Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A lifetime of eating gluten...

zenjess1980

Recommended Posts

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 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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 :) 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. MauraBue
      - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

      Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      how much gluten do I need to eat before blood tests?

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others thanks again for all the great info
    3. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    4. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    5. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748
    MauraBue
    Newest Member
    MauraBue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.