Tales of a Misguided Mommy

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The food issues from hell. Or, why I'm quitting all food forever

For as long as I can remember I've had stomach issues.  When I was younger I used to throw up until I was bleeding.  I used to get these insane cramps.  I went to the doctor so many times.  They told me to cut out gluten, that I was lactose intolerant or that I was overweight (back when I was a size 5 at 115 pounds).  Finally they decided I had endometriosis.  Stage four.  The bad kind that needed surgery.  I was assured the pain would go away. 

It did not.

They did another surgery and found more endometriosis.  In fact I had three surgeries for it.  The final surgery they found the endometriosis had traveled from my uterus out into the lining of my bowels and urinary tract.  That surgery was done by a world renown doctor who also nicked my urinary nerves making me have to turn on the water any time I wanted to pee for about 5 years.  I still have issues with that and I still have pain.  

I suffered through a colonoscopy and they found nothing. Eventually I gave up whining about it because really how many times can people hear me bitch about the same thing? About six months after having Brandon the pain got worse.  So bad I ended up in the hospital.  Along with the pain was unending heartburn.  Heartburn so bad I was waking up puking yellow acid nightly. The ER doctor told me I had an ulcer.  I became irate telling him I don't have ulcers and DAMMIT find out what is wrong.  After an ultrasound or...something they discovered my gallbladder was full of sludge and super damaged.  So off I went onto my fourth surgery in five years.  

The pain remained. The heartburn got worse.  I tried eliminating foods.  I blamed avocado.  Then I blamed all stone fruits (peaches, plums, apricots).  Losing my gallbladder made it more difficult to digest foods that I used to have no trouble with.  Doctors told me to lose weight and the heartburn would go away. Then I cut out gluten and my whole life changed.  The heartburn went away right away.  I assumed I was fixed.  However slowly I noticed the stomach pain was still there, the bloating, the vomiting and other symptoms.  Such as going 5 days without having a bowel movement or having the opposite effect where I would go to the bathroom twenty times a day.  I would often find blood in my stool and even had lab work done on it (that was a fun collection). The lab work for those two days showed no blood in my stool so the doctor told me to leave it be.  

On top of it all I am severely anemic and low on B12.  The anemia was becoming so bad that the doctors decided I needed a hysterectomy.  They left me with one ovary.

The pain, bloating and vomiting were still there. I bothered my doctor endlessly until she sent me to a GI doctor.  I told him all of my symptoms.  I told him about cutting out gluten and how much it had helped with the heart burn.  The doctor said, "I doubt there is anything actually wrong with you I've never met a fat person who had allergies, there is no way you could be this fat and have a gluten problem."  I had to restrain myself from killing him.  He didn't want to do any tests and tried to dismiss me.  He gave me a diet called the FODMAP diet (Google it) and told me that I probably had a problem processing fructose.  His idea was for me to just do this diet and lose weight and everything would be fine.  I persisted and he agreed to do a stomach biopsy.  The day of the biopsy in front of the nurses he repeated that nothing would be wrong with me and this was all in my head.  The funny part is they weren't able to sedate me.  I have a shitty weight metabolism but I have an over active medicine metabolism.  I burn off medicine quickly.  After four shots of Verced when I was still wide awake he informed me he was proceeding with the biopsy as I was wide awake.  I was scared at first until I realized that being awake would allow me to hear him look in my stomach and say, "oh wow, this is bad, we have a problem here."

The results were eosinophilic esophagitis.  Here is where it gets interesting.  The immediate treatment for this is to get allergy tested immediately.  Secondly they should give you an inhaled steroid to stop the ridging and swelling.  My doctor went another route.  He told me to stay on the FODMAP diet because most likely something on that list was what I was allergic to and then I would lose weight and the problem would go away.  I got upset and asked why he wasn't going to do the follow up tests.  One was a stomach emptying test and the other was a breath test to see how my body was reacting to the stuff I was eating.  He refused both tests and told me to stay on the diet.  This diet restricted beans, onions, garlic, all fruits besides berries, tofu, nuts, avocado, dairy, asparagus, and so so much more.  The issue with this is that I'm basically vegan with the exception of a little bit of cheese and sour cream.  So, I don't eat meat, eggs, fish or dairy and now he's taking away beans, tofu, nuts, cheese, yogurt, sour cream and all healthy iron rich veggies.  I got very sick after that.  I was getting no protein, no iron, NO ANYTHING.  I started to get depressed about it.  I went to a nutritionist (which opened an entire other can of worms) and she got very concerned because if the doctor was so concerned with my weight he would have known that putting me on a diet that restrictive would cause my body to hold onto every ounce of fat and not lose any weight. She was pissed.  She put me on a lactose pill and told me to add the dairy back in.  She also told me to get to an allergist immediately.

