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Enterolab Results & update

 
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Rebecca2z
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Joined: 09 Mar 2017
Posts: 159
User's local time:
2017 Oct 18 - 4:54 AM




PostPosted: Fri Oct 06, 2017 2:02 pm    Post subject: Enterolab Results & update Reply with quote

Hi All,
Ok I got my lab report from Enterolab and I have posted the results- comments welcome.
I mostly knew what foods I was having reactions to except the Oats, that was a good one to know because here I am consuming lots of different foods with oats in them. So I am pleased to have that info. I don't think my tests show any major problems with most foods. Happy about this ! Of course gluten I will never eat or dairy & now oats.

I had my G-J tube placed last Friday, and omg what a nightmare, I have PTSD from the whole experience. They placed the feeding tube and while in the recovery room the tube became dislodged and I starting bleeding internally. The whole thing had to be removed and the surgeons had gone home as well as the anesthesiologists.

A floor doctor came over to me and asked if I wanted to wait 4 hours till those docs came back on or did I want him to remove the G-J tube, I asked how painful would be and he said it would be very painful. I said take it out anyways, he told me to take the blanket into my mouth and bit down real hard, I shoved nearly that whole blanket in my mouth in hopes it would somehow limit the pain. It didn't - it was horrid. But he got it out, I passed out after and I have no memory of the next 24 hours. They heavily drugged me and kept me in the hospital for 3 days.

So now move forward a week, I am 85 pounds and all my blood work is way out of range and I am going down hill fast. Yesterday they spent over an hour trying to get a feeding tube in my arm, after several punctures I was told the picc line can't be placed due to my nerves and vessels ( Ehlers Danlos problem) . So as a last ditch effort to save me they are using my port that I use for IVIG. I was told to never allow TPN into that port, but I have no choice.

I was told while in the hospital for those 3 days my stomach was in severe shape, it is elongated and lays in my abdomen. This is from the Ehlers danlos. My bowel is also not where is should be. UC Davis is saying this TPN I am on now is only a bridge, they want to attempt another type of feeding tube into my intestines in 3 months. I am not sure about this, need to research it.

That's my update, I am sharing this info so people can understand that having MC is not a trivial matter, it CAN be life changing especially if you have other health issues.

I am still trying to figure out how much steroid I need or I should say how little I need, because for sure 2 pills causes too much C. I am taking M of M everyday so I can fight the C. Too much of that and I have hours upon hours of WD. the GI doctors should be providing better guidance in regards to this but I found them useless. We are on own- Grateful to everyone here for sharing their journey .
Hugs,
Rebecca
waving
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30583
User's local time:
2017 Oct 18 - 6:54 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Oct 06, 2017 3:45 pm    Post subject: Reply with quote

Rebecca,

Thank you for sharing that update with us. I trust they will soon be able to get everything stabilized so you can begin making progress again.

Your EnteroLab results are much better than I had hoped for. Eggs and soy are apparently not a problem, and with an overall score of only 7, the test score for the 11 other antigenic foods means that none of them should be a problem. Even the oats should not be a problem, but it might be prudent to watch out for oats while you are still reacting, just to be on the safe side. After you are in remission, you can test them out to see whether or not they might cause problems.

Rest and recover. There'll be better days in the future. Especially if your doctors manage to get their act together. Keep us posted when you get a chance.

Hugs,
Tex
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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.
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starfire
Moderator
Moderator


Joined: 25 May 2005

Posts: 5161
User's local time:
2017 Oct 18 - 7:54 AM


Food Intolerances : Gluten, Soy
Location: Pennsylvania

PostPosted: Sat Oct 07, 2017 5:21 am    Post subject: Reply with quote

I am so very sorry that you are having to go through all this. x fingers
_________________
When the eagles are silent, the parrots begin to jabber"
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Deb
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 20 Nov 2010

Posts: 1542
User's local time:
2017 Oct 18 - 6:54 AM


Food Intolerances : Gluten, still determining others
Location: Minnesota

PostPosted: Sat Oct 07, 2017 12:17 pm    Post subject: Reply with quote

Oh Rebecca. I am so sorry to hear of all you're having to go through. Continued prayers for your healing. Your trials put things in perspective. Deb
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Sue777
Gentoo Penguin
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Joined: 19 Jun 2005

