Newbie afraid to eat, not sure how to proceed. Enterolab?

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
User avatar
UkuleleLady
Gentoo Penguin
Gentoo Penguin
Posts: 383
Joined: Sun Jun 23, 2013 4:45 pm
Location: Texas

Newbie afraid to eat, not sure how to proceed. Enterolab?

Post by UkuleleLady »

Hello and good morning! My name is Nancy and I'm new here and wanted to introduce myself as well as hopefully gain some collective wisdom.

Firstly, I can't believe I spelled "ukulele" wrong, but I guess that shows you how messed up my brain has been since I started having chronic diarrhea 4 or 5 months ago. I do play ukulele, and sing, and I write to you from Austin, TX.

I have a history of Asthma and GERD; but I believe my swift development of symptoms from MC followed being prescribed Dexilant (as you know a PPI) from my Gastro back in September (as well as some extreme family stress I was under in December-March.)

Of course at first my doctor thought I had "post-infectious IBS", then possibly UC, then the biopsy I had last week during what looked to be a normal colonoscopy showed that I have CC.

I was immediately prescribed Entocort for three months, and started taking it two days ago.

Prior to my diagnosis, I did go gluten-free a few weeks ago, and now I've been GF/DF/SF/Oat free/Nightshade Free for the past week. That said, I have no idea what I should be eating and I'm worried I'm reacting to various meats and possibly eggs and even rice!

I'm all over the place, and scared because I'm losing a lot of weight. I'm down to 104lbs from 122 back in January.

The entocort hasn't really kicked in yet, and I'm considering doing enterolab testing to rule out/rule in various foods so I can stop my mental havoc over worrying what could be good for me versus bad.

As a side note, before my diagnosis and learning about enterolab, I did send off some bloodwork to Meridian Labs to conduct ELISA testing for food allergies. I wish I had known about enterolab at that time but did not.

My question is, do you think I could still do enterolab if I started on entocort? I could go off it I guess since it's only been two days?

I feel like I need to figure out the food component because I'm having pain and feverish symptoms periodically, and I believe it is a food reaction. I have been tested for multiple infections and there aren't any.

I'm going to also get a complete physical and test my thyroid.

Thank you wonderful people for any thoughts.

Sincerely,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Nancy,

Welcome to our internet family. Yep, the brain fog, (and all the other symptoms) prove that you are definitely one of us. And typos are pretty common here, also. If you would like to change your username to correct the spelling, please let me know, and I can reset an option in the control panel for this discussion board that will allow you to change your username. Normally that option is turned off in order to prevent spammers or other troublemakers from joining and making it more difficult to track them down by changing their username. Just let me know if you want to make that change.

You would have to take Entocort for at least several months before it would significantly affect your test results at EnteroLab, so if you do those tests soon, the Entocort won't make any difference. And you're right, those tests can save a lot of time, and they can save a lot of unnecessary wondering and worrying.

You seem to be motivated, and that should put you on the fast track for recovery. Just remember that with this disease, even the "fast track" seems to move at a snail's pace, sometimes. Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

P. S. There are a lot of Texans on this board. I live about 50 miles north of Austin, out in the country.
: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.
User avatar
UkuleleLady
Gentoo Penguin
Gentoo Penguin
Posts: 383
Joined: Sun Jun 23, 2013 4:45 pm
Location: Texas

Post by UkuleleLady »

Hi Tex, from south IH35!

Thank you so much for your kind and informative reply. I am doing my best to figure this out, and as you mention I am trying to "fast track" but I will try to be patient with this, I'm getting the feeling that it's a pretty unpredictable disease and I'm going to have to learn to go with the flow, to some extent. (Hopefully not too much WD flow!)

You answered my question about the entocort's effects on testing. I think I will go ahead and order Panel A&C, and possibly perform the gene test at a later time. Thank goodness I have *some* savings.

I would in fact like to change my UkeleleLady to UkuleleLady! I would PM you to ask but I don't have 5 posts yet.

