May I introduce myself?

[d'libarian]

My name is Linda and my little shih tzu now knows what to do when I holler “Out’a my way dawg!”

I have a super-hyper immune system which has spent my entire life busily seeing what mischief it can get into. It has gifted me with CC, dx’ed last month. In the past it has also gifted me with hypothyroidism, vitiligo , alopecia and psoriasis. I have plenty of IgE type allergies and get 2 or 4 allergy shots alternating weekly for just some (40) of them. My worst allergy is to work. No shots for that. During the allergy tests I also had multiple IgG positives. I lived my entire reproductive years with migraines averaging 3 days out of 5 and am a recovering NSAID abuser. Speaking of which, I am now sensitive to them. My GI talked me into trying Asacol but I could only stand it for a week and a half and had to give it up. Blaring in my ears, really bad C, and what felt like the mother of all fibromyalgia flares (did I mention I have fibro?). I won’t try Pepto – “salicylate” is in its chemical name. I can’t take the entocort right now because my endocrinologist and I are trying to adjust my thyroid meds and steroids in any form can mess up the process. During a colonoscopy they also found ischemic colitis but it was already starting to heal and they suspect it was caused by thyroid overmedication. Numerous biopsies were done and CC was found in all of them.

I suspect I’ve had food sensitivities all my life. I’ve recently learned that normal for me is considered C by the MDs. Except for an occasional bout of D for a couple days a year, I lived with C. Till this past spring when things got real interesting. I think a combination of ischemic colitis and stress got the D going till the Asacol got me back to C. I wonder how many people there are who have CC that expresses itself as C instead of D and are not diagnosed. D is much more motivating than C.

Because of allergies, I‘ve, by trial and error, eliminated fresh fruits and vegies, teas, crab, and MSG/aspartame/free glutamate in any form. After reading on this board, I’m going to go GF – but not till the homemade peanutbutteroatmealchocolatechip cookies and fruitcakes are gone! My ELH (Ever Lovin’ Husband), who is the MWMINTU (most wonderful man in the universe), has agreed to go GF with me. Which is probably a good thing because he has the symptoms of food sensitivities, too.

Has anyone noticed that sensitivities, fibro, and hypothyroidism have a lot of the same symptoms? (Rhetorical question)

le

[Deb]

little shih tzu now knows what to do when I holler “Out’a my way dawg!”

Hi Linda and welcome.
I think I've had food sensitivities most of my life but it was always with C so it went unnoticed until the D came and consequently the LC diagnosis. I, too, dealt with migraines for years. They did finally go away, some hormonal response, I suspect. I had years of ibuprofen use with the headaches. I've also had eczema, endometriosis, lots of achiness and am currently treating hypothyroidism. Stress definitely impacts D for me.
You've found the best source of information available to help you deal with this. Tex, our forum admin here, has a great book detailing what has been learned. There's a link for it at the top right of this page. Good luck and good health to you. Deb

[CathyMe.]

Welcome Linda,
Boy, do I know what you mean about the dog getting in the way!! You sound as though you've had alot going on! What you'll find on this board is that most of us have had to make major changes in our diet in order to allow our gut to heal. I am GF/DF and soy free. I think that there are few here that have C as their main symptom. I was diagnosed in February and was having 13-20 episodes of WD daily and yes, that tends to be quite motivating to get help for, LOL!!

I also have hormone issues, although not my thyroid, rather pituitary gland. I was able to stay on entocort even when adjusting my hormones with my endocrinologist. I can tell you that Entorcort stays mostly in the gut, unlike other steroids, such as Prednisone.

There is hope with diet change. I am now completely off all meds(this is my 2nd week). Have decided recently to go towards more of a Paleo diet and just got a meal plan from a great nutritionist to help me. I am feeling really good right now and enjoying this warm (60's) weather that we are experiencing in Maine!! NO SNOW is a big benefit for me, even though I'm a skiier. Keep in touch and ask tons of questions as these folks are very knowledgeable!

