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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Often Is Too Often?!
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11 posts in this topic

Hi

 

I have a question regarding symptoms I'm experiencing and wondered if anyone has experienced anything similar.

 

I've had constant diarrhea now for months.  Literally months - each time I go to the bathroom its undigested food.  Also whenever I eat I have an immediate urge to go and can't ignore it.  This isn't necessarily after a meal, it could be a few bites into whatever it is I'm eating.

 

My question is where to go from here?  I've cut out gluten, wheat and dairy but something is obviously still very wrong as it can't possibly be normal to have to tolerate this.  I'm job hunting at the moment and already worrying about this, as I'm a psychologist by profession so can't exactly leave in the middle of a therapy session!

 

Any advice would be gratefully received.

 

Thanks

Heather

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Hi

 

I have a question regarding symptoms I'm experiencing and wondered if anyone has experienced anything similar.

 

I've had constant diarrhea now for months.  Literally months - each time I go to the bathroom its undigested food.  Also whenever I eat I have an immediate urge to go and can't ignore it.  This isn't necessarily after a meal, it could be a few bites into whatever it is I'm eating.

 

My question is where to go from here?  I've cut out gluten, wheat and dairy but something is obviously still very wrong as it can't possibly be normal to have to tolerate this.  I'm job hunting at the moment and already worrying about this, as I'm a psychologist by profession so can't exactly leave in the middle of a therapy session!

 

Any advice would be gratefully received.

 

Thanks

Heather

Could your problem be IBS? Everyone's symptoms vary and if you are under a lot of stress, it can make it worse. Also, do you get adequate fibre in your diet? I have both Celiacs and IBS and to begin with, found it difficult getting enough fibre in my diet, but gradually found alternative sources of fibre, which seems to help - my main problem was stomach cramps.

Hope this helps.

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Hi

 

My question is where to go from here?  

 

Thanks

Heather

How about a doctor?

Have you been tested for parasite and Bacteria overgrowth? Maybe you don't have a gluten or dairy issue at all and just need to get that treated.

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Hi

 

Sorry should have explained more - I was diagnosed earlier this year with celiacs and then was told by my doctor to try cutting out dairy as there has been no improvement in my symptoms since being gluten free. 

 

I haven't been tested for anything bacteria-wise as far as I'm aware.  I did wonder about also having IBS - I know my dad had stomach issues for many years before he passed away and I'm sure he had IBS (I'd have to check with my mum) although I'm not sure that's hereditary/genetically linked in any way.

 

My concern is obviously that I'm not getting adequate nutrition from what I'm eating, even though my diet is good and I always cook from scratch.  I also get very very tired and lethargic, but maybe that's due to the frequency of dashing to the bathroom and being dehydrated perhaps?

 

Thanks

Heather

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Could you be getting CC'ed? Do you share a home with gluten eaters? Keep your own condiments, have your own toaster, not use scratched teflon or plastic, not use old or shared wooden spoons or cutting boards? How about your supplements and medications? Have you checked your toothpaste, shampoo and lipstick? Do you kiss a gluten eater? Do you eat in restaurants?

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Hi

 

Sorry should have explained more - I was diagnosed earlier this year with celiacs and then was told by my doctor to try cutting out dairy as there has been no improvement in my symptoms since being gluten free. 

 

I haven't been tested for anything bacteria-wise as far as I'm aware.  I did wonder about also having IBS - I know my dad had stomach issues for many years before he passed away and I'm sure he had IBS (I'd have to check with my mum) although I'm not sure that's hereditary/genetically linked in any way.

 

My concern is obviously that I'm not getting adequate nutrition from what I'm eating, even though my diet is good and I always cook from scratch.  I also get very very tired and lethargic, but maybe that's due to the frequency of dashing to the bathroom and being dehydrated perhaps?

 

Thanks

Heather

You really need to see a doctor! Before I was diagnosed I was severely malnourished, even though I was eating. I was so weak I had to walk with a stick, even just down my garden, I had no muscle tone at all and my hair was falling out. I am not trying to scare you but I would hate you to get as ill as that before you sought help. You need various vitamin and mineral levels checking.

