Leaky gut
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My story is the same as @PeachyCarol. I could not even lift my hand to eat because the RA settled into my right shoulder. I had to almost lower my head close to my plate to eat or eat left handed. I also couldn't wash my hair or even brush it. I was walking with a limp because both knees and my ankles were over the top inflamed. I was crying in the Rheumatologist's office for help. Humira has made the biggest difference in my life, I got my life back. So stop with fear mongering, please. I don't need the constant reminder of side effects. There is enough of it on the TV.0
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This discussion is of great interest to me. My doctor wanted me on Humira several years ago, but when I read the literature I got scared and didn't go on it. At the time I worked in a building that included a nursery school, and sick little kids were always showing up in my office. And of course the cancer risk is there.
I never knew anyone who was on it, so it's nice to read accounts from people here who are having success. I'm willing to reconsider. Is anyone who's currently taking it willing to give me more details of why and how long they've been on it, and what to expect? Private message is just fine if you don't want to post it here.
Does anyone know of anyone who's actually gotten cancer from Humira or Enbrel?0 -
@64crayons I sent you a PM.0
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Thanks @queenliz990
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@PeachyCarol and @queenliz99 I think my approach to managing Lupus is in a similar vein to you both.
I take multiple drugs to combat the symptoms, including the introduction of Mycophenolate there are similar possible side effects from both DMARDS and the use of Biologics and yes of course they can be serious but as you have sagely pointed out Carol the risk has to be countered with the benefit and the long term consequences of leaving auto-immune diseases to continue on their merry way causing harm when they are left untreated.
@GaleHawkins I have read your story on the forums a lot. I am happy that you have found the relief you have through changing your diet but I am deeply concerned that the continuance of warning around Enbrel may cause others to not take a life changing drug that could really be of benefit to them.
You made a personal choice and that is your right.....but I must ask whether you feel it really necessary to list the worst case scenario every single post is beneficial....I certainly DON'T enjoy being reminded as often as I am and in all honesty I have wondered if there are lurkers around who decide to follow you and NOT take the medication their Doctor prescribes them and their quality of life is then significantly impacted.....and not for the better.
My life would suck more than it does without the supportive therapy I receive...I guess bottom line is there would be no quality to my life at all give the severity of my symptoms....I am ever hopeful that with time this last line of defence treatment helps me to the point where I too can get out in the World like @PeachyCarol has as she is my personal hero and role model for continuing to strive and thrive under the most difficult of health circumstances.
Op - gut problems and diet is a tricky beast to get a handle on. As you have seen in this thread it is seems impossible to get consensus as to whether it is a 'real' condition or not. Nevertheless, the symptoms described I have are they are made worse or better through diet for me.
I have to be very vigilant about not indulging in trigger foods namely grains, avoiding gluten in particular, I have found that lactose free milk in small quantities tolerable and I am able to eat cheese and home-made greek yoghurt but I have to be careful about the amount and frequency. Too much seems to be a problem for me....I have found that my days of eating a large steak are completely over and stick to smaller serves of chicken, lamb, and pork with occasional fish but week to week we maintain a semi-vegetarian lifestyle. Too many brassicas, mushrooms and capsicums are also a problem...
Over the years I have experimented and failed many times to get a clear enough picture to make a difference, I think, fingers crossed I may have found my sweet spot now I hope you find yours.
All the best.0 -
Thanks for adding your input @HippySkoppy. I too get concerned about lurkers being overworried about the risks of biologics by them constantly being restated.
For some perspective, I'd like to point out that there is a far greater lifetime risk of dying in a fatal car accident (far, far greater in fact) than there is of getting cancer from a biologic.
And yet, somehow, I don't think any of us fear getting into a car.
Food for thought.0 -
PeachyCarol wrote: »Thanks for adding your input @HippySkoppy. I too get concerned about lurkers being overworried about the risks of biologics by them constantly being restated.
For some perspective, I'd like to point out that there is a far greater lifetime risk of dying in a fatal car accident (far, far greater in fact) than there is of getting cancer from a biologic.
And yet, somehow, I don't think any of us fear getting into a car.
Food for thought.
This^^^ Thank you @HippySkoppy0 -
MarziPanda95 wrote: »'Leaky gut' is a complete myth. If your gut leaked you'd be in the hospital with blood poisoning! Sounds like you have a food intolerance. I agree with those that suggested trying an elimination diet to test what triggers it. Might be IBS.snickerscharlie wrote: »Please see a medical doctor about your symptoms. Leaky Gut isn't a recognized ailment and the only people who will tell you otherwise want to sell you 'remedies' for this non-existent 'condition.'
