Wendy Cohan, RN's Gluten-Free and Dairy-Free Cooking Classes

Try sugar and gluten; gluten by itself didn't work for me

My 8 year old daughter has just recently been diagnosed with celiac disease. She also has constant bladder problems. I at first thought that the bladder problems were related to the kidney surgery that she had when she was two. I recently have been diagnosed with IC and I am wondering if perhaps this is what is causing her bladder problems. My mother and maternal grandfather had celiac disease, my sister has had severe endometrosis, my other sister has Hashimoto's disease. I am currently being tested for Hashimoto's disease (hypothyroidism). It would seem that a lot of these conditions are autoimmune related. Now I am questioning whether there is a connection between the thyroid and IC and celiac disease. If anyone has any information on these connections I would greatly appreciate hearing about them.

I have had interstitial cystitis for four years. I can pretty much keep my symptoms away by following a strictly gluten-free diet. Going gluten-free has also helped with chronic acid reflux, eczema, and severe adult acne. I can not explain the correlation between gluten and IC, but after reading theses posts, there must be a biological connection.

One more thing, avoiding gluten is the hardest thing I have ever done. I love bread, cookies, cake, pizza, and pasta. From time to time, I will give in to a craving. I always, and I mean always, will pay for the mistake with a bladder flare up.

Your story is so similar to mine. I am 35 years old and this has been recurring for me since my early 20s. Since childhood, I have had reoccurring UTIs. They started again around age 21 with a vengeance. Since my early 30s, I have had what I thought were severe UTI's that come on all of a sudden and send me to urgent care, only to get a call from my primary doctor a few days later telling me the lab culture shows there is no bacteria - yet I am in PAIN!!! It is so painful I sit in the bathroom sometimes for hours because if the urgency, burning and trickling of urine. My urethra and bladder burn like pins and needles and there is an ache in my bladder also. I have wheat intolerance and upon genetic testing in 2011, I have one celiac gene HLA-DQ2. I am waiting for a referral to a urologist to see what is going on. I have been gluten-free since May 2008, but these flare ups happen 3-4 times a year for me.

Did you also suffer from thyroid disease?

Hi I'm from Western Australia. I was diagnosed in 2008 with interstitial cystitis. I have had some small outbreaks, but nothing like now. It's gotten quite bad. I was reading your comments and saw you found a website in Australia. Please can you let me know what it is? Thank you.

Hi I'm from Western Australia. I've got interstitial cystitis. I'm looking for info about avoiding dairy products. Have you heard what the website in Australia is? Thank you.

I recently suffered from symptoms of IC for over a month. Instead of taking medication, I decided to give up sugar for a week. It finally and completely disappeared! Give it a try. The only thing you have to lose is maybe a little weight.

For the past two years I have been in excruciating pain with both interstitial cystitis and vulvodynia. I had to go to the bathroom around 30 times a day, and it felt like I had a constant UTI. Also, I suffered from extreme vulvar burning. Right around the time these symptoms began, I also started having horrible acid reflux after many meals. In particular if I drank a beer, my acid reflux would instantly flare, and my bladder symptoms would worsen within the hour.

I was never tested for celiac, and after seeing countless medical doctors, gynocologists, and specialists many of them said they couldn't help me because there is no infection.

After seeing a highly recommended chiropractor who is also a nutrition specialist and accupunturist as a last resort I had almost lost hope. He told me to go gluten free as well as dairy free. Slowly but steadily I began feeling much better. I noticed results about three weeks after I began the diet, but it's been two months and I feel 90% cured!!! Thank you, God! My chiropractor said it should take many months for all of the gluten to leave my system, and even longer for my bladder to fully recover. I know I will be 100% well in the next year or so. Pelvic floor physical therapy has helped me as well, and now that the gluten is eliminated I expect that to be even more beneficial.

Good luck to everyone who is sick! It believe there is a cure for anything as long as you do your research and are disciplined. Life gets better!

