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BallardWA

By BallardWA
in Coping with Celiac Disease

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BallardWA Rookie
BallardWA
Posted

I just want to thank each and every person that shares their knowledge and personal experiences on these boards. I always find comfort here. This is such a lonely thing, and I honestly don't know how I am going to manage this for the rest of my life. I posted here last week that all of my tests came back negative, but that my NP said that it didn't mean I wasn't gluten intolerant. I called my primary doctor to give her the news, and she kinda, sorta suggested that this is hypochondriasis, and is continually trying to put me on Zoloft. I have no desire or need to alter my brain chemistry. Anyway, my conversation with her got me questioning my condition again, so I did it - I ate a hard roll. Three days later every darn symptom returned - the intense stomach pain, anxiety, chills, night sweats - so I guess I have my answer. I glutened myself. Anyway, I returned here and with just a few searches, had all of the symptoms, including the delayed reaction confirmed. I hope that I get better soon, anyone have any info on how long it takes to un-gluten? Again, thank you all.

Karen, Seattle, WA

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Lisa Mentor
Lisa
Posted

Hi Karen,

Hey, next time go for something a little more decadent instead of a hard roll. :P

Recover time is different for everyone. Try some stomach settling things like bananas, rice, apple sauce and tea. Imodium helps with the diarrhea. But, generally it just has to run it's course.

Hope you feel better soon.

YoloGx Rookie
YoloGx
Posted
I just want to thank each and every person that shares their knowledge and personal experiences on these boards. I always find comfort here. This is such a lonely thing, and I honestly don't know how I am going to manage this for the rest of my life. I posted here last week that all of my tests came back negative, but that my NP said that it didn't mean I wasn't gluten intolerant. I called my primary doctor to give her the news, and she kinda, sorta suggested that this is hypochondriasis, and is continually trying to put me on Zoloft. I have no desire or need to alter my brain chemistry. Anyway, my conversation with her got me questioning my condition again, so I did it - I ate a hard roll. Three days later every darn symptom returned - the intense stomach pain, anxiety, chills, night sweats - so I guess I have my answer. I glutened myself. Anyway, I returned here and with just a few searches, had all of the symptoms, including the delayed reaction confirmed. I hope that I get better soon, anyone have any info on how long it takes to un-gluten? Again, thank you all.

Karen, Seattle, WA

Good luck with your healing. You should read the book the Dangerous Grains. Apparently gluten isn't really that good for anyone plus a lot of people get gluten intolerance exhibiting in other ways.

It can take only 2 weeks to 6 months or more to notice the good effect of an anti gluten diet. Though 2 months is the usual amount of time before you notice real benefit.

Yolo

cruelshoes Enthusiast
cruelshoes
Posted

Karen - I know it's a bit of a drive for you, but I wanted to invite you to our gluten-free support group. It's at Marlene's Market in Federal Way on Monday February 18 at 7:00. We are going to have some great samples to try, and next month we may even have a dietician come and speak. Here's the info on Marlene's:

Open Original Shared Link

I know what you mean about celiac isolating you. It is nice to be in a group (or on a forum) where others are dealing with the same issues.

oceangirl Collaborator
oceangirl
Posted

Hi. I'm sorry you are having a tough time- it can be so incredibly frustrating! I am almost 2 years gluten-free and it has only been since last week that my tTg number FINALLY is in the normal range. (High normal, but normal) During all this time I have been gluten, soy, corn, dairy, nightshade and egg free. (Yes, I've eaten rocks...) And I STILL have mysterious glutenings even with a gluten-free house and never eating out! BUT! The good news is that you will feel better and you will have more good days than bad and there is no pricetag for that. Also, I can now eat moderate amounts of dairy; I've put corn back in and some nightshades (tomatoes) and egg-whites are no problem, not sure about yolks yet. So it won't be too restrictive forever. (except for the evil gluten)

I wish you good luck and know that others here are rooting for you and know what you are going through.

Take heart,

lisa

JNBunnie1 Community Regular
JNBunnie1
Posted
Hi. I'm sorry you are having a tough time- it can be so incredibly frustrating! I am almost 2 years gluten-free and it has only been since last week that my tTg number FINALLY is in the normal range. (High normal, but normal) During all this time I have been gluten, soy, corn, dairy, nightshade and egg free. (Yes, I've eaten rocks...) And I STILL have mysterious glutenings even with a gluten-free house and never eating out! BUT! The good news is that you will feel better and you will have more good days than bad and there is no pricetag for that. Also, I can now eat moderate amounts of dairy; I've put corn back in and some nightshades (tomatoes) and egg-whites are no problem, not sure about yolks yet. So it won't be too restrictive forever. (except for the evil gluten)

I wish you good luck and know that others here are rooting for you and know what you are going through.

Take heart,

lisa

Egg yolks are good, that's where all the vitamins are.

Yeah, next time have cake! Screw the hard roll.

But seriously, try to take extra vitamins and drink lots of mint tea, but this too shall pass. It will probably take about as long as it did when you quit gluten to feel better, maybe less. And good for you, not listening to your doctor's BAD advice!

I also have some lovely glutenfree cake ideas.

BallardWA Rookie
BallardWA
Posted
  • Author

[ Marlene's Market in Federal Way on Monday February 18 at 7:00

Thanks Colleen,

It is a bit far for a Monday night in possibly bad weather. Is there anywhere I can keep an eye on your group's gatherings, and maybe pick one in the Spring?

K.

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cruelshoes Enthusiast
cruelshoes
Posted
Thanks Colleen,

It is a bit far for a Monday night in possibly bad weather. Is there anywhere I can keep an eye on your group's gatherings, and maybe pick one in the Spring?

K.

Yeah, I figured you wouldn't want to come odown this far, but I figured I'd mention it anyway. We are just starting up our group (we've had 2 meetings :) ), so we don't have a website yet. I can definitely let you know when we have one up. We are meeting the third Monday of the month at Marlene's at 7:00.

Here are some links to other support groups in the area. Maybe you can find one closer to home.

Open Original Shared Link

Open Original Shared Link

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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