Immunologist and Eosinophilic Esophagitis

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Yesterday was my 6 month follow up with my Immunologist/Allergist.  I continue to have daily urticaria (hives) and regular bouts of angioedema.  I often wake up with my face, eyes and tongue swollen.  There is no apparent reason.

Whenever I exercise, I break out in hives, whenever I shower, same deal, so I can only have a lukewarm shower.  Which sux.  Anytime my body gets hot, I break out in hives.

As directed by my immunologist, I take two 180mg telfast tablets every morning, and two in the afternoon, along with three phenergen tablets at night.  This helps, but doesn’t stop the allergic attacks.

I’m also on 15mg of prednisone, which should relieve all of these symptoms.

I had an endoscopy back in December, and that confirmed that my Eosinophilic Esophagitis is still active.  My esophagus is corrugated and swollen and eroded.  The biopsies are unequivocal – I have eosinophilic esophagitis, but my immunologist has never heard of anyone being on prednisone and still having eosinophils in the gastric tract.

She has no idea what to do.  If I continue the way I am, I will need a feeding tube.  Not appealing.

I have been slacker lately, my gastroenterologist told me to forget about diet, because it wasn’t helping anyway.  So I’ve had occasional cheese, occasional wheat.  That’s been enough to cause damage to my esophagus.

So now I have no choice but to go back on the strict elimination diet and go back to my dietitian.  I’ve been down this road before, and its so much harder to do again, knowing that it didn’t work before, and that this is just an ‘in desperation’ move.   The diet is very restrictive. I eat fruit, vegetables, some chicken and some beef, and those are mostly pureed to mush.  Very unsatisfying.  I can also have oats and rice noodles.  I can’t have most processed foods, because they all contain something I’m allergic to.  All my meals are made from scratch, no takeaway, ever.  Its takes all the fun out of eating.  Food is pure nutrition, no pleasure.

So tomorrow I will begin again, strictly.  In the meantime my immunologist is going to discuss my case with the local immunology guru, apparently he has written textbooks on allergy and has about 20 years more experience than she has.  She wants to see if he’s ever had a patient with EoE who is non-responsive to prednisone.  She is still convinced that there is something else going on, but she has no idea what.

She was concerned that my most recent bloodwork showed an elevated white cell count, but I’m kinda used to that.  My GP called though, I had to go see her this morning for review.  She couldn’t find any signs of infection (the usual cause of an elevated white cell count) so she prescribed antibiotics just in case, and I need to get some more blood drawn next week to check that it has resolved.   Hopefully its as simple as that.

I also have macrocytosis (larger than normal red blood cells).  My B12 level is marginally low (one point below the bottom of the ‘normal’ range) so she told me to start taking B12 supplements.  Obviously my diet is not very balanced, given how restrictive it has been, so I guess it makes sense that I might be B12 deficient.

Apart from that, nothing changes.  The usual “you have to taper your prednisone” warnings.  My usual protestation that I can’t function on less than this.  Roundy roundy.  I agree to drop to 12mg, and I can do that within days.

I can’t see the point of being alive if I am bedridden though.  Its really not living.

Quality vs quantity.  A very hard equation, when you don’t know what the ‘quantity’ number is.  Will prednisone take five years off my life?  Ten?  More?

No one knows.

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