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

  • 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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    4. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    5. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,256
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.