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

Hi Pam, I'd love to hear how you're doing now, I am also on elmiron, and about to start chronditan instillation's--maybe I should go gluten-free...

Gillian your post caught my attention on here, I would love to be able to chat with you about your IC symptoms and diet in greater detail.

Hi, I just came across this site, I have endometerosis, IC,Celiacs and the worst: fibromyalgia!!! I cant sleep I'm always in pain and because I have all these issues I have horrible insurance and cant get the help I need to make myself feel better. I thought once I was diagnosed with celiacs and took the gluten out I would feel a lot better and truth is I don't. I just would love a day where I'm not in pain. I would love to hear from anyone on what works for them. Any advice I would greatly appreciate I'm only 30 I have a lot of life to live and I want to live it, but not like this. Thanks

I wanted to reply to you because I to started having symptoms of Interstitial Cystitis at thirty. After a few years of pain, I was finally given Elmiron, Visteril, and Elavil. I have been on them for about 3 years with a good response. Recently though I believe I am becoming gluten intolerant. If I eat a bagel I have severe bladder pain. I cannot eat anything with artificial sweeteners, aspartame or saccharin. Also no MSG. Also make sure the medications you take, even over the counter, are gluten-free. My heart goes out to you because no deserves to be in pain everyday. Hopes this helps, don't give up trying.

I have had issues for the last four years. It was first you may have IC, then a gastro told me I had IBS. Then back to uro to say yep you have it. I have been on Elmiron for awhile but have had hair loss lately so am looking for alternative options. I was going to try the hydrodistension procedure. My grandpa was Celiac but I tested for it awhile ago and it came back negative. I generally feel better when I avoid wheat and try to when I can. I don't know what dairy has to do with anything. Any thoughts?

I've had obvious problems for 10 years, and several years after diagnosis of chronic fatigue syndrome and vulvar pain syndrome, was diagnosed with IC. Took Elmiron and hydroxizine for 2 years, then quit the hydorxyzine. Never had bladder pain but the other pain that prevents marital relations never ended. Had horrible cankor sores and other symptoms...recently a doctor suggested I go gluten-free. The soy in gluten free products is what I think has been giving me tummy aches, which I didn't have before (except for bouts of bloating). So I'm about to go gluten/soy free.

It's a long story but the thing I want to share that may help is that I've learned from gluten free sites is that gluten sensitive folks often develop intolerances to other grains as well. The ideal thing to do would be to go on an extreme Elimination Diet, after which you add one grain or food type (like dairy) back into your diet at a time and see what happens. Apparently after cleaning out, sometimes your body can handle some of the foods you couldn't before. I personally can't figure out how to manage that and live my life too, so I'm just trying gluten-soy free, which is plenty hassle enough!

Also, I had been dairy limited for 20 years before any of this started, plus the IC diet...sometimes I want to cry because it's hard to find anything to eat. But I do think that after I'm better there will be some things I can eat again in small amounts. although perhaps not gluten.

One other thing for IC: find a wonderful psychiatrist (doctor of muscle-bone-nerve) - not a surgeon! - to check your pelvic alignment. Mine (a former female dancer) found a problem with my pelvis that was pinching my sciatica on one side, which would aggravate any nerve problems caused by IC. The physical therapy has improved that for me...all my pain was on the left side, same as the pelvic misalignment. Bodies are so complicated!

I used to have a terrible problem with recurrent cystitis. Three years ago I found out I have the DQ8 gene, and decided to go gluten free. I have not had a single episode of cystitis since then.

I was diagnosed with severe IC 10 years ago. In addition I also have IBS, Fibromyalgia and Chronic Fatigue. Within in the last couple years I lost 30 pounds, had problems with indigestion and the IC and other conditions worsened. My MD attributed it to the IBS.

Now my 35 year old son is experiencing peripheral neuropathy severe pain in his feet and fatigue and weight loss. He is on a quest to find out what is causing the pain and Celiacs Disease has been mentioned as a possibility. He will be having a biopsy this week.

My daughter-in-law forwarded me this site. We are anxious to find out the results on my son as it is possible we both have Celiacs and may finally get on the path to relief.

Connie

I am in the UK. Suffered from IC and prostate inflammation for years. No doctor or consultant would connect the auto-immune nature of things attacking my whole body system. Coeliac was tested for but always came back negative. So was told I could not have gluten problems. But blood testing for Coeliac can be wrong. I had a low secretory IgA and if you have that Coeliac screens are useless and give the wrong result.

I've had so many different symptoms affecting the whole immune system and yet still no one would connect these up. I have vitamin K malabsorption and lactose intolerance - still the medical community dismiss the connections. Surely the medics must look straight to gluten for IC and prostate problems.

