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How Many People Are Actually Self-diagnosed?


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123 replies to this topic

#61 freeda

 
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Posted 14 July 2009 - 06:04 PM

Everything that I have, I have self-diagnosed and then gotten confirmation from physicians. No one knows my body better than me, so it makes sense. You just have to be an educated patient. I don't blame them. Medicine is inexact.
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#62 yolo

 
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Posted 14 July 2009 - 08:32 PM

Interestingly enough my mother was in a research program during the 1920's for sprue. Unfortunately however the research seems to have been lost. She was in that program in San Francisco for roughly 14 years. Later however no one believed her except the guy from the Mayo Clinic who retired to a small desert town where my parents worked as archaeologists. So on that level I suppose she can be forgiven for thinking one shouldn't be alarmist and inform her children even though I was diagnosed with celiac sprue as an infant as was my brother with Down's. Nevertheless it is interesting that research on celiac sprue was done here in the SF Bay Area relatively early. It just hit deaf ears...
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#63 Mskedi

 
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Posted 15 July 2009 - 07:54 AM

I'm in the process of self-diagnosing. After almost three weeks of no gluten, I can at least say that there have been many positive changes. The real test is going to be when I have my doctor do some blood work in about six months to see if I've been able to absorb any iron. Even if not, I have to say I feel pretty dang good right now, and with my family's history of Celiac, it's probably safe to say I have it, too.
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#64 klala

 
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Posted 17 July 2009 - 01:22 PM

I cut it out of my diet in February, planning to do the 2 week thing and then reintroduce it. I never reintroduced it because I stopped having stomachaches every single day and pooping out everything I ate 6 times a day and my eyes weren't bloodshot and I could spend more than 2 hours at the mall without needing a nap and I wasn't bloated every evening scared to go to club meetings and have my intestines making funny noises. I got an endoscopy done 3 months after being off gluten because the doc said that wasn't too late, but my biopsy was totally normal. So frustrating.
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#65 darlindeb25

 
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Posted 17 July 2009 - 03:17 PM

What's a "2 week thing"? If you mean eat gluten for 2 weeks then have a 2nd test, 2 weeks will not work. If you are gluten intolerant, then eating gluten once will prove to you that you can't have it.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#66 BethJ

 
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Posted 18 July 2009 - 11:35 AM

Tomorrow I'll celebrate my one year gluten-free anniversary. I had eczema for years and was tiring of having bumps, splotches, blisters etc. The dermatologist would put me on pred and then Rx creams but I knew there had to be some underlying cause. Even he said "something" is causing it.

I started searching the net and discovered DH looked a lot like what I had. The puzzle pieces started coming together when I remembered the mysterious bouts of D and how my father would go days without leaving his home because of it. I also had a lot of discomfort that seemed to come and go without warning.

I decided to try going gluten-free and three days later, my husband happened to mention that the red welts on my neck were gone. Those red welts had been there for at least two years. The creams kept them under control but they never went away. I was amazed and decided to stay on the diet.

About two weeks later, we went on vacation down to the Keys and one night I decided a plate of pasta would be worth a little itchy skin. I was up all night and sick for the next two days. That seemed like proof enough for me.

Over the last year, there were times I started to think perhaps this is all in my head. This is the part of being self-diagnosed that's difficult. A firm diagnosis would eliminate these feelings. Anyway, one night I was depressed and ate a Green Giant frozen vegetable package that contained soy sauce. I also ate one spoonful of my husband's mashed potatoes and gravy. I figured it was such a small amount of gluten, I'd be fine. Oh how wrong I was! My stomach hurt all night and I felt like I had the flu for the next two days. That little indiscretion proved I'm either celiac or very gluten intolerant.

My doctor wrote on my chart that I'm gluten intolerant when I told her about my diet. She didn't seem to think testing would prove anything more than I had figured out. I was quite relieved that she didn't want to pursue it with a myriad of tests which at this point wouldn't show anything anyway.

