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Fellow Celiacs - please help:

Sorry if this reads long, brevity is not my long suit;-)  I have 2 main issues.

(1.)  I see a lot of folks writing about weight GAIN.  I have the opposite problem:  weight LOSS.

(2.)  Dealing with Celiac “brain fog”.

I am a middle-age onset, “high-antigen” Celiac with no other sensitivities or conditions, such as lactose intolerance, or diabetes, nor its evil twin, hypoglycemia.  Neither do I experience (knock wood) dermatitis herpetiformis!  All my blood-work, including all major systems, cardio, liver, kidneys, cholesterol, enzymes, sed-rate & blood pressure are normal.  Not bad for a 60-year old!

I DO have mild osteo-arthritis, and I DO work long hours in a high-stress environment.  But I don’t skip meals.  I have brisk 20 minute walk every day for exercise & generally feel great most days.  I have pretty high physical & mental energy levels, especially for some one my age.

BUT...I DO struggle with classic Celiac “BRAIN FOG” a good portion of the time, which adds to my stress-levels at work.  Where a premium is put on performance & high-quality output in a competitive, creative-artistic field of endeavor.  I love my work, but it increasingly leaves me physically & perhaps to a degree, mentally exhausted.  More & more I find I must get lots of rest to keep that “the fog” at bay.  Am I just getting old?  In terms of time, I can still outwork my younger colleagues without really trying.  I've always been a classic Type-A go-getter.  But now, battling the brain fog, that now doesn’t mean my IDEAS are any better!

The brain fog bouts were becoming more the norm, so I asked my doctors (both internist & neurosurgeon-physiatrist) to check me out for Alzheimer's and/or dementia-onset.  Vascular dementia runs on BOTH sides of my family, but with onset in the LATE 60s, NOT late 50s-early 60s where I am.  Tests were negative for Alzheimer's (thanks HaShem), but inconclusive on the vascular dementia.  The neurosurgeon has charted “a degree of cognitive impairment” over the past year.  He thinks it’s either the result of years of a high-stress career, or very-very EARLY onset dementia, or the Celiac having done (and still doing)  its mischief. ...Or, a combination of all of the above!  I did go undiagnosed probably for about 2 years, and who knows how long I was being affected by it before full-blown Celiac onset.

Regarding my weight loss.  My weight became dangerously low (128 lbs) before I was finally diagnosed after 1-1/2 years of constant diarrhea & slow-but-steady weight loss.

However, after first being diagnosed about a year ago, I seemed to rebound and put on about 20 pounds, just by scrupulously avoiding any exposure to gluten.  I have always been light of build anyway, with my “normal” weight being 148 pounds at 5’-10” tall.

Of note, this 20-pound weight-gain came during a month-long medical leave of absence, where I rested a lot and experienced virtually ZERO stress.

I am a cautious label-reader, cook when I can (always dinner), & eat only very safe prepared foods for breakfast & lunch, including only a few very safe restaurants.  I also snack pretty heavily in the evenings with pure, all-natural corn chips & salsa or popcorn.  Not a big sweets eater.  I a fair amount of brown rice, potatoes, protein-rich main dishes. I take natural, gluten-free supplements & the few medications I take have been certified gluten free.

I can’t seem to tolerate “raw” foods or lettuce (I used to love salads) as they seem to irritate my colon & provoke diarrhea (perhaps an indicator of underlying. concomitant colitis here?)

Have been “sprued” (exposed) about three times over the past year.  I have a bad day or two of diarrhea, which is quickly & easily stopped with OTC Lomotil...

But I understand the damage may been done, even after diarrhea is stopped, the cycle of mid gut necrosis can still be running  it’s course.

My initial diagnosed included not only blood tests, but also an EGD, which revealed fairly extensive necrosis.

I wonder if I am "permanently damaged" & having chronic malabsorption...  EXCEPT for that initial period of rebound in weight at soon as I removed the gluten when I was initially diagnosed.

Any guidance out there?  I realize we’re all different, but does it just take awhile for the mid-gut to fully heal, if it ever does?

Thanks for your patience & your time!  I will gather response & summarize report back to the group.

Robert

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