Hi I posted earlier about celiac and pain etc... I am 5 years post-op RNY and for over a year have been searching for answers to my physical symptoms and have seen many specialists and my bariatric group to no avail.

I am trying to pinpoint things as specifically as possible so that an answer or diagnosis can finally happen and wondered if I had any company out there with similar symptoms.

After I eat, doesn't matter what but after I eat a meal I start feeling ill, not like stomachache but like a virus or actually kind of like a Mono kind of feeling. It starts with a low grade fever usually 99.5 and then it starts to go down. I'm not having a hot flash that I know if because no sweating is involved it's just a feeling of being ill. I usually get a headache along with this and sometimes my throat is sore or irritated. I'm usually fatigued most of the day and that's probably the most annoying part of all of this. I was tested for Lyme and Parvovirus and they were negative and for Epstein Barr and it's in my system but not active for whatever that's worth! Don't recall ever having mono but that's how it feels to me now.

I've recently seen an allergist, negative, had a colonoscopy and endoscopy and they did find some irritations or ulcers in the lower intestine where it connects to the new pouch and biopsied six of them for cancer and Celiac and also with the blood test and that was negative. I've seen so many specialists, including hematologist, neurologists, and rheumatologist and nothing. I haven't seen an actually immunologist as of yet but am starting to feel like it must be some type of autoimmune disorder. I've felt like completely giving up as it's such a difficult thing to diagnose and some doctors have been wonderful but unfortunately when you see the bad ones they tend to stand out more and knock you down making you feel like an crazy menopausal hypochondriac which if it were all in my head right now put me away forever because life as it is now is not pleasant!

Also having an autoimmune disorder mixed in with RNY must also make it more difficult to diagnose at least this is what I'm finding out, I'm just pooped out in all directions! Anyway anyone have or know of anything similar please let me know, Brandy.

Brandy, Have you eliminated hypoglycimea?

Hi Miss M,

Actually in the first few years after my RNY I had a couple bouts of hypoglycemea so am familiar with how it feels and it is not the same but had considered that prior too. I think I need to look into autoimmune disorders and the relationship to the gut and RNY etc...thanks, Brandy.

Hi Brandy, my understanding of auto immune disorders begin with the gut, it happens when the intestinal wall becomes weaken and allows food particle and the like to seep through and go into the blood. then our immune system tries to invade the foreign particles but then ends up fighting/turning on it's self. I have a gastric bypass this is my third revisional surgery I started off with lap band then DS now bypass. I now have what has been described as short bowel syndrome with leaky gut. it is now becoming more and more evident in the medical mainstream that the intestines should not be tampered with as it is this tampering that causes auto immune disorders like celiac, colitis, crohns, leaky gut thyroid and many more.

If you have the time read up on leaky guy and auto immune or even leaky guy and thyroid, celiac and crohns , it's all out there.

Regards M

Wow M,

Sounds like you're getting much closer to this than any of the tons of doctors I've seen yet have! I just have a couple of questions of you don't mind when you get a chance.

So I too revised from lapband but went to RNY and that is my final surgery as of now and don't plan on changing to a third but if I need something fixed I need to know and would want it done. So my first question was why 3 surgeries was the 3rd one to RNY due to the short bowel with leaky gut syndrome?

Also who diagnosed you with this was it a different specialist other than your bariatric surgeon?

I've read up on some of these stomach related autoimmune disorders and on leaky gut syndrome but mainly it was information pertaining to people who did not have gastric bypass or a DS etc...do you have any links to information that would relate the autoimmune disorders with the RNY or other WLSs? I've searched a lot on line and have read some interesting things but finding a doctor/specialist to deal with my issues and put it all together the fact that I could have some autoimmune disorder and the relationship to the RNY is really difficult to find to say the least! I don't know if it's because I'm in more of a rural area or if it's not something studied and possibly the bariatric people are kind of in denial and it's not really their forte to work with people like us.