Dear Laura, This reply comes six years after you posted your comment, but I have only just seen it. I hope things have improved now re your IC, but if not I suggest getting off ALL cereal grains, including those labelled 'gluten free' as in my experience some people are sensitive to the proteins in these other grains too, not simply the wheat, rye and barley +/- oats sort. Corn/maize is very much in the frame, but so is rice, sorghum, buckwheat, quinoa and chia. They are all grass or grass-like seeds, and their proteins are very irritation to most humans, effecting one organ/tissue or another. Ditch the lot for at least six months, and see how you fare. Good luck.

To Anyone who can answer,

My question is this...Do you have to eliminate gluten (or dairy) 100% to feel a difference if you are gluten(or dairy) intolerant (I know you do for celiac) An example would be a piece of lasagna once in a while or some salad dressing or something small and occasional. Do you have to start over at that point or can you still get results with a 95% gluten free diet? I'm trying very hard to be good but I don't want to feel guilty over something small once in a while.

I was diagnosed 6 years ago with unexplained small fiber neuropathy. Around that time I also developed chronic headaches, joint pain, many tummy troubles including constipation, and for the past year and a half I have had IC . I've also had endometriosis since I was 16( I am now 41). I've been tested for many things but all my blood work and tests have been normal. Any thoughts would be much appreciated.

This is such an informative discussion! I was just wondering if there were other IC patients who drink coffee like me. Guess so.

***

I have IC and my paternal aunt has celiac, for which I'm waiting on gene test results. I am pretty sure my dad may have celiac, he is almost always sick or moody or anxious. I've been gluten free for 4+ years and though it hasn't healed my IC, it improved the symptoms of fibromyalgia, mood swings and anxiety I was experiencing. I also eliminated dairy about a year ago, with some slips here and there. I still drink coffee--I do find that without it I have flares, but maybe not as much, but I don't want to give it up. I dilute it a lot and that seems to help, or stick to a decaf espresso in the a.m.

The link between gluten sensitivity or celiac and IC is plain as day for me. Unfortunately, I get the Fibro symptoms too, but haven't been officially diagnosed. I cannot wait to get my gene test results back, and the results of my biopsy which they said might possibly have mild villous blunting, even after four years free of gluten.

I am a staunch advocate for celiac and NCGS awareness, I would love to see more research on the connection between it and IC. IC is awful. I treat mine with a half tab of vicodin sometimes or MM, which is controversial, but the distillations don't have any heartening draw for me and sound awful, so do other pharmaceuticals. When it gets bad, I take hot showers, use an ice pack, and knock myself out (if I can). I drink a ton of water, but make sure to supplement with a banana or coconut water, due to the loss of potassium that can result from hyper loading on water. I had to go to the ER once after a very acidic coffee sent me into the worst flare I've ever had. Even the morphine didn't cut into it immediately. Since that time, I make sure I am always on top of the tiniest flare.

The other thing I was diagnosed with is Pelvic Floor Tension Myalgia, so I make sure to stretch many times a week. It helps. I also do a lot of high-octane tabata workouts, which likely causes the flares to exacerbate, but hell if I'm going to be out of shape and in pain.

So bottom line, these are the resources you will likely need:

A doctor who can prescribe proper emergency pain medicine/MM card if you're brave (I am learning more about oils, the raw plant and edibles, check out the IC-Network for articles it's SO important to have proper pain management)

Get all the tests you can (I got diagnosed through a bladder distension and symptoms, after I was prescribed an insane amount of antibiotics over the course of many years)

If your insurance won't approve a test, look up the current research (Mayo Clinic/University of Chicago) and file a grievance. This has worked for me twice now, but am still waiting on proper integration of all of my diagnosis and a more formal pain management protocol

Stress reduction routines, such as yoga, somatic meditation, gentle walking, writing or talk therapy to deal with the chronic pain/systematic stresses

Dairy and gluten free diet, low to no sugar (I know, bummer. I struggle with this)

Eat whole foods, very little processed if you can, I am much better when I eat this way predominately

Unfortunately, I can't eat out, except farmer's markets for fresh fruit and produce and dedicated celiac facilities, but it's just not worth the pain of getting sick. I have no idea how I will travel. I make all of my food at home in my own kitchen. My roommate is not gluten-free, but my partner is so that helps, although I know I likely flare up from my roommates cooking crumbs and traces

I work part-time, can't do as much stress as normal people. I accept this and anyone who fights me on it can suck it, I've had to accept it over the years. I still do too much, and could learn from lowering my anxiety.

