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Newly Self-Diagnosed - Get Tested! My Story...
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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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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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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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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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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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... 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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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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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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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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