Because my asshole GI doctor wouldn't refer it they put me on a month long waiting list.  When I finally got to the allergist and told him what the other doctor had said all hell broke loose.  He said the FODMAP diet was bullshit and that I should have had a rush allergy test done.  He decided that day we would start with food allergies.  Then the following week we would do environmental allergies.  He said he would bet I'm allergic to a local environmental pollen and that breathing it in daily is what is causing the bulk of the damage.  He said I should have immediately been put on medicine to repair the damage.  He also said that after all these years, all of my symptoms this all should have been handled much sooner.  

He did the first allergy test for food and it came back that I am allergic to peanuts, almonds, hazelnuts, brazil nuts, pistachios, barley and soy.  It appears I've been allergic to these things my entire life.  Most likely my first reactions would have been vomiting but since I was small the adults around me would have just chalked it up to an infant/toddler spitting up or being sick.  The doctor said I would have developed a sort of immunity to it preventing me from having anaphylaxis but not enough to prevent me from getting sick.  When Brandon became allergic to peanuts I cut them out of my life which would explain why later when I ate them again not around him I would vomit, my body was no longer used to it.  Then when the other doctor took me off dairy and put me on almond milk I was suddenly forcing almonds on my body far more then normal which would be cause for my recent excessive stomach issues.  Plus the fact that I just discovered Nutella last year.

I still have to have the environmental test done but for now I'm trying to learn a whole new diet.  I can now eat gluten, but gluten with soy in it brings back the heartburn and problems.  I was trained to not eat a whole mess of foods and now I have to relearn an entire new allergy and memorize all new food labels.  I feel sick about 70% of the daylight hours and at least 5 times a week I wake up with stomach issues.  I'm starting to lose faith in the medical professionals. I'm frustrated at how many doctors would just tell me to "lose weight" even when I was 15 and had a pretty rockin body. I'm exhausted by all of this.  All food is now scary to me. Going to eat anywhere without nutrition facts is scary.  Eating in public is scary because I never know when I'm just going to start throwing up or worse, have horrible stomach pains and swell up.  Sometimes foods bother me to the point my skin actually swells and I grow a dress size and sometimes I can eat the same foods and have no response.  

People are tired of hearing me complain about this phantom illness so I stop complaining which means they assume the problem is gone, which means when I do complain about it again they either think I'm pretending or just full of shit.  In reality I just stop talking about it because I know if I'm sick of thinking about it people have to be sick of hearing about it.  Wednesday is the environmental allergy appointment.   After that I should get some medicines to help the swelling in my stomach and throat and hopefully walk away with a clear idea of everything I'm allergic too.  But that still doesn't tell me what is wrong with my body, why I have trouble processing some foods and not others, why foods I'm not allergic to make me sick and foods I am allergic to, often do nothing to me.  I have to find a new GI doctor but in order to do that the old one has to sign off on it, and since he's still on his, "just lose weight and stay on this restrictive diet" kick he is refusing to sign me over to another doctor.

I give up on food.  I'm going to live on water and Tic Tacs.


Love, Misguided Mommy

posted on Oct. 29, 2012

Comments

Oct. 30 2012
beylit said…
Oh these sorts of things make me so very mad. Dismissive doctors are the absolute worst in the world, especially when they just assume your weight is the only real issue, because you know fat people can't get sick, they are just fat. Allergies are tricky things. When I was very young I was always sick, to the point that my mom and doctor began to think I was a hypochondriac. Thankfully I had a wonderful doctor who had the good sense to have an allergy test done and it turned out I was allergic to everything environmental. Sometimes it would really bother me and I would be home with flu like symptoms for days, and other days for no reason I was fine. No real rhyme or reason. 8 shots a week for four years and it mostly fixed my problems. I hope your asshole doctor lets you out or you figure out a way to fire him and get a new one. People like that deserve to have their licenses pulled. Hopefully things will get better.
Nov. 01 2012
postmormongirl said…
As someone who attended graduate school at a medical college, I can attest to the fact that many doctors are their own worst enemies. It's a huge problem when doctors dismiss symptoms they don't understand as being psychological problems - or when they propagate fad theories as legitimate medicine. I'm so sorry you have to deal with all this - I wish you the best of luck
Nov. 04 2012
Rachael said…
I'm so sorry. I hate hearing stories like yours where doctors aren't doing their jobs and are discounting what their patients are telling them. YES, there are crazy hypochondriacs in the world, but a lot of people can feel when something is really wrong, and that it's not getting better and that should be taken into account. I wish that doctors in general had a more holistic approach instead of just treating symptoms.
Jan. 17 2014
Amy said…
I actually had similar symptoms to those you described and after a 5-year odyssey (that also involved harmful and completely unnecessary surgery) I was diagnosed with ulcerative colitis. The worst symptoms were bloody stools and major, major heartburn that kept me up at night. My doctor said that my large intestine was so inflamed that the inflammation had also traveled to other parts of my digestive tract, i.e. my stomach and my pancreas. The thing is that inflammatory bowel diseases like Crohn's and UC usually come with a lot of food intolerances and malabsorptions. Your allergies could just be part of an underlying autoimmune issue. I'm curious whether you had explored that possibility?

 

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