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Bathroom Habits
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I've been gluten-free for 7 months, dairy free for 4. I hate to bring up such a personal topic, but how worried should I be that my bowels are not even close to being formed even after all this time on the diet? It's been about a year and a half since I've had a "normal", meaning formed, stool. I am regular and only use the bathroom once a day, but am worried about how close I always am to it being diarrhea, it's like it's always right on the verge of that but a little bit better. Should I simply assume this is how people with celiac disease are and not expect to have another "normal" bathroom break again in my life?

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Gillian, when is your colonoscopy? Make sure they biopsy, even if they don't see anything. You may very well have some type of colitis or possibly Chrohn's disease. It seems to me that you should be feeling better by now. I hope that they are able to figure out what else is going on, because there has got to be more wrong in you than just Celiac. You are in my prayers.

God bless,

Mariann

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Thanks so much, Mariann. My doc already mentioned he will biopsy me for colitis, and I'm going to ask him to also take a few extra biopsies to check for microscopic colitis. A lot of the symptoms of MC sound like me. My colonoscopy is April 12th, it was originally set to be done in January but I had a virus at the time so they didn't want to risk the sedation. I'm really afraid of the colonoscopy but I know it must be done. I hope you're feeling well on the diet! Thanks again for your kind words!

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The colonoscopy is not that bad, but the prep is the worst. I can't stomach the laxatives they make you take. I understand needing to be cleaned out, but they take it to the extreme with that stuff!

I hope that you do fine and your doctor is very careful to take a really good look. I wouldn't want them to miss anything obvious! You have been through far too much and I want this to be over for you. :(

And I am feeling much better on the diet. And getting contaminated less since the whole family is gluten-free. Except my husband, he is only partially gluten-free. But he won't get tested yet, so he doesn't have to stick to the diet. :rolleyes: We had a bad gluten accident at a family party last weekend and we are all still recovering from that, but showing signs of improvement. Yeah!

God bless,

Mariann

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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