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

How Much "cheating" Is Allowed ?

Tamber

Recommended Posts

cahill Collaborator
cahill
Posted

  This stuff can kill you.

This is the bottom line .

 

 

Welcome to the forums :D

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hi Tamber, again.

 

I just wanted to say welcome again, and it's okay to want to cheat. And one cheat will no kill you, nor another cheat. I know many people in my small town who cheat, although diagnosed.  It's all about choices.

 

When I do get careless, it takes a day out of my life, listless on the sofa and I'm confined to home ( and I suffer less than others).  AND, why waste a day and why waste a day of good health.?

 

Go for the good stuff and live well.  And you know, what's right for you.  I am confident you will choose wiselyl  You will make the right choice. :)

mushroom Proficient
mushroom
Posted

I was a bit careless yesterday, and for the first time in a long time something rose up and bit me :ph34r:   I am really miffed with myself because who needs to feel like #*&T when they could be out having fun :rolleyes:

Lisa Mentor
Lisa
Posted

I was a bit careless yesterday, and for the first time in a long time something rose up and bit me :ph34r:   I am really miffed with myself because who needs to feel like #*&T when they could be out having fun :rolleyes:

Hope you feel better today. xxxooo    Today is tomorrow. Feel beter  Mushrooms!

mushroom Proficient
mushroom
Posted

Hope you feel better today. xxxooo    Today is tomorrow. Feel beter  Mushrooms!

 

Thanks!  Still trying to find something to eat other than yogurt that does not make me feel like barfing.  Think I'll make some veggie soup :)

Nikki2777 Community Regular
Nikki2777
Posted

Diagnosed 1 month ago here - I echo everyone, and will add that I thought I had manageable symptoms, but they've gotten worse since being gluten-free.  Now, an accidental glutening is just no fun at all.  And I suspect it will get worse.  This is nature's way of keeping you from cheating.

 

What helped me, and still does, is thinking that research is moving quickly with the new prevalence of Celiac, and maybe science will have a pill, or a new treatment in 5 years or 10 and I can go back to an occasional treat.  But the honest truth is, I'm finding plenty I can eat gluten-free and you just adjust.  The hardest part with me is figuring out when to trust restaurants, etc. and dealing with work related meals.  But I think I'll figure that out.  Good luck.  I was you only one month ago.

  • 2 weeks later...
sweettea Newbie
sweettea
Posted

What if you aren't celiac, and just "possibly" gluten intolerant/allergic?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

It all depends on how much you want to suffer and how much damage you want to risk doing to your body.    And allergy is something else entirely, and not to be taken lightly, as allergies can become worse and life-threatening.

sweettea Newbie
sweettea
Posted

It all depends on how much you want to suffer and how much damage you want to risk doing to your body.    And allergy is something else entirely, and not to be taken lightly, as allergies can become worse and life-threatening.

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

Lisa Mentor
Lisa
Posted

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

Hey Sweettea!  Migraines and skin issues are closely associated with celiac disease.  Are you aware of dematitis herpetiformis?

sweettea Newbie
sweettea
Posted

Hey Sweettea!  Migraines and skin issues are closely associated with celiac disease.  Are you aware of dematitis herpetiformis?

Hi! I just recently heard of it through my gluten research. I was diagnosed with lichen plants and lichen nitidus. I definitely don't look like I have the herpetiformis going on but google I'd probably showing me the worst case scenarios.

mushroom Proficient
mushroom
Posted

If you check the dermatitis herpetiformis section on the forum here, there is a photo bank of members photographs of their lesions for comparison purposes.  These run the gamut from mild to severe.  Even dermatologists have a hard time with this diagnosis. 

 

ETA: Eczema and psoriasis are two other skin conditins associated with celiac disease.

Tamber Newbie
Tamber
Posted
  • Author

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

 

Sweettea - If I may, what tests did you have ? 

 

For me, both the Deamidated Gliatin Abs IgA test and the t-Transglutaminase (tTG) IgA came back negative. It was the tgG IgG test that came back high. And that was later supported by a dramatic change in my Vitamin D levels - from 115 to 35 after approx. 65 days gluten free.

