Round Up Of Symptoms

[UK2004]

Should really have posted here a long while ago but better late than never. I was born with a cow's milk allergy and brought up not drinking milk but as a young teen decided to consume dairy products, would suffer catarrh and diarea and blocked chest. Around the age 14 started to get excessive thirst and frequent urination, didn't matter what water I drunk I was still wanting more and experienced some pain with urination occasionally. I went to the doctors and was sent for a fasting glucose test which came back as totally normal blood sugars. I went away annoyed not knowing what was wrong.

 

Within a year of the excess thirst my dad who had been diagnosed in middle age with celiac told me he suspected I may have inherited it and should get tested. I mentioned it once to my GP who said no no chance not worth testing. I was sent to the STI clinic as they thought the pain on urination must be related to and STI, these all came back negative so they suggested another diabetes test as did not know what to do. They then sent me to an endocrinologist who did several tests and said it's definitely not diabetes insipidus or type 1 or 2 diabetes so it must be a habit as he couldn't understand it. I was now noticing that after eating bread or enjoying my favourite food...pasta I would get super thirst and the water just ran straight through my system like a tap. Two further diabetes tests later all negative and fast forwarding to last year, I had my usual trip to Italy but found I was getting painful urination within half an hour of eating pasta and had to have water constantly at night from the thirst. Then this January the worst started, I woke up early january felt an urgent need to urinate then within minutes of going needed to go again, I panicked and thought well this surely will pass in couple days, howeveerm, it didn't and I began to read about prostatitis, intestitial cystitis etc. I was also getting stomach pains so bad that I went to a and e wondering if i had a hernia or chrohns disease etc. the doctor that saw me asked if i had lost weight and I said yes about a stone and a half in a 6 week period during which the extreme bladder problems started. She said is there any celiac in the family so I replied yes my father, she was very shocked that myself and siblings had not been tested. By now I had started the intestitial cystitis diet and still felt even after my gluten containing breakfast that sharp pains were flying around my pelvic area within an hour, for the first couple of weeks I had nocturia, urinating 8 times a night and another symptom that I had had for years itchy sensitive skin which had become its worst ever. My parents immediately said now you won't come up with excuses not to cut out gluten so I set to removing it instantly, my beloved pasta, soda bread etc. The first thing I noticed was being able to sleep 6 hours without going to the toilet after a couple of weeks which slowly improved to the point I can sleep 8 hours a night often without waking. 

 

I started to time my urination during the day as I found the extreme urge to go reducing, I still had burning in my urethra but felt an overall improvement in all my symptoms. I googled the excessive thirst and the bladdr problems and gluten and finally found some posts on this site and found them very inspirational it made me eel I was not going nuts and also made me feel I was not suffering from intestitial cystits and in an uncurable state.  The urologist was convinced it must be my prostate and when he didn't feel inflammation said maybe it was going away. By the time I saw him I had gone from urinating twenty times a day to 5 or 6 which he said was miraculous. I mentioned to him that for 16 years I had suffered from mouth ulcers and have not had a single one since cutting out the gluten, he said this could be from cutting out chili or just a concidence yet I had read that celiac had been linked to canker sores. At junior school I had suffered from recurrent nose bleeds that were unexplained and was known for having skin that went red from light touches by people. 

 

I had had gastric symptoms or either nasty constipation leading to a fissure or sudden diarea after ingesting large quantities of bread or a pizza which I had just put down to being overloaded. I had unexplained bouts of depression that despite having to deal with this frequent urination and pain I noticed had disappeared since cutting out the gluten. My parents have been very supportive during this past few months as on a number of occasions I have said to them what if I am left with chronic pelvic pain and they have said again and again you can't go from drinking 5 or 6 litres of water a day with dry mouth and constant mouth ulcers and urinating 20 times a day to having no mouth ulcers, drinking a litre and a half a day and urinating 5 or 6 times a day just from cutting out chili or tomatoes, they are convinced I have harboured celiac or non celiac gluten sensitivity for years leading to the assault on the bladder over the years and it essentially giving up in January.