Also another question is what kind of symptoms were you having that lead to your diagnosis if you don't mind me asking? Every time I've seen a new specialist I get my hopes up thinking they will have the answer for me only to be let down. I'm getting my hopes up a bit now just after reading your post and it does make sense I just need to put more info together in order to search out the right person to help me in my area.

Thanks again, Brandy!!

Hi Brandy, I originally had the lapband but it prolapsed three times before I gave up on the idea of having a forth surgery to have another lap band done so my doc sent me to a friend of his who does DS. with the DS I ended up having a lot of Vitamin and mineral deficiencies as well as bile reflux and gastroparesis as the surgeon severed my vegus nerve and the food was staying stagnant in my sleeve also the sleeve formed what they call an hourglass figure where the centre of the sleeve was very narrow and wouldn't allow the food to go through so I had to have yet another surgery which was the rny, I have since long suspected leaky guy syndrome as im experiencing fevers, hot and cold flushes, feeling ill when eating, no energy bloating, gassy, rashes, vomiting, dizziness and a host of other ailments. also my ferritin has been sitting very high in the 600 mark and the surgeon doesn't know why this is so but it is an indication of inflammation somewhere in the body.

now leaky gut syndrome is associated with celiac, thyroid, colitis crohns and other diseases. I know am sensitive to foods and my thyroid is hypo mind you there is no one in our family who have either of these diseases and i have only been diagnosed since the RNY I have also gone to a naturopathic doctor who did some blood testes and diagnosed me with leaky gut. she even showed me on the slide machine how the contents of my stomach is seeping through the intestines and is going into the blood steam. at the moment I am taking zinc supplement 500mg a day along with glutamine powder mixed in Water to strengthen the intestines so as the food etc doesn't leak through into the blood stream to cause anymore immune responses. I am also waiting an appointment with my current surgeon to see what can be done as far as my ailments but have to wait till july to see him I don't think that my intestines can be lengthened in any way as the previouse surgeon removed and threw them away(which angers me because now should anything major happen I don't have anything to fall back on as far as reversals.

in the below article it describes how rny patents develop bacterial overgrowth due to lack of stomach acid basically it is this that turns into leaky gut from my understanding from what the naturopath has told me which in turn has caused the other issues

http://www.news-medical.net/health/Gastric-Bypass-Complications.aspx

Many patients then experience a condition known as achlorhydia. Achlorhydia is a condition where there is not enough acid in stomach. Patients can develop an overgrowth of bacteria as a result of the low acidity levels in the stomach.

A study conducted on 43 post operative patients revealed that almost all of the patients tested positive for a hydrogen breath test, which determined an overgrowth of bacteria in the small intestine.

The overgrowth of bacteria will cause the gut ecology to change and will induce nausea and vomiting.

Recurring nausea and vomiting will change the absorbance rate of food which contributes to the vitamin and nutrition deficiencies common in post operative gastric bypass patients.

and here is another link on bacterial overgrowth

http://digestivehealthinstitute.org/2012/08/17/sibo-diet-and-digestive-health/

here is a link about another rny patent who had problems and leaky gut syndrome

sorry I don't have much time now to provide all my links for you but will try later

http://arkansasunshine.tripod.com/testimony/testimony.html

Hi Brandy, just wanting to quickly point out an excerpt from this link for you to read

http://suethsayings.blogspot.com.au/2008/03/if-rny-is-so-risky-why-do-they-keep.html

Your second question:

have you ever assisted a patient who had complications due to the RNY surgery? And if yes, were these complications caused just because of the procedure itself or did the patients have some previous condition, such as diabetes or high blood pressure or high cholesterol level?

Yes, I have assisted many ill longer term patients and in most cases, their problems were strictly due to the repercussions of their weight loss surgery. Things like "Leaky gut" causing auto immune disorder, bowel obstructions and ulcers in the small bowel due from the leakage of stomach acid (the small bowel does not have a protective covering against acid from the stomach) and those Vitamins like Calcium which cannot be successfully supplemented resulting in maladies such as osteoporosis etc.

