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zenjess1980

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zenjess1980 Contributor
zenjess1980
Posted

A bit of back story. I'm 35 years old. Had a positive celiac panel several years ago, but negative biopsy. Was more or less told it was not mandatory I go gluten free, but it may help with various conditions i have. I ended up going gluten free for about a year, did notice a difference but not significant enough to outweigh the doctor's words of "not mandatory." Fast forward to now... I'm seriously revisiting the idea of going gluten free- for good. To be honest, having a hard time coping. While I'm hopeful, I also know it's something I didn't take seriously enough in the past to stick with. Since remission from non hodgkin lymphoma, my outlook on life and seriousness about my health has become a forefront issue. Yet, i keep hearing the words my doctor said echoing in my head... any words of wisdom? Thanks.

-Jessica 

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frieze Community Regular
frieze
Posted

 

decided my response was too harsh....

cyclinglady Grand Master
cyclinglady
Posted

Jessica, 

Are you for real?  There.  I said it.  

Happy to help, but I can tell from the way you write, that you are not stupid.  Do not tell me that you have not googled lymphoma and celiac disease.  If your doctor has not spoken to you about this connection, then I recommend getting a lawyer.  

If you are real, then I am sorry.  Lots of strange folks have posted on celiac.com weaving all sorts of crazy tales. 

I wish you well. 

SLLRunner Enthusiast
SLLRunner
Posted

Jessica,

Get yourself another doctor, one who celiac savvy, and have your medical records sent over there.  Listen to @cyclinglady, too. 

kareng Grand Master
kareng
Posted

I think on one of your posts, on another thread, you said you had the rare intestinal lymphoma that Celiac can cause?  And you have a bunch of other diseases - a couple that being gluten-free is considered more than just helpful.

zenjess1980 Contributor
zenjess1980
Posted
  • Author

Umm, what did I say? And my doctors never mentioned the connection between lymphoma and celiac. Until today at my integrative medicine doctor appointment. To be quite honest, I'm confused. Why the harsh responses? I'm just here looking for support like anyone else. 

 

Ps. I happened to stumble on the celiac/lymphoma connection in a book but was told since my biopsy was negative it was doubtful gluten was the culprit 

frieze Community Regular
frieze
Posted

then the lawyer sounds about right.   my original response was "falling your doctors suggestion damn near killed you".  yes, new doc, and maybe a lawyer.

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zenjess1980 Contributor
zenjess1980
Posted
  • Author
56 minutes ago, frieze said:

then the lawyer sounds about right.   my original response was "falling your doctors suggestion damn near killed you".  yes, new doc, and maybe a lawyer.

I just started seeing a new doctor yesterday. Today is my 1st day gluten free. Thank you for your advice. 

cyclinglady Grand Master
cyclinglady
Posted

Jess,

I am shocked at the incompetence of your doctors (those who did not seem to follow standard celiac disease diagnostic procedures).  :huh:  I am angry that it takes so long for most to get a proper celiac diagnosis. :angry:  I am sadden that you have been so ill.  :(

It is probably best to move forward and work on improving your health!  Be sure to read the Newbie 101 section under "Coping" as it contain valuable tips.  Celiac.com has many articles that you might find helpful too.  

Best wishes to your improved health!  

zenjess1980 Contributor
zenjess1980
Posted
  • Author
4 hours ago, cyclinglady said:

Jess,

I am shocked at the incompetence of your doctors (those who did not seem to follow standard celiac disease diagnostic procedures).  :huh:  I am angry that it takes so long for most to get a proper celiac diagnosis. :angry:  I am sadden that you have been so ill.  :(

It is probably best to move forward and work on improving your health!  Be sure to read the Newbie 101 section under "Coping" as it contain valuable tips.  Celiac.com has many articles that you might find helpful too.  

Best wishes to your improved health!  

Thank you. I'm glad I found this forum!

gilligan Enthusiast
gilligan
Posted
On April 5, 2016 at 7:49 AM, frieze said:

 

decided my response was too harsh....

Ditto

GFinDC Veteran
GFinDC
Posted

Hi Jess,

You aren't the only poster who started the gluten-free diet and then went off it and realized that was a mistake.  One poor woman came back to tell her tale 5 years after starting gluten again.  She had to be rushed to  the emergency room for a emergency gut surgery.  She sprung a leak basically.

Celiac disease is still one of those conditions that many doctors aren't familiar with, and don't take seriously.  Most people with celiac disease are undiagnosed because doctors don't recognize the symptoms or test for it.  That leaves people with celiac in the position of learning as much as they can on their own because the doctors are often not much help.

A lot of doctors won't diagnose on blood antibodies alone.  But they probably should IMHO.  The problem with biopsy is they can miss areas of damage.  Or a person may not have obvious gut damage yet but be on the path to having it soon.

It's important to avoid all gluten if you have celiac.  Even tiny amounts of gluten can set off the immune reaction that damages our bodies.  I think the current standard is 20 parts per million in the USA, but some people get sick with less than that.  So it doesn't take much gluten and the immune reaction doesn't stop right away.  The immune reaction can go on for a month or more.  So that's damage all that time.  I don't know if you have read up on cross-contamination issues yet but they do matter.

That being said, I live with 2 gluten eaters and don't have problems.  I wash silverware, dishes etc before using it.  And seldom eat anything I haven't cooked myself.  All the little things we have to do may seem a burden at first, but they are normal routine after a while.

The immune reaction can affect any part of the body, and cause swelling, joint pain, nerve damage, tiredness, etc...  Some people find they are low on vitamin D and B vitamins also.

I hope you feel better soon, but the road to recovery can be a little rocky sometimes.  People sometimes seem to have kind of an up and down recovery, feeling good and then feeling bad.  The better you avoid gluten though the sooner you will recover.  We all started somewhere. :)

 

zenjess1980 Contributor
zenjess1980
Posted
  • Author

Hello, and thank you for your kind reply. I have definitely found that doctors are not familiar with celiac. I had one doctor several years back tell me "Your celiac panel is positive based on the results, but I'm not really sure what that means, it's  really very uncommon." I Got referred to a GI who was also of no help, hence began a neat 10 year on and off eat/refrain from gluten lifestyle. Then fast forward to the negative biopsy and being told i was "probably fine" to eat gluten, and then getting lymphoma and researching myself and finding the high correlation between celiac and lymphoma... i have barely been able to wrap my head around how it's so gravely not understood and the lack of knowlege in the medical profession. I'm grateful for being my own advocate today and taking the necessary action to claim my health and a hopefully long life. Thank you again for sharing with me :) 

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