Severe Leaky Gut without IBD?

[apizzle417]

Hi all,

Not sure what to do at the moment. I guess to cut to the chase, I am having adverse reactions to most foods, with the exception of turkey, chicken, beef (I think) and carrots. I add foods here and there to test them out but have had to resort to the original diet a few times now. I get really bad aches and stinging pains in my abdomen, nausea, bloating, prickly in my skin and tingling. The worst of it all is my cognitive changes. I get severe anxiety and depression for 1-3 days and just simply feel like my mind is dulled.

My question is could I potentially have an inflammatory issue (ie Crohns)? It seems to me I have an incredibly leaky gut but I don't have diarrhea anymore (constipation now) and I've only lost 10 pounds (I presume it's mostly from my diet), so I didn't think about IBD right away but as I researched leaky gut issues IBD kept popping up. I'm at a loss for what to do next but am very tempted to try an elemental diet because I'm on the verge of losing my job and I'm going back to school. With all of this going on I find it so incredibly difficult to function.

Here's the back story if you wish to read:
I was diagnosed with SIBO and Candida a few months ago (tested positive for Candida and wasn't tested for SIBO because the doctor said it was quite clear that's what it is). I also had an endo/colonoscopy, both came up negative with any findings.

My symptoms took a turn for the worse after I had hip/pelvis surgery and they put me on percocet and indomethacin (25 mg 3x/day for 3 weeks though I only stuck with it for a week because I was getting such incredibly weird side effects). After this, I started having horrible histamine responses to food and from environmental factors (ie sun). Now I'm responding to what appears to be salicylates...

Could this be IBD and there are any red flags so the doctors aren't exploring this route? Could I just have an incredibly permeable gut without IBD?

Thanks,

APizzle

 

[rollinstone]

It certainly sounds like some form of ibd, that being said, even a crohns diagnosis is fairly broad, (a variety of causes all manifesting as skip lesions), when did you last have your scope? Maybe you could ask your GI to order a cal protectin stool test which is less invasive and measures intestinal inflammation quite accurately. Hang in there you'll get on top of it eventually. Bless

 

[UnXmas]

Who diagnosed you with leaky gut? When I heard about this condition, it's basically an alternative medicine theory with no science behind it. I believe there is a type of increased gut permeability/ leaky gut that is recognised by conventional science (though its implications for actual diseases and symptoms are very unclear), but the "leaky gut" diagnosis has been sort of hijacked by alternative medicine practitioners, who find it very convenient to apply to all sorts of people because it supposedly has such a broad range of symptoms. Also be aware that Crohn's and UC are two the most common digestive problems there are. They'll keep "popping up" when you search the web, simply because more people have them than many of the infinite other numbers of digestive disorders out there. This is also the reason why IBD is one of the first things doctors consider when trying to diagnose or rule things out.

How thoroughly and consistently have you reacted to foods? It can be hard to pinpoint whether particular foods are actually the problem, as sometimes symptoms come on regardless of what we've eaten, plus symptoms can respond to your diet as a whole, rather than specific foods. E.g. the overall fibre content of your diet, or the overall fat content, or even simply the amount of food you are eating, could change your symptoms. So you need to look for consistency of reactions, and be aware that other factors (e.g. medication changes) may also be influencing how you feel. Plus there are a load of things we're not aware of going on in our bodies, so sometimes symptoms can change due to things we don't even know about.

I'm sorry if it sounds like I'm overcomplicating things, I just found, in my experience, that trying to chart food and symptoms is much trickier than I imagined it would be!

Weight loss, when unintentional, is a "red flag" for doctors, not necessarily for IBD, though, there are a huge number of digestive disorders out there. But if you've restricted your diet so much, that may well be causing the weight loss rather than your actual medical condition, whatever that might be.A very restricted diet should only be followed for a short period.

