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Severe Leaky Gut w/food-supplement sensitivities. Please help!

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Colleen, May 3, 2012.

  1. Colleen

    Colleen

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    Hello. Just want to thank you ahead of time for taking the time to read this and offering any advice or suggestions you may have. I am open to anything.

    My doctor says I have, and tests confirmed, that I have severe leaky gut which is triggering intense food/supplement sensitivities. My symptoms range from tingling, muscle weakness, lack of energy, heaviness in chest, wooziness, and my list could go on. These symptoms have kept me from working for the past year. At one point, I was not even able to drive a car.

    About a year ago, I was noticing lack of energy so I went to a wellness center in CA to have nutritional IV's done. It seemed like a great idea at the time. Well, I guess I do not eliminate like other people so the water soluble vitamins, which should have been easily eliminated by my body, didn't. I ended up getting vitamin toxicity. They were giving me extra B Vitamins as well because I had a high homocysteine #. I, for some reason, do not do well with B vitamins.

    Before all of this started, I tried to take a multi-Vitamin B and it gave me such an insatiable appetite that even food could not quench. The symptoms subsided when I stopped taking the B vitamins. Well, since they gave me such a large amounts of them and my body was not eliminating them, I had a severe reaction. I became insanely hungry to the point that i had to eat every hour. If i didn't, I felt as though I was going to pass out from lack of nutrition or something like that. So, even though I had just eaten an hour before, my stomach, like clockwork, would start hurting and I'd start feeling really weird until I ate. The strange part about it, is I never once felt full even with the huge amounts of food I was eating. Oh, and I never gained weight. Strange!

    So, here it is, a year later and besides struggling with the leaky gut, food sensitivity, I am dealing with the hunger and strange sensations I get. Only now, I can go about 2-3 hrs before having to eat. Regardless, I feel like my world revolves around food, and it's food that i am having reactions to. I am thinking possibly, the B vitamins did some nerve damage, maybe??? I don't know and neither do the doctors.

    I am reacting to just about all foods and supplements. So my question is, how does one heal if their bodies are so sensitive?

    Just wondering if anyone has experienced symptoms even remotely close to this and what, if anything, did you do?

    Thank you all so much for your time.. Blessings
    Oh, and my leaky gut and food allergies got worse when I did probiotics.
  2. nanonug

    nanonug Senior Member

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    Cartwheels while naked, then!

    Would you mind sharing which tests you used to have this diagnosed?

    Do you have any gut symptoms such as bloating, diarrhea or constipation, yellow stools maybe?

    Did they give you folic acid?

    Have you been tested for MTHFR polymorphisms?

    Hmm, have you done any kind of gastrointestinal testing, such as for Helicobacter pylori infection, for example?

    I recognize this: I think there is a higher than 50% probability that you have bacterial overgrowth in the small intestine.
  3. roxie60

    roxie60 Senior Member

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    Thanks for sharing. I am curious, I know I have trouble describing my symptoms sometimes so I am asking for clarification on the 'chest heaviness'. I have been taking my Drs PURE B12 liguid, Mentanx generic and UltraB w/ PQQ for the last couple of months. I have been having what I call chest pressure like someone squeezing pushing down on my sternum, sometimes hard to take deep breath, have th other symps you describe but I never associated it with the supplements (althougth I have reacted to other supplements in the past - felt sedated when taking some). Have you tried a different brand?
  4. dsw

    dsw

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    Food - Starvation - Hunger - Sugar Problem

    Coleen:

    I have nearly the same thing. I have been battling this food/hunger issue since about 1990. I have been a patient of Dr. Cheney since 1995.

    This is what he believes is happening. Basically, it is a issue with sugar and can relate (not same as) to Metabolic X Syndrome. They saw this sugar issue in many of the original Lake Tahoe patients and did not know what to make of it. Even today there is very, very, little research on this particular sugar problem.

    While I don't remember the "exact specifics" it goes something like this.

    You can't process sugar outside your cells - very very abnormal and perhaps nearly unheard of. Your body adapts by now processing sugar inside your cells, perhaps never or rarely heard of either ... no other explanation as you must be able to process sugar somewhere in your body to live.

    You eat sugar, but it doesn't register in all the places it is supposed to. Your blood level for sugar stays flat insead of going up. But your insulin recognizes that you ate sugar and pumps out the insulin as it should. But because the blood level doesn't recognize that you ate sugar, your blood sugar level goes even lower from the insulin, and you then experience horrendous hunger sensations ... (if you haven't felt this, you can't imagine what it is like.) It is beyond brutal.

