Anyone know about Leaky Guy Syndrome?

    • Anonymous
      December 1, 2009 at 12:01 am

      I think Emily may have Leaky Gut Syndrome.

      She has been complaining of stomach pains for 4 years now. We have not been able to figure out what causes them. We’ve eliminated dairy for awhile, switched to only organic dairy products, given her lactose intolerance pills, eliminated starches, tested her for H. Pylori, the list goes on & on.

      She’s been having horrible stomach pains for the last few days. I’m going to call her dr tomorrow morning to see what we can do to test for Leaky Gut. Apparently there are still some dr’s who don’t believe in it. I’m hoping her pediatrician isn’t one of them.

      Does anyone else have this or has anyone researched it? I need some good reading material on it to take to the dr.


    • Anonymous
      December 1, 2009 at 12:08 am

      I’ve not heard about it, but I’d certainly be interested in hearing more.
      (esp. if thats what they determine Emily has)

      I’ve been to the GI specialist a few times, and they did a colonoscopy (not fun), cause I had pain, frequent stools, and then incontinence of bowel.

      My gastroenterologist decided I just have IBS. (irritable bowel)
      They think I may have irritable bladder as well.

      However, they gave me a medication to slow down my digestion to hope that would cause the pains and stools to stop.
      But I don’t want to NOT go.

      Sorry about the going on about my bowels. 😮

      I hope they figure out whats going on quickly so she gets some relief.

    • Anonymous
      December 1, 2009 at 12:14 am

      I have been thinking that the CIDP affected her autonomic nervous system some & that’s what has been causing the pain. But EVERYTHING else is fine. Her eye is fine, her feet are feet…no pain anywhere other than her stomach.

      It’s 12:12am & she is currently laying in my bed watching TV because her stomach hurts so much. She didn’t go to school today because she was up for 3 hours, in the middle of the night last night, with the stomach pains.


      It’s just frustrating & so very hard to watch my child sweating, shaking & crying because she’s in pain.

      Google Leaky Gut Syndrome – it’s really pretty interesting.


    • Anonymous
      December 1, 2009 at 1:19 am

      I do not know about leaky gut syndrome. I do know that some kids do not tolerate milk or certain kinds of sugars other than lactose. Even though you have eliminated milk, it is hard to get rid of all dairy products because they are found in so many foods as are some of these other sugars and, as below, wheat. The reason I was writing this was to ask about celiac disease. There have been quite a number of people with GBS/CIDP and celiac disease. Celiac is sensitivity to gluten such as found in wheat. It is pretty common and can be tested for with a blood test. It is not common in children, but because it is associated with this and other autoimmune diseases, it might be worth asking about.

    • December 1, 2009 at 4:30 am

      Hi Emily’s Mom;
      The first thing I thought about was celiac disease. This disease can affect
      children and adults. I remember reading where leaky gut and other gastrointestional disorders can be a symptom. Just plug in celiac disease on your favorite search engine to get information and you can also ask your doctor about celiac.
      Once diagnosed the disease is easily controlled and the intestines heal. Some neuropathies have been associated with celiac.
      The healing takes place by avoiding wheat gluten, rye and barley in the diet.
      Gluten can be found in unlikely foods and there are websites that have loads of information about gluten allergies and sensitivities and celiac disease.
      Will say a prayer for Emily and you.

    • Anonymous
      December 1, 2009 at 7:08 am

      Hi Kelly,

      Sorry to hear Emily is suffering with stomach problems on top of Cidp.
      When it comes to stomach pain and GI tract. thats a world of its own.

      My daughter Kelly was diagnosed last spring after a few years of ongoing stomach pains, stoole issues etc. with at first a protein losing enteropathy.
      This is when nutrient passes from the bloodstream into the bowel.
      Eventually we confirmed after upper and lower edoscopy, Chrohns. How wonderful. more autoimmune crap.
      I know you mentioned of some IBS with Emily’s fathers side.
      I have mild to moderate gluten sensitivity from my moms side who suffered with GI issues, cholitis, polyps, etc.

      I tested negative for celiac spru but believe it is NCGS. Non celiac gluten sensitivity. The inflammation from it adds to the CIDP problems I have in the form of added pain, joint pain, eczema, sinus problems, fatigue etc. like all autoimmunes some test results don’t add up or may be false.

      Although Emily’s CIDP is rare, I would look into the obvious conditions, IBS, Lactose, Gluten/wheat issues. These are very very common. Its hard to restrict your daughter but its worth a try. try a few days without bread and gluten, then try others and hopefully you’ll be onto something.

      I wish you guys the best with it.–tim–

    • Anonymous
      December 1, 2009 at 11:00 am

      We know it’s not Celiac’s Disease. Emily has already been tested for it.

      A problem we have is Emily is basically a vegetarian (she only eats pork) & she gets most of her protein from dairy products.

      I don’t want to give her soy products for protein because soy has a lot of estrogen in it.