Maybe Wikipedia can help:
Leaky gut syndrome is not a recognized medical diagnosis, the claimed symptoms are generic and there is no medically validated test.[2] According to National Health Service England,
There is little evidence to support this theory, and no evidence that so-called 'treatments' for 'leaky gut syndrome', such as nutritional supplements and a gluten-free diet, have any beneficial effect for most of the conditions they are claimed to help.[2]
Quackwatch calls leaky gut a "fad diagnosis". Stephen Barrett writes that its proponents use the alleged condition as an opportunity to promote a number of alternative health remedies including diets, herbal preparations, and dietary supplements.[6]
Skeptics and mainstream scientists generally agree that most marketing of treatments for leaky gut syndrome is, at best, misguided, and at worst, an instance of deliberate health fraud.[2]
This is a quite rude. Please do some real research - not wikipedia "research." Pubmed is a reliable source for peer-reviewed medical articles
Variations in the level of intestinal permeability (leaky gut) are:
(1) a reason that if you are taking oral vancomycin you MUST be tested regularly for the level of vancomycin in your bloodstream - vancomycin, taken orally, does not reach the bloodstream at all. If you have higher than normal permeability it does, sometimes in levels that are high enough to produce life altering side effects. (My daughter was on vancomycin for a year as part of a study out of Massachusetts General, (a tad more reputable source for medical information than Wikipedia). The study required her to have blood tests every 12 weeks because the underlying disease often involves a higher than normal permeability (i.e. leaky gut).) Had she had significant levels of vancomycin in her bloodstream (as some develop because of leaky gut), she would have been dismissed from the study.
(2) one of the main hypotheses for the known connection between my daughter's first chronic disease and the liver disease that the research study was targeting.
Those are the two I am most familiar with because they are the ones that affect me directly - both of which have been conveyed to me by numerous of the specialists (gastrointestinal and hepatology) across the country with whom we have been in contact in connection with the rare liver disease she has.
I have no idea whether the OP has leaky gut - but to dismiss the concept as fantasy when it is a medically recognized fact, with growing importance as we learn more about the gut microbiome - is offensive.
Do you have any pubmed articles to link?0 -
My pleasure @PeachyCarol and @queenliz99....I couldn't keep silent any longer over this matter.
Just another thought in regards to no no's for me and my gut problems is alcohol...
it just isn't worth the bathroom issues.....and this is long before any drug interactions made it a problem.
Just a thought OP.0 -
I don't have celiac disease or a "leaky gut" but I do have an autoimmune disease called eosinophillic esophagitis. My personal experience has been that removing gluten from my diet was a very good choice. My bloating has gone way, way down and I feel much better overall. Without the bloat I was suffering from I can breathe easier and work harder at the gym and during my runs. I'm not an expert and neither are the people who will tell you that you don't need to avoid gluten unless you've been diagnosed with crone's disease. Talk to your doctor about your symptoms and try it if you think it might work for you. It's actually extremely easy, most foods are gluten free. I don't miss bread very much and I've found a quinoa based pasta that I really like so I'm good with the small sacrifices I've had to make. Good luck!0
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I'm the op. Thanks all for your suggestions.
To clarify, I follow a super low fodmap and grain free diet. And sugar free. And lactose free. Get the point? I'm so restricted and still don't feel well.
Dr just suggests a low histamine approach which I will try now and hope for the best.0 -
Best wishes OP0
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3dogsrunning wrote: »
Do you have any pubmed articles to link?
Here's a sampling - since you didn't specify a particular area of interest:
Vancomycin - two case reports: http://www.ncbi.nlm.nih.gov/pubmed/19840535; http://www.ncbi.nlm.nih.gov/pubmed/6853034
IBD and permeability/leaky gut: http://www.ncbi.nlm.nih.gov/pubmed/26582965, http://www.ncbi.nlm.nih.gov/pubmed/26512799
Connection between liver disorder & permeability/leaky gut: http://www.ncbi.nlm.nih.gov/pubmed/26556989
Metabolism and gut permeability: http://www.ncbi.nlm.nih.gov/pubmed/26506213
Intestinal permeability and Parkinson's: http://www.ncbi.nlm.nih.gov/pubmed/26457021
IBS and gut permeability: http://www.ncbi.nlm.nih.gov/pubmed/25734736
As you can see from the sampling, it is a fairly hot topic these days.0 -
@queenliz99 @HippySkoppy @PeachyCarol I am glad your lives are better because of the Rx meds.
I too was willing to risk the diseases that can come with the 100% chance of developing a deficient immune system. I researched cancer treatments used in Europe and Japan and actively implemented two different protocols to see if they had any short term side effects should I develop cancer from starting the Enbrel injections.
