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Chasing Symptoms for years

Cryren8972

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Cryren8972 Newbie
Cryren8972
Posted

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. 

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etbtbfs Rookie
etbtbfs
Posted

Forget the doctor!  You've diagnosed yourself.

Cryren8972 Newbie
Cryren8972
Posted
  • Author

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 Grand Master
knitty kitty
Posted

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 Grand Master
cyclinglady
Posted

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 Newbie
Cryren8972
Posted
  • Author

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

cyclinglady Grand Master
cyclinglady
Posted

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.  

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Cryren8972 Newbie
Cryren8972
Posted
  • Author

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 Newbie
Cryren8972
Posted
  • Author

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

Cryren8972 Newbie
Cryren8972
Posted
  • Author

At the least, gluten sensitive....

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

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      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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    • knitty kitty
      My only proof

      By knitty kitty · Posted

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