      She’s not having any CIDP issues right now.

      Thanks for the advice.

    • Anonymous
      December 1, 2009 at 6:02 pm

      Hi Kelly
      Here is my daughter’s take on it: She is not a pediatrician but an ER doc and has never heard of it. But if she sees a young kid in the ER with chronic stomach pain without obvious cause, all tests negative, she would suspect stress. Being in the ER she would, of course, refer to a pediatrician. It could be issues in the family or school or in Emily’s case – IMO – it could be the stress caused by her disease and the treatments.

    • Anonymous
      December 2, 2009 at 1:26 pm

      Norb – We have thought about stress too. And stress does cause her to have stomach aches but those stomach aches are different than what she’s experiencing now. The pain is different & Emily looks different. With the stomach pains she’s having now she sweats, her eyes get big, she shakes & she cries…I mean real crocodile painful tears.

      Stress tummy aches do cause pain but not in the same place & with those well…she usually ends up on the toilet. And they have never (even through times in the hospital & painful testing) caused her to sweat & shake like she has been over the last week.

      It’s hard to explain, but as her mom, I can feel the difference somewhere inside of me. I know that probably sounds crazy but Emily & I have a very close connection & it’s just something that I KNOW. I can sense that her pain is not caused by anxiety. I know it’s something else.

      The stomach aches now are causing constipation issues during one bowel movement & then the next one is just fine. Then the next BM will be “balls” again & hard to push out. Then she might be fine for a day & then all of a sudden she’s pooping balls again & having to push hard.

      It’s bizarre. And no dr can figure it out.

      We do know that she is under more stress at school. She doesn’t have the most understanding, warm, fuzzy teacher around. This teacher acts like she’s teaching 12 year olds instead of 8 year olds. The work is harder but Emily did get all A’s on her report card – so it’s still not really a challenge for her.

      We have had some issues with her port & she is aware of them. She will probably be getting a new one within the week. She knows she’s getting a new one but has requested for me to not tell her when until the morning of the surgery. She doesn’t want to have to sit around & count down the days & worry about it. We just decided last night to go ahead with the new port ASAP – so that could not have been bothering her.

      I have been wracking my brain trying to figure out if it stress because that was our first thought too. But Emily swears she’s not worried about anything & when she is – believe me, I am the FIRST person to hear about it because she is not good at hiding her feelings.

      Thanks for talking to your daughter about this.

    • Anonymous
      December 2, 2009 at 1:27 pm

      And I just realized that my title says “Leaky Guy Syndrome” instead of “Leaky Gut Syndrome”.

      That’s what they get when they put the y next to the t, LOL.

      Leaky Guy Syndrome….lol.


    • Anonymous
      December 2, 2009 at 4:07 pm

      I have been reading your postings on the stomach pains and bowel issues with Emily.
      The nerves to my rectum were affected from the GBS and the way you describe Emily with her issues are similar to my own. I will have stomach pains, break out in sweats and sometimes feel nauseated. My hands will shake and I can feel trembling shakiness in the abdomen. If the stool is soft I have no problem but if I am constipated or the stool is hard I suffer with it.
      I also have to strain like I’m trying to have a bowel movement to get the flow of urine going and keep it going.
      Hope Emily is feeling better and give her a big congratulations on getting those wonderful grades.
      Good luck

    • Anonymous
      December 2, 2009 at 5:18 pm

      Stress always seems to be considered the first and foremost reason.Getting a new port evens scares ME.She may have a long acting type of flu/tummy virus that has lingered.
      Here come the holidays.
      I would definitely take her to her pediatrician to see what he/she thinks and have a gastro specialist referral on hand.
      Hope she’s better soon. Glad she has a mom who is so caring and watchful.

      CIDP is no fun. When folks drop by and see me hooked up to MR.IV Pump they back away.Maybe I should put a friendly face on it??

    • Anonymous
      December 3, 2009 at 2:42 pm

      Thanks Shirley – Emily’s autonomic system was slightly affected before she was diagnosed. She did have trouble “dribbling” in her underwear. I do think that some of the stomach pains are associated with her bowels being affected too. Or maybe the CIDP slowed her digestive tract down completely.

      She seemed to be OK yesterday but the pain returned in the evening. She went to school today & called me a few hours ago. She said her stomach hurt at a level 4 but she wanted to stay in school.

      I’m hoping we get past this soon.

      Limekat – Emily didn’t know about the new port until yesterday when her friend told her on the playground. Apparently her friend got a hold of her mom’s cell phone & read some text messages the two of us had. She then took it upon herself to tell Emily about the surgery because she was worried that I would just spring it on Emily. Emily called me from school crying. She seemed fine after I talked to her about it.

      Emily knew last week that she would need a new port but we thought we could wait a few months. The stomach pains started before she found out.

      We have taken her to a gastro dr & he didn’t have any ideas either.