I'm sorry this is so long. I've been lurking for almost a year and this board has been the greatest source of information and support. You'll never know just how much it has helped. There were times when I felt like a leper but when I came here, I felt at home among friends.
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Beth in Florida

Gluten-free since 7/19/08
Alcohol free since 6/28/10

#67 no-more-muffins

 
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Posted 02 September 2009 - 12:55 PM

I was just reading through this old thread and I thought I'd resurrect it because it might be helpful for some of our new members. I was thinking about this thread becasue I still struggle sometimes with the fact that I am self-diagnosed. I think that some people don't take my diagnosis or my food intolerances seriously and I wanted to read this thread for some validation. (No, I am really NOT making this up!)
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No-More-Muffins
Blood and biopsy negative 6/2009, Diagnosed with IBS, "mildy active colitis" (My Dr. didn't tell me this, I saw it on the patho report)
Enterolab results negative for gluten, soy, casein, yeast and egg (maybe I have low IgA)
Gluten free diet starting post-endoscopoy 6/2009
I have found that I not only react to gluten but to soy as well. I'm still working on the dairy elimination and trial.

#68 StephanieM

 
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Posted 02 September 2009 - 06:10 PM

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.


Self-diagnosed here.. Went gluten free at my own hunch, after doc told me, that as a mom of 2 young kids, I was supposed to feel that bad.. Went of gluten 1 1/2 years ago, and symptoms that I lived with forever went away.. Blood test negative because I'd already been off gluten.. Got Genetic testing done to prove it to others, because I knew it wasn't just an intolerance.. I knew it was Celiac. testing came back showing I have 2 copies of the Celiac gene... Doc never even suggested Celiac before I went gluten-free...
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#69 BoydBT

 
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Posted 11 January 2011 - 07:23 AM

Tomorrow I'll celebrate my one year gluten-free anniversary. I had eczema for years and was tiring of having bumps, splotches, blisters etc. The dermatologist would put me on pred and then Rx creams but I knew there had to be some underlying cause. Even he said "something" is causing it.

I started searching the net and discovered DH looked a lot like what I had. The puzzle pieces started coming together when I remembered the mysterious bouts of D and how my father would go days without leaving his home because of it. I also had a lot of discomfort that seemed to come and go without warning.

I decided to try going gluten-free and three days later, my husband happened to mention that the red welts on my neck were gone. Those red welts had been there for at least two years. The creams kept them under control but they never went away. I was amazed and decided to stay on the diet.

About two weeks later, we went on vacation down to the Keys and one night I decided a plate of pasta would be worth a little itchy skin. I was up all night and sick for the next two days. That seemed like proof enough for me.

Over the last year, there were times I started to think perhaps this is all in my head. This is the part of being self-diagnosed that's difficult. A firm diagnosis would eliminate these feelings. Anyway, one night I was depressed and ate a Green Giant frozen vegetable package that contained soy sauce. I also ate one spoonful of my husband's mashed potatoes and gravy. I figured it was such a small amount of gluten, I'd be fine. Oh how wrong I was! My stomach hurt all night and I felt like I had the flu for the next two days. That little indiscretion proved I'm either celiac or very gluten intolerant.

My doctor wrote on my chart that I'm gluten intolerant when I told her about my diet. She didn't seem to think testing would prove anything more than I had figured out. I was quite relieved that she didn't want to pursue it with a myriad of tests which at this point wouldn't show anything anyway.

I'm sorry this is so long. I've been lurking for almost a year and this board has been the greatest source of information and support. You'll never know just how much it has helped. There were times when I felt like a leper but when I came here, I felt at home among friends.


Cool Story. I had to tell the dr to test me. it is amazing that they are clueless.
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#70 domesticactivist

 
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Posted 11 January 2011 - 08:47 AM

Our son is, but when we talked to our dr she said "why would you put him through testing if you know this is what works?" the obvious positive change plus his classic symptoms and abject fear of reintroducing gluten is enough. He has no desire to be so miserable ever again. Sister and I are going to get some testing done.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#71 Monklady123

 
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Posted 11 January 2011 - 09:00 AM

I was just reading through this old thread and I thought I'd resurrect it because it might be helpful for some of our new members. I was thinking about this thread becasue I still struggle sometimes with the fact that I am self-diagnosed. I think that some people don't take my diagnosis or my food intolerances seriously and I wanted to read this thread for some validation. (No, I am really NOT making this up!)

