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How Many People Are Actually Self-diagnosed?


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123 replies to this topic

#1 no-more-muffins

 
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Posted 03 July 2009 - 07:07 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.
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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.

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#2 cbear6301

 
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Posted 03 July 2009 - 07:27 PM

My doctors have ignored me for years. I didn't know that Celiac/gluten intolerant even existed. It wasn't until I had a random visit with a new chiropractor who within ten minutes told me I had a gluten problem. After ten years and thousands of dollars in tests, I was reluctant to believe him. I did the glutenfree diet for 30 days, thats all he asked of me. Why not, couldn't hurt....I am here to say that most of my problems went away especially the migraines and the vertigo. I have my life back thanks to that chiropractor. I followed up with enterolab and results pointed that I have the gene.

I am disgusted with doctors and forever grateful to my chiro.

Good luck with your future health, you are your best advocate.
  • 2
Went gluten-free 4-1-09 after years of being sick suggested by a fluke visit to a new chiropractor
I had been sick since I was little but no one ever knew why.
IBS
Migraines
Vertigo
Miscarriages and lost my third child to stillbirth
Liver and Spleen problems
Lactose Intolerance
Anxiety
hair loss
Hypoglycemia
Foggy Brain
Joint pain-diagnosed with Fibromylagia

#3 GlutenGuy36

 
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Posted 03 July 2009 - 08:36 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.

Hi my name is Ted. I diagnosed myself long before I had my colonoscopy and endoscopy done. I was in severe pain especially on my lower right side and kept being told by my primary care physician that it was just anxiety. After 10-11 months of this I demanded to be seen by a gasto enterologist and in the mean time I was searching frantically on the internet for what could be causing me my pain.
I narrowed it down to Celiac or Candida Albicans ( yeast ). I was diagnosed on July 14th 2008 with Celiac Disease.
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#4 mushroom

 
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Posted 03 July 2009 - 09:07 PM

I was a diagnosed sufferer of IBS and fibromyalgia for at least 29 years; it was only after I was diagnosed with rheumatoid arthritis that I began my research, found out that ankylosing spondylitis (another autoimmune rheumatoid disease) was treated with a gluten free diet and wondered if it would work with RA too, that I came to this way of eating. Then found out that I had been misdiagnosed all these years, that I am most certainly celiac (have celiac relatives) but was not going back on gluten just to have some doctor say, duh, oh yeah, you do have celiac disease, not fibromyalgia and IBS.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 darlindeb25

 
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Posted 04 July 2009 - 04:51 AM

The percentage is much higher than you might think. Doctors give us the run around, most never even suspecting celiac. It is getting better, they are much more aware now. 9 years ago when I went gluten free, they were thinking celiac was extremely rare. My sister is a diagnosed celiac, 9 years ago last March. Her doctor thought celiac was extremely rare too, and was shocked to find her having this extremely rare disease.

I was gene tested last June...double DQ1 genes, considered the gluten intolerant/neuropathy genes, which means, both of our parents have at least one DQ1 gene. My sister has never been gene tested. I wasn't financially able to be tested, no insurance, nor money at that time. I would love for her to be gene tested, just to see what genes she has. Our father is gluten intolerant too, and his doctor's told him he is not celiac...we know he has one DQ1 gene. Our mom is not gluten free, and we know she has at least one DQ1 gene. Quest Labs tell me I can't be celiac because of my genes, my PCP tells me he doesn't care what Quest says, I am celiac, my neuro says I have gluten ataxia.

http://medicine.med....CeliacSprue.pdf

“gluten ataxia” – ataxia is the most common neurological manifestation; progressive gait and limb ataxia may be the sole manifestation of sprue; thought to result from immune-mediated spinocerebellar damage


So, who is correct? I think they all are. Quest is going by standards the scientists tell them is so, my PCP can look outside the box and realize the jury is still out on celiac research, and my neuro may not realize that gluten ataxia is celiac.

So, I am an undiagnosed gluten intolerant/celiac!
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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!

#6 Jestgar

 
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Posted 04 July 2009 - 05:03 AM

The percentage is much higher than you might think.

I think this is true. My boss suggested to me that I might be having a problem with wheat. He's an MD, does this mean I'm doctor-diagnosed?

When I told a friend how much better I felt without gluten, she immediately took it out of her diet and started feeling better. It never even occurred to her to ask the medical system what she should be eating.

She's now convinced her mom to cut out gluten. Same thing. And mom doesn't see any point in asking for testing.

And what about all those Atkins people? How many of those that stick to the diet do so because the lack of gluten has made them feel better, and they don't even realize that that's what it is.