 

When I read on here that water is absorbed in the small intestine and this is where celiac damage occurs it all makes sense as to why I had this problem and in my case it seems the general auto immune assault hit my bladder. I'm hoping now that as time goes by my bladder will totally heal up. Interestingly I had multiple sport's injuries requiring surgery growing up including extensive knee damage ending my sporting career, within two months of giving up gluten the pain where I had surgery has reduced which is an amazing unexpected bonus. It's 4 and a half months since giving up the gluten and I feel my bladder issues are 70% removed I hope over the remainder of the year the rest is cleared up, my itchy skin has gone, stools have improved(they contained partially digested food in the run up to my bladder symptoms exploding in january) my thirst has decreased enormously and I expect this to improve further as healing occurs. I just wish I had listened many years ago to my parents.

[IrishHeart]

You should have been tested for celiac once your Dad was diagnosed.  . 

 

Your symptoms are not unlike ones I had (and so many others on here).

 

I am glad you feel better! (but IMHO, you most likely have celiac!)

[Questore]

My, you are stubborn!

 

I am glad you are feeling so much better...have you found a pasta brand that works for you?

[UK2004]

I haven't tried any pasta brands yet as I react strongly to corn and the ones I looked at had this in them.

 

I wonder for other people that had bladder symptoms pre celiac diagnosis how long they took to have full bladder recovery. I think one I read said that the bladder was last thing to totally heal up once gluten free.

[Questore]

I heard that the pain was the last to go...but that's probably for those of us with Fibromyagia - muscles stiff and cramping everywhere!

 

Ha!  It's probably what ever you need fixed most that will go away last.

[UK2004]

Hopefully the pain will be the last to go.

 

I read on a couple of sites about excessive thirst in other celiac people, have other people here noticed it? Doctors were convinced I had diabetes enough for three fasting glucose tests which all came back negative, the thirst has changed a lot since cutting the gluten, I suffered 16 years of having to drink loads of water everyday and during the night, the theory of water being absorbed in small intestine makes me think that's what caused it. Would be good to hear of other people who had the same symptom and had it clear up upon going gluten free.

[across]

I haven't tried any pasta brands yet as I react strongly to corn and the ones I looked at had this in them.

 

I wonder for other people that had bladder symptoms pre celiac diagnosis how long they took to have full bladder recovery. I think one I read said that the bladder was last thing to totally heal up once gluten free.

I have interstitial cystitis which resolved completely with the elimination of gluten. But I was also doing the paleo autoimmune protocol, so I had eliminated many other things besides gluten at that point. It only took a few days for my pain and frequent need to urinate to disappear, if I recall correctly. If there's one thing I've learned through all of this, it's that everyone is different. 

 

UK 2004, if you are still having some symptoms, you might look into the paleo autoimmune protocol. It really helped me.

[UK2004]

I have interstitial cystitis which resolved completely with the elimination of gluten. But I was also doing the paleo autoimmune protocol, so I had eliminated many other things besides gluten at that point. It only took a few days for my pain and frequent need to urinate to disappear, if I recall correctly. If there's one thing I've learned through all of this, it's that everyone is different. 

 

UK 2004, if you are still having some symptoms, you might look into the paleo autoimmune protocol. It really helped me.

Thank you for posting that, it's very positive to hear. How bad was your intestitial cystitis before you went gluten free and followed paleo autoimmune protocol?

[across]

Thank you for posting that, it's very positive to hear. How bad was your intestitial cystitis before you went gluten free and followed paleo autoimmune protocol?

I was having to urinate around 15 times per day, and had continuous bladder pain at a level I would describe as moderate. I was also having trouble emptying my bladder completely, or at least it felt like that. I had been having symptoms of IC for about six years, but was just finally diagnosed last year.

[UK2004]

I was having to urinate around 15 times per day, and had continuous bladder pain at a level I would describe as moderate. I was also having trouble emptying my bladder completely, or at least it felt like that. I had been having symptoms of IC for about six years, but was just finally diagnosed last year.

Thank you for that, I'm down massively in frequency I just need the lingering pain to go away, fingers crossed! Glad yours went you must feel fantastic having it cleared up, I find my bladder issue more frustrating than any health thing I've dealt with throughout my life!