diagnosis!

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Long story short, I will just say that western medicine just pisses me off!!! It's great if you need something cut out or chopped off your body or if you are experiencing certain major illnesses, but other than that, forget it. Many doctors think they know everything, and it's really bad when they won't even listen to their patients. I think many doctors are less inclined to listen to women, especially young women, treating them as if they are hysterical and attributing all symptoms to "depression". Just remember two things; 1. if your doctor isn't listening, get another one! and 2. If doctors really knew what they were doing, they wouldn't call it PRACTICING medicine! I highly recommend acupuncture (for those that don't have needle phobias, of course), which has been around thousands of years longer than western medicine, because I have experienced the wonderful results, and unlike drugs, there are no side effects, except maybe feeling better. :-)

I agree with those on this thread that refuse to eat gluten again just to "prove" that it makes them sick, especially since there is so much chance for false negatives and the only solution is to eat a gluten free diet.

Ok, maybe not so short, and stepping off soapbox now, sorry....

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This thread is awesome. I'm also "self diagnosed". Well, it was suggested to me by a friend actually. I didn't want to believe her at first. It didn't seem possible that ALL my symptoms(depression, anxiety, severe PMS and cramping, inability to put on weight and improper fat distribution on my body-no hips or breasts and a huge gut, a horrible skin disorder on my face which doesnt respond to acne treatment, off and on psoriasis all over my body, chronic constipation/bowel fatigue, chronic tiredness, and more..) could be due to something as simple as gluten, not after all my years of suffering and being basically abandoned by doctors who didn't have a clue what was wrong with me and would only throw temporary (and expensive) medications at the symptoms. But my friend was insanely right on.

It took a long time and a lot of "testing" (basically not eating gluten for awhile and then eating it again) for me to be convinced. At first I wasn't sure, because it took so long for me to heal from one glutening that I didn't even realize what gluten was doing to me. But after going gluten free for longer and then accidentally being glutened here and there, I began to go wow.. there really is something happening here. I remember the first times I really felt what it

was like to be gluten free.. I was just like.. my God. This is what it is to feel good! This is what its like to be a normal person! My whole life I've been sick, I just never knew anything else.

One day I ate a supposedly safe chicken dinner, not knowing that the chicken was the horrible Tyson brand which is made with wheat. I had no idea, but a couple hours later I began getting sick. That sickness progressed until it was so bad I nearly had to go to the ER. I was covered in a rash all over my face and neck and suffering from complete confusion/brain fog, sobbing uncontrollably, just way out of it. Understand that at the time, I thought FOR SURE the meal had been gluten free so I didn't know what was going on. My mom ran to the trash and found the chicken wrapper and sure enough it said right on the label "contains wheat".

And that was the day I learned all meat wasn't gluten free, lol. Also the day all doubts were erased for good. I had previously wondered if it was possible that all this could be psychosomatic.. but there is no way you can mentally create symptoms when you didn't even know. The reaction was so scarily severe. I was much more careful after that and I, like many others, have absolutely no desire to ever get further testing. It's without a doubt in my mind that I am indeed celiac.

Well said!

For me what turned it around was going off all trace gluten, even in cleaning materials and building supplies as well as vitamins, tinctures, cough medicine etc., NSAIDS, oils, shampoos, lip balm and cosmetics etc. and of course cross contaminated foods! I now always wash my hands before putting anything in my mouth since I never know if what I might have touched may have gluten--especially after say shaking someone's hands or driving a car someone else might have used.

What a difference it has made for me. I was "better" without gluten for the most part but by going off everything I now no longer have fibromyalgia and migraines and no longer get ill from every little bug that comes along (for at least 3 times as long as anyone else) as I used to. Now I seem to be resistant to colds and flu. I now can actually exercise and get stronger without harming my joints and tendons. I no longer get migraines and can think more clearly. I discovered too that I am more calm and don't get anxiety attacks as I used to.

It is thus easier to organize my life and actually have a life. I sleep better and don't have to be in bed for ten hours as I used to. Now 8 hours sleep does fine unless I get poisoned by breathing glue for instance working with building materials (I then use detox herbs and get past that hurdle quickly rather than be out of it a month or more). I can now plan and actually bring those plans about without being derailed etc. etc.!!

No doctor suggested this to me. My alternative health detective doctor did not suggest I completely go off all trace gluten. He just told me I was "too sensitive"!! when he gave me detox supplements etc. that actually had gluten in them. Kaiser completely shined the issue on and said not one word about it. They instead wanted me to take anti depressants to deal with the painful neck and elbows and shoulders etc. which would have been harmful to my already damaged kidneys even though I told them I thought I might have celiac.

My experience has made it difficult for me to respect certain doctors of whatever ilk. Things are changing however it is slow, too slow for me to make myself ill by going back on gluten to do a challenge. Its nice to see however that there are starting to be some more enlightened practitioners out there who recognize one's experience with gluten as a valued information in this diagnosis of celiac.

Bea

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But I can see that my family members suffer from many of the same symptoms, and its frustrating not to have a doctor's word to quote, saying "It's Celiac. And its hereditary. Let your family members know." They just aren't taking my word for it.

This is my biggest frustration for not having an official celiac diagnosis. I KNOW my grandmother had it, and I'm positive my mom does too. I figured it out myself, after realizing all my symptoms felt better on Phase 1 of South Beach Diet. But the GI said my blood test was negative, despite 2 of the 4 values being the absolute highest they could be and still technically be negative. The GI's PA believed me and was sympathetic, and suggested food allergy testing. Went to the allergist/immunologist at a prestigious miliary hospital. He was arrogant and dismissive of my story, but b/c my husband accompanied me to the consultation, he strong-armed the doctor to do the food allergy testing. He was shocked when wheat was positive. He then changed his tune, and scrutinized the celiac blood test, and told me "It would be wise for you to avoid all gluten." So officially, I have "just" a wheat allergy, but I'm sure if I had suffered a few more years, I would've eventually tested positive for celiac. But at least the allergy diagnosis has been very helpful getting family to accept my gluten-free lifestyle. After a year and a half gluten-free, I've never felt better in my life.

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