[Cyndi DeHoff]

Hi Jodi!   Yes is the answer. I was having stomach pain and upper espophagus irritation and chest pain that landed me in the ER. More than once. I finally went 100% gluten free and have to be very careful about cross contamination.  For example I can’t eat gluten free bread in a restaurant if they put it in a toaster that toasts regular bread because it will get gluten on it and make me sick.

Having an auto immune disease is like buy one get one free my neuro said to me so he was not suprised that gluten was such a problem for me..

I also try to cut down on the sugar.  I was able to completely go sugar free/grain free for a year and felt really good in regards to MG symptoms and no migraines.   I used Swerve for a sugar replacement in baked goods etc.

Then the pandemic hit and I fell off the wagon and have a sugar addiction again ,so i need to work on that again!!

 

 

 

 

 

to be very careful

 

 

 

[Cyndi DeHoff]

Yes, I can get calf cramps usually in the morning.  I also will get  painful ab cramping that begins under the ribs. It usually happens in the afternoon when my muscles are fatigued.  I have to sit down immediately and the pain will subside.  A heating pad helps too

[Cyndi DeHoff]

I have found intermittent fasting works well for me. I usually fast for about 16 hours. I find it’s just nice to not think about food during that time.  I also went gluten free

I love to eat steak but it quickly makes my jaw very weak and sore. I have learned to eat ribeyes and only eat the very outside part which is really tender and easier to chew.  I try and eat lots of fruit and veggies and some chocolate everyday

[Cyndi DeHoff]

I usually have to lay on the couch with my feet up for about 30-60 minutes.  I watch tv because reading is usually out because of double vision.  I typically don’t sleep because I feel like my brain is awake, however, everything from the neck down needs to rest.

[Cyndi DeHoff]

I can relate to both of you and your experiences.  I also would add that my relationship with my own sister has changed.  We were close and always enjoyed doing things together despite not living in the same town.  We would make a point of getting together several times a year until I got sick five years ago and that has basically stopped.  We talk on the phone and text now and then, but I am no longer included in her plans for trips or activities etc.  I am able to travel, but I need to take a vent, meds, rest a lot during the day and plan for the unexpected etc.  I have no problem doing what I can and saying I will catch up with you later.  I feel tossed aside because I cant do physically what I used to be able to do.  I also have Celiac disease and my sister eats like crazy and its just one more thing I have to consider outside of the house.    They say that friends can come and go, but I didnt see it coming with my own sister.