Like Many, At The End Of My Rope.

[louise1974]

First, I apologize if I am in the wrong forum, I am not great with the internet.

 

I am so incredibly frustrated.  I see I am in good company!  Over the past year I have been on this wacky medical journey and I just don't know what to do at this point.

 

As briefly as possible (which probably won't be that brief), I had RNY gastric bypass in Sept 2012.  it was very successful, i lost 100 pounds.  In April of 2013 I had a surgery related complication, internal hernia.  it was caught quickly and I had surgery to fix it.  While in the hospital I am pretty sure I had IV antibiotics. 

 

One month later I had seven days of severe diarrhea.  It was BAD.  It resolved but since then i have had terrible gastrointestinal problems.  incomplete bowel emptying, constipation, multiple (15+) BM a day, gas, severe bloating, some cramping.  I went to my surgeon, GP and bariatric center about it.  None of them think it is related to the weight loss surgery.  Last Nov 2013 I went off gluten.  i saw good improvement but still had lots of gi problems. 

 

In March 2014 I decided to do a more formal elimination diet.  For about 2 weeks I ate primarily meat and non starchy veggies.  There was some improvement.  And then, I woke up one morning in excrutiating pain.  It felt like severe heartburn in the throat.  i was nauseaus and in agony.  I went to the ER, my weight loss surgery surgeon came and did an endoscope, everyone assumed it was surgery related.  He found that I had severe esophagitis, my esophagus was almost swollen shut.  he said it looks like the surface of my esophagus was like fish scales and would flake off if he touched it.  He thought it was candida and took a biopsy and sent me home with diflucan and liquid lidocaine.  But the biopsy came back and did not show candida.    He had no idea what it was, the path report said sloughing esophagitis and he suggested I go home and google it.  He did offer to spell if for me.  so helpful.

 

I saw a naturopath who said that it probably was candida (though the stool test was negative, a week after the diflcan so that might ahe affected the result) and treated me with natural supplements and probiotics for candida.  He also did this ear prick test and said I as intolerant to potato and gluten and could not eat dairy and grain together.  But I question the validity of the test and when I eat dairy all by itself I am a mess so, how can I trust that.

 

Since then I have tried to stick with the elimination diet as strictly as I can.  It is very very difficult, as I am sure you all know.  Here is what I have discovered, I do best when I only eat meat and non starchy vegetables.  When I do that I have one normal bowel movement a day.  Gluten, dairy, corn, and rice all seem to give me problems.  But soemtimes it just feels like such a crap shoot (ha!)  It is very hard to treat yourself like a science expirement.  There are so many factors and I am making myself crazy trying to control for all of them.  My eating has been very clean for days and I have been feeling good.  And then today out of nowhere my stomach is a total mess again. it is so discouraging.  

 

i have a history of eating issues, disordered eating, cycling between severe restriction and then binging.  So all of these restrictions of my food messes with me emotionally.  Today was a bad day.  I have been working really hard on staying with a diet that makes me feel better but to have it all go to hell makes me so defeated and I am sorry to say i responded by eating a bunch of stuff that is certainly going to make me sick, fried cornmeal mush (we are reading Little House with my kids) and a gluten free muffin (full of rice no doubt). 

 

I am so so so frustrated.  I keep thinking, maybe this is just all about the weight loss surgery but my fellow wls folks say this isn't normal.  Simple carbs can cause dumping after weight loss surgery but not for days and days.  you can also develop lactose intolerance but I seem to be reacting to all dairy. 

 

So, I don't know what my next step should be.  I can just eat nothing but meat and veggies.  But it makes me feel crazy to have no idea what is happening.  is it an allergy?  candida?  celiac? all of the above?  Oh, and did I mention, hard core perimenopause has set in.  Aweomse.  I am 39 so it is a bit early but nothing outrageous.  the doctor I have been to are lovely people but shockingly unhelpful.  Except for the naturopath, he is helpful to an extent but i question how scientifically valid his approach is.  I think I am looking for support.  And advice.  Thank you for making it to the end of this very long post.  i appreciate any replies. 