I'm also looking forward to reading your book. Thank you for writing that and for managing this wonderful resource.

Sincerely,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Nancy,

The system should allow you to change your username now. If for any reason it balks, please let me know, and I'll try to track down the problem.

Your testing plan sounds good.

You're most welcome, and I hope that you will find the book to be a very helpful resource.

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.
tlras
Rockhopper Penguin
Rockhopper Penguin
Posts: 605
Joined: Sat Aug 18, 2012 8:15 pm
Location: Houston, TX

Post by tlras »

Hi Nancy.... from another fellow Texan!

I live just outside of Houston! Welcome to the forum! I love Austin! You will learn so much from Tex's book. I have it on my coffee table! I had D for about 5 months as well, also lost about 20 lbs. I went from 125 to 110 in a matter of a few months so freaked out and got on Pepto Bismol for 3 months...that was after going gluten and dairy free. During the time on Pepto I also gave up soy products, raw fruits and raw veggies, nightshades, legumes, peppers, and went low fiber and low sugar. Some have to give up eggs. I luckily tolerate them. I'm so glad you are going to do the Enterolab testing. I didn't do it...somehow managed to figure out my intolerances with an elimination diet but may do it one day...just so costly. I've been in remission since I started the Pepto in September and still in remission after stopping it in December. I think once the Entocort kicks in you will feel so much better. Just keep eating a healing diet....meats, well cooked veggies, homemade chicken soup (if you don't have issues with chicken), maybe some rice. I do well with rice but everyone is different. Some have eaten potato throughout healing but I had to stay away from it. I now can eat it without the skin. Fiber is definitely not our friend. I have actually gotten sluggish and have increased my fiber but the fiber does tend to get me bloated so still have to be careful. But D is a thing of the past for me.

I hope the Entocort starts working soon....many on here have used it and it works wonders. Let us know your lab results when you get them.

I'm happy to say I've gained 10 pounds back and am no longer underweight. You will get there too! Just keep reading everything you can on this forum and ask ANYTHING!! It's also best to hold off on supplements until you start healing. I still only take Vitamin D-3 but getting reading to take some B-12. Try to stay away from processed foods if you can. They always have so many ingredients in them.

Good luck!

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
User avatar
UkuleleLady
Gentoo Penguin
Gentoo Penguin
Posts: 383
Joined: Sun Jun 23, 2013 4:45 pm
Location: Texas

Post by UkuleleLady »

Hi Terri!!

Thank you so much for your kind, informative and encouraging message. I just read it out loud to my husband and he was in awe that there are such nice, encouraging people out there. I said I think I found the right forum. And of course, Texans are some of the friendliest people. I love Houstonians. All the best people in Austin are from Houston.

If you are ever inclined, next time you are in Austin, please PM me, I would love to meet. We can go to Barton Springs or something non-food related perhaps! But no pressure, whatsoever. I'm just excited to hear from you. And I'm trying to go to Barton Springs for its healing waters a lot this summer, part of my spa plan to get well.

Thank you for your diet recommendations. I seem to tolerate chicken and eggs and lamb for now, but you know I had some bison the other day and immediately had heartburn. So that's off my list.

I foolishly had some boiled corn last night with my pork chop, and woke up with pain in the middle of the night. Maybe I'm starting to get a notion of what is "safe" for me given these events. Tomorrow I'm going to have an egg at lunch at see how I react.

I am very happy for you that you were able to gain back weight and that the elimination diet was so successful for you in determining food allergies/intolerances (I don't know the right lingo yet :). Gonna put that book on my coffee table too!

Anyway -- your message was the best part of my day. Thank you so much for replying to me.

Sincerely yours,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
tlras
Rockhopper Penguin
Rockhopper Penguin
Posts: 605
Joined: Sat Aug 18, 2012 8:15 pm
Location: Houston, TX

Post by tlras »

That is so sweet of you to say! Glad I made your day! Yes, this is one rockin' forum. Prepared to be blown away by all the intelligence and encouragement you will get from so many wonderful people. They all amaze me! You will learn so much more from this forum than many GI's pooled together! It's a lifesaver!