Anyone in the same position in the UK

Im 24 yrs old and was diagnosed with I.c about 10 yrs ago, after a few bladder infections and then many trips to the doctors to run tests. I was also told that i had IBS ten yrs ago too. Not to mention ulcers. I seen a blood analyst and he told me to try taking Aloe Vera. So i did (It has to be freeze dried....a specific kind) The brand i used was called "Vitazan" although they no longer make it. Now i would have to order from Desert harvest and it is expensive for me. Any way i stopped taking it when vitazan stopped making it. Since then i have been living with horrible urgency and frequency. I wake up 3-6 x a night....and pee probably 15-22 x a day. Last year i had an allergy test and found i have MANY MANY allergies.....Gluten, mold, sugar in milk called lactabumin, chicken, rice, cocao...etc. Not to long after this i went back to my blood analyst who now works with a biofeedback machine. ..and I asked him to check my allergies and he gave me a list of the top 5. Mold was #1, Gluten/wheat was #2 and Sugar was #3. So since then i have found that sugar and gluten make my life hell. It increases the urgency and frequency....and gluten just plain hurts my stomach (gas/bloating) I am currently on Detrol ( a bladder antispasmodic), i daily take quercitan.....just started taking marshmallow root in pill form..and i am about to start taking Elmiron and getting bladder instillations of Dmso. If the first treatment goes well with the instillation...I will continue. I will also try Elmiron for 6 months and see what happens. If all else fails....I will have to cough up the $$$ and go back to ordering Alove Vera since i felt great when i took it and had no side affects.

I might also try glucosimine. Why not?

I also tried Gotu Kola..I think it made me worse...

Any ways...its nice to know I'm not alone in this.

Keep the FAITH...Don't give up!!!

Had my first instillation of DMSO, and it hurt like hell!!! It took 4 hours for the pain to lessen and burned really bad when i peed....which was the worst part. I applied Ice after and took ibuprofen. But next time i will take pain medication FIRST and ask my urologist to use anesthetic local freezing for the insertion of catheter. This happened yesterday. Today i am fine.

Also forgot to mention that alfalfa helps me a little bit with the gluten intolerance, and Cystoforce helps with gas for some reason along with alkanizing your urine.

I also switch off Detrol and onto Vesicare as detrol made my throat inflamed really bad and gave me a tight chest.

So currently on elmiron, vesicare, Dmso instillations, Marshmallow root to help coat the bladder, Quercitan for inflammation/allergies...and Percocet I will take before my next instillation!!!

Sea salt also helps with flare ups. 1 teaspoon with water. It works fast...but should be quality stuff not the dollarama stuff.

I have just seen a Homeopathic, and he thinks that the bladder/Stomach problems are due to E.Coli. He asked if I had ever been food poisoned....and I don't recall. However he showed me the symptoms and I had them! One of which is poor memory along with the digestive/urinary problems.

He made a mixture for me to take...with was combined of 5 different things. The one for E.Coli is called Collibaclinum.

(don't just take it...go and see a homeopath*)

I have just started taking it....and we will see how it goes. But if i have all the symptoms...it makes sense. There is a cause for cystitis/IBS.....and i am going to find out!!! I'm tired of treating symptoms!!~ The cause WILL be found.

Ps. someone told me that we all carry E. Coli in our bodies, but there is many strains of it. You can also get it from drinking contaminated water. I asked the homepathic guy why a doctor would never have found it....as my urine had been tested for bacteria? and he said that the bacteria is in my stomach....and then passes down to the bladder. If my stomach has never been tested than how would i know?...because that's where it originates from. So yea...... E.Coli should definitely be researched as a cause! It's worth checking.

I have had IC for about five years (diagnosed) but was a chronic bedwetter as a child too. Nothing really helped until a naturopath suggested trying gluten-free diet, and I went from crippled and unable to even wear high heels (too much jarring on the bladder) to being able to jump up and down again within a week. I still suffer from flare ups but I am a million times better in comparison.

Rescue remedy for flare ups: Gatorade (don't know why, but it works), Quercetin (or if you can't afford it, ginger TravelCalm tablets help too) and aloe vera drinks. Slippery elm seems to calm down burny bladder symptoms and Buscopan stops that nasty burny cramping...... good luck folks

Hi Laura,

You might have some luck also excluding all grain, starch, and sugar from your diet. "Breaking the Vicious Cycle" by Elaine Gottschall goes into further detail on the Selected Carbohydrate Diet or SCD. My dauther and I were diagnosed by Entero lab fecal test, (you can do this yourself by going to www.enterolab.com), and now after adjusting our kitchen, have much better vitality. Keep in mind that it is an elimination diet meant to narrow your sensitivity down. Doing it for the recommended 6 mos, will allow you to start at ground zero and add one thing at time to notice any reactions.

We went further and even eliminated all dairy. Now, two years later, we do some gee occasionally as well as rice. But will always maintain the gluten free.

