Been awhile. Condition still SNAFU

[PatJ]

Just getting in lots of what she can tolerate in many small meals is probably best,

Low blood volume is thought to be a problem with CFS. Frequent small meals may help lessen fatigue and OI by reducing the amount of blood drawn to the stomach for digestion. If I eat a large meal I can barely stay conscious so I rely on 10 small meals per day (also required to prevent hypoglycemia).

Low stomach acid and poor pancreas function might be a cause for weight loss due to poor digestion. I'm male, 5'10" and got down to 98lbs a few years ago. It didn't matter what I ate, I just couldn't gain weight. I then found that digestive enzymes helped reduce fatigue after eating, and Betaine HCL (with pepsin) helped even more. I now average 115-120 lbs; still low, but better than lower.

If your wife is tired after eating a small meal, especially a high protein meal, then she may have low stomach acid. If she's tired after eating a large meal then try a meal 1/6 the size of normal to see if the fatigue lessens.

 

[Little Bluestem]

I had a time that I ate almost nothing but mars bars and there was a time I needed the eat at least two eggs a day.

@meeKO - have you talked to a nutritionist? When my Dad became underweight, calories became the priority. Things like mars bars are appropriate. I heard recently that doctors are giving the starving children in Syria straight glucose. Of course, you do not want to cause hypoglycemia. I think worldbackwards had it right with eating many small meals of whatever she tolerates/craves.

 

[Gingergrrl]

Sorry if this has already been said but when I could not tolerate any food earlier this year due to MCAS, I drank water with dextrose and sea salt. The dextrose powder was very hard to find (in my city) and my dad finally found it for me at a store that sells supplies to make beer of all places.

There were many days that all I consumed was the water with dextrose/salt mixture but it helped to keep me alive and I'd recommend it highly if food cannot be tolerated. Of course this can only sustain itself for so long but for a few days at a time, this worked for me.

 

[meeKO]

Thanks @redrachel76
I'm looking into getting some and trying it. Looks interesting so here's hoping it helps with some gut issues.

 

[meeKO]

Hi @Little Bluestem
Thanks for the tip. We're giving her a nutritional supplement that contains lots of vitamins as well as feeding her lots of things she can tolerate and a few things that push the boundaries. Slow and steady though. Hoping to edge those scales up. Hope your Dad's doing better.

 

[meeKO]

Sorry if this has already been said but when I could not tolerate any food earlier this year due to MCAS, I drank water with dextrose and sea salt.

How were you diagnosed for MCAS? Has any treatment helped since?
How are you going these days?
All our best.

 

[Gingergrrl]

How were you diagnosed for MCAS? Has any treatment helped since?
How are you going these days?
All our best.

@meeKO Sorry I somehow missed this question yesterday. I was diagnosed by the combination of clinical symptoms and high histamine and prostaglandins on blood tests. Last May it got to the point that I could not eat any food without stage 2 anaphylaxis (only water) and was hospitalized. My MCAS got much better due to finding an amazing MCAS specialist. I briefly had a two day horrific flare-up while trying to taper off of Cortef but my docs put a stop to that and with the full Cortef dose back on board, I was able to eat 2x today without any reactions, Thank God!

Am still doing horribly overall and I apologize I have not read this entire thread so am hoping this is helpful and not redundant. Thank you for the good wishes and if your wife cannot eat or tolerate food (for any reason) but can tolerate the dextrose/salt water, it is a good stop-gap measure that literally saved my life along with a few other things back in May. I will read the thread and if I think of anything else, will add it. God bless you for being such an amazing husband for her.

 

[meeKO]

Hi @Gingergrrl

Last May it got to the point that I could not eat any food without stage 2 anaphylaxis (only water) and was hospitalized.

Good lord! What a nightmare this must be. So sorry to hear how hard it's been.

Am still doing horribly overall and I apologize I have not read this entire thread so am hoping this is helpful and not redundant.

Yes very helpful and much appreciated. My wife can't even read or write much at all so I know this is a big effort you and anyone who replies so I'm very grateful.
I hope you stay on the improve.
Thanks so much.