Geez its been a while!

Updates from members who have been successful in controlling their symptoms.

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thedell19
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Geez its been a while!

Post by thedell19 »

Hey Guys

Its been an extremely long time since I posted. So wanted to drop in and say hi. So HI!

Over the past, what is it now, 8 years I have been gluten free and diary free. I have had no more flares since that time. I stopped seeing my GI Dr as he said, whats the point since you are doing so well? I agree. Anyways I am back up to around 155 lbs (college weight) after dropping to my lowest 105 lbs in 2006.

So I was reading online, that Coors light and other mainstream beers test lower than the gluten threshold for foods to be labeled as gluten free. So I said why not and started drinking it. At first it was few and far between but then with no negative effects I started to make it one of my drinks of choice. Well low and behold, I started to get some symptoms back. They presented themselves not as GI symptoms so much, but more along the lines of brain fog, feeling crappy, slight dizzyness, headaches... symptoms that were not my worst when I was at my worst. Not much in the way of D etc.

So I finally said, well thats not right, so Sunday I stopped drinking Coors light. I had a better night sleep, and I feel a little better today. Not so much drowsiness, not as much anxiety, and feeling a little more upbeat.

So I guess its not all about the D, which was my main focus back when I was sick because that was the hardest to deal with.

So what has happened since I stopped posting? Well I have 2 kids now. Amelia is almost 4 years old and turning into a little person! And Jeremy has just turned 3 months old. I am a father! Wowzers! Still live in Flagstaff Az, and still playing baseball in an adult league. I actually run that league now. Work is still work, and I have been at the same company now for almost 8 years. A non profit that helps lower income people with various things.

Anyways that's that. I still see Tex and Polly posting here! Good to see!

Any new ground breaking material?

Best wishes!
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
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tex
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Post by tex »

Hey Andrew!

:shock: Great to see a post from you again. We always wonder how family members are doing when they stop posting, so it's very encouraging to see that you're doing so well.

Thanks for being a guinea pig on the Coors Light. I always figured those claims were a little on the optimistic side (as if most advertising claims don't fall into that category. :lol: )

Andrew wrote:Any new ground breaking material?
We've found that mast cells seem to play a huge role in our symptoms (and treatment for many of us), and we've found that for some of us, because of the mast cell issue, antihistamines work almost as well as Entocort for some of us.

I can't report starting a family since your lost previous post :lol: but I did write a book. Otherwise, it's the same old, same old, I reckon.

I believe that Polly mentioned that she would be out of town until Thursday or Friday, but hopefully she'll have a chance to check in then. She'll surely be surprised and happy to see you posting an update.

It's certainly nice to see an update from you, and I hope that you don't wait another 5 years before checking in again. :wink: We like to know how everyone is doing.

Thanks for posting,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
thedell19
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Post by thedell19 »

Hey Tex!

Hopefully it wont be 5 years!

I just figured I had some good info to share so I thought I would pop on it. And it was weird it was a slow progressing symptoms that kept on building until I finally said, well duh! I assume the foggy brain will take a little bit of time to clear up, but even today was a little better than yesterday.

It was nice to drink real beer again, but hey, I would rather be healthy!

I saw about the book! Congrats!

Oh man Entocort was a life saver for me! I remember it got me through my honeymoon in Mexico without incident. Glad to see so many new members, and I know they are in good hands on this site.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
lulu
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Hi Again

Post by lulu »

I too, haven't posted lately, as I've had a few yrs. of extreme busyness, and I do mean busy & crazy. Hubby died 4 yrs. ago, mom got Parkinsons, she died a yr. ago Apr. & I started remodeling her house to move into, updating and doing some repairs on my 20 yr. old that was now too big for me, downsizing was really hard, so am finally in mom's house and life settling down somewhat. But the kicker is that after all of that, I got sick w/ a sinus infection I neglected until it went into bronchitis and was given Levaquin, which put me right back into the big D again, after being GF & diarrhea free for two yrs., so here I go again. I've had it for almost 2 wks. straight now again, and wondering if it will take me 11 mos. again of being GF again to heal, like the last time. I was am sure, over confident, thinking I'd kicked it. Anyone had an experience like this w/ Levaquin? I've heard some of the side affects from it are permanent. I had multiple side affects from it; nightmares, headaches, now the big D back. I'm back to start reading and searching the board again to see if I can get this under control again, hopefully, as did it before w/o any meds, and hoping to again. Haven't been back to the GI Dr. for 2 yrs. and he didn't even suggest when to have another Colonoscopy. He never ever mentioned trying GF, and told me there was no gold standard test for it, so he doesn't mention it to people. No surprise there, now.