In my case there was nagging sense there was a way to get the pain relief that Enbrel could offer by just changing my way of eating. It worked within 30 days and I was able to tell the doctors NO to Enbrel. It also cured my 40 years of IBS and enabled body to start to regain its health at the age of 63.
My point for those averse to increasing their risks of failing health long term due to taking this class of drugs that they may want to research a new way of eating that might offer them the same pain relief without the known side effects. I do not advise others to do what I have done. I do suggest to others if interested in diet options to do the research and then weigh the Pros and Cons before acting any any direction.
Will cutting out all grains and most all sugars work for another to manage autoimmune disease pain?
There is no $$$ cost or health risks to find out yes or no.
I do not blindly follow any medical, religious or financial advice from others. With the knowledge at the fingertips of any one reading this post each of us can successful research any subject that we desire. That was not even possible for healthcare professionals just 30 years ago.
Being in the 1% category for cancer and the 100% category for a wrecked immune system are not odds I wanted to take when I learn there was zero to be gained in my case by using Enbrel. Even my way of eating to manage my pain lowers my risk from both cancer and heart disease.
Best of success with any treatment/diet plan one selects. We are all different and there is more than one road to improving health.
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@GaleHawkins Thank you for replying.0
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I don't have celiac disease or a "leaky gut" but I do have an autoimmune disease called eosinophillic esophagitis. My personal experience has been that removing gluten from my diet was a very good choice. My bloating has gone way, way down and I feel much better overall. Without the bloat I was suffering from I can breathe easier and work harder at the gym and during my runs. I'm not an expert and neither are the people who will tell you that you don't need to avoid gluten unless you've been diagnosed with crone's disease. Talk to your doctor about your symptoms and try it if you think it might work for you. It's actually extremely easy, most foods are gluten free. I don't miss bread very much and I've found a quinoa based pasta that I really like so I'm good with the small sacrifices I've had to make. Good luck!
Had to chime in. My 12yo was diagnosed with eosinophilic esophagitis a year ago. Horrible chronic vomiting, pain, diarrhea for a LONG time. So far he's had 7 upper endoscopies and a few more to go and has been on a strict, controlled diet to determine which foods are causing this. It's caused by food allergies (in kids - not sure about adults). I was so sure he had celiac because we have a strong family history but I was wrong. So thankful he's been super healthy since changing his diet. Pretty sure it's allergies to peanuts and dairy.
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PeachyCarol wrote: »May I just also note, as an aside? If you have a degenerative autoimmune condition and your doctor wants to prescribe a biologic?
Take it.
The risks are minimal.
The rewards are great.
Signed,
Grateful Humira User
I'm on Remicade for Crohn's. It is a miracle drug0 -
If you have an autoimmune disease your immune system is already messed up. It is attacking your body. The only relief I have had is suppressing it with a biologic (Remicade) and imuran. I rather not be running to the bathroom 20x a day, lots of blood loss, severe pain, etc and not be able to leave the house. Yes I have trigger foods but in a flair all food is triggering even water. Cutting out gluten and sugar is not a cure as there are no cures for any autoimmune disease.0
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singingflutelady wrote: »If you have an autoimmune disease your immune system is already messed up. It is attacking your body. The only relief I have had is suppressing it with a biologic (Remicade) and imuran. I rather not be running to the bathroom 20x a day, lots of blood loss, severe pain, etc and not be able to leave the house. Yes I have trigger foods but in a flair all food is triggering even water. Cutting out gluten and sugar is not a cure as there are no cures for any autoimmune disease.
Needs to be repeated.
Because science.
I carry the gene for Crohn's and passed it to my son. So far, he's not expressing it. (I don't express it either, but I have celiac disease) He does have IBS though, so his gastro is keeping a watchful eye. I wouldn't hesitate to treat him with a biologic if things ever came down to it in the future.
I'm glad you've experienced relief with Remicade.
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Biologics are usually last resort drugs. I was very very sick when I was diagnosed as I ignored symptoms for years. (I have IBS too and just thought my symptoms were due to that or lactose intolerance). I was hospitalized for 34 days straight from my colonoscopy and my Dr put me on Remicade right away. I didn't feel anything on it until my 6th dose. Tmi it makes me have formed bowel movements about 75% of the time. I hadn't had this in years. I went from 20x a day to 3-4 x a day.0
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Autoimmune problems drive doctors and patients both crazy.
