IC Disease

It is common for Interstitial Cystitis patients to also suffer from Irritable Bowel Syndrome so when I found this post on a wheat-free diet I was hopeful.  The reviews by women who have taken all wheat products out of their diet are having amazing results:  their IBS has improved and their symptoms have been eliminated. 

What really caught my attention from reading Anne’s story was that she suffered from chronic headaches, which is something that I suffer from and can’t seem to get rid of.  Once she eliminated wheat from her diet she no longer had headaches.  I admit that I am a little afraid to go wheat free because I am a bread eater and I love to eat wheat products, but if it helped these women maybe it will help me, too.

Here’s what both IBS sufferers had to say about their symptoms and their wheat-free diet experiences:

I have had trouble with chronic diarrhea and trouble gaining weight all my life, as well as headaches. (Well, the trouble gaining weight went away as I aged.) I even had trouble gaining weight when pregnant. I also had skin problems (rosacea, for one), energy highs and lows and low blood sugar. Also, lactose intolerance. Keep in mind that I am a health nut eating good, wholesome foods with lots of fiber, taking supplements and I am physically active.

As I entered my 50s I started having problems with what seemed to be rheumatoid arthritis (symmetrical pain in my hands and feet) and then leg cramps, but I tested negative for rheumatoid arthritis. My doctor really was little help. This summer my cousin told me she tested positive for celiac disease and that since it is hereditary I should look up the symptoms on the NIH website. (I had been told by my dermatologist that I should get tested as well.) I put off looking at the symptoms (not wanting to imagine avoiding gluten) and boy was I surprised to see all of my symptoms listed, including the symmetrical pains in my hands and feet, leg cramps and inability to gain weight in pregnancy.

Although I tested negative for celiac I went on a gluten-free diet anyway. What a difference! Normal bowel movements every single day, all the pain is gone, my energy level is consistent and I feel great. There are so many great gluten-free products in my grocery store that it is just a minor inconvenience, but well worth it. After six weeks I tried a bagel to see what response I would get and it wasn’t pretty. It has been about three months now and I feel wonderful. I have also noticed my waist has returned after disappearing when I turned 50.

Here is Louise’s story:

I have had bowel problems over many years. I suffer with a prolapsed bowel and general digestive problems (bloating, gas and constipation). My doctor has said that any bowel problem that is irregular is IBS. He does not believe that food intolerances exist and when I asked if I should try a wheat-free diet he said it was up to me. He advised high fiber but that makes my stomach swell.
I’ve been on a wheat-free diet for three weeks now and my muscle pains have reduced, my extremely bad headaches have gone and my tummy feels better. A few days ago I gave myself a day off and ate anything! I woke in the early hours with what I can only describe as a migraine which lasted all day and severe tiredness. Could this have been down to the wheat in the food I ate? Who knows, but I’m not willing to take that risk again.

You can read more great wheat-free diet reviews on the Irritable Bowel Syndrome Treatment website.

I have made a new online friend who runs a couple of great websites for Irritable Bowel Syndrome.  She is actually doing a guest blogger post on my Fighting Fatigue website that will be available on Friday morning.

Sophie Lee has the IBS Tales website, IBS Tales blog, and the IBS Treatment website. 

On the IBS Treatment site, Sophie lists different treatment methods that people can use to help with their IBS symptoms.  Since there is not a cure for IBS, the only thing physicians and patients can do is to try and manage the symptoms.

Different treatment methods available include (with links to Sophie’s site):

• Supplements
• Diet regimes
• Other therapies
• Medications

Irritable Bowel Syndrome is a common disorder that is seen among people who have Interstitial Cystitis, ME/CFS & Fibromyalgia.  For some their IBS is manageable while for others it can be completely devastating and life altering.  I have IBS and over the past several years my symptoms have gradually become worse.  Eating out in restaurants becomes a nightmare for me.  There is something about restaurant food that causes my IBS to react severely.  I have had several close calls where I didn’t think I was going to make it to the bathroom.  The pains I get in my stomach I have often compared to labor pains they can be that severe.  When going out, I can never fully enjoy myself because in the back of my mind I’m always wondering if IBS symptoms are going to hit and that I’m going to be in severe pain.

IBS is considered a bowel disorder that accounts for anywhere from 20% - 40% of visits to gastroenterologists.  The cause is unknown and there is no cure.  Like other chronic illnesses of unknown origin, IBS can be very unpredictable.  One time an IBS patient may suffer from constant diarrhea while the next time their main symptom may be constipation.  Pain levels among patients, as well as triggers, will vary.

Research has shown that approximately two-thirds of IBS patients have abnormally low thresholds for experiencing pain in their bowels. Research has also shown that the muscles of the intestines are over-reactive in many IBS patients, contracting excessively in response to stimuli like food, stress, and pressure. This is the likely cause of the crampy bowel discomfort many IBS patients feel after meals and under stress.

To diagnose IBS, the Rome III Diagnostic Criteria is used by physicians.  This is a a system for diagnosing functional gastrointestinal disorders based on symptoms.

Recurrent abdominal pain or discomfort** at least 3 days per month in the last 3 months associated with 2 or more of the following:

1. Improvement with defecation
2. Onset associated with a change in frequency of stool
3. Onset associated with a change in form (appearance) of stool

* Criteria fulfilled for the last 3 months with symptom onset at least 6 months prior to diagnosis.
** “Discomfort” means an uncomfortable sensation not described as pain.

Other symptoms that are not essential but support the diagnosis of IBS:

* Abnormal stool frequency (greater than 3 bowel movements/day or less than 3 bowel movements/week);
* Abnormal stool form (lumpy/hard or loose/watery stool);
* Abnormal stool passage (straining, urgency, or feeling of incomplete bowel movement);
* Passage of mucus;
* Bloating or feeling of abdominal distension.

If you talk to someone with Interstitial Cystitis, you will probably find that the patient has more than one chronic condition going on.  They don’t have just IC Disease.  I was diagnosed first with ME/CFS (Chronic Fatigue Syndrome - ME/CFS is the new name) 18 years ago; later it was an IBS (Irritable Bowel Syndrome) diagnosis; about 14 years later I was diagnosed with both Fibromyalgia and the next month with Interstitial Cystitis.  My urologist told me that approximately 25% of his IC patients also have Fibromyalgia.

There are five illnesses that are related to Interstitial Cystitis and are commonly found in IC patients.  How many illnesses/conditions the IC patient has is an individual thing.  No two people are alike with IC Disease.  The five common illnesses/conditions related to IC include:

• ME/CFS (Chronic Fatigue Syndrome)
• Fibromyalgia (FM)
• Irritable Bowel Syndrome (IBS)
• Endometriosis
• Lupus

Again, I am going to do another series and I will break down the related illnesses one by one starting tomorrow.