Oh and Barton Springs sounds beautiful...I've heard of it but have never been...can you believe that? I love outings where there is no food involved...lol...just the need for plenty of water. It does get tough in social settings but I bring my own food wherever I go and have just gotten used to it. I only eat at 2 restaurants and I probably shouldn't do that as the risk of gluten contamination is high. I don't react so I go. But not until I had healed a lot.

Oh yes, that nasty whole corn. It took me 3 times eating it and getting pain before it sunk it. Was in denial I guess as I love corn! I can do corn products though. Keep a food journal! Try a new food for 4 days before attempting another one. I learned the hard way. I do still get occasional heartburn but it's from overindulging as I'm starving all the time. I'm just now figuring out that the corn chips I've been binging on aren't the best thing to overdo....lol! I feel much better when I don't eat so many. We eventually learn what our bodies can and cannot handle. How do you tolerate a banana? I do well with those but some don't. I like to eat them for the potassium as I was running on the low-norm on Potassium.

I also had unexplained one-day fevers. I just realized after reading your post that I haven't had that feverish aching feeling in 4 months. Just goes to show you it takes awhile for the healing but please hang in there.....perseverance!! BTW...gluten takes a long time to get out of our systems.

Yes, would love to meet you one day! I don't even know if there is anyone in Houston on this forum. You are the closest one I know of!

Remember, we are all here for each other. Some people's stories will amaze you!

Take care,
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
User avatar
UkuleleLady
Gentoo Penguin
Gentoo Penguin
Posts: 383
Joined: Sun Jun 23, 2013 4:45 pm
Location: Texas

Post by UkuleleLady »

Terri,
I am going to get a daily planner today and use it to start tracking my foods and medicines. Thanks for the tips on supplements, too. I tend to over-supplement, and I think the entocort is giving me a false security for tolerances. I have only been on it a few days, but it has kicked in and I feel better. But, I want to protect my gut as much as I can during this healing phase, and not overload it!

Anyhow- I find it so interesting that first you were diagnosed with LC then celiac a few months later! Going to go through your posts a bit to see if you talked about that at some point.

Hope you stay cool this weekend!

Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
tlras
Rockhopper Penguin
Rockhopper Penguin
Posts: 605
Joined: Sat Aug 18, 2012 8:15 pm
Location: Houston, TX

Post by tlras »

Yes, it's hard to figure out what intolerances you have when on Entocort since Entocort will mask any symptoms. Some however will react while on the drug. For instance, while on Pepto, if I had ingested gluten by accident or even dairy I would know. That's why it's important to have Enterolabs testing done.

My diagnosis needs clarification. I need to change that. I had a colonscopy in June and went back for my diagnosis 3 weeks later. GI doctor told me I had Lymphocytic Colitis. He was getting all this information off his computer and apparently he's not real thorough in reading it. I wasn't surprised but when I asked him whether or not I had Celiac disease, he looked at the computer and said "No". Which totally baffled me as my bloodwork clearly showed I had it big time. But he told me to go gluten free anyway probably according to my bloodwork. Don't think he would have told me that with a diagnosis of LC as doctors don't usually believe what we eat has anything to do with it. So I just believed I had "Latent" Celiac disease whereas no damage had occurred to my villi just yet. Then I went back to see him in October and I told them I wanted to see my results of my colonscopy. And there right in front of me it said "mild blunting of the villi". Hello!!! That's Celiac disease. Then he goes on as if he had told me I had celiac disease in the first place....he had completely overlooked that information on my test results. Idiot!! Not that it really mattered I guess as I knew gluten was out for good and would eventually cause some major damage. So in all honestly, I was diagnosed with both in July.

BTW....I took Dexilant for one week in March, 2012 but also at the same time my cardio doctor put me on beta blockers. I got the D 2 weeks later. I quit the betas, got better then tried another beta blocker. Boom...2 weeks later, the D came back...then tried another beta and got only worse. So those dang beta blockers either triggered my MC or just added fuel to the fire already in my gut.