Endoscopy and colonoscopy should pick up the vast majority of cases of IBD. Have your doctors any kind of plan for what to do next? Some simple tests, such as blood and stool tests, could give an indication of what is going on. For example, blood tests can show signs of inflammation or infection, and some stool tests can show if there is any blood in your stool. They will not show the cause of any abnormalities, and they won't pick up every case of IBD, but they are simple ways of giving your doctors an idea of whether more invasive testing is needed.

Also, ask your doctors for help managing symptoms, if they are not already trying to do so. It can take a while to reach a diagnosis, and you need to be able to get on with your life as much as possible in the mean time. For example, are they giving you any anti-nausea meds? Were you treated with antibiotics for the SIBO, and did that improve your symptoms at all? Also perhaps you could see an allergy specialist, as it sounds like you have symptoms beyond a gastroenterologist's area of expertise?

I would definitely talk to your doctors about how you should go about adding more food into your diet, as you'll start losing energy if you're not eating adequately. Have they tested you for any vitamin deficiencies? You might also ask about supplements such as Ensure or Fortisip, which can be used either in addition to regular food or as a substitute to meals, which are simple and for many people easy to digest, and contain all the nutrients you need.

 

[2thFairy]

It certainly sounds like some form of ibd,

Based on what? Be careful when throwing those words around.

 

[apizzle417]

Thanks all for responding, even if you don't have answers your questions are just as important.

The last time I was scoped was in December, before it got incredibly bad (aka I seem to respond bad to most any foods other than the turkey, chicken, beef and carrots I've been on for two weeks now). Like I said, things got really bad after my surgery and the NSAIDs they gave me. Since then things haven't been the same and have only gotten worse.

I was told I have a leaky gut by an Integrative doctor, my nutritionist and by one of the GI doctors I've seen. Unfortunately, I am kind of up in the air as to what doctor to go to now because the first few told me it was in my head, the next few told me diet would help, and the last one (who said there's no doubt in his mind I have SIBO) told me to see a naturopathic doctor because holistic supplements have proven just as responsive to treating SIBO as western medications. The next day was when I started reacting to every supplement I was on and to most foods as well.

I was originally treated with Xifaxan in December and again in February by a doctor who doesn't understand SIBO completely as he never explained that I should also be on a very strict diet back then and that if you kill it too quickly the gut doesn't have a chance to heal, making it that much easier for the infection to return.

I just found out that my mom had colitis when she was younger so it made me curious if that could also be the case for me. I have all of the symptoms except bloody stools and severe weight loss (yes, I've lost weight but I do contribute that to my strict diet). My issue at the moment is not knowing how to move forward and I'm afraid to eat anything with the thought of pain, nausea, headaches, and other adverse reactions happening.

I have decided to see an allergist but my worry is that that will only be looking for the symptoms not for the root cause of all of this. Doctors have not ventured to explore IBD with me because I don't have bloody stools or severe weight loss. It's like they don't understand the amount of pain and discomfort I am in. With that said, no I am not on any medication to treat my symptoms at the moment except Notriptyline 25 mg for depression and the diarrhea I was having and Ketotifen for the bad reactions I was having with Histamine.

I, personally, would like to get scoped again to make sure that everything is OK...

Thoughts?

 

[UnXmas]

I developed a phobia of eating when I had so many nutritionists, websites, etc. telling me that I was reacting to all sorts of different foods. I even had food intolerance tests done - they were all a load of rubbish, as I found out later. Don't jump to the conclusion that you are reacting to foods just because symptoms come on when you happen to have eaten them. If you're not eating enough, or not eating enough of the right things, you will not help your health.

It sounds like the most important thing right now is to find the right doctor(s) for you. Are you in the US if you don't mind me asking? How to go about finding the right specialists will depend on where you live, so US members might be able to advise you on this.

Doctors might not consider IBD specifically if you don't have severe diarrhoea, bloody stools, etc. but the endoscopy and colonoscopy would still probably have shown up something if that is what you have. But mention your family history - perhaps you can ask around and find out about the medical history of your more extended family too.