    It gives new meaning to children and people starving all over the world. No amount of food makes it go away, and it can become worse after eating.

    It is still not understood and can't be cured or fixed, but you may be able to control the symptoms somewhat.

    My regimen decided upon with Cheney is a follows:

    This is not medical advice. It is how I "manage."

    You will need to experiment with different foods.

    Always line your stomach (eat) lots of protein first - before anything else.

    Dont add sugar (or any sugar substitute - you many find one that does not bother you) to anything.
    Sugar substitutes can be as bad as real sugar. Forget honey, stevia, and all the other strange alternatives. Try the pink one.
    Use in moderation.

    After the protein, you might be able to eat something that has very low grams of sugar like canned green beans.

    There aren't many normal things to eat - find products with the absolute lowest sugar grams and just have a few bites.

    Limit carbs (bread, potatoes, etc) to just a few bites. Always after eating lots of protein. You might find a carb that
    in minimal quantities that does not bother you. You cannot eliminate carbs completely.

    Fruit is a no-no. Every now and thin I eat one bite of an orange or apple. NEVER on an empty stomach.
    Tea such as mango, peach, lemon, etc. can be a no-no also.

    Hard cheese is excellent ... the more aged the better.

    Beef is the best as it contains glutamine and Cheney said this is what helps.

    For some reason, chicken makes me much hungrier and sometimes pork does the same.

    Cheney recommended a gluten free diet but I just can't do it.

    He also said to drink organic nettle tea - and I do and it helps with many symptoms. This
    whole process depletes minerals from your body and that causes weakeness and severe
    muscle pains and spasms. Nettle has more minerals than any other plant on earth.

    Read the label on everything you purchase to eat.

    My nutritional status is awful. And because of all the other CFS issues, vitamins don't help much.
    Prepare to age greatly-quickly, and prematurely.

    Even when not in a starving mode, it just does not feel normal. It is an odd sensation.

    Always take food with you such as cheese ... if you actually wait to eat or postpone eating,
    you could have a episode that will last days or weeks. It helps to nibble all day.

    Food or supplements with hormones in them, will make this worse. In the early years, Seacure
    helped greatly and then one day it sent me into weeks of hunger and starvation.

    One of the worst things I did to diagnose this was the 8 or whatever hours glucose tolerance
    test. Sent me into a hunger starvation mode for weeks. I don't recommend this unless absolutely
    required/necessary. However, this test can be normal, but you still have this sugar thing.

    This is also related to something - can't remember the exact word - someone here may know it -
    something like - lidesopathy - it means your fat mobolizes and moves to other places in
    your body to make ledges of fat such as over your belly-button, knees, elbows, etc.

    You can read about Metabolic X and pull out what is applicable - but our sugar problem is unique to CFS and
    perhaps a few other illnesses.

    If I remember anything else I will post it.

    Cheney will give me a referral to any specialist I choose, but he said that I may never find one that even
    remotely understands this sugar thing. I don't have the money to visit specialists at home or anywhere else.
    FYI - in my location at least, you can't see an endocrinologist without a referral AND tests proving that you need
    to see one. My tests are normal, the idiosyncracies of this illness NEVER end.

    As bad as all the other symptoms of CFS are, this is by far, the worst. It is life consuming.

    Please forgive that I have nothing positive to say about this.

    Please reply if you have questions, and please post if this helps you in any way.
  5. Colleen

    Colleen

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    At one time I had a severe case of systemic candida, but that was taken care of (it's probably been 10 yrs now). I have recently been tested for that several different times and it all comes back negative.

    Thank you so much for your input. It all helps!
  6. Colleen

    Colleen

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    The pressure i felt mostly on my left side. The best I can describe it as being a heaviness/pressure. With that, I felt like I was struggling to get oxygen. Just walking especially stairs, my heart would race and beat hard and I would gasp for air. Symptoms subside when I stopped taking it. My doctor thinks i have developed antibodies to B vitamins.
  7. Colleen

    Colleen

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    Wow! Thank you so much for the info, even though it is a bit ominous but at least it does give me a new direction and a better understanding what is going on. I forwarded your info to my doctor. Is there anyway to test for this besides the glucose test? When you said sugar makes it worse really hit the nail on the head for me. I have always felt better with a low carb diet/no sugar or fruit and even at that I am still having the intensity to eat every 2-3 hrs. But sugar does make things worse. I so appreciate your time and response you put into my post. It really means a lot to me. I would love to stay in touch and possibly share more of our experiences, pros and cons. My email is touchoflif@sbcglobal.net. Thank you again!
  8. Colleen