I would also stay away from probiotics at this time. I quickly got off them when I started having the D. I honestly think I had issues with probiotics the first day I started taking them. Once we heal more, we can test some out.

Hope you have a wonderful weekend. Everyone must be on vacation for the 4th...quiet around the forum.
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
User avatar
UkuleleLady
Gentoo Penguin
Gentoo Penguin
Posts: 383
Joined: Sun Jun 23, 2013 4:45 pm
Location: Texas

Post by UkuleleLady »

Terri,

Thank you for sharing your story. Very interesting read. I am appalled by your Gastro. His negligence is totally shocking.

My GI had me on align for a while, prior to my diagnosis, but I could tell my body couldn't handle a probiotic capsule.

Of course, I've asked him about diet, numerous times, and he says only medicine will help. I just can't believe how blockheaded these GIs are.

Thanks for the advice on probiotics. I thought they were worsening things, so I stopped taking them. I am going to only take Vit D for now, I guess. Hard because I love my supplements!
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Leah
King Penguin
King Penguin
Posts: 2533
Joined: Thu Feb 02, 2012 10:16 pm
Location: San Francisco Bay Area

Post by Leah »

Welcome Nancy!
Sounds like you are getting some excellent advise from my fellow MCers :)
I too went on Entocort, but for me it worked almost immediately. At the same time I took it, I also redid my whole diet. If you can, the best way to do this is to scale back on what you eat to a very small list until you feel much better. THEN start testing one thing at a time back in for a few days with each thing. the Enterolab testing will help tremendously with the main intolerances. Not until you are on a very low dose of Entocort ( it took me 6 months to wean off ), will you then be able to detect what else you might be reacting to. it really does mask symptoms very well.

We are all slightly different in what foods we can tolerate. i am able to eat eggs and most nuts, but some can't. Some here can eat bananas, but fruit in general still isn't good for me. I have always been able to have all meats , but others can not. I have always been good with rice and it's products, but some can''t have ANY grains. it's a long process, but no matter how you choose to go about it, we are all here for you to answer questions or just root for you.

Good luck
Leah
User avatar
UkuleleLady
Gentoo Penguin
Gentoo Penguin
Posts: 383
Joined: Sun Jun 23, 2013 4:45 pm
Location: Texas

Post by UkuleleLady »

Hi Leah,

Thank you for your message. It is very helpful to hear someone with experience tell me how careful I should be about trying new foods for now. I tend to get a little ahead of myself. I'm on day 6 of entocort and feeling almost normal, so it could be easy to slack off.

I believe I have a problem with walnuts, they always made my throat swell. but cashews seem ok. I'm not eating peanut butter anymore, so I got some sunbutter. I can tell that fruits, even bananas, are out. I don't think bananas work for me, anyhow.

Mostly I'm eating all meats, eggs, then rice, then quinoa and then mushy broccoli/ green veg. Also sweet potato. I am having tea with coconut milk in the morning. I have some nuts or sunbutter as a small snack, just for the calories.

I wonder if even this is too much?

I'd like to just eat meat, it feels best, but I'm worried ill lose even more weight.

Hopefully enterolab will help. I got my kit today.

Thank you for writing and happy 4th.

Sincerely,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Leah
King Penguin
King Penguin
Posts: 2533
Joined: Thu Feb 02, 2012 10:16 pm
Location: San Francisco Bay Area

Post by Leah »

Nancy, It sounds like you are off to an excellent start. I would stick to the diet you are on until you wean down to one pill a day. At that level you should be able to tell if you are reacting to something. Think of these next few months as time for your system to heal. Also, try not to get off the drug too fast. I have heard stories from others here that got off too quickly because their doctor didn't want them on it for more then a couple months and they ended up back to where they started... AND the drug doesn't work as well the second time around! However, if you start to get a little constipated, that is your signal to lower the dose.

Good luck and keep us posted
leah
Post Reply

Return to “Main Message Board”