Good Luck.

hey stacy-

I was diagnosed 2 years ago and feel like I am falling apart as well. You are not alone. I do feel that diet and IC have a strong connection. hang in there.

I have supposed wheat intolerance though I do believe my exclusion diet should be fully gluten-free. I've had blurry vision for 6 months whilst eating too much wheat (call it rebelling at the effort of excluding it). Plus for a year I've had at least 8 bouts of cystitis, half of which where given antibiotics from the doctor. This impinges on sexual relations between the cystitis and the Pill not working during tablet taking period.

I've got IBS, and have had symptoms of intolerance for 6 years. Fibromyalgia as a side effect and alcohol intolerance too. In fact often wheat intake makes me feel spaced out and 'drunk'.

The blurriness, cycstitis is less prevalent when detoxing off gluten. That takes 2-4 weeks to feel fully wonderful.

Gluten free is expensive. Another thing, has anyone noticed the gluten free is quite fattening and sugar laden compared to gluten based counterparts? I'd put on weight replacing items.

Now I'm only buying gluten free bread, and going without some other things. Intolerance makes tummy distend like a 5 month pregnant mother. And I've put on two stone (which I usually loose when I omit gluten). I have a high metabolism normally and fail to keep weight on.

Frustrating.

The bacteria that causes cystitis, is often from outside the urethra and goes up. It synthesizes folic acid to strengthen itself to make bacteria more prevalent and stronger. Antibiotics to defeat cystitis cause the bacteria to not ab able to use folic acid and they die. Like a buffer.

I've found gluten intol causes all mucus in my body to dry out. Mouth, eyes, skin, and yes 'down there'. If you are drier down there, the ph balance and lack of certain natural acids allows any old bacteria to go up there and manifest.

Gluten intol dehydrates me. Best thing I find, detox thoroughly, drinks loads, and for sexual relations use 'lube' as dryness aggravates it. The ecoli gets into your urethra from your anus. I also believe gluten intol etc lowers you're immune system to prevent us ladies and some men from fighting cystitis properly.

There are cross-reactions between gluten and other foods like coffee and non-gluten grains.

I can confirm I have bladder burning/intense pain and I've been Celiac for years...

Hi Jana,

I wondered if you are doing any better a year later? Sometimes it takes awhile to heal from celiac disease. Let us know how you are doing.

Wendy (the article author)

Laura, Simply going off gluten does not always solve the autoimmune tendency. You may have multiple food sensitivities that haven't been tested. There are several foods that are cross reactive with gluten, i.e. the immune system sees these foods as so similar to gluten that it reacts to them the same way. Therefore if you don't get off these foods at the same time you will not resolve your symptoms. Milk products are one of the most common cross reactive foods.

Thanks to all of you for taking the time to help others with your experiences and personal insights.

All the best to us all!

Hi Jana - I just saw your comment, a year after you wrote it, and I sympathize - I was diagnosed with celiac 10 years ago, and severe endometerosis 3 years ago (for which I had surgery) and IC, 2 years ago , luckily no fibromyalgia as far as I know. The endometerosis was in my bladder as well - The gluten free diet certainly helped me with the celiac symptoms and changed my life - I am finding IC diet hard to figure out and I can't tell what sets it off. I am currently 17 weeks pregnant and the IC has flared along with chronic constipation which makes it worse - so I am working on more getting more fiber into my diet. Given my IC flared up badly after 8 years of me maintaining a 100% gluten free diet, I don't feel Gluten was the culprit for me and IC; but it seems everyone is different with IC. I am determined to try to get my IC under control before my baby is born!!

I wondered if any other Celiac/ IC sufferers had been on long term antibiotics as children? I was on Antibiotics for two years as a teenager and anti-histiamines and I am sure that mucked up my system.

Thanks so much for this book. I have IC, migraines, body aches, depression, exhaustion, ulcerative colitis, etc. I was suffering everyday and this had been going on for eight years. Well I had those things. No one was ever able to put the pieces of all of these things together. Finally I ran across the idea that it could be gluten, food allergies or food sensitivities on the IC network. I am so happy I found your book. I gave up gluten, dairy and followed many of the suggestions in your well-written book. I am already feeling so much better and it has only been three weeks. The frequency is gone and so are the migraines. It feels like a miracle. I was at the point where I couldn't tolerate the symptoms any longer, so I am still in disbelief that the solution was so simple. I just recently went to a new urologist who suggested to me that it would be too hard to try this diet and that it wouldn't likely help. Some in the medical profession still have so much to learn. This diet is such an easy solution to my symptoms and I am so grateful for it. Thanks again for your help and advice. The money I paid for your book was the best I've ever spent.

Jana - don't know if you will receive this since your post was some time ago. I am almost identical to you and I am starting the Acid Akaline Diet right after my hydrodistension on Tuesday. I am writing a blog to track all the progress by making these changes. Contact me if you would like some feedback.