What the doc said about leaky gut.

    • December 9, 2009 at 3:38 pm

      sorry nothing to rep[ort

    • Anonymous
      December 9, 2009 at 10:31 pm

      Hello Dawn. Glad to hear Kevie is al least maintaining stregth. I am interested in this intestanal theory about LG. Do they use a scope to verify, or just reley on tests? I have been battleing divirticulitis for a while and just wonder if that is what trigered my GBS.
      Take care

    • December 9, 2009 at 11:09 pm

      There are a variety of tests and causes. One of the blood tests measure Igg levels, so that would interfere with us. There is also the test for candida if that is what is causing the lg this is done by stool sample. There is a PEG test and a test that your urine is used. I am tired right now so I can’t remember ALL of the names. Besides the obvious causes, there are so many others, aleeve, pop, and so on. It makes sense. I read that 70% of the immune system is centered around the digestive system. Scope was NOT mentioned as a test, in my mind, small as it is, I would think a barium swallow or maybe a thinner substance swallowed and then exrayed would be a good test. But there was nothing like that mentioned. Don’t get the wrong idea that I am a whack job looking for a miracle cure, but if there is some possible reason that Kevie has cidp or some possible reason that he gets these sweats, fevers, stomach pain and so on, I have to at least entertain the idea. It all just makes so much sence when you read it!! Or does it? i feel like I am in that cirlce of logic that Julie wrote about and I can’t get out!!!

    • Anonymous
      December 10, 2009 at 9:27 am

      Who knew when I mentioned Leaky Gut that you would become so knowledgeable on it, LOL.

      You are a good researcher. You make me proud woman!

      I’m sure I’ll talk to you later.

    • Anonymous
      December 17, 2009 at 9:06 pm

      Leaky gut has hit mainstream. There is an excellent description in the August 2009 Scientific American article “Celiac disease insights, clues to solving autoimmunity”. The researcher is Alessio Fasano, who works at the University of Maryland. My doctor says the theory is right but the tests haven’t been developed yet.

    • Anonymous
      January 7, 2010 at 4:31 pm

      Hi,:mad: 😮 This is my first time posting and I’m doing terrible, sorry, but i read some of your entries and wanted to share with you what I have found out. First of all I have moderate to severe cidp which started about 18 months ago. but before all that, i had diarhea for over a year..went through all the tests, etc. and nothing was found; then, bam, I started getting numb and tingling all over. found out over time and study, that stomach problems are pretty typical with these illnesses because the immune system is highly represented in the gut. i went to a wellness center, in addition to my neuro, and they gave me a powder you mix with whatever for ibs and, to my total shock, it actually works. its important to stop the stomach problems as nutritional deficiencies will result if you don’t. to the mom who has a son w/gbs and is drinking diet coke, that isn’t good. just look up on the net and see what the ingredients in diet anything contain and what they break down into; sugar is natural, course water is best. i’m so glad to find a group of people who are going through what i am…my social worker suggested i join a hiv support group since it was the closest thing to what i have around here, but its just not the same. i have so many questions. good luck to all of you, patty

    • Anonymous
      January 14, 2010 at 2:08 pm

      Hi Dawn,

      I would be interested in hearing about Kevin’s tests. your onto something.
      Glad tohear he is crankin out pushups, thats, Great.–tim

    • Anonymous
      January 14, 2010 at 2:10 pm

      Hi Dawn,

      I would be interested in hearing about Kevin’s tests. your onto something.
      Glad tohear he is crankin out pushups, thats, Great.–tim

    • Anonymous
      January 16, 2010 at 2:02 pm

      Dawn – Just had an idea & too lazy to pick up the phone & call you.

      You should post all of the blood tests on here so others can print them & take them to their dr’s if they want to.


    • Anonymous
      January 18, 2010 at 6:26 am

      HA HA- Just showing concern.

      Mine has a GI component as well.
      so I thought thats what we do here. Share information.

      I am not looking for anyones private information, just basic what
      did they think about the two conditions interactions. Dawn does not
      have to release any information about her sons condition. I have shared
      quited a bit about myself to help others here.

    • January 18, 2010 at 10:05 am

      Hi Tim,
      I would be happy to post the blood work, maybe it can help others too. It seems that MANY of us have the gastro issues, so if it could help, I would do it. I don’t think Kelly meant anything by it, she too is going through issues with her daughter and wants to have some info for the doc b-4 her next appointment. I have dropped the ball since I posted this because honestly I am tired,frustrated and sad that I cannot fix things for Kev. I know taking a hiatus isn’t going to get things going, I just needed a break. So many things AERE NOT constant, so it is hard to weed out what is what. Is it LG,is it because we are weaning down and his intestines are not working,is it as simple as candida causing LG and it could easily be fixed? I am so confused. So, check back in a week or so to this thread and hopefully I will get the courage to face this LG issue and get things rolling for Kev. and post the tests that we have done thus far. Keep in mind, when I post them, it will not be professional looking or chart like like Norb, he has the best info postings!!! I’m developmentally delayed in the computer area!!!

    • Anonymous
      January 18, 2010 at 10:13 am

      Just to clear things up (thinking my last post on this may not have been clear).

      I was suggesting Dawn should post what blood tests are being done to diagnose Leaky Gut. She has done extensive research on Leaky Gut & I was thinking by posting what she has learned she could help others, so when people go to their dr’s they can request x,y, & z blood tests.

      Hope I cleared that up a bit.


    • Anonymous
      January 18, 2010 at 12:01 pm

      All Good,

      You know that the wise ones say all health starts in the GI. It seems many have GI problems and CIDP. Cause or result. that is the question. or Both.
      My pain has dropped 90% by going off Gluten. I am off for 2 months now.
      Defineately a connection. I have not cheated one bit either. I eat yogurt
      rice, potato, meats, milk and gave up Beer. Vodka work pretty good.
      also tons of fruit and raw vegetables. I have big energy. the bread, gluten and carbs were bogging me down real bad. sinus problems, joint pain, fatigue, memory on and on. Gluten is bad.

      Kelly my daughter has that darn crohn’s so it makes sense that my GI issues
      may just have been lifelong and subtle. SlOOOw damage. she won’t quit bread though, I told her she could probably go into remission if she did but she is 19 and not thinking like us.

      So with that said, I am getting the old endoscopies sooner than later. Yuck.
      Maybe I will learn some more. My neuro admitted the Gluten could cause me pain, but not weakness. that was how he felt Jan 7 this year.
      He is keeping me on 2gr/kg for another 6 months then we will space it out.

      Nice to check it. Have a great day.–tim–