Riding a bicycle can flare me up, same with intense hiking and running. I stick with short tabata workouts (12 min/3x a week) and gentle walking/yoga

Sex also causes flareups a lot of the time but that doesn't stop me. I just vocalize my needs and stop if it hurts. And get creative.

It's all interconnected, it's crazy we only diagnose one body system at a time and have to hunt so hard for answers.

I have IC and my aunt has celiac, for which I'm waiting on gene test results. I've been gluten free for 4+ years and though it hasn't healed my IC, it improved the symptoms of fibromyalgia, mood swings and anxiety I was experiencing. I also eliminated dairy about a year ago, with some slips here and there. I still drink coffee--I do find that without it I have flares, but maybe not as much, but I don't want to give it up. I dilute it a lot and that seems to help, or stick to a decaf espresso in the a.m.

The link between gluten sensitivity or Celiac and IC is plain as day for me. Unfortunately, I get the Fibro symptoms too, but haven't been officially diagnosed. I cannot wait to get my gene test results back, and the results of my biopsy which they said might possibly have mild villous blunting, even after four years free of gluten.

I am a staunch advocate for Celiac and NCGS awareness, I would love to see more research on the connection between it and IC. IC is awful. I treat mine with a half tab of vicodin sometimes or MM, which is controversial, but the distillations don't have any heartening draw for me and sound awful, so do other pharmaceuticals. When it gets bad, I take hot showers, use an ice pack, and knock myself out (if I can). I drink a ton of water, but make sure to supplement with a banana or coconut water, due to the loss of potassium that can result from hyper loading on water. I had to go to the ER once after a very acidic coffee sent me into the worst flare I've ever had. Even the morphine didn't cut into it immediately. Since that time, I make sure I am always on top of the tiniest flare.

The other thing I was diagnosed with is Pelvic Floor Tension Myalgia, so I make sure to stretch many times a week. It helps. I also do a lot of high-octane tabata workouts, which likely causes the flares to exacerbate, but hell if I'm going to be out of shape and in pain.

So bottom line, these are the resources you will likely need:

A doctor who can prescribe proper emergency pain medicine/MM card if you're brave (I am learning more about oils, the raw plant and edibles, check out the IC-Network for articles it's SO important to have proper pain management)

Get all the tests you can (I got diagnosed through a bladder distension and symptoms, after I was prescribed an insane amount of antibiotics over the course of many years)

If your insurance won't approve a test, look up the current research (Mayo Clinic/University of Chicago) and file a grievance. This has worked for me twice now, but am still waiting on proper integration of all of my diagnosis and a more formal pain management protocol

Stress reduction routines, such as yoga, somatic meditation, gentle walking, writing or talk therapy to deal with the chronic pain/systematic stresses

Dairy and gluten free diet, low to no sugar (I know, bummer. I struggle with this)

Eat whole foods, very little processed if you can, I am much better when I eat this way predominately

Unfortunately, I can't eat out, except farmer's markets for fresh fruit and produce and dedicated celiac facilities, but it's just not worth the pain of getting sick. I have no idea how I will travel. I make all of my food at home in my own kitchen. My roommate is not gluten-free, but my partner is so that helps, although I know I likely flare up from my roommates cooking crumbs and traces

I work part-time, can't do as much stress as normal people. I accept this and anyone who fights me on it can suck it, I've had to accept it over the years. I still do too much, and could learn from lowering my anxiety.

Riding a bicycle can flare me up, same with intense hiking and running. I stick with short tabata workouts (12 min/3x a week) and gentle walking/yoga

Sex also causes flareups a lot of the time but that doesn't stop me. I just vocalize my needs and stop if it hurts. And get creative.

It's all interconnected, it's crazy we only diagnose one body system at a time and have to hunt so hard for answers.

Personally, I got tired of trying so many different things against Interstitial cystitis. I was lost, nothing seemed to help. That was until someone recommended me to use PeaPlex. I have read different reviews on the effect of PeaPlex, some very positive, some less. But for me personally, it really gives relieve. I would very much recommend it.