Or people like my brother and SIL who just don't eat "carbs" because it makes them sleepy.

Lots of different starting points coming to the same conclusion - gluten makes me feel bad.
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
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Leap, and the net will appear.

#7 zero

 
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Posted 04 July 2009 - 10:31 AM

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.

Went in for a routine colonoscopy and ended up blood and biopsy diagnosed celiac.
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Diagnosed Celiac May 2008

#8 Lisa

 
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Posted 04 July 2009 - 10:42 AM

I think that you will find a larger portion of members here self-diagnosed or have a spectrum of gluten intolerance, than those with MD diagnosed Celiac Disease.

It would be interesting to run a poll.
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#9 yolo

 
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Posted 04 July 2009 - 01:08 PM

You could possibly have celiac but the doc just didn't find it--its not always so easy to find. Or you could have a high degree of gluten intolerance. Gluten intolerance is common actually, more common than celiac which is one out of 133 more or less. It is also said 42% of the American public has some kind of gluten sensitivity. So your doc is apparently not up on this question. You may need to educate him, get a dif. doc or just self diagnose. Bottom line, if you feel better without it, don't eat it. And if you go completely off even all trace gluten for a while and then get what we called cross contamination with trace gluten and you actually react badly to it, then it is very likely you have celiac...

Bea
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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!

#10 nutralady2001

 
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Posted 05 July 2009 - 04:44 AM

I worked it out with the help of a friend and was diagnosed by biopsy/antibodies 12 months later
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Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis
Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)
Diagnosed Hashimoto's Disease/Hypothyroid November 1994
Low B12 November 2006
Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it
Gluten free since October 2006 after failing gluten challenge
Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007
Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)
Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.
Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

#11 Jonbo

 
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Posted 05 July 2009 - 05:45 AM

I was diagnosed by the GI specialist. Never saw it coming either, in regards to suspecting this. Had my own symptoms for months that started with possible IBS, to something else, then had a biopsy done with the intestine and came back with that.
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#12 tarnalberry

 
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Posted 05 July 2009 - 09:07 AM

it's not as clear as "biopsy-diagnosed" or "self-diagnosed". There is a lot of area between those two. For instance, some doctors will diagnose based on just blood work, or even just a positive response to the dietary change. It's not a black or white line, because testing is just not that reliable in a disease as complex as this one manifests.

I would call myself doctor-approved self-diagnosed. I had inconclusive (but not quite negative) blood test results after being strictly gluten free for two weeks, but had a positive result from the gluten free diet, and experienced a recurrence of the same symptoms when I did a gluten challenge. My doctor took all the details down, said "well, if it bothers you, don't eat it. I'd consider you're likely celiac."
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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

#13 yolo

 
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Posted 05 July 2009 - 09:09 AM

I was diagnosed as an infant due to failure to thrive when introduced to grains. I was put back on them at age four however and grew so they thought I literally had grown out of it. However my health proceeded to have difficulties ever since. I finally figured it out due to extreme sensitivity to gluten. Previously I thought it was an allergy but found out it was far more. Last year I asked my mother if this famed "failure tho thrive" syndrome I had as a baby was related to celiac (since I had heard this referred to with celiac)--and she finally admitted I had been diagnosed as an infant. Ouch!! If only they had told me years earlier....

Bea
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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!

#14 NoG4MeWV

 
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Posted 05 July 2009 - 09:20 AM

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.


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.
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#15 angieInCA

 
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Posted 05 July 2009 - 10:17 AM

I guess you could say I self-diagnosed about 4 years ago but listened to Doctors who laughed and said it was not possible and couldn't get the tests I asked for. I listened to those I thought all wise and continued on my merry way of eating Gluten and trying to find out what the heck was wrong with me for the next 3 years. Finally, after not being able to get off the bathroom floor for 7 days, my GP stated "Maybe you do have a problem with Gluten." I found a new GI Dr. and while I did not have enough anit-bodies for a positive test (I had been eating very gluten light) he felt due to my extreme positive response to the Gluten Free diet I had a 99% chance of having Celiac Disease. A month later I tested positive for DH which confirmed it for me but I have never had the endoscopy and biopsy done.
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Transplanted Southerner in Sunny So.Cal.
Misdiagnosed 47 years
Diagnosed Gluten Intollerent Aug. 22. '08
Blood Tests Weak Positive to Negative probably due to low Gluten intake for 8 weeks before testing.
Opted not to have Biopsy.
Positive DH testing Oct. 30,'08
Gluten free since Oct. 28, '08

Diagnosed with Fibromyalgia May 10,'13





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