Attn newbies or anyone struggling....

[tex]

Ok Kilt,

I've looked the other way when you've repeatedly posted contrary to the treatments that we've found to be effective for treating MC. You appear to have come here not for support, but primarily to claim we're all dunces for changing our diets, and that's obviously counterproductive. It's OK to suggest budesonide in addition to diet changes, especially when someone can't get relief by diet changes. But when you persist in encouraging newbies to use budesonide instead of avoiding the foods that are perpetuating the inflammation, that's a definite disservice to new member, and it will not be tolerated here. I initially got the impression that you would be happier somewhere else, where dietary treatments for MC are not advocated, and it's time to admit that my initial impressions were accurate.

After you've been completely off budesonide for a few months and you're still eating anything you want without symptoms, we'll be happy to listen to your success story, because then it will have some merit. Email me when you've accomplished that. Your treatment plan definitely wouldn't work for most of us, and until you've met the test, your hopes and claims are based on speculation and there's no reason to believe that your treatment will work even for you. I hope it does, but time will tell. At any rate, wasting time arguing with you will provide no benefit for MC patients, and we don't have time for that, anyway. We already recommend budesonide for anyone who clearly needs it, so since most of your posts are counterproductive to our goals, and you obviously don't need or want our support, it's clear that we'll all be better off when you find a group that feels the same way as you (that diet changes are a waste of time). And we can get back to treating MC with dietary changes, the way we've always done.

Best of luck to you.

Tex

[JFR]

Hi Tex,

I read Kilt's post earlier and was distressed by it. I considered responding but you did a much better job than I would have done. His advice is not what people who come here need to here. You said what needed to be said.

Jean

[tex]

Hi Jean,

Thank you for sharing that. I appreciate it. I was afraid I would get nothing but negative responses. I hate to do things like that, but since I'm responsible for keeping some semblance of order here, sometimes it's my job to take care of unpleasant duties.

The main point here is, if the medical approach works, then why are we the only MC forum left standing? There used to be quite a few of them and of course none of them recommended major diet changes. They're all gone now. I tried to find some forums for him to consider, but I didn't have any luck. The closest to a forum seems to be David Chapman's Crohn'sforum.com, which has a subcategory for MC posts.

Tex

[KarenT]

Hi Tex,

Thank you for the feedback. And I'm sorry to be the catalyst that caused you to have to 'have a talk' with Kilt......

[tex]

Hi Karen,

Not a problem. That certainly wasn't your fault. The link he provided is probably a good source of budesonide, if you need it. The problem is, Kilt was becoming more and more aggressive not just with promoting budesonide, but disputing the benefits of controlling the disease by making diet changes.

Budesonide is good if you need it, but it doesn't work for everyone, and taking it is not without risk, not the least of which is an increased risk of developing potentially serious health issues such as diabetes, osteoporosis, adrenal fatigue, and other side effect risks, according to published research. The diet is risk free, so it should be the first line of treatment, with budesonide added if you need it until the diet changes can control the symptoms.

Please don't think that we're anti-budesonide. We're not averse to someone using it if they need it. We're just firm believers that it should be the second line of treatment, not the first.

Tex

[Janie]

Thanks Tex! Kilts posts were getting old and repetitive. I kept thinking what a "Debbie Downer." Stating what you are doing is one thing but to try and convince this forum that
it is the only way is not what the forum is about, at least not in my eyes.

[tex]

Thanks Janie,

I appreciate your opinion. You're right, when it comes to treating MC, all of us are always looking for any new way that will work. But most of us have already tried medications, and they didn't work out well for us. That's why we're here.

Tex

[4277]

Thank you, Gabes, your help is greatly appreciated. I not doing good, and I need to start over.

Blessings,
Rusty

[Gabes-Apg]

Rusty
sorry that you are struggling - take the time to read through the guidelines to recovery and posts below in the main message area where others are having issues/flares there might be some hints/suggestions that will help you

[dolson]

Loved your post, Gabes. This is not an easy disease and I like the way you stated MC with no sugar coating added. Not an easy disease to deal with and withstand. Excellent post. Dorothy

[Eugenia]

Is fatigue - to the point of being breathless part of the early journey?

[brandy]

Yes, fatigue was rough on me. Age 50 at diagnosis. Walking 12 miles per week b/f diagnosis.
There was about a 3 month period that I could not walk around the grocery store. I had to sit
on the senior citizen bench at the front of the grocery while the boyfriend walked around and picked up food.

Fatigue is a common symptom until you go into remission.