Also, I got a call from a nurse friend who wants me to call a woman she knows w/ Ulcerative Colitis and tell her about the GF diet. Am sure lots of you on here know if this also helps the one's with the above kind of colitis. She's been in the hospital lately with it and wondering if this support group would be informative for her, as well as for us with the MC. Any info would be appreciated. I believe she has some bleeding also, but hate to recommend the GF diet if it doesn't help that kind, as we all know, it's a hassle that we wish we didn't have to endure sometimes.
You can't change the wind, but you can adjust the sails.
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tex
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Post by tex »

Hi Lulu,

I'm sorry to hear that you've had a relapse of symptoms following an antibiotic treatment. That seems to happen somewhat often. In fact another member recently posted about a relapse associated with Levaquin, and other problems that it caused. See post number 3 in the thread at the following link:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20334

Going back to a safe, basic diet should allow you to get your symptoms back under control. The amount of time required to reach remission will probably depend on the amount of damage that the gluten has done to your colon. Gluten damage can be slow to heal if the damage is extensive.

Yes, we have members here who have ulcerative colitis, and who control their symptoms by diet alone. NJ is one who has been controlling his UC symptoms for years this way. Please read his response to a new member's request for help in the thread at the link below. His post is number 5 in this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10248

You can direct your friend to that link, or print out his post for her to read.

I hope you begin feeling better soon, and the antibiotic didn't cause any permanent problems.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
lulu
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Hi Again

Post by lulu »

Thanks Tex for your reply. I'll pass the info along to my friend's friend about her UC.

I'm also hoping I don't have any permanent side affects from the Levaquin. After two days of taking it, I recv'd. an email from Thepeople'schemist.com that I subscribe to free, listing the 3 most dangerous antibiotics, and Levaquin was at the top of the list. Whoopee, I thought. My luck. I was so sick that I didn't fully read the paper from the pharmacy, but he had more listed than they did as I remember, after reading both fully. He also had a link from another person w/ some permanent problems from it. It may have been the tendon issues that wnorm spoke about, but can't remember for sure. In any case, am watching what I eat w/ extra attention right now, hoping it won't take a long time to get back to where I was, and in my extra time I'll be paying closer attention to new and old posts on here. I was spending at least 10 hrs. daily on the remodeling/moving/repair issues, so while not having diarrhea, I hadn't been on here. I hope all of you know how much this support board helps, and the info you've learned about and shared is just invaluable, and appreciated so much by me and am sure everyone else. I will be reading more on here again, trying to get better.
You can't change the wind, but you can adjust the sails.
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MaggieRedwings
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Post by MaggieRedwings »

Hi Andrew,

Great to see you posting and glad to hear all was well until the Coors - darn! Congrats on the 2 little ones and I am still one of the old timers that post. Many years here and Sally's old board and always happy to see another old timer posting. Don't wait 5 years again. :twisted:

Love, Maggie
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Polly
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Post by Polly »

TERPS!!!!! :turtle:

Tex knows me well - he knew I'd be thrilled to see you here again!

WOW - eight years in remission. That definitely makes you one of the old-timers around here. It's always so good to hear from old buddies..... Interesting about the beer. Many here (myself included) react to even the teeniest amount of gluten. To be labelled GF, a product must have less than 20 parts per million of gluten. And I actually react to that, so GF products don't work for me. Good thing you picked up on the fact that you were having GF sensitivity, even though the D was not an issue.

Married with 2 kiddies! Congrats! And doing good things - helping low income folks and running an adult baseball league. What do you think of "dem Os" (Baltimore Orioles) this year? Something else, huh? This town is going crazy!

Keep in touch.

Love,

Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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