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Newly Self-Diagnosed - Get Tested! My Story...


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7 replies to this topic

#1 SMDBill

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Posted 07 November 2012 - 05:09 AM

I posted some of this elsewhere, but this is for those newly self-diagnosed or suspecting they have celiac due to improper or incomplete testing by their doctor. I self diagnosed 2 months ago and have been gluten-free ever since. One glutening a couple weeks ago...brutal. I decided to setup an appointment with a gastro and find out just what my situation really is. That appointment was late Monday afternoon and he had me in my procedure (EGD, bone density test, tons of blood work, etc.) the next morning. He wanted accurate test results so since I was gluten-free already he wanted biopsies and other work asap to baseline me and get me on the road to recovery.

I do not yet have the blood work results or bone density information yet. However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES! Although I do not know how long the healing time is for the intestine, my endoscopy results, although not back yet for the biopsies, showed visible villi damage in the intestine. I also have stomach lining damage from daily ibuprofen use for the celiac-induced headaches I no longer suffer from since being gluten-free.

If you doubt getting answers, please don't. It is worth the effort to go through all the testing even if you are gluten-free. Perhaps that's not the case for long-term gluten-free people, but if you've only recently gone gluten-free I'd recommend discussing it with your gastro and getting his/her insight into it. Mine happened to be highly experienced with celiac and left no test out of the list so it's important you find the right doc with the right experience and ability to test you properly.

One interesting note: my gastro has been practicing for 35+ years. In his first 15 years he had exactly 2 cases of celiac. He stated that statistically there should only be 400 cases of celiac in the US, but that we actually have between 3-4 million and possibly many more than that. He has gone from one every few years to now diagnosing a new case every 2 weeks. Don't doubt yourself...go get tested. It's worth the time and you may be surprised at what they find and the insight they give you from a medical perspective. I feel blessed to have such a wonderful gastroenterologist and I wish everyone similar luck finding a great doctor to fully diagnose your condition, and more importantly to get all of your vitamin, bone and other issues under control at the same time.
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#2 my3monkees

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Posted 07 November 2012 - 07:17 AM

Thats awesome that you were able to get in and get tested so quickly!
Unfortunately for some of us its not so easy. Especially without GI symptoms First you have to convince the primary to run the blood test. Which mine was reluctant to do, despite 3 first degree relatives! Then if that blood test comes back negative, there is no chance in hades of getting a referal to a gastro. Sometimes you gotta love the way the healthcare system works! :P
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#3 SMDBill

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Posted 07 November 2012 - 08:21 AM

You're right and I guess I'm fortunate that I have an HMO with open access so I didn't even bother with my GP and went straight to the gastro. I was armed with many pages of notes of my symptoms, changes after gluten-free, list of all symptoms with mine highlighted, etc. I know everyone can't go straight to the gastro, but worth avoiding the GP if the first appointment with the gastro is affordable. It makes me wonder if GP's who don't test thoroughly or know enough about celiac to test and rule it out are actually part of the reason more people are not properly diagnosed.
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#4 GFinDC

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Posted 07 November 2012 - 08:26 AM

Thanks for posting your experince Bill. That's great advice. It doesn't alway work out that damage is detected with the endoscopy, but when it does it is good to know about the extent of damage.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 GottaSki

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Posted 07 November 2012 - 08:33 AM

It makes me wonder if GP's who don't test thoroughly or know enough about celiac to test and rule it out are actually part of the reason more people are not properly diagnosed.


Yes and not all gasteroenterologists are well versed in celiac testing or are actively looking for anything other than "classic" celiac symptoms.

This is the reason I remained undiagnosed for over 43 years.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 tom

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Posted 07 November 2012 - 12:40 PM

... However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES!


Glad you posted this, Bill. I've barely been able to believe how vehemently some claim the opposite around here, as if a biopsy can't possibly be positive w/out constant gluten up to the day of the procedure.

We just had another newer member w/ a positive biopsy after SEVEN months gluten-free. (Of course it's not a recommended testing strategy - I need to say that before someone claims "tom thinks 7mos gluten-free never changes test results" or some such nonsense.)

Anyway, I've long thought the bigger factor in biopsies is the patchy nature of damage combined w/ GIs taking too few samples or from too few locations.
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#7 mushroom

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Posted 07 November 2012 - 04:30 PM

There

Glad you posted this, Bill. I've barely been able to believe how vehemently some claim the opposite around here, as if a biopsy can't possibly be positive w/out constant gluten up to the day of the procedure.

We just had another newer member w/ a positive biopsy after SEVEN months gluten-free. (Of course it's not a recommended testing strategy - I need to say that before someone claims "tom thinks 7mos gluten-free never changes test results" or some such nonsense.)

Anyway, I've long thought the bigger factor in biopsies is the patchy nature of damage combined w/ GIs taking too few samples or from too few locations.


There is a big element of that in it, Tom, but there is also a big difference in the healing rates among various individuals, how severe the damage has been, etc. ec. :)
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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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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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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#8 megsybeth

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Posted 07 November 2012 - 08:58 PM

I decided to go gluten free because I'm breast feeding, after my blood tests were conclusive along with symptoms. I was surprised that the celiac specialist GI I saw for the first time Monday was not that concerned. She said someone with long-term celiac will usually have pretty lasting damage. She actually said there was no rush for me to decide about whether to do the endoscopy, since she doesn't think I really need it for diagnosis.
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