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Needing A Little Input

beth01

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beth01 Enthusiast
beth01
Posted

I was diagnosed three months ago.  I haven't had any whole corn or rice since my diagnosis until last week.  I have had corn and rice that were in pasta/chips/flours and so on but not a bowl or rice or an ear of corn.  I decided last Monday night to have a bowl of white rice with salt and pepper and was cooked in some stock that I had made.  It did not sit well with me, nausea and stomach pain.  It passed in a few hours so I decided to try again the next day ( had some left over and wanted to be sure the rice was what made me feel ill the night before), the same thing happened.  By dinner time I was feeling a little better so I made a hot dish out of chicken, stock, almond milk, potatoes and some potato buds to thicken my sauce I made.  I stupidly cooked it in a 9x13 Pampered chef baking stone that I have had for years.  Probably not a good idea since they are so porous and it has countless things made with gluten in it.  This was 8 days ago mind you. About an hour after I ate I started feeling really poorly, stomach pain/nausea/vomiting/diarrhea - my usual glutening symptoms.  This just seems to keep lingering on and I am having some things going on that I never had.  I can't handle temperature difference right now.  It is 77 degrees in my house and I am sitting here in winter clothes covered with a blanket and still have goose bumps, no fever at all and haven't had one all week.  I have also been getting visual disturbances, black spots that are never in the same place or the same eye for that matter.  This has been going on for days.  I haven't had a migraine since my diagnosis but I have had a lingering headache for the last four days.  I have been having my normal muscle/joint/nerve aches and pains but thankfully they haven't gotten too bad since I have been on two different meds ( neither of them narcotics) for pain the last month ( I had been having uncontrolled pain, the doctors are thing Fibro), I can't imagine how crappy I would feel without them. I have also been so unbelievably tired, I can't hardly stay awake.  The brain fog is ridiculous right now.  I have been talking/typing dyslexic, if I can do it at all.  So far it has taken me 45 minutes to type this with all the mistakes I have been making.  Last night I asked my BF three times in a span of a "House" episode if the apple sauce I made was good.  I went to town to go to the store today and ended up going to the bank instead and never got the damn milk.

 

I have scoured my house top to bottom looking for some hidden source of gluten that is getting me, I can't find anything.  Nothing has changed recently, no new meds or beauty products, nothing.  I know people get new symptoms some times and I know it can take longer some times to recover but it seems like it isn't getting any better. I haven't been eating any processed foods lately just because my belly has been so tender and just sticking to my safe foods that don't upset my belly.  I don't feel bad enough that I think I need to go to the doctor, I have an appointment next Friday to be seen for all the pain issues, I feel pretty bad but it isn't unbearable. 

 

I guess I really don't even know what I want to accomplish by sharing this...if I want someone to tell me I am just taking a longer time to recover and I just need to wait it out, or if I should be worried because this happened to someone else and I need to be looking for something besides gluten.. I am stumped, I've got IAS not IBS lol.  Any input would help.  My kids are so bored with their momma that can't do anything but sit on the couch.

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icelandgirl Proficient
icelandgirl
Posted

I was diagnosed three months ago.  I haven't had any whole corn or rice since my diagnosis until last week.  I have had corn and rice that were in pasta/chips/flours and so on but not a bowl or rice or an ear of corn.  I decided last Monday night to have a bowl of white rice with salt and pepper and was cooked in some stock that I had made.  It did not sit well with me, nausea and stomach pain.  It passed in a few hours so I decided to try again the next day ( had some left over and wanted to be sure the rice was what made me feel ill the night before), the same thing happened.  By dinner time I was feeling a little better so I made a hot dish out of chicken, stock, almond milk, potatoes and some potato buds to thicken my sauce I made.  I stupidly cooked it in a 9x13 Pampered chef baking stone that I have had for years.  Probably not a good idea since they are so porous and it has countless things made with gluten in it.  This was 8 days ago mind you. About an hour after I ate I started feeling really poorly, stomach pain/nausea/vomiting/diarrhea - my usual glutening symptoms.  This just seems to keep lingering on and I am having some things going on that I never had.  I can't handle temperature difference right now.  It is 77 degrees in my house and I am sitting here in winter clothes covered with a blanket and still have goose bumps, no fever at all and haven't had one all week.  I have also been getting visual disturbances, black spots that are never in the same place or the same eye for that matter.  This has been going on for days.  I haven't had a migraine since my diagnosis but I have had a lingering headache for the last four days.  I have been having my normal muscle/joint/nerve aches and pains but thankfully they haven't gotten too bad since I have been on two different meds ( neither of them narcotics) for pain the last month ( I had been having uncontrolled pain, the doctors are thing Fibro), I can't imagine how crappy I would feel without them. I have also been so unbelievably tired, I can't hardly stay awake.  The brain fog is ridiculous right now.  I have been talking/typing dyslexic, if I can do it at all.  So far it has taken me 45 minutes to type this with all the mistakes I have been making.  Last night I asked my BF three times in a span of a "House" episode if the apple sauce I made was good.  I went to town to go to the store today and ended up going to the bank instead and never got the damn milk.