Problems like this are predictable because of the nature of the surgery and are not unknown in the medical profession because there is a long history with a similar surgery done to treat ulcers in the first segment of small bowel. This surgery upon which the RNY was based, is called the "Billroth II" and the mere mention of this procedure causes many medical providers to pale due to the various illnesses resulting from it, however, the surgery was considered preferable to the death which an ulcer in the small bowel would have caused.

It's a no brainer that when a major organ system is so greatly re-arranged as done in the RNY, that there will be serious repercussions from the surgery itself. Those who claim "no repercussions" are never the medical providers but rather those early term patients who are still somewhat concepting the surgery as a "magic bullet".

Thanks M!

I'm going to read the link later it looks very interesting and what I was looking for. I just need to find a doctor now who can work with me to either figure this thing out as I did not go to medical school and figure out the next course of treatment for me. Sometimes I wonder if I just drank Water all day could would these symptoms go away and how long would I survive! I know it sounds silly but when you feel like crap all the time you start to feel somewhat desperate. Anyway I know it's not an easy thing for you to post this stuff as it goes against the grain but when we do have complications like this and I'm sure we're not the only ones we need to be able to get things fixed and be able to find a doctor that's not across the world to help us. Maybe with the amount of people getting WLS there will be a new field for those who can fix the people with all the complications afterward! Complications we never ever wanted or expected! Thanks again for all your help, Brandy!

Edited April 13, 201412 yr by Brandy36

are you able to get a reversal of some kind? I'm going to see my surgeon in july to see what he can do for me, like you I'm sick of being sick and wish I never had weightloss surgery to begin with. I don't follow the trend of being sick and thankful for surgery as I'd only be kidding myself. if only I could turn back time.

Hi M,

I'm not sure what my next step is because although it's easy to find a hospital with a bariatric clinic to have a multitude of WLSs done trying to find info on reversals or "take downs" is not an easy task. I've watched videos on youtube where they physically do it.

I've seen so many doctors who basically said "it's not in my field of expertise" and I'm going in circles also trying to figure this out. In the very beginning my primary and also a nurse said it could all be gastric bypass related but we never went into detail of how, when, what or why. This is what I need to do now is find the right person/doctor to talk to about the relationship of my symptoms and if the causes are to my RNY five years ago. I've also read that the stomach you don't use anymore could be harboring bacteria which is one of the reason it's in your body and your body's immune system is fighting that. So it's hard to pinpoint where it's all coming from. I think they can biopsy your stomach but there is a lot still I don't know.

Other than myself my daughter also had this surgery and has had other issues and I have two nieces that had it so I worry about them too but they're all much younger than I am so maybe they won't have these problems God only hopes!

Anyway I know it's not easy living what I call half a life or a painful one and even if I read about this possibly happening in my future I probably still would have been stupid enough to have the surgery! I think we all get pressured into it by society etc...and it's just the way our world is unfortunately! It just shouldn't be so difficult for us post-ops to get the treatment we need when we do have issues and not ignored by everyone or passed on to the next doc for them to figure us out.

Anyway I hope the best for you and things work out and it's sad you have to wait so long for an appt. but that's part of the deal I've been facing here too! Take care, Brandy!

Hello to Miss M and Brandy, I have read all of the previous posts between the two of you. I too am struggling with leaky gut/ "feeling well". I work at a wellness clinic and am learning a lot about the link between parasites and the gut and malnutrition that leads to leaky gut. I'm not sure which came first the chicken or the egg but I'm curious how your feeling and what course you've taken to feel better?

For all readers, including doctors, I suggest that, in cases where a person gets feverish after a meal, you check to see if the person has a sensitive vaso-vagal system. I am NOT talking about the syndrome where people pass out. I am only referring to a *sensitive* system; meaning it causes reactions in your body that an average person normally wouldn't have. In my case, I get tackicardia easily. But, I also get feverish after meals.

Hi, I was wondering if Brandy36 has any update? I've been experiencing the SAME symptoms and I'm having a very hard time with it. Did you ever figure out was going on, get a diagnosis? Thank you!