It took me 40 years to realize mine pain and GI distress was caused directly or indirectly by diet in my case.
chriskresser.com/pills-or-paleo-preventing-and-reversing-autoimmune-disease/
While I am not into a "named" diet I did find this lady's thoughts and the comments that followed generally are in line with what I have found by experience and research since Aug 2014.
Have any of you with autoimmune issues gotten your Vitamin D level up into the 70-90 range and noticed improved disease control?
After being stuck in the 20's for years I finally got my Vitamin D level up into the 90's this year after I learned about and started taking Vitamin K2 (note not Vit K1)
The doctor below mentions the lack of Vitamin K2 being associated with autoimmune diseases.
drjohnday.com/9-signs-you-may-have-vitamin-k2-deficiency/0 -
Vitamin d definitely helps. Lots of studies recommending it for Crohn's0
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I was wrongly prescribed medication. It severely injured me and completely altered my life. I now have chronic nerve pain in my face, skin issues, and severe food intolerance, among other issues. Been trying to recover for 4 months. I wish I had never gone to the doctors.0
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mine gets leaky, when I get into the drink.0
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"Leaky gut" is an imaginary disorder.
Imaginary disorders are often harder to treat than real ones. 0 -
3dogsrunning wrote: »
Do you have any pubmed articles to link?
Here's a sampling - since you didn't specify a particular area of interest:
Vancomycin - two case reports: http://www.ncbi.nlm.nih.gov/pubmed/19840535; http://www.ncbi.nlm.nih.gov/pubmed/6853034
IBD and permeability/leaky gut: http://www.ncbi.nlm.nih.gov/pubmed/26582965, http://www.ncbi.nlm.nih.gov/pubmed/26512799
Connection between liver disorder & permeability/leaky gut: http://www.ncbi.nlm.nih.gov/pubmed/26556989
Metabolism and gut permeability: http://www.ncbi.nlm.nih.gov/pubmed/26506213
Intestinal permeability and Parkinson's: http://www.ncbi.nlm.nih.gov/pubmed/26457021
IBS and gut permeability: http://www.ncbi.nlm.nih.gov/pubmed/25734736
As you can see from the sampling, it is a fairly hot topic these days.
Always read your sources.
First two articles focus on renal failure and insufficiency for proper clearance of the drug.
The IBD reference suggests a mechanism for increases "ovalbumin transport, probably by augmented transcytosis" and not an increase in general permeability...0 -
There are gut issues people can have. Especially from being overtreated with antibiotics. I don't know anything about leaky gut. But, the symptoms a person is having can be addressed. And for some issues there are breath tests to test for various bacteria over growth or imbalance or presence.0
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MarziPanda95 wrote: »'Leaky gut' is a complete myth. If your gut leaked you'd be in the hospital with blood poisoning! Sounds like you have a food intolerance. I agree with those that suggested trying an elimination diet to test what triggers it. Might be IBS.
Leaky gut is a bad name for chronic intestinal inflammation that causes a variety of real medical problems. I started in the same place you are. But getting my son scoped because he'd been vomiting for a year and SEEING the inflammation and, in a relative, the villi that were GONE because of autoimmune response (she has celiac and 'leaky gut') made me a believer.
It is called leaky gut because when it's really bad the cells are so swollen, the barriers can break down - no poop doesn't leak out, but the barrier is more permeable than it should be.
Different people also react differently to the same problem. My husband and sons are unable to digest tyramine (husband and one son) and sensitive to gluten (all), milk dairy, and eggs (one son). For my husband, it led to diverticulitis (he had to have a foot of his intestine removed), chronic bloating, and diarrhea. For another son, it led to gas. To the third, incredibly brain 'fog' caused by the tyramine buildup resulting in functionally low dopamine and serotonin levels and severe chronic pain and sensitivity to light and sound. He almost failed out of school until he changed his diet.
Measurably, after diagnosis with sensitivities and removing them from his diet my husband lost 12" (yes really) on his belly. My son with chronic migraines is finally getting better. He can now think again.
Like lots of real medical problems, people get on a bandwagon, there are quacks out there, and lots of people say they have a problem that really don't. That doesn't mean the original issue isn't real and doesn't need treatment.
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If you haven't pooped, of course you're going to have a weight gain. There are many possible remedies, which may or may not work for you: fizzy water, magnesium citrate, more or less fiber, yoga (especially poses that involve your abs and back, and twisting), probiotics (which haven't been shown to work all that well for IBS-C, sadly), and a variety of pharmaceutical options. Medications can also cause constipation.
Btw, there is research that supports leaky gut as a contributor to disease, so don't fret when people poo-poo the idea. Send them to do their own Google Scholar search.0 -
If they saw chronic inflammation on the scope wouldn't that be IBD?0
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