You could always just make it up and say the doctor diagnosed you. :) They'd never know and you'd have the doctor's "authority" behind your diet. ;)
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#72 DJ Jess

 
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Posted 11 January 2011 - 08:52 PM

I'm new here and this is my first post. If there is somewhere I'm supposed to go introduce myself I will, promise. :)

I'm self diagnosed. Well, sort of. I'd been complaining to my doc about stomach problems on and off for about 2 years. Additionally, I've had migraines for YEARS, some of which would last 2-3 weeks. Last Spring I saw my doc again for my stomach troubles (alternating C or D, cramping, VERY bloated all the time, yada yada), and I said "You know, I think I've noticed I feel worse when I eat wheat." And she said "maybe you have Celiac, do you want me to do some tests?" I said 'But if I did, wouldn't I KNOW it by now??" (this was before all the recent reading I've been doing...I know better now...) She said "not necessarily" but didn't push me to get tested and I vowed to keep "gathering data" (my idea/term) regarding what foods made me feel good and bad. I haven't been back to see her since, not because of any fault of hers, but I'm busy, etc.

Well over the past few months it had become increasingly obvious that I can NOT eat wheat. Instant pain, then bloating the next day, etc. This in addition to the fact that I catch EVERY cold that comes at me. I had no idea they were connected.

So over the Fall I basically ate hardly any wheat/gluten, would decide "oh, it's probably not that bad", have a cookie, prove myself wrong and start all over again.

It wasn't until a few weeks ago that I REALLY started reading about it and all the bells went off in my head. Migraines, bloating, sinus infections - oh my! :-) So I've been 100% gluten free for about 3 weeks now (including getting new cutting boards, pots, pans, etc.), and am going to see my doc on Friday to tell her of my "information gathering." I realize I've shot myself in the foot with regards to testing now that I've been gluten-free for a few weeks, but I don't mind and I'm sure my doc (whose idea it was in the first place...) will understand and support me. The other day I toasted my Udi's bread in our regular toaster and was really migrainy and spacy/foggy the next day. OH! I also usually get hives after a bath and that has stopped.

So yeah. While I think it's too late to get tested, I think between my doc being the first to suggest it and my anecdotal evidence, I'm confident I'm at LEAST "gluten intolerant" if not all the way celiac. And I don't really need a label. Just a healthy life. I'm an all-or-nothing kind of person and since I already feel better in many ways, I'm confident I don't need the official DX to keep me on the gluten-free diet. Thanks for letting me tell someone who doesn't get all glossy-eyed like some of my friends do. :-)

Jess
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#73 Dixiebell

 
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Posted 12 January 2011 - 05:25 AM

Welcome DJ Jess!
It is so good to hear you have been able to get better. Many others here have had similar stories to yours, so you are not alone. Please stick around, ask questions, give opinions and read as much as you can. This is such a wonderful place for support.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#74 srall

 
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Posted 12 January 2011 - 09:53 AM

I'm self diagnosed, and my daughter (7) tested negative, but based on dietary response she's gluten/corn/dairy free. I'll be gluten free for a year this March. Sometimes now I just think I'm crazy and this was in my head, or was something else...like caffeine, or a combination of several things. But then I have to stop and remind myself how last April I was practically shouting from the rooftops "Gluten free is Life Changing" I think things are so second nature now that I just forget how it all was in the beginning. And seeing the drastic changes in my daughter who began her journey in October is also a good reminder as to how much diet effects us. She still has a ways to go though. I think her health was much more compromised than mine.
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#75 mareahf

 
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Posted 12 January 2011 - 05:44 PM

I wasn't sick for long but it happened very fast. I had bad diarrhea, losing weight, nausea, headaches, fatigue and knew something was very wrong. I went on WebMD and put in my symptoms. Celiacs disease came up and I remembered how I would crave potatoes and gag looking at bread. I decided to try a gluten-free diet and I felt better in a week! And I keep feeling better the longer I stay gluten-free. I went to a doctor and told him my story. He did not do any test but gave me the Celiac diagnoses. Some say I should get tested but I have done an elimination diet to make sure and I can feel a difference with and without gluten, that's all the test I need.
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