Remember though, it can take a while before things settle down on a gluten free diet, it doesn't happen overnight, especially if there's a possibility that you are being contaminated by something unwittingly.

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Heather......IBS is not a diagnosis.  It is a set of symptoms that the docs give a cute moniker to and then they symptom treat it.  if you have been told you have IBS, all they are saying is that your bowel is irritated....nothing more.  I don't think you need to be told what you already know.  The key is to finding out why your bowel is so irritated.

 

One of the hallmarks of constant, unrelenting diarrhea is Microscopic Colitis.  It occurs frequently with Celiac Disease.  You may not be eating gluten at all but have another problem like this.  I would ask the doc about it and, at least, be tested for it.  When your large intestine is inflammed, it cannot do it's job of pulling water from waste and it never becomes solid.  You end up with diarrhea all the time.

 

I wish you luck in finding the problem but don't assume that you are eating gluten and do not let them tell you it's IBS.  That's their cop-out for being unable to find the problem.

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@Gemini - thanks.  This makes a lot of sense! 

 

There is only me and my boyfriend in the house and he's a chef who is VERY aware of CC and conscious of it both at home or if I (rarely) eat at the restaurant.  It's baffling both of us and with my skin being so bad as well, I'm just generally worried.  The doc didn't mention that, but then again I guess it's hard because they can only go on what you tell them.  I got told I had an eating disorder for years because I lost so much weight - it wasn't until I have become in my late 20s that they don't put it down to that and tested me both biopsy and bloody test for celiac.  I was told to go dairy free because the villi are apparently basically flat.  However, I do still worry that this amount and frequency/urgency to go to the bathroom isn't normal.  I'm not anxious about this condition, and doing the job I do I make sure to take a step back and evaluate, so it's not a nervous response, it is certainly very physical particularly as my food is for the most part undigested but there is an awful lot of water/mucus which shouldn't be there.  I eat primarily protein and vegetables and fruit and stay away from all the processed gluten-free products.  I've not yet entertained any grains because I think at this point they'll only add to the problem rather than lessen it.  I also stopped drinking coffee and more acidic things etc and upping my water intake.

 

I take Vit B12 as a supplement as I've been told I'm very low on that, and also calcium as I'm not having any dairy at the moment (and was never really eating as much as necessary to prevent osteoporosis).

 

Baffling! 

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You could try adding pro-biotics.  Also digestive enzymes.  Taking pysillium husks or another fiber with your food may help.  If your villi are flat as pancakes it may take a while for your gut to heal.  That doesn't mean it won't happen, just that the healing process can be somewhat slow.  You probably haven't been absorbing nutrients that your body needs to heal for a while.  Taking it easy on your gut is a good idea.  Eating raw veggies (like salads) may not work for you at first.  Reducing or eliminating alcohol for a while may help.  Spicy foods (peppers) aren't a great idea.  A simple, whole foods diet may be less "exciting" than the TV programs food, but it easier for your body to digest and detoxify.  You might also find Betaine HCL helpful when eating things like meat or oily/greasey foods.  The gallbladder is in a control loop with enzymes produced in the gut, so if the gut is irritated that control loop is out of whack.

 

Gluten is a in wheat, rye and barley, but some of us also react to oats.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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I agree that you need to address this with your doctor. If you are seeing undigested food that can be a sign of something serious if your seeing more than stuff like corn and nuts.  Make sure you stress that with your doctor.  You may just be slow to heal but something else unrelated could also be going on. Make sure they test your vitamin and mineral levels if they haven't already.

I hope your feeling better soon.

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I love it when people dis IBS as a diagnosis. To me, any medical name with the word syndrome in it just means the doctors don't know or didn't care to try to figure it out.

Make the doctors appointment ASAP. Start with the simple tests that can show things like parasites, bacterials overgrowth, or blood in stools and then go from there. Throw in some testing for vitamin deficiencies while you're at it because you definitely haven't been getting what you need from food.

And until that appointment date, I'd add the probiotic. For the job interviews, I'd time my meals so that it would be less likely that you'd have a problem during your meeting times.

Having had C diff. in the past, my heart definitely goes out to you. Best of luck in finding an answer quickly.

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