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Symptoms Of Celiac May Be Associated With Ic
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I noticed many of you show symptoms of Interstitial Cystitis. For those who did not know IC is associated with Celiac, IBS, Fibromayalgia, etc. IC is a non curable bladder disease, and can be read about here www.ichelp.org I have lived with this since I was at least 12 and can answer any questions if possible. Good luck, we are stronger than most!

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I can't remember if I have this or not.  I do have some bladder issues.  The doc wanted to stick up a tube to take a look to see if the bladder was irritated.  I knew it was irritated.  I looked up the treatment for the problem they were looking for and it would be following a diet.  7/10 things on the diet I already knew to be a problem.  I opted to not do the test and just avoid the three other foods.  Since going gluten free and recovering my bladder has usually been peaceful.  I would be interested in hearing more about this problem if it is what I am talking about.  I am curious to know if my bladder will eventually tolerate these things.

 

I checked and IC is what I thought.  Chocolate and tomato were on the list.  I would like to see that it is connected with celiac and if there must be strict avoidance of all irritants, or if it causes only temporary symptoms.

 

D

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I was diagnosed with IC in Feb of this year and it was kind of a stepping stone to controlling my problems. I still have issues though. I take prelief wit meals, trying glucosamine and marshmallow root. my symptoms get worse if I drink something acidic or if I am close to my period. Sometimes I have to wake up over 5 times in the middle of the night. It's frustrating. I went through the instillations but I didn't make it to the final one due to the fact that the specialist was going on holidays for 2 weeks and they could not be performed without him being present in the hospital. All of my symptoms came back and I just couldn't be bothered to drive the hour and wait 3 hours at the hospital for another 6 weeks.  So it was a waste of time for the 4 weeks I had them. I've heard of people being able to do them themselves at home.



 

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    • Hi Sarah, I agree with cyclinglady, your doctor doesn't seem to understand celiac disease.   Maybe you can check on Google for a local celiac support group.  Ask them if they know of any good celiac doctors in your area. The usual testing process for celiac is 12 weeks of eating gluten and then a blood test followed by an endoscopy later.  You are right, if you weren't eating gluten before the test it was not reliable. Welcome to the forum!  
    • Hi lolobaggins, Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet. Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods. Welcome to the forum!
    • Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.) Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).   Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).   You will feel better soon.  
    • Ha!    That happens to me all the time!!!!!  It drives me crazy!
    • "Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more!  http://www.consumerreports.org/cro/magazine/2016/09/index.htm What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick. https://www.sciencedaily.com/releases/2015/05/150515083232.htm Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay!  You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!   That's my two cents!    
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