    Colleen

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    I replied to your post but it posted below. Sorry. I'm new to this, still trying to figure it all out. Please read the response to your post below. Thank you again so much for your help!
  9. bedman

    bedman

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    I also have leaky-gut-like senaitivities to supplements and meds. However i seem to tolerate most food (exvept chili). Vit C and psyllium husk helps a little bit, but still dont tolerate any oral medicine and dont know why.
  10. nanonug

    nanonug Senior Member

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    Would you clarify what "that" means in your answer above? I don't know if you are talking about candida or something else.
  11. Colleen

    Colleen

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    I've been tested several times for candida/fungal & has all come back negative. I've done blood, stool, & urine tests for candida.
  12. Colleen

    Colleen

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    It's so bizarre, isn't it? I have a friend who has food allergies & has to rotate her food all the time, but yet she can take all types of supplements, meds, etc... all day long, every day and it not bother her. I just don't understand that. Thanks for your post. Best of luck on your healing journey!
  13. nanonug

    nanonug Senior Member

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    OK, but you have not been tested for SIBO, have you?
  14. Colleen

    Colleen

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    Do You have severe food & supplement allergies too? Or is yours mainly 'sugar'? My doctor is going to be checking me for Vitamin B antibodies. I seem to have a intense reaction to b vit. I forwarded your post on to my doc. I haven't heard anything back from her yet but I am eager to hear what she has to say. Is there any other way to check this Metabolic X besides glucose test? And what exactly does that mean? Do they hook you up to a glucose drip for x amount of hours or make you drink it? That sounds horrible.
    Do you know how this all started with you? Did you have some other health issues that triggered it? Any traumatic events, etc...? Just wondering how one would acquire this with it being so rare.
    Thank you again for sharing your story with me. I am so sorry for all the suffering you have gone through. Any new info I get, I will keep you posted. Many blessings to you. My email is touchoflif@sbcglobal.net.
  15. taniaaust1

    taniaaust1 Senior Member

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    I know your post was addressed to Colleen but want to say a big thank you for your post. Its so relevent to me ..that Ive become quite emotional over it.

    I have all the issues which Cheney finds in his patients including this one (unfortunately all I can find is CFS specialists who arent aware of ME stuff).

    I have got a medical diagnoses of syndrome X and of hyperinsulinemia along with hypogycemia, all of which you spoke about Cheney talking about. It took 13 years before I saw 2 different specialists (a gyno while the other one is a allergist) who were able to diagnose syndrome x and also got me to have a 2 hr GTT which diagnosed the high insulin... my hypoglycemia thou was diagnosed years before throu a normal blood test

    Those issues were adding and impacting on my ME symptoms soo much and till now.. I dont think Id heard of syndrome X and hyperinsulinemia being part of ME (so hence I'd thought they were part of another medical condition I also have).

    Fortunately the allergist specialist I saw was able to send me to a nutritionist who understands how severely this kind of carb issue can affect a person (she has big issues with suger and insulin herself, thou she dont have ME) and she put me on a low insulin diet which is far stricter then a diabetic diet (diabetic diets are far too high in carbs/sugars for my issues).

    The diet Im on.. is JUST LIKE what Cheney has told you.. all you said could of been written by my own nutritiionist (except im allowed to eat one SMALL piece of fruit a day..thou i dont often do that as Im not sure about fruit and my body so I tend to avoid fruit too). I have to eat meat/egg first before I eat anything else.
    So many vegatables are out to me or have to be limited eg carrot due to their carbs.

    Its such a relief to me on this diet thou the diet truely sucks as it is so so strict... not one a nutritionist would usually put someone on as they more so are used to diabetic diets which are far higher in sugars/carbs.

    Its truely a nightmare if I have to eat out.. I have to order something like a yiros but without the bread with it or any sauce of any kind with it... and then have on its side like greek salad (cucumber, feta, olives) with the tomatoes picked out of it (cause tomato is a fruit). Many times when I eat out.. the only thing I find on the menu which on my diet I can eat is the meat.

    I now ring ahead and talk to the restaurant cooks before deciding to go to family members birthdays as I know I may have to take something myself to the restaurant to eat.