[Leah]

Welcome Linda.
You are pretty funny :) - especially since you have so much going on.
I know that there is a small percentage of people here that have C, but most of us suffer from D. If C is your main symptom, then Entocort probably isn't what you need anyway.
Everyone here will probably tell you that you have to overhaul your diet. It sounds like gluten should have been out 30 years ago! it can cause so much damage to someone who is reactive. It is so inflammatory. When it comes to food, the basics are: THE TOP FOUR INFLAMMATORY FOODS ARE : GLUTEN, DAIRY, SOY, EGGS.
Then there are IRRITANTS that should be avoided when you are in the healing stage. They are too hard on a gut that is already inflamed. They are BEANS, TOMATOES, SALAD, RAW FRUITS AND VEGGIES, and for some of us, COFFEE AND BLACK TEA. We are all different and our sensitivities vary. I took it all out but eggs while healing -then "tested" things back in when I started to feel better. That basically leaves you proteins and cooked veggies. I also ate rice, corn products ( like tortillas). Canned peaches and applesauce were my fruit. It was tough going, but I healed fairly quickly with the help of Entocort. Many of the irritants are back in my diet and I do well with them.
Keep us posted and ask any question
Leah

[wmonique2]

Hi Linda,

Since I live in GA but I'm French I say Bonjour y'all!


Well, you found the right forum. I was deadly sick when I found them. They helped me get over a very nasty flare up that lasted months. Lucky you that you have your ELH by your side. You have a donkey load of problems but with him by your side and this forum, you'll get better.

Like you I can't have too much fiber. Fiber is my enemy (insoluble). I stick to soluble fiber. I peel my zucchinis and potatoes for instance. No brown rice, white only. I have started juicing so that I get my nutrients without the fiber. My morning routine is 2 apples, 1 pear, 3 carrots in a juicer. If you need the brand of a juicer that doesn't cost the proverbial arm-an-leg (someone did the research here and saved me a bunch of work and money), fire off an email.

Get acquainted with Tex, he's the best ever. He really, really is an amazing source of information and support. And go GF ASAP because those peanutbutteroatmealchocolatechips cookies (I like this kind of writing, no spaces, and it challenges the mind) :-) aren't worth the price you pay in the short and long run.

Welcome!

Monique

[tex]

Hi again, Linda,

I agree with what everyone else has posted here, and they've done a good job of summing up what most of us have found to be true.

Has anyone noticed that sensitivities, fibro, and hypothyroidism have a lot of the same symptoms? (Rhetorical question)

That's because (according to my theory) they are all caused by the same basic mechanism (as are all so-called autoimmune diseases), and our genes determine which ones develop, after the inflammatory process begins. I refer to them as "so-called", because it appears that in many/most cases, they can be prevented by the timely removal of all food sensitivities from the diet, prior to their development, or at least prior to their maturity.

IOW, (and this is strictly my opinion), if a disease or a category of diseases can be prevented by removing an exogenous agent from the diet, then how can they be defined as "autoimmune", since the definition of "autoimmune" requires a self-sustaining reaction due to an endogenous trigger? It turns out that when addressed in a timely manner, these so-called "autoimmune" reactions cannot be sustained, when the external antigens are removed from the diet. When the reactions are allowed to continue indefinitely, though, much of the damage eventually becomes irreversible. In those cases, diet intervention can prevent additional future damage, but it can't always undo prior damage, especially damage done by RA.

We have found by experience, for example, that after we control our MC symptoms (using diet changes to eliminate the foods to which we are sensitive), most of our other "autoimmune" issues either become less of a problem, or disappear altogether, in some cases. This also appears to significantly decrease our chances of developing any additional "autoimmune" diseases in the future.

Tex

[d'libarian]

Thank you, ladies and Tex, for the warm encouragement.

Let me clarify that, till the last couple years, I have never felt I had so much to deal with (and my essay above doesn’t cover all of it). Things built gradually through the decades, giving me plenty of time to adapt, find what helped and what didn’t. I developed some quite effective coping skills: keeping a sense of humor is an important one.

