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wilsjel

Does This Sound Like Celiac's?

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Hi there!

First off, you haven't really been diagnosed. A diagnosis requires a positive blood test, a positive upper endoscopy that shows blunted villi in your intestine, and for some doctors, a positive dietary response. Just because your gyne said 'try the gluten free diet', doesn't mean you have Celiacs!

Secondly, if you decide that you want to be tested you can't be on the gluten-free diet, or the results will be inaccurate.

Glad thats out of the way :)

Now for your symptoms...

Blood in your stool is NOT normal, whether its Celiac's or not. Did your gastro say anything about internal hemorrhoids? Those can cause blood in the stool intermittently, sometimes in large amounts. Are your BMs normal?

Localised pain is not uncommon. Many people who have Celiacs have been diagnosed with fibromyalgia first.

Stomach pain can definitely be attributed to Celiac. Is it cramping or nausea or indigestion? All of the above? The problem is that most gastro symptoms can indicate a wide range of different ailments.

And Yes - the disease can come on suddenly. Some people are diagnosed as children but many, many people here have had a 'trigger' set off theirs: stress, surgery, pregnancy, etc.

I wouldn't recommend going on the gluten free diet until you get tested. Otherwise, you may question yourself and end up putting yourself back on gluten anyway. Even then, you can't be sure the results will be accurate because you may have healed by then.

Feel free to ask lots of questions!!!

-Kim


~Kim~ Gluten-Free since July 2008

9 inguinal hernia surgeries in 3 years (2004-2007)

Symptoms Pre-Dx: constant abdominal cramps, acid reflux, nausea, vitamin B12 deficiency, chronic constipation, fatigue, hyperhidrosis, migraines

July 7/08 - tTG 1 (+>4) - Diagnosed with IBS, given Rx, sent home to "relax"

Gastro refused biopsy as I had "already been though enough"

Enterolab Results (Aug 2008) - Fecal Antigliadin IgA 11 (Normal Range <10 Units)

HLA-DQB1 Molecular Analysis, Allele 1 0202

HLA-DQB1 Molecular Analysis, Allele 2 0301

Sept/09 - New GP gave Celiac Dx based on response to diet and family history

National Celiac Disease Conference 2010 Volunteer

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Hi Kim!.. and thank you!

I understand needing the bloodtest- he told me it wasn't necessary and that I would know if I had Celiac's because of the way my body repsonds without gluten. Oh, doctors. But I have done a lot of reading about it and would really prefer to just get the bloodtest! (I may, especially since, like you said, being gluten-free would cause weird results). Which is also why I emphasized "diagnosed" - - I use that term very loosely! (=

My gastro did mention hemorrhoids, stating that they would show up in my flex sigmoid or colonoscopy - which both were completely clear. He also said he doesn't believe I have stomach ulcers. I requested an upper endoscopy, but he didn't think that was necessary at the time, since he was sending me to the gyno for possible gynological problems.

and.. THANK YOU!! I know blood is NOT normal and NO ONE else -except for my mom and I- thinks its a huge deal!. I just know something is going terribly wrong inside of my stomach.. but every single test keeps coming back negative..

As far as BM.. I can have up to 6 in one day, and sometimes go a couple of days without having one. It just depends - I have diarrhea, not a daily basis, but most definitely on a weekly basis. I will eat something and then 30 minutes later be heading to the restroom. My stomach is also EXTREMELY sensitive to beef. Any type, any way that it's cooked, it does not agree with my stomach AT ALL. (the gyno related this to celiac's by saying that it was perhaps what the beef was cooked in...)

Also, my BM - no matter what type - are always painful.

I never have nausea, but also have never, ever had that problem throughout my entire life.

I have severe cramping of my lower GI area on a daily basis.

I don't know.. things just aren't adding up to Celiac's for me- but I have to remind myself that I didn't go to school for 8+ years to become a doctor...

I really was convinced that I had endometriosis of the bowels but my doctor said that it was unlikely because one of my bleeding episodes was when I was not on my period - and that spots where you have endometriosis only bleed when you're currently on your period. (two out of the three episodes were). He also has me on continuous birth control, which he believes will stop the rectal bleeding if I do have endometriosis cells on my bowels. He also thinks that the cells would have shown up on my biopsies from the flex sigmoid and the colonoscopy or that my doctor would have been able to see it on the walls of my colon..

Anyways, thanks again for your help. Like I said, any input is much appreciated!

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Wow...I am so sorry you are having so many health problems! I am also a 19 year old female and I can understand (and sympathize) with the frustration you must feel.

The only thing I can say now is that you're obviously having this gut feeling about it not being Celiacs. Usually, your gut is right. I think you should really try and insist the testing to your doc because if you go on the gluten free diet, you might start doubting yourself and wonder if that really is the cause to all your problems. I mean, nothing is keeping you from starting the diet once the testing is over, just to give it a shot. Atleast you can tell yourself that you've done everything possible to get a proper diagnosis.

As for me, my doctor refused, and I mean refused to scope me because I've had 7 surgeries in the past 2 years and didn't want to put me through that added stress. Getting into another GI would take atleast 6 months for me and I couldn't wait that long. I opted for Enterolab, where they do stool testing to test for gluten sensitivity and many other sensitivities. You could do that too!

In any case, I hope you find your answers soon. Make your doctors do what you want - they work for you! Take care!


~Kim~ Gluten-Free since July 2008

9 inguinal hernia surgeries in 3 years (2004-2007)

Symptoms Pre-Dx: constant abdominal cramps, acid reflux, nausea, vitamin B12 deficiency, chronic constipation, fatigue, hyperhidrosis, migraines

July 7/08 - tTG 1 (+>4) - Diagnosed with IBS, given Rx, sent home to "relax"

Gastro refused biopsy as I had "already been though enough"

Enterolab Results (Aug 2008) - Fecal Antigliadin IgA 11 (Normal Range <10 Units)

HLA-DQB1 Molecular Analysis, Allele 1 0202

HLA-DQB1 Molecular Analysis, Allele 2 0301

Sept/09 - New GP gave Celiac Dx based on response to diet and family history

National Celiac Disease Conference 2010 Volunteer

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