Posts: 370
User's local time:
2017 Oct 18 - 8:54 AM



Location: Connecticut

PostPosted: Sat Oct 07, 2017 12:53 pm    Post subject: Reply with quote

So,so sorry. Thanks for the update, and wonderful news on the Enterolab results! Hopefully that will make your challenges a little bit easier... Lord knows you have enough of them to deal with. Your attitude and mental strength are phenomenal and WILL get you through this and on the path to healing. You WILL get your life back - if anyone can do it, you can! Prayers and positive energy heading your way.
Sue
_________________
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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sunny
Rockhopper Penguin
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Joined: 17 Jan 2008

Posts: 682
User's local time:
2017 Oct 18 - 4:54 AM



Location: Washington

PostPosted: Sat Oct 07, 2017 2:32 pm    Post subject: Reply with quote

Rebecca,
Thanx for posting this ....I was reading so fast, I had to go back and read it slowly and then realized there were tears running down my cheeks...I am indeed grieved to read of this nightmarie of a procedure and soof course you have PTSD and probably will for a while....I had an episode with a Cardiologist that caused a panic attack...first and only...and then the fear of Cardiologists that lasted a long time...

I was stunned the doc asked you if you wanted to wait 4 hours for help while bleeding internally....what on earth! And then to have you stuff a blanket in your mouth for pain as he removed it? He couldn't use a twilight sleep med to lessen the impact on your Psyche...? The whole thing is just stunning!

I hope that your docs will come up with more help for you and your health can recover....
I'm thinking of that old saying......" A burden shared is halved and a joy shared is doubled..." I hope your burden of pain and fear and ill health is halved as we all share it together and send loving thoughts to you...and then someday your joy in recovery will be doubled as we all rejoice with you...
Sunny
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"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7127
User's local time:
2017 Oct 18 - 10:54 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Sat Oct 07, 2017 4:00 pm    Post subject: Reply with quote

Oh dear friend what a awful experience for you. healing hugs and hope that you are recovering from the pain and the trauma of the events.
gentle healing hugs xo

Quote:
I am sharing this info so people can understand that having MC is not a trivial matter, it CAN be life changing especially if you have other health issues.


ditto to that... MC with other health issues, makes every decision about treatments, protocols, eating, supplements way more complicated. trying to do things to assist the other health issues while dealing with the fragility of MC.

your results are a great basis for you to move forward. avoid gluten and dairy at all costs. your overall score is quite good, that is also good news.
and sadly doctors /specialists are not encouraged to assist with individual medication requirements.
maybe a good option for you is to alternate 2 tablets one day, 1 tablet the next day, then next day 2 tablets, next day 1 tablet... and see if that is your 'happy medium'

sorry for delay in replying, in between work, and then doing a mini move as I am house/dog sitting for the next month for some friends.
for a MCer this means taking my safe cookware, safe ingredients, safe clothes washing requirements etc etc.

take care xo
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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kbb
Administrator
Administrator


Joined: 30 Nov 2016
Posts: 56
User's local time:
2017 Oct 18 - 6:54 AM


Food Intolerances : Gluten, Soy, Chicken Eggs, ???
Location: Tennessee

PostPosted: Mon Oct 09, 2017 7:40 pm    Post subject: Reply with quote

More prayers for you Rebecca.
_________________
-Kelly

I thank God that He led me to this forum and I thank Him for you.

Heart Palpitations 12/2013
Urticaria 2015
Symptoms for 5 years prior to 6/2016 diagnosis CD & LC
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Janie
Adélie Penguin
Adélie Penguin
United States

Joined: 06 May 2016

Posts: 245
User's local time:
2017 Oct 18 - 4:54 AM


Food Intolerances : Gluten, Dairy, Soy and chicken eggs so far
Location: Simi Valley, Ca.

PostPosted: Tue Oct 10, 2017 10:59 am    Post subject: Reply with quote

I keep you in my mind and in my prayers. bouqueofpinkroses
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Janie
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