 

PS Does anyone here know whether the innaccurate results of my IgA tests could have anything to do with my having very low Immunoglobuliina A levels ?

mushroom Proficient
mushroom
Posted

PS Does anyone here know whether the innaccurate results of my IgA tests could have anything to do with my having very low Immunoglobuliina A levels ?

 

Yes.  The  Immunoglobulin A, aka total serum IgA, is run as a control test to ensure that you produce normal amounts of antibodies.  If yours was low it would invalidate any IgA testing, in which case they use the IgG.   I am hoping you meant your D went up to 115 from 35 ;)

Tamber Newbie
Tamber
Posted
  • Author

Yes.  The  Immunoglobulin A, aka total serum IgA, is run as a control test to ensure that you produce normal amounts of antibodies.  If yours was low it would invalidate any IgA testing, in which case they use the IgG.   I am hoping you meant your D went up to 115 from 35 ;)

Thanks Mushroom. I should have been more specific. While my D,25 was and is completely responsive to supplementation, my D1,25 has been steadily, independently climbing for a few years and finally hit 115 (High normal being 75 at my lab). That signalled to my docs that something was going on. Turns out that celiac was preventing my body from properly metabolizing D3 which then found its way into my blood and my urine and caused a significant deterioration in my oestopenia/osteoporosis numbers as well as a broken tooth.. Once my body is back on track, I'll increase my D3 supplementation  to constructively increase my D levels. It was a lesson that high D 1,25 isn't always a good thing and may in fact signal an infection or other problem.

mushroom Proficient
mushroom
Posted

Thanks Mushroom. I should have been more specific. While my D,25 was and is completely responsive to supplementation, my D1,25 has been steadily, independently climbing for a few years and finally hit 115 (High normal being 75 at my lab). That signalled to my docs that something was going on. Turns out that celiac was preventing my body from properly metabolizing D3 which then found its way into my blood and my urine and caused a significant deterioration in my oestopenia/osteoporosis numbers as well as a broken tooth.. Once my body is back on track, I'll increase my D3 supplementation  to constructively increase my D levels. It was a lesson that high D 1,25 isn't always a good thing and may in fact signal an infection or other problem.

 

Okay, gotcha. :)

nvsmom Community Regular
nvsmom
Posted

I guess I am just not really sure what is going on with me. Tests are negative and no GI problems. Went gluten free anyways to see if it helps with my chronic migraines and autoimmune skin issues. Not sure if that is allergy or intolerance.

Migraines... I used to have those close to two weeks out of every month... I had no idea they were gluten related before my diagnosis. I hope yours go too.

 

Gluten intolerantsexperience basically every symptom as a celiac except villi damage. They can have ataxia, nueropathies, gastro issues, nutritional deficiencies, and pain - all that inflammation can lead to other disease too. To be safe, I would go 100% gluten-free.

 

Best wishes.

sweettea Newbie
sweettea
Posted

Sweettea - If I may, what tests did you have ?  For me, both the Deamidated Gliatin Abs IgA test and the t-Transglutaminase (tTG) IgA came back negative. It was the tgG IgG test that came back high. And that was later supported by a dramatic change in my Vitamin D levels - from 115 to 35 after approx. 65 days gluten free. PS Does anyone here know whether the innaccurate results of my IgA tests could have anything to do with my having very low Immunoglobuliina A levels ?

I've had them all done including an endoscopy with biopsy which is why I'm leaning towards gluten intolerance.

foam Apprentice
foam
Posted

Fine line between an intolerance and full on Celiac disease, either way you can end up autoimmune. I only ever got gut aches from eating bread/pasta/etc and a slight brain fog immediately before the gut ache and complete system flush :0 but it wasn't enough of a problem that I thought I needed to stop eating it. I certainly never had anything like you read about with people getting sick at the sniff of a flour dust. It's probably just a matter of how sensitive you are in general. So I figured I didn't have a serious problem with it.. Well I was wrong

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. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.