Newly diagnosed and new here

[tex]

Yep, that's how I felt, (that I had a rare, unique, and uncatalogued disease), back before I came across the old board that was the predecessor to this one. After reading a few posts, my reaction was similar to yours. I thought, "Wow! These people are all just like me!" That's one of the reasons why we consider ourselves a "family".

Concerning the connection of gluten-sensitivity with peripheral neuropathy, and other neurological effects, Dr. Hadjivassiliou is probably the leading researcher in this field. If you haven't seen his findings, you might be interested in the research article at this link:

http://jnnp.bmj.com/content/72/5/560.full

EDIT: And, of course, the link that Joan just posted, fits right in with this:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14527

Tex

[Gabby]

Hi Karen,

Welcome to the PP family.

I think you are wise to order the Enterolab tests right away and at least find out about the big 4. I think it is a good jump start to fine tuning your diet.

I went gluten free for about a month and noticed a big improvement in how I felt and then ordered the Enterolab tests because I was afraid it was all in my head. Someone had said to me around that time that I was "just jumping on that gluten free bandwagon." I was afraid that my tests would come back negative too. Well guess what, they didn't. And then I did a gluten reintroduction test after a little over two months gluten free and I ate a couple of pieces of pizza. Boy did I regret that. The bloating was back big time. It was such a bad feeling that now when I look at bread and cake I'm not really interested unless it is gluten free.

Good luck and keep us posted on your progress.

[karenswans]

I thought I'd post an update after consulting with my GI. I told him I want to avoid meds for now and try to handle my MC through diet. He thought that was a fine idea (!) and suggested that I start with the FODMAP diet. I've already gone down the path of the Enterolab testing. If it comes back with a clear offender, I'll just eliminate those foods. If it does not, my next step is to try FODMAP.

I was beyond thrilled that my GI was open to a dietary approach. It's so good to have a plan.

[tex]

Karen,

Kudos to your GI doc!

The FODMAP diet is a step in the right direction, but I feel obligated to point out a few problems with it that should be avoided for anyone with MC:

Of the foods that are considered to be recommended, (low FODMAP foods), the following foods are usually contraindicated for someone with MC:

Citrus fruits, (because citric acid is a problem for many of us)

All artificial sweeteners, (not just those that end in 'ol)

All dairy products are a problem for most of us, (including butter, all cheese, all lactose-free ice cream, yogurt, etc.)

Lettuce is extremely irritating to the gut for almost all of us, until after our gut heals

Celery and Tomatoes are a problem for some of us

No one can digest whole corn, but most of us can eat products made from corn meal, or masa

Spelt is a member of the genus Triticum, so it definitely contains gluten, which is off limits for most people who have MC

Remember that the FODMAP diet was developed to treat IBS, not MC. With MC, it's safe for most of us to eat meats, potatoes, sweet potatoes, rice, etc. I don't know how those foods are regarded with the FODMAP diet, but they are generally safe for us to eat, except in a few cases with individuals who have many food-sensitivities.

Good luck with your treatment program, and please keep us informed on your progress.

Tex

[karenswans]

Thanks, Tex. If I have to do Fodmap, I'll keep those things in mind. I'm hoping my Enterolab results will come back with ONE very clear offender, and I'm hoping that offender is soy because I don't like it much. And, then, of course, I'll elminate all hidden sources of soy in my diet and be spectacularly better. And I'll probably look younger and be rich, too.

I realize it won't be that easy, but until I get the results I'll live in happyland.

[sarkin]

Karen,

I look younger! I'll let you know if I get richer.... not so much, thus far, but I've only been GF/DF/SF/*F for 6 months or so

Hope that comforts/helps you if there's perchance anything other than soy in your results. I am not kidding, and I'm not the only one who sees the difference. At first I thought it was that I just stopped looking sick, but a friend's daughter asked if I had dyed my hair - it's that much darker. Also, less cellulite. I thought I was post-vanity, at my age, but I'll take it.

And maybe I am imagining this, but I am happier. I don't think I was clinically depressed, though there's significant family history there. I just find myself more resilient with regard to mood, stupid things going wrong, someone *else* being in a cranky state - and generally sunnier. As you can tell, I think gluten is pretty much the root of all evil, but I think my naming it as a suspect here is plausible.

So maybe you get to live in happyland longer than you think!

Hope so,
Sara

[tex]

Karen,

Hey! I love that attitude. I feel exactly the same way - why worry today, about anything that can be worried about tomorrow, or next week, or whenever.

And thinking good thoughts is always a great plan that pays dividends, in the long run. Attitude is extremely important in overcoming any obstacle, whether it be disease, or any other hurdle in life. And IMO, attitude is exceptionally important in dealing with MC - optimism smooths the path to success, and the right attitude keeps us focused on our goals, and allows us to accept our failures, graciously.

Tex

[karenswans]

Sara, I thought I was kidding about looking younger! The fact that you've noticed such a difference is motivating to me. Less cellulite? Sign me up!

