Interstitial Cystitis And Tourettes

[NonHuman]

NOTE: I do not have Celiac Disease, I just have an allergy.

I have Interstitial Cystitis and have diagnosed myself with Tourettes Syndrome (I realize that self diagnosis is faulty, but I think I can safely say that I have it.. it's a pretty obvious problem ). Has anyone experienced these problems? Has anyone seen a direct correlation between them and gluten?

I was on a natural supplements regime for about a year that more or less CURED my IC, however I still occasionally have flare ups... I stopped following the regime for a year or so and it got a little worse, but not too bad. However, when I stopped ingesting gluten, the IC cleared up again (as before, not completely, but mostly) and I flare up when I consume gluten.

As for the Tourettes, my ticks get soooo much worse when I eat gluten! They never really go away, they just follow their cycles of intensity. However, if I am in a low intensity period, if I eat a significant amount of gluten, it just sparks right back up again.

The Tourettes began when I was about 8, and the IC began when I was about 15. I did not find out I had a gluten allergy until I was almost 20 and had been suffering with the more common symptoms since I was 16/17. Unsurprisingly, it was not a western medicine doctor. All of those told me it was in my head, or possibly ovarian cancer (I also had cysts on my ovaries because they would not close back up after I ovulated -guess when they finally started healing properly again )

BTW if you have TICKS/TOURETTES ask your psychiatrist about Abilify. That is the ONLY thing that has ever helped, and it helped ridiculously well. There is a huge catch though: you are tired beyond all reason. The first day or so you take it, you can barely stand up. After that, you get kinda used to it and have a little bit more energy, but not much. You're just zonked all day until bedtime when you finally wake up, and then you CAN'T sleep. I found the most effective way to take it was at about 5pm, and Id be asleep by 8pm at the latest. The more energy you can build up the better. Of course, the smaller the dose, the more awake you'll be...but it also helps less.

If you have INTERSTITIAL CYSTITIS I will hook you up with the link to the site where I purchased my supplements. It's an actual compilation package made specifically for IC sufferers. I tried to post about it on IC forums before but they thought I was a scammer. If you aren't interested in spending a pretty penny on supplements, at least get yourself some cod liver oil capsules. Cod liver oil is a God-send for IC. Not fish oil! Cod liver oil only!

[Skylark]

My brother has tics. He finds they get worse when he eats refined sugar or caffeine.

[domesticactivist]

I know this is old but I'd love to know more about the Tourette's. My 11 year old daughter has it. Yesterday she developed a new motor tic that actually hurts her (usually they are just annoying). We were hoping that the gluten free diet might help with tics. She took this as a sign that it's not working.

She just started the gluten free diet about a week ago because we were keeping her on gluten for the celiac blood tests (which were negative). We are still waiting on other test results (genetic screening for Celiac Disease) and Turner's Syndrome. The worsening tics could be just the way it is (she gets changing/new tics regularly) or maybe it's part of the gluten withdrawl?

Did your tics get worse before they got better when you started the diet?

[eatmeat4good]

Wow, this is interesting.

Interstitial Cystitis has been a problem for most of my life.

Not one episode since gluten free.

I was wondering if there was a connection.

I had been on antibiotics for years.

The strange thing is that when they cultured my urine there was no bacteria. Just the pain.

I wonder and believe now that it is gluten related.

Regarding Tourettes-

That is a very interesting connection too.

What if the tics are a neurological manifestation of Celiac/Gluten Intolerance?

I was very very ill before I found out I had Celiac.

In the last stages I had 299 of the 300 symtoms of Celiac (no constipation) (slight exaggeration for humor)

I developed involuntary blinking, and tics of the shoulder and head along with severe uncoordination including falling frequently and having to think about each step.

It is all gone now that I am gluten free.

I hope your child gets relief from tics on the gluten free diet. It took about 6 weeks for all to diappear.

[domesticactivist]

I just saw this now! Thanks for your well-wishes. Kodiak's tics are not all gone, but they are much better. Lately she's just had a little whistling one. I don't think gluten is the full picture for her. They got much better when fruit and cheese were both out of her diet (GAPS Intro) but have come back since. Even at their best, they still returned when she watched tv or gets really upset. Diet is clearly a part of things. We'll see how things evolve!