If your symptoms are severe, or have gotten worse since your last scopes, doctors may feel it is worth repeating them. Or they may want to do some less invasive tests, such as imaging studies, barium tests, etc.

Have you been tested for lactose intolerance and coeliac disease? These are some fairly common conditions that would mean you may react to a number of different foods, as they are in commonly used ingredients.

I think the most immediate thing you can do to help yourself is gradually starting to add some easy-to-digest foods back into your diet. You may get some worse symptoms after eating, but it's unlikely to do you any long term harm. Set about finding some new doctors - I'd guess you'd start with your GP and maybe ask for some new referrals to get the perspective of some new doctors, if you don't feel the ones you've seen have been that helpful? Being tested for true allergies, lactose intolerance, etc. may either help identify the problem, or give you some confidence back around what foods you can eat.
I know some people also find dieticians helpful, as a dietician may be able to help you work out if there are ways of eating that will help minimise your symptoms. Also, just to add that reacting to lots of foods is not a criterion of IBD - many people with IBD do have certain foods that cause their symptoms to worsen, but it sounds like you're talking more about some kind of allergic reaction? What sort of foods have you eaten that have given you problems?

 

[apizzle417]

So I am currently seeing a dietician (though I'm not completely sure what the difference is between that and a nutritionist I just know that on her card it says dietician). She's unsure what to do because I'm having adverse reactions to so much and she attributes it to a leaky gut. I am lactose intolerant so I have been avoiding these foods already and I tested negative for celiacs.

I am currently in the US in the Washington, DC area. I'm really struggling to find a doctor that I trust and the one I did trust referred me to the naturopath and his secretary will not let me see him again. It's really odd, but I've heard that his office is really peculiar like that.

I know that when I was scoped the first time it showed nothing but, again, my biggest problems didn't start until after my surgery in April.

I understand what you're saying about eating things just to have adequate nutrition but when I get knocked on my feet for 3 days in a row and I have to work and just started school...well that's a bit frightening. I understand that it could potentially not be the foods affecting me but when I wake up feeling like my stomach isn't inflamed and bloated and that my body isn't on fire and then I eat something later that day and the pain/sensations return, it's quite difficult to not contribute the symptoms to the foods.

 

[UnXmas]

I've always seen dieticians in hospital settings, and I think the difference is that they are qualified in medical conditions, whereas nutritionists seem to work outside conventional medicine, though I'm not certain about this (and it might be different here as I'm in the UK). I know when I've had NG feedings, prescribed supplements, etc. it's been organised by a dietician.

Yours doesn't sound very helpful though! Does she believe leaky gut to be a curable condition? Does she think IBD is a possibility?

What foods do you react to, besides those with lactose? Are there some basic, nutritious foods that you haven't tested yet, that you may be able to tolerate? You said you're ok with some meats and carrots - is there any kind of carbohydrate you might be ok with? There's something called the BRAT diet - it's only supposed to be followed short-term, and it's an acronym for Bananas, Rice, Apple sauce, and Toast, which are for many the easiest things for an upset digestive system. Are you underweight at present? If so, longer term you'll need some high-calorie foods. Smooth peanut butter (if you're alright with peanuts) and avocados are healthy, high calorie foods, and are often well tolerated.

Also, have you had follow up appointments with your surgeon? If your problems worsened after surgery, perhaps they should be considering whether there was a complication from the surgery, or even a reaction to the aneasthetic or pain meds you had? But your symptoms do sound quite varied - it might help to have a team of doctors, preferably communicating with each other. I know this is very difficult to find, but when you've got multiple problems going on, sometimes you need a few different specialists, especially if it's hard to distinguish which conditions are causing which symptom.


Sorry for all the questions! From your posts, IBD wouldn't be the first diagnosis that would spring to my mind - there is a possibility you might have an atypical form of it, but with the negative scopes, that's less likely. However, I understand the need for reassurance, and if you are getting digestive symptoms, a good gastroenterologist may feel it's worthwhile to organise some more tests to check things haven't changed. I hope a forum member in the US will be able to advise you about finding the right specialists.