[JLH]

My girl friend says, "Don't borrow trouble." Easier said than done sometimes.

[karenswans]

Update and question:

I received my Enterolab testing kit yesterday! I never thought I'd be so happy to see a stool speciman kit.

One thing--I'm concerned, that even though the speciman is frozen for 24 hours, that it won't be viable and give me good results by the time it gets to Texas. We're having a heat wave in Seattle (stop laughing at me, Texans! I lived in Dallas for 12 years so I do know what a real heat wave feels like ). It's a long, hot way to Texas from here. Has anyone noticed that tests done during the hot months are less accurate? Should I wait until things cool down a bit?

[tex]

Karen,

There's no need to worry. It will be delivered overnight, and if you pack it right, it will be fine. Even if it should thaw, that's not the end of the world, because the environment inside the colon is at 98.6 degrees, also, and there are all sorts of bacteria causing fermentation, etc. So long as the sample is not adulterated, (contaminated), it's not going to change significantly, en route. The freezing is mostly for the convenience of the carrier. Frozen poop smells so much better than thawed poop.

With UPS, (or DHL, or Fed Ex), most of the wasted delivery time with domestic deliveries, occurs between the time a parcel arrives at the destination depot, and the time that the delivery actually takes place. The rest of the process is usually fast and smooth. For foreign shipments, of course, customs is always the primary time killer in the total delivery time.

As I recall, a sample from one of our members who happens to live in Hong Kong, was held up in customs, (in Alaska, if my memory is not playing tricks on me), for a day or two, at room temperature, of course. They finally decided to release it and send it on. The test results were right on target, as expected.

Tex

[Noodler]

Hi Karen

I've got similar biopsy findings to you.

I'm new here, just been diagnosed this month with a striking lymphocytic duodenosis after a lymphocytic colitis diagnosis 2 years ago. The LC diagnosis came when I was on something like 20mg of prednisone too. So you are similar to me. Of course I associate the lymphocyte activity in small and large bowel and as I have many food allergies and that's what is fuelling my illness so I am trying hard with diet.

At the moment it is getting the better of me and eating is getting very painful. Hopefully the advice on this board can get me through to the other side.

Good luck

Al

[karenswans]

Hi Al, I'm sorry it's getting the better of you right now, and I hope you get it under control soon. It is good to see someone else with a similar profile to me, though!

Tex, thanks for the info on the temp of the speciman. I'll send it next week rather than waiting for colder weather.

[Gabes-Apg]

Karen and Al

this is my approach to our conditions (s)
a reaction is a reaction, whether it be histamine/allergy and/or Chronic MC Inflammation and/or Villi damage.

if your body is under stress from any of these then your digestion is compromised.
if your body is under stress long term from any of these then it is likely you will have a chronic MC reaction. (diarrhea) that takes a while to get under control.

there are serious health issues associated with the digestion being compromised for long periods.

for the 100's of people on this forum, hardly any have ever had reliable guidence for allergy or irritants from medically prescribed blood tests.
the best guidence that allows most of us to have good management and 'get our lives back' has been provided by Enterlab testing, MRT testing, reaction testing done by naturopaths/acupuncturists and individual food diarys,
Some have utlised all of these, some have done what is available to them based on where they live and what they can afford.

a food diary is great, for me it helped to realise that eating carrots in the same meal as cauliflower causes issues. seperate they are fine (weird i know but go figure)
tracking your reactions to foods will help you to pinpoint troublesome ingredients
a reaction can be either/or of these; itchy mouth tongue, heartburn/acid, stomach cramps/discomfort, smelly gas, the texture of the Bowel Motion(BM), how quickly you have a BM after eating that ingredient.



Karen, i do hope you are not reactive to soy, as it is the hardest one to remove from your life. Soy has over 20 names that it goes by and you will be surprised what foods it appears in.
Some fruit juices have vegetable gum (soy) to make it appear like it has fibre,
most vegetable oils are based on soy (as it is cheap) so this affects snacks like chips/crisps, pre prepared frozen foods etc and makes eating out difficult as most places use vegetable oil,
it is very difficult to get lipsticks and lipbalms that dont have soy as manufacturers use soy for Vit E content (as it is cheap)
alot of supplements that are gelatin/vege caps, these have soy in them.

Good luck to both of you in the MC Maze!!
my tag line for MC is that
there is no right way or wrong way - there is your way.

across the group although there are fairly common ingredients we react to, how we react can be different and most of us have fairly unique ingredients that cause reactions
in relation to medications and eating plans, what works for one person may not work for another so there is a lot of trial and error to figure out what works for you.

when you are feeling like crap (pun intended) this is probably not what you wanted to hear....

take care

[Gloria]

Gabes,

I'm glad you brought up the food/poop diary which we affectionately have named "Winning the Poo." I don't think we've remembered to tell newbies how helpful a diary can be to pin down our intolerances and irritants.

Gloria