Any type 1's with Chrohns or Coeliac disease? How did you know you had it?

I have T1 and my daughter was diagnosed at age 5 with type 1.  She had a positive lab on diagnosis but had 2 negative endoscopies.  The gastroeneterologist just wants a positive intestinal biopsy- but she's not getting it.  I won't let her scope again.  All of Emma's labs have been positive for the past year ( we've been at this diagnosis for 4 years!)  Emma has constipation, terrible stomach aches, wild blood sugars amongst other things when on gluten.  She's been on a strict gluten- free diet for 1 year now and is SO much better!  She can't even brush her teeth with Colgate or Crest tootpaste- it gives her a tummy ache.  She has to have everything gluten free to feel well!  Celiac can be a long and arduous process to diagnose.  But 1 in 10 people with Type 1 also have Celiac so there's alot of us out there that probably don't know it or have not been tested.

I have been having some extreme intestinal problems lately. I literally cannot use the bathroom for weeks at a time. I have tried stool softeners, milk of magnesia, suppositories, and enemas. I have been drinking a ton of water. I have even been drinking prune juice. I have called my family doctor and my endo and they both gave me the same advice. Just eat healthy, drink lots of water, try an enema. The past couple of days I have noticed my stomach gets really full and bloated and then I end up throwing up. I am so frustrated and my doctors haven't really been much of a help. I feel like something is wrong but they are just kind of blowing me off. I was wondering if my symptoms were similar to others who have celiac or crohns?

i have celiac and your symptoms are not similar to mine.

your symptoms sound similar to a hiatal hernia or delayed gastric emptying (gastroparesis). 

*i just tried explaining the symptoms of both and then deleted it because i wasn't very good at it.  try this website for hiatal hernia info: then try this website for gastroparesis info: and try this website for celiac info:

a simple blood test (tTg antibody test) can determine if you have antibodies present for celiac. a hiatal  hernia can be diagnosed by an x-ray or endoscopy (tube with a camera down the throat). gastroparesis is a little harder to identify, but you eat a radioactive substance (i ate radioactive eggs) then they film your body digesting the food and determine a diagnosis based on the film results.

Ok so I'm a nurse and just let me tell you this is not ok for you to feel this way.  There are numerous reasons you could be feeling this way.  If they are not taking you seriously I'm sorry.  You need to see a Gastroenterologist.  You could have Celiac, gastroparesis, Crohns, or some other issue.  You will only know if you are checked out.  You should be having a normal bowel movement daily.  How have your blood sugars been?  With constipation and inflammation you will usually experience high blood sugars or drastic highs and lows.  If I were you I'd be on the phone asking for the next appointment with a Gastroenterologist tomorrow.  Ask to be placed on the cancellation list and everything.  If you can't poop you can't live- that is truly awful.  We are at high risk for other autimmune diseases since we already have one and gastric emptying problems are common with diabetes- especially if you have had poor control.  With blood sugar fluctuations we tend to dehydrate easier as well which means more constipation for some. 

one more thing, Celiac can be a symptomless disease.  Don't compare your symptoms to others and think you don't have it.  There are so many different things associated with Celiac- you must read about it.  Check out the newest book called The G Free Diet.  You will understand Celiac Great after that.

The main symptom of Crohn's is having to go to the bathroom all the time.  My mom had ulcerative colitis (it's like Crohn's disease) and said she had to know where every public restroom was and couldn't go more than an hour without having to poop.  She eventually had part of her large intestine and colon removed, but this was back in the 70's.  Treatments are much better now.

Celiac means you aren't digesting wheat.  Well, actually no person can digest wheat, but in people with Celiac it causes digestive problems.  The only way to be diagnosed is to be tested.  Like Jewels said, many people are symptom-less or don't recognized the symptoms.

I was having stomach probs a couple of years ago, and I agree that seeing the GI doc was the most helpful way to go. She was really knowledgeable about T1. I turned out "just" to have gastritis (more common in D apparently...), but I felt like she did a thorough work-up and ruled out tons of stuff.

P.S. She said it's normal to go "#2" anywhere between 3 times a day and once every 3 days. So, going once each day isn't necessarily the norm. But, a whole week isn't within normal.

Just to clarify- Celiac is an Autoimmune reaction to gluten.  It is not an allergy to wheat or the inability to digest wheat. It is autoimmune just like T1- alas the connection to T1!  When gltuen is eaten by someone with Celiac it flattens the villi in the small intestine.  It is an autoimmune reaction, the body harming itself just like killing off of our beta cells in T1.

Weeks? I think that could be dangerous. You could get peritonitis and that is very serious. You should see a specialist.

Hot liquids can really help. Try several large glasses of hot water in an emergency like that. 

I'm echoing what others have said - definitely see a GI doctor to figure out what's going on.  My brother has IBD and he has struggled with constipation for most of his life.  There are a variety of things you can do to help, but at this point, without knowing what the problem is, there isn't much more you can do because it sounds like you've tried pretty much everything with no or little success.  Make sure you are getting plenty of soluble fiber and try to avoid insoluble fiber because it makes it worse.