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
katiekay
Posted

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
mushroom
Posted

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
rosetapper23
Posted

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
etta694
Posted

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
cassP
Posted

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
ravenwoodglass
Posted

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
cahill
Posted

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
katiekay
Posted
  • Author

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
katiekay
Posted
  • Author

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
love2travel
Posted

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
killernj13
Posted

One word - CANCER

katiekay Explorer
katiekay
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,763
    • Most Online (within 30 mins)
      7,748
    Donna Williamson
    Newest Member
    Donna Williamson
    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

    • knitty kitty
      Ibuprofen

      By knitty kitty · Posted

      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      Follow up endoscopy and biopsy 14 years post celiac diagnosis

      By knitty kitty · Posted

      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Follow up endoscopy and biopsy 14 years post celiac diagnosis

      By trents · Posted

      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      Follow up endoscopy and biopsy 14 years post celiac diagnosis

      By stephaniekl · Posted

      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      Follow up endoscopy and biopsy 14 years post celiac diagnosis

      By RMJ · Posted

      A much better suggestion than that of the new doctor!
×
×
  • 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.