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
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.