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

What Is The Worst That Can Happen?


katiekay

Recommended Posts

katiekay Explorer

Hi... this is an idiotic sounding post.

What is the worst that can happen if you have celiacs and don't go gluten-free.

I am new to the whole celiacs thing. I suspect that my husband, myself, and my 18 mo. old have celiacs. I know for her it means failure to thrive etc. Horrible stuff for her. For myself I will have no problem going gluten-free even if it's just to support my daughter and husband. My husband, on the other hand, not sure about...

He has decided to get a blood test but even if he gets a positive not sure he will be that strict. We don't have severe reactions like some people I've read about. Stomach troubles, rash, joint pain, trouble concentrating... stuff like that... So if he doesn't go strict at the age of 44 is it a big deal? I mean could he die from it or is it that he just wont ever feel that comfortable health wise??


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Those who don't notice any symptoms from celiac disease have it harder than those who do, because they don't see any benefit in doing the diet. Their problem is they have no idea what damage they are doing to their body, while the people with the symptoms KNOW that gluten is harming them. But the lack of symptoms does not mean that damage is not being done. There are people who have bad completely flattened villi with no or very few symptoms. For some the first they know that gluten is a problem is they develop diabetes, or rheumatoid arthritis or lymphoma, or colon cancer :unsure: So yes, if you test positive you can do yourself tremendous harm by continuing to eat gluten. But it is always the individual's decision whether he or she wishes to take that risk.

rosetapper23 Explorer

There are definitely many bad things that could happen, and once the damage is done, sometimes it can't be reversed...even with a gluten-free diet. I wasn't diagnosed until I was 47, and I still am unable to absorb Vitamin K and poorly absorb Vitamins D and B6 even though I take megadoses of both. Also, if I accidentally ingest gluten, I end up deficient in one or more nutrients, which causes my life to become a living Hell. For example, I had to receive iron intravenously for years (very inconvenient and time consuming), and last year both of my feet fractured from having "floppy tendon syndrome" from deficiencies in zinc, manganese, and silicon. Both of these conditions were caused by eating only a slight amount of gluten accidentally. From my reading, if neurological problems result from eating gluten, those conditions usually don't reverse themselves even on a gluten-free diet. Your husband would be taking a huge chance if he has celiac and chooses not to eaten gluten free.

etta694 Explorer

I have been doing as much reading as I can (because I'm trying to start a support group) and I found this article and remembered your post.

It underlines what has already been said and is very good reading...

https://www.celiac.com/articles/22237/1/Better-Education-for-Celiac-and-Gluten-Sensitive-Patients/Page1.html

cassP Contributor

Hi... this is an idiotic sounding post.

What is the worst that can happen if you have celiacs and don't go gluten-free.

I am new to the whole celiacs thing. I suspect that my husband, myself, and my 18 mo. old have celiacs. I know for her it means failure to thrive etc. Horrible stuff for her. For myself I will have no problem going gluten-free even if it's just to support my daughter and husband. My husband, on the other hand, not sure about...

He has decided to get a blood test but even if he gets a positive not sure he will be that strict. We don't have severe reactions like some people I've read about. Stomach troubles, rash, joint pain, trouble concentrating... stuff like that... So if he doesn't go strict at the age of 44 is it a big deal? I mean could he die from it or is it that he just wont ever feel that comfortable health wise??

there are so many things that can go wrong in your body if you continue to eat gluten, and they dont even ever have to manifest in your gut... speaking from my family's relationship to gluten-> you could lose your mind, or your thyroid, or develop heart disease, have miscarriages, or develop fertility issues.

ravenwoodglass Mentor

From my reading, if neurological problems result from eating gluten, those conditions usually don't reverse themselves even on a gluten-free diet.

Stomach troubles, rash, joint pain, trouble concentrating are hardly asymptomatic. And the trouble concentrating is a sign of brain impact. Actually neuro issues can reverse, at least to some extent. It does take a very long time though. I went from not even being able to read or walk without falling, and having extreme memory issues and issues with mood and difficulty with speech to being almost totally normal. Walk without canes, can read and remember well enough to finally finish college with high honors and no problems with speech but it took literally years.

Your husband would be playing with fire not doing the diet or only doing it sporatically. Read some of the signatures of those who went a long time not diagnosed, including my own. The most dire result of course is an early death for a celiac associated cancer.

cahill Collaborator

Hi... this is an idiotic sounding post.

What is the worst that can happen if you have celiacs and don't go gluten-free.

I am new to the whole celiacs thing. I suspect that my husband, myself, and my 18 mo. old have celiacs. I know for her it means failure to thrive etc. Horrible stuff for her. For myself I will have no problem going gluten-free even if it's just to support my daughter and husband. My husband, on the other hand, not sure about...

He has decided to get a blood test but even if he gets a positive not sure he will be that strict. We don't have severe reactions like some people I've read about. Stomach troubles, rash, joint pain, trouble concentrating... stuff like that... So if he doesn't go strict at the age of 44 is it a big deal? I mean could he die from it or is it that he just wont ever feel that comfortable health wise??

I am among those that the digestive symptoms are "manageable ? :blink: " the D and or C , upset stomach,abdominal pain, cramping,rashes (DH) were/are all so normal for me that I can "manage" them,,,,,( that in its self is a sad statement )

It is the neurological symptoms that have made my life a living H**L. The ringing in my ears,dizziness,mental confusion , brain fog,vertigo ,walking into walls, unable to walk with out falling down ,hand tremors ,and on and on... :(

Yes , he could die from it.

Malnutrition,Vitamin and mineral deficiencies, cancer ,gluten ataxia just to mention a few compilations.

I wish for you and your family much health and clear answers ( HUGS)


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



Celiac.com Sponsor (A8-M):



katiekay Explorer

THANK YOU guys so much for your responses. WOW!!! I didn't realize all of that. I can't believe some of the additional symptoms that you guys mentioned that sound like me. I have been diagnosed with ADD a couple times and I think now it's celiacs... in addition struggle with depression and can't figure out why and depression medications never worked. It's always like a little fog of saddness.

katiekay Explorer

I have been doing as much reading as I can (because I'm trying to start a support group) and I found this article and remembered your post.

It underlines what has already been said and is very good reading...

https://www.celiac.com/articles/22237/1/Better-Education-for-Celiac-and-Gluten-Sensitive-Patients/Page1.html

Hi... I just wanted to say thank you so much for the article. It has made me realize that even if I get a negative blood test I am going gluten free. I was gluten-free for one week and didn't realize what a difference it was making for me. Now I feel awful... I really think I have celiacs. Stomach troubles, headache, itchy skin, and didn't think about this until just now but I am back to feeling soooo tired again. I think without your article I might even have decided to cheat every once in awhile. Thank you very much. I'm going to try and buy the book and video that is referenced also.

love2travel Mentor

As a silent celiac the odd time I am tempted to just eat that such and such I am so badly craving BUT would never give in to that anyway because I know what goes on inside me. My husband and I leave in 5 weeks for Italy and Croatia and part of me thinks, "To heck with it. I'll probably have CC issues in Croatia anyway..." But my logical side says a big fat resounding "NO"! My dad died of bone cancer and my step dad has just been dealing with colon cancer so that is enough to scare me. I don't want to take any chances and could not bear the thought of leaving my precious husband and family behind.

killernj13 Enthusiast

One word - CANCER

katiekay Explorer

cancer... that did not sink in until you wrote it as one word... oiks... i wish there weren't so many false blood tests.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @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
      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
      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
      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
      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.