 

[apizzle417]

Please don't apologize! Your information is helpful. I have followed up with the surgeon but he didn't seem to think much of it, especially since I had gone in with digestive problems.

I haven't lost significant weight but when I weigh myself at night as compared to the morning, I generally have gained like 8 pounds...

I have tried bananas and had histamine responses to them and rice seem to have an effect on my blood sugar because I because really out of it and tired when I ate it...can you see why I'm afraid of food? ha

My issue with the negative scopes is that they were done when I only had SIBO and Candida not when all of the inflammation symptoms (ie histamine problems, searing, burning, sharp and dull pains) came about.

Out of curiosity, why is it that my case does not appear to be IBD related?

Sorry...I just started school and am kind of freaking out. Trying to figure out if I can handle this when I can barely handle facing the day...

 

[UnXmas]

I understand complete why you don't want to eat. You're the best judge of how things affect your symptoms, so if you're confident you're having bad reactions, avoid the food... just not to the point where you risk malnutrition, and as long as you're sure you are linking cause and effect correctly.

I think it's normal to be heavier in the evening than in the morning, simply because in the evening you have more food and fluid in your body, from what you've consumed during the day, whereas in the morning, you may well have an empty stomach and an emptyish bladder. When I was in hospital they always weighed me first thing in the morning, because that way there's less variation. If you only weigh yourself in the morning, it should give you a clearer idea of whether weight loss is a problem. But again, expect fluctuations from day to day. If your morning weight has gone down over the period of a week or two, that will probably give you a better indication.

IBD doesn't sound the most obvious diagnosis to me (not that I'm an expert!) because of the clear scopes, and because the symptoms affecting you most do not include those that are usually most prominent in IBD. Typical IBD would present with severe diarrhoea, abdominal pain of some kind, and often passing blood. I know you said you'd had diarrhoea in the past, but it doesn't stand out to me from your posts as your main trouble. IBD can also cause fevers, and routine blood tests may show signs of inflammation. I'm not quite sure what you mean by histamine reactions, but I don't remember seeing that often associated with IBD. Also you mention headaches, and it seems you have pain in a lot of other locations besides the abdomen (or did I misread this?), as well as brain fog. IBD can lead to a general feeling of malaise, but so can an infinite number of other illnesses, so when reading your posts, I didn't get the feeling that IBD was a particularly better fit for your symptoms than many other conditions.

But like I said, I'm not an expert - I'm just someone who's done a lot of reading about illnesses. There are often atypical presentations of diseases, so in many cases trying to diagnose an illness based on its symptoms is difficult.

Good luck with starting school. Don't be too hard on yourself - try to focus on school and not get preoccupied with how ill you're feeling. I know how hard that is, but you may surprise yourself with what you can achieve. Don't let this illness stand in your way any more than you have to. Get on at your doctors and dietician, then try to set all thoughts of illness to the back of your mind.

 

[Axelfl3333]

Leaky gut is not recognised by the medical community and as unxmas has said seems to be an alternative condition invented by new age practioners I would be very cautious about dr google,it's never good news,diet does not cure crohns it helps but doesn't,t cure it.go with your des advice keep a food diary and keep taking any melds you are on,there not a magic bullet and can take time to work.good luck

 

[Nancye50]

You're getting good, solid advice. Just a few things I'd throw in there. First, not all people with IBD present with diarrhea and weight loss. Second, are you carefully choosing the meat you're eating. A lot of deli meat has carrageen in it; unless it's cut fresh & otherwise high quality (Applegate is a good one but the precut stuff has carrageen). If you're in a crisis, even little things like that can contribute to the problem. Third, while it's part of the shaky science of leaky gut treatment, I highly suggest making some bone broth. Even if you just boil a carcass of a rotisserie chicken, it's good stuff on a weak belly. And lastly, I'd pursue the imaging studies as already suggested.