[tex]

As Brandy posted, fatigue is very common when MC is active. Probably most of us have gone through that. If by breathless you mean the inability to draw a deep breath, that's a marker of a chronic magnesium deficiency. Magnesium deficiency also causes almost constant fatigue and very poor endurance.

Here's a list of possible magnesium deficiency symptoms in a quote taken from my book on magnesium (most people won't have all of these symptoms, of course):

As Dr. Mark Sircus points out, a magnesium deficiency can cause any of the following symptoms

• abnormal heart rhythms
  agoraphobia
  angina
  an inability to control the bladder
  anxiety
  a peculiar sensation that one needs to take a deep breath but can't
  apprehensiveness
  back aches
  blurry vision that changes from day to day
  chest tightness
  constipation
  coronary spasms
  difficulty swallowing or a lump in the throat
  dry, itchy skin
  extreme hunger
  extreme thirst
  fatigue
  foot pain
  frequent or recurring skin, gum, bladder or vaginal yeast infections
  frequent urination
  hearing loss
  heart arrhythmias
  high blood pressure
  hyperactivity and restlessness with constant movement
  hyper-excitability
  insomnia
  irritability
  jaw joint dysfunction (TMJ)
  leg cramps
  loss of appetite
  menstrual cramps
  mitral valve prolapse
  muscle soreness
  muscle tension
  muscle twitches or spasms
  nausea
  neck pain
  noise sensitivity
  numbness
  nystagmus (rapid eye movements)
  osteoporosis
  palpitations
  panic attacks
  personality changes
  premenstrual irritability
  seizures
  sores or bruises that heal slowly
  tension headaches
  tingling
  twitches
  unexplained weight loss
  unusual tiredness or drowsiness
  urinary spasms
  vomiting
  weakness

It's interesting to note that the symptoms of severe magnesium deficiency are also common symptoms of diabetes or what's known as prediabetes. As we shall see later, this isn't merely a coincidence.

Magnesium is important to all forms of life. For example, chlorophyll, the substance that gives plants their green color, contains magnesium.

And taking an appropriate magnesium supplement can eliminate any of the symptoms on that list (if they are caused by a magnesium deficiency, rather than something else).

Tex

[CGK1998]

Where to begin? I am a 43 year old otherwise healthy female- but my whole life I have had gut issues. I had chronic tonsillitis growing up and stayed on antibiotics- and was a competitive athlete and frequently dealing with injuries- lots of NSAIDS.

I have had bouts of WD through my life, but it always came back under control. I figured I was just someone who had to go when they had to go.

In 2012, after a super stressful time at work that culminated in a job change, I became very ill. Fevers, bloody diarrhea, pain- I was diagnosed with ulcerative colitis that was throughout my colon. I went on the paleo autoimmune protocol as well as prednisone to get it under control, and was able to get into remission. I had both oral and rectal mesalamine as my maintenance drugs, and kept my diet clean.

Over time I started testing foods, feeling I was healed. I didn’t have any immediate reaction so figured I was okay. I started having watery d and my GI dr chalked it up to my old IBS diagnosis- I wasn’t bleeding and I wasn’t having the UC symptoms, just painless diarrhea.

The past 2 years have been really difficult with it- I have had repeated appointments with him to try to figure out a solution. A good day was 3-5 episodes of watery d, a bad one was 15-20. I was constantly thirsty and exhausted. I asked to try welchol as I thought it might be bile salt diarrhea, but it didn’t help. My colonoscopy 2 years ago showed mild inflammation in the rectum, and microscopic inflammation throughout that I was told didn’t mean anything.

I had not had a solid poo in YEARS- I finally got in with someone for a second opinion. He looked at my report from 2 years ago and that’s when I learned I had a NEW diagnosis that had just been going untreated. Hallelujah! He put me on budesonide 2 weeks ago and I have done great. Many of my symptoms feel more rectal in nature so I’m doing the rectal foam too. We are talking Friday about my step down plan and how to maintain remission. I have solid poos and need a good plan to not lose them!

This diet makes SO much sense to me and I’m getting back on it- all of my reintroduction experiments were failures and I can see that now. If nothing else I need to be gf and df, probably nightshade free.

I am so thankful for all of you and this amazing information! Tex, I loved your book. Looking forward to learning more and hopefully becoming one of your success stories. Thank you so much!

-Caroline

[brandy]

Caroline, We find longer is better on your step down plan particularly since you have struggled for years. Like 5-6-7 months
with the last month 1 pill every 4 days for example. I would also listen to your body regarding the plan.

Welcome, too!