The last two years have challenged me with the growing stress of seeing my 85 yr old ELH slowly fading away with non-Alzheimer dementia. Add ischemic colitis and things really fell apart. I can’t become nonfunctional now – I’m a care giver!! But: I can do all things through Him who strengthens me. And I have hopes that this board will become a great resource for this stage of life.

Meanwhile, I’m mourning all the food I love but will have to give up to go just GF (baby steps – I know I’ll probably have to give up other foods!) Yesterday I emptied the box of Shredded Wheat and Bran, declared it the last to my ELH and then ceremoniously savored every bite.

Monique – Did you base your thoughts on the mention of fibromyalgia? “Fibromyalgia” does sound like a problem with dietary fiber. But in this case it is referring to muscle and other body fibers that experience unaccounted for pain (myalgia). Actually, when I’m in full blown C, insoluble fiber (e.g. Metamucil) is the only thing I’ve found to get things moving. But thank you for your thoughts – it made me realize I need to ask my GI if metamucil could interfere with the Ischemic lesions healing.

le

[wmonique2]

Hi Linda,

You have my empathy---I was a caregiver for my ailing husband for over a year before he crossed over and that brought on the colitis.

No, my thoughts were not about the fiber in fibromyalgia. The fiber in my diet was too much for my inflamed colon to deal with. I needed to eliminate it so that my colon could heal. The excessive fiber just exacerbated my situation and kept my colon irritated. I was on a low-residue diet for a long time before I switched to the low fiber one.

I read an article recently (forgot where) that said that some 200 diseases are associated with gluten sensitivity but doctors and patients do not know this. So they go on treating the disease without going to the root of the problem. So we are being medicated for conditions that may not exist if it were not for the enormous amounts of gluten we consume daily. I believe fibromyalgia is one of them.

At the top of this board, there is a posting about gluten sensitivity and the conditions that were eliminated when gluten was eliminated from our diet. It's posted by the members here.

Take good care of yourself because if you are sick, you're no good to yourself nor to your husband.

Love your sense of humor, keep it up.

Monique

[tex]

Monique,

I moved the post you mentioned (about the added benefits of avoiding gluten) to the forum on polls. It can be found here.

Tex

[Sharaine]

Hi Linda,

You sure have had a lot of challenges. I like your sense of humor and attitude!

I was diagnosed with CC in June 2011. Since then I have given up gluten, dairy, most soy, oats and eggs. I was experiencing watery and explosive D for many months before the diagnosis. I did take Entocort for a few months, but got off of it after about 4 months. The Entocort really helped me while I was on it, but D returned after I got off it. However, the D I had before diagnosis had me going to the restroom as much as 15-18 times a day. Now it's only 4-7.

Gluten is my biggest enemy. It upsets my guts and it gives me migraines. Since I've quit gluten, my migraines have disappeared except for when I accidentally get glutened. Be sure you do some research on this website or on other locations to learn how predominate gluten is in our food, make-up, toothpaste, oats, etc. It's flooring, but if you figure it out, you can recover some of what you've lost.

In my opinion, Udi's has the best gluten-free bread. Rudi's is THE WORST! It's awful. I've found GF frozen dinners (Amy's), GF pasta (Tinkyada and others), etc.

I am, as I said, not resolved, but I am better than I was. I wish you every success as you navigate this new challenge.

Oh, one last thing ... get Tex's book, shown atop the homepage of this listserv. It's fabulous!

Sharaine

[Lesley]

I wonder how many people there are who have CC that expresses itself as C instead of D and are not diagnosed. D is much more motivating than C.

being hospitalized with IV antibiotics brought on the relentless D, though, thinking back I had bouts with D before this. Still, the C rules my life. 3-4 days of C (has been up to 3 weeks), every stool softener and laxative available, and one day of D. That's my pattern a year into this disease, or at least since it was diagnosed.

Figuring out what I can/can't eat - enterolab.

Finding this forum - priceless!