[1desperateladysaved]

Find help that you trust.  Be tested for celiac using a full celiac panel.  You must be eating gluten for that.  Work on healthy living.  You can move in the right direction toward better health.  You may need aids such as digestive enzymes, but I would find someone that knows about the weight loss surgery and how to be as healthy as possible after it.

 

Dee

[louise1974]

Find help that you trust.  Be tested for celiac using a full celiac panel.  You must be eating gluten for that.  Work on healthy living.  You can move in the right direction toward better health.  You may need aids such as digestive enzymes, but I would find someone that knows about the weight loss surgery and how to be as healthy as possible after it.

 

Dee

I don't know if I can handle going back to gluten for three months.  Yikes.  I am so so so much better off it.  I think I do need to find help I trust.  It is like I am out here alone just winging it.  i need a doctor that will help me with this.  Maybe I should start with a pcp and go from there?  I am in a pretty rural area so pickings are slim.  the bariatric surgeon I used knows lots about the surgery but little to nothing about celiac or esophagitis or food intolerances/allergies.  It is pretty common in the weight loss surgery world to have this problem.  the bariatric surgeon will say, i don't know, this isn't related to surgery, talk to your pcp/specialist whatever.  And that doctor says, I don't know anything about this surgery, talk to your surgeon.  I think I just need to not give up and find someone to help walk me through this. 

[FruitEnthusiast]

No, you are not the only one who gets to the end of their rope!  It passes though, or it comes and goes as you figure things out. I know it's easy to say, but the more you stress about it, the harder it is on your digestive system.

 

I've started actively doing everything I can to reduce stress (that's new for me) and it's helping. For me a lot of clutter had built up at home (just one example) and it was driving me nuts, so I'm working on it a little at a time. Try to make reducing stress a priority in any way you can think of.

 

Probiotics are important too along with the digestive enzymes already mentioned.

 

Don't stop trying things, you will figure out what your issues are and get them figured out!

[louise1974]

No, you are not the only one who gets to the end of their rope!  It passes though, or it comes and goes as you figure things out. I know it's easy to say, but the more you stress about it, the harder it is on your digestive system.

 

I've started actively doing everything I can to reduce stress (that's new for me) and it's helping. For me a lot of clutter had built up at home (just one example) and it was driving me nuts, so I'm working on it a little at a time. Try to make reducing stress a priority in any way you can think of.

 

Probiotics are important too along with the digestive enzymes already mentioned.

 

Don't stop trying things, you will figure out what your issues are and get them figured out!

Thank you so much.  I am so much further along than I was.  At least now I can pinpoint certain foods that mess me up.  I dont know WHY but maybe it is just enough to know for right now.  And it is quite specific actually, dairy causes its own unique brand of distress as opposed to gluten.  the probiotics have helped a ton.  The naturopath gave me some tincture for digestion but I don't kknow what is in it.  i will google digestive enzymes but if there is a specific kind that would be realy helpful info for me.  And the stress, yes, huge.  Today was a bad day.  Up all night with a croupy baby, home all day with exhausted croupy baby.  I have HAD it.  I am heading to bed and starting over tomorrow.  A friend gave me the name of a good allergist.  i am thinking of going there, if they could help me pinpoint what are possible allergens that would help immensely. 

[FruitEnthusiast]

i will google digestive enzymes but if there is a specific kind that would be realy helpful info for me. 

 

I use a digestive enzyme that I learned about on this site called "Digest Gold" by Enzymedica. It works well for me, but it's pricey. I tried another one by the same company called "Digest" which is cheaper but I didn't notice a difference until I switched to the better ones. It was money well spent. I don't know of any others. You could start a new topic asking for other brands if you want some more options.

 

I take them each day mainly when I eat meat or something rich. If it feels like something is sitting in my stomach, I'll take one and it always helps.

[GottaSki]

Welcome Louise!

I've been at the end of my rope many times.

Thankfully, I found this forum when I first learned the words celiac and living gluten-free....many members generously gave me another length of rope to keep me going each time I've been in need over the years

As others have suggested...keep looking for answers. I happen to be doing fairly well just now so you can tie a bit of my rope onto yours!

Hang in there