 

I have scoured my house top to bottom looking for some hidden source of gluten that is getting me, I can't find anything.  Nothing has changed recently, no new meds or beauty products, nothing.  I know people get new symptoms some times and I know it can take longer some times to recover but it seems like it isn't getting any better. I haven't been eating any processed foods lately just because my belly has been so tender and just sticking to my safe foods that don't upset my belly.  I don't feel bad enough that I think I need to go to the doctor, I have an appointment next Friday to be seen for all the pain issues, I feel pretty bad but it isn't unbearable. 

 

I guess I really don't even know what I want to accomplish by sharing this...if I want someone to tell me I am just taking a longer time to recover and I just need to wait it out, or if I should be worried because this happened to someone else and I need to be looking for something besides gluten.. I am stumped, I've got IAS not IBS lol.  Any input would help.  My kids are so bored with their momma that can't do anything but sit on the couch.

Oh Beth...I really feel for you...I do. I'm so sorry. (((Hugs)))

When I've been glutened it has taken me a full week to feel better...I do know that everyone is different though and that you are still in the early stages of healing. It is so hard and frustrating to be searching for answers all the time isn't it? I know it is for me. My kids go back to school August 1st and I feel so bad that there have been so many days where I wasn't feeling good.

beth01 Enthusiast
beth01
Posted
  • Author

I have my kids every day during the day right now since their dad works and that way he can save on child care the days that are his.  Last week I had to have my mom take my kids for three days that I was supposed to have them because I couldn't stay awake, one day I slept for 22 hours was awake for 2 and then slept another 12 more. I didn't see them for a week.  Now this week they were here and I haven't done anything but make them meals.  We had movie night last night and I fell asleep before the credits were over. They keep asking me when they get to go to daddy's house, I know they are bored.  That in turn makes me even more sad..... Just been a really frustrating week.  I am supposed to be moving in a month and I am starting to think I am going to need to hire someone to pack for me.

 

Thank you for the hug though.

icelandgirl Proficient
icelandgirl
Posted

I have my kids every day during the day right now since their dad works and that way he can save on child care the days that are his.  Last week I had to have my mom take my kids for three days that I was supposed to have them because I couldn't stay awake, one day I slept for 22 hours was awake for 2 and then slept another 12 more. I didn't see them for a week.  Now this week they were here and I haven't done anything but make them meals.  We had movie night last night and I fell asleep before the credits were over. They keep asking me when they get to go to daddy's house, I know they are bored.  That in turn makes me even more sad..... Just been a really frustrating week.  I am supposed to be moving in a month and I am starting to think I am going to need to hire someone to pack for me.

 

Thank you for the hug though.

Wow, that's rough.  When I started getting really sick last year my mom decided to move back here full time...I'm so thankful.  There have been many days where she's taken the kids while I was feeling bad.  but I feel guilty.  I told my husband tonight...I can't be the mom I want to be and it's so hard. I feel like I can't really give good advice on stuff yet because even after almost 6 months I'm still struggling.  :(

beth01 Enthusiast
beth01
Posted
  • Author

Hugs to you then too.  All we can do is get out of bed every morning and get back into it at night.  What happens in between we can only have so much control over.

SMRI Collaborator
SMRI
Posted

Have you been tested for Mono?  I'm gathering from your "hot dish" you are in MN and I know that it was going around MN not long ago and if not Mono--Lyme or West Nile?

nvsmom Community Regular
nvsmom
Posted

You may have been glutened or you may still be recovering.  At 3 months gluten-free I felt much worse than I did before I went gluten-free.  My body went haywire.  At over 2 years gluten-free, I still feel like I am recovering... or at least I hope it will get better than this.  LOL ;)

 

Has your thyroid been tested?  That cold feeling is often associated with hypothyroidism.  TSH, free T3 and free T4, and TPO Ab are good tests for that.

 

If you were glutened, L-glutamine is thought to help with intestinal/muscle healing.

 

Hope you feel better.

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beth01 Enthusiast
beth01
Posted
  • Author

In Wisconsin.  I am feeling a little better today, but I also haven't eaten anything yet either.  My TSH is fine just had it checked last week. In fact it's the best it's been in years, amazing how things changes when you know you are being brain fogged.  I have a pill container now and three people to let me know when I haven't taken my meds rather than try and remember on my own.  I have had mono in the past and I honestly haven't gotten bit by one mosquito this summer.  I have only left my house once in the last week.  I haven't even been outside, that's how crappy I have felt.  I think I just got glutened.

 

Nicole- I think I will try the l-glutamine.  I know it gets worse before it gets better and I think that's where I am at now.  Just need time.

 

Thank you all. 

nvsmom Community Regular
nvsmom
Posted

(hugs) It can take a long time for your system to stop the inflammation and making auto-antibodies. I know at one year gluten-free, and I know I am gluten-free, I was still not testing normal on all celiac tests, so I know my body still had issues due to that.

 

Hang in there.

Austin Guy Contributor
Austin Guy
Posted

Could have been the carrageenan (thickening agent) in the almond milk or the potato.  Patatoes are members of the nightshade family and give some people, including me, a lot of grief.  Might want to look these up. Look at Dr. Weil's take on carrageenan.  Open Original Shared Link

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