    One of the issues I do get with all this carb issue..is if i eat carbs.. I end up binging on them.. I just eat and eat and my body dont register fullness when Im eatting carbs.. unfortunately from that..will then come more sore throats, GERD, more tiredness and so many other symptoms too (mood swings to the point that I got in police trouble cause I ate carbs)

    Im astounded to hear that Cheney is putting his patients on the same diet as Im on due to his patients having the same issues as me. (Ive always said the group I resonate most to due to them having the same symptoms as I do.. is the group of patients Cheney sees. Im in Australia thou).

    The following info may be helpful to you and Im going to suggest something Cheney may not know about (so maybe good if someone could mention it to him, this info could help people adjust better to the very low carb diet they need to be on.. rather then giving up cause its too hard).

    Yes artifical sweeteners are bad for those who have ME (I cant take those) and yes things like stevia have a lot of carbs so no good for those who need to be no carb. (Ive seen stevia put at 2grams per teaspoon.. apparently with stevia while
    "The small packets that are often served at the table on their package say they contain 4 grams of carb per packet. Real sugar has4 grams of carb per packet or teaspoon as well.")

    What I use as a sweetener is a natural product called Xylitol (it is made from birch or corn). Xylitol is about as sweet as sugar and has UNDER 1g carb per 4g serve. If it wasnt for this product there I would of struggled far harder with staying on the diet i need to stay on. It makes things like yogurt (without fruit added to it) eatable to me. It makes my hot drinks drinkable to me.

    Also another thing with this issue (according to my allergist and nutritionist) is to make sure that you use full cream milk products and dont use low fat ones. As that too helps with the insulin issue.

    My body if I just have what a normal person would eat for a roast dinner eg meat, potatoes, carrots etc.. has been known to crazily gain 7kg in a 24 hr period after eatting something like that which seems to be due to the carbs.

    The COMBINATION of all the different stranger things ME patients have going on with their bodies I dont think would be found in any other disease.

    (like the above carb issue which you cant even go to a regular nutritionist for.. most medical person will tell you hyperinsulinemia dont even cause symptoms.. look it up online and you will see that.. yet it does and is causing many of us MAJOR issues (It not only makes me much ME sicker, it affects my immune system some how but makes me violent as well. Give me carbs and 20mins later I can actually be smashing windows.. a no sugar chickpea salad did that to me).

    There sadly is only a few medical people out there know of hyperinsulinemia causing some issues (it causes different issues in different people) and helping people with this problem. I'd love to know what percent of Cheney patients hhave this carb issue?
  16. taniaaust1

    taniaaust1 Senior Member

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    I know you posed question to the other but I'll help to answer.

    Severe food and supplement allergies are common in ME so would be coexisting with the insulin issues too.

    Syndrome Metabolic X isnt found via a glucose test but rather a combo of certain test abnormalities (which can include abnormal glucose) are needed for diagnoses. Also one is measured by tape measure in various places due to the shape it gives the body (elevated waist circumference).

    It is diagnosed in different ways in different parts of the world. In my case by elevated waist circumference, my insulin resistance (high insulin) and by my high cholestrol which also has reduced HDL.
    (my cholestrol issues werent actually caused by fats in my diet but rather due to my insulin issues)

    Metabolic syndrome is a quite common disorder.. but one in which there is a higher risk of heart issues and usually leads to obesity.

    My own 2hr GTT tests (with insulin levels included.. that has to be specified or otherwise they will just look at glucose) consisted of an overnight fast and then having blood taken .. then one is either told to eat ones breakfast or to drink a glucose solution.. blood then is regularly taken after doing that to see what your glucose and insulin does.

    (dont have a GTT of less then 2hrs if insulin issues are being looked for as there may be a delayed insulin reaction.. may doctors are missing seeing the abnormal results due to tests not looking long enough in those who have a delayed high insulin level). In a properly functioning body.. ones body should keep insulin response under a certain level, if it dont.. means the body is struggling to deal with carbs.

    (I actually had to argue with the blood lab to get the test done the way my specialist wanted as blood lab was positive that no issues would show up with eatting my breakfast instead there rather then taking their glucose solution.. I'd love to go back and wave my lab results in thier face to show them it did.
    My specialist..who specialises in insulin issues.. wanted to see exactly how my body responded to real things I did).

    Insulin resistance (hyperinsulinemia) is common in some illnesses.. eg I also have polycystic ovulation syndrome. It also is common with that.. thou as far as I know those with PCOS dont get the dramatic symptoms I do get to insulin (I wonder if due to MCS if Im more sensitive to the high insulin I have).

    Here is my specialists site on it all http://www.agale.com.au/IR.htm (i suggest to read expecially the dry ice link.. as it tells about how many test results for this issue are being screwed up due to poor transportation to labs).

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