Chasing Symptoms for years

[Cryren8972]

In my 30s (I'm now in my 40s), I was alarmed when I was falling asleep at stop signs.  It happened more than once, and I couldn't keep my eyes open if I sat for more than a few minutes anywhere.  I went to a couple of doctors, both of which basically said "You're overweight and depressed".  Well...I was only a size 12, so I knew I wasn't SO overweight it would cause me to sleep.  I also didn't feel in the slightest depressed...I felt exhausted.

I went for my yearly exam at the gyno, and told him about my symptoms...he took a blood test and found ANA in my blood work.  I didn't have insurance at the time, so I didn't go to a RA doctor, even though my doctor was pretty sure that's what I had.  He even prescribed medication.  The medication made me feel bad enough that I explored diet instead, and had some pretty awesome results.  I did an elimination diet, which of course, eliminated wheat out of my body.

Any time I started to feel the achy joints, I did the elimination diet and felt better.

Fast forward a few years.  It was becoming evident (to me), that I had a food allergy of some sort.  I would have extreme abdominal discomfort after eating.  I assumed it was dairy, and DID feel some better when taking that out of the equation, but not completely better.  So I had a skin allergy test done.  Nothing.  Just dust mites.

It just so happens I started a cleansing program which asked that you drop dairy and gluten from your diet.  Which I did.  I felt GREAT again!  I actually wanted to exercise and do things through the day.  I no longer felt as if I were pushing through.  When the cleanse was over (30 days), I went back to my old diet.  I ended up in the hospital with colitis in the large intestine.  They remarked that it was the most inflamed colon they had ever seen.  

Back on the cleansing diet I went...but this time, I ate dairy.  And felt fine. 

I was out eating, and noticed that while I was eating, my nose and throat were itching.  My nose actually went numb.  I thought that odd, but examined my food to see what could be the cause.  There was a breading on my french fries.  Hm.  Next day, diarrhea, fatigue, and bloated stomach.

I was actually pretty excited to be on to something.  This was the first time that I had a clue. 

So I started logging symptoms. 

The strangest was that my thyroid would swell a few hours after eating gluten (the doctor had noticed my swollen thyroid, but all tests came back normal). My throat would itch.  Nose would itch and go numb, almost as if it were swelling rapidly.  I would have swollen lymph nodes the next morning and ear drainage.  All things I had noticed before but didn't think much of.  I was excited because NOW I have an answer!

So I dropped gluten.  And felt amazing.  But I can't tell you how many times people have "wheated" me and acted as if it were OK, because I don't have a formal diagnosis.  So I have an appointment Tuesday.  I know that the likelihood of being diagnosed as celiac are slim....but I want SOMETHING on paper.  I ate wheat last night to prepare for the test, and my face became visibly swollen and red while I was eating.  It became difficult to swallow (I had noticed this with pasta, and had assumed EVERYONE had that issue) the more I ate.  This morning...I feel HORRIBLE, and I don't want to eat any more gluten ever.

Any advice as to how I should approach this with my doctor?  He already rolls eyes at me because all of my tests have come back normal for the random symptoms I had prior to this discovery.  I'm not a hysterical person...I'm very analytical, and I tend to under exaggerate as opposed to over exaggerating.  Sometimes, I wonder if that's not the problem. 

[etbtbfs]

Forget the doctor!  You've diagnosed yourself.

[Cryren8972]

LOL!  I actually feel the same way.  It's odd that I feel I need a doctor to tell everyone else that I have an issue.  I just need to get the courage to tell people that I just. can't. have. it. 

[knitty kitty]

Be careful! Sounds like you may have a wheat allergy as well. You said your face and throat swelled up. This could block off your airway! You need to relate this to your doctor, ask about an epi pen, and allergy retesting. 

[cyclinglady]

I agree with Knitty Kitty, you should consider testing for celiac disease (gluten challenge)  after you get tested for a wheat allergy (there is no such thing as a gluten allergy per my research).   Another thing to research would be Eosinophilic Esophagitis.  A few of our members have this issue. 

I hope you figure it out!

 

[Cryren8972]

I had a skin allergy test, and showed no reaction to wheat.  Should I ask for a blood test? 

[cyclinglady]

Did you look up EoE?  Try researching Mast Cell Activation Syndrome.  It has allergy symtoms like face and throat swelling, hives and anaphylaxis, abdominal pain and other symptoms but you test negative on allergy panels.  EoE is linked to Mast cell Activation syndrome.  Those two diseases require epi pins.  

[Cryren8972]

I looked up both of those.  I don't think EoE fits...it's strange, because it seems to be my thyroid that swells.  I even lose my voice to a degree...it gets shaky, and it's almost painful to talk.  The thyroid goes down on day 2 or 3 after wheat exposure. 

I DO have difficulty swallowing, but it's only after eating pasta and bread...and large amounts of it.  I've had that issue as long as I can remember, so long in fact, that I assumed it was normal...until it happened worse when I was without wheat, then reintroduced it. 

If I eat small amounts of wheat everyday, I have less severe symptoms, but it's a low level of symptoms every day.  For instance, my nose will itch ALL day.  I've even had people comment on me scratching my nose often.  Also thought that was a normal for me, until my nose didn't itch after dropping wheat. 

I don't get the typical rash, mine is more like hives.  It will be a patch on my chest, or back....that will itch like mad and get white dots all through the rash. Fortunately for me, that only lasts for about an hour. 

[Cryren8972]

I have an appointment tomorrow.  I will update what happens...

[Cryren8972]

At the least, gluten sensitive....

She did order the tests for Celiac, so now I wait....