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

Is Avoiding All Gluten Possible?


wakefulwife

Recommended Posts

wakefulwife Newbie

I am looking for wisdom and feeling frustrated. I have a biopsy confirmed diagnosis as of May. For years I thought that I had gall stones, but they could never find any. I get awful stomach cramps when eating eggs or other concentrated fat foods. It had gotten to the point that my stomach hurt whenever I ate, and I was anemic, I thought from donating blood too frequently. When my father was diagnosed in March, I had the biopsy. I have been feeling much better since going gluten-free, but I never really reacted much to gluten anyway. Still can't eat eggs, but it is not as bad, and only have serious anemia symptoms when I have my period. My concern now is cross-contamination. How much of a risk is it? How do I know if I am avoiding gluten completely if I am not reactive to it? I still eat out, and do my best to avoid gluten. I try to be careful in food prep, but no one else in my family is going gluten-free. I wonder if it is possible to avoid all gluten? If I am non-reactive, is there some other way to tell if I am being successful? I never had the blood test, just went straight to the endoscopy. Would have never guessed in a million years that my issues were gluten related if my very reactive father had not been diagnosed.

Also, I could sure use a good Doctor and dietitian in the Oklahoma City area. Just moved here form MD and my GI Dr in Maryland was not very helpful. I was told to take a multi-vitamin and avoid all gluten. Easier said than done I am finding.


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

Were those foods you were eating when you felt bad containing gluten and eggs? Celiac Disease has so many symptoms from headaches,r ashes, vomiting, etc., that you could have had many and not thought they were related. You can be gluten-free if you try and get used to your diet. It takes awhile to get used to and you'll be better off on it. Plus, you could have complications and a compromised immune system if you continue eating it.

Good luck and you'll find this site is a great resource!

wakefulwife Newbie
Were those foods you were eating when you felt bad containing gluten and eggs? Celiac Disease has so many symptoms from headaches,r ashes, vomiting, etc., that you could have had many and not thought they were related. You can be gluten-free if you try and get used to your diet. It takes awhile to get used to and you'll be better off on it. Plus, you could have complications and a compromised immune system if you continue eating it.

Good luck and you'll find this site is a great resource!

Yes, I was eating gluten when I was sick. I have no doubt that was the problem. My question is, since I do not have an immediately discernible reaction to gluten, how can I tell if I have successfully avoided cross-contamination? How big a risk is it? I live in OK, surrounded by wheat fields and grain elevators. Do I need to be concerned about making sandwiches for my kids? Do I need to throw out my makeup? It seems like there is no way eliminate all gluten from your world. What happens if I accidentally ingest gluten? Have I undone all the healing to my system. I wish that I became violently ill when I was exposed to it, at least I would know and be able to avoid the contamination. I feel great now that I am off the gluten, but I suspect that I may still be coming in contact with it to some degree. I do not Clorox the whole kitchen after I make a sandwich for the kids.

mushroom Proficient

You have to be a detective to remain gluten free; that is, you have to be really conscientious about reading every label; and thinking about every thing you put in your mouth. I catch my husband (who has DH) in unconscious eating sometimes and can't believe he is so careless. But it takes quite a bit of gluten for him to react. We are all diferent in our levels of conscious tolerance, but that does not mean that harm is not being done by the unconscious eating with no apparent consequences. So all I can advise is to be as aware as possible about what you consume; that is all any of us can do.

It is possible to avoid all gluten; most of us do it 99.5 % of the time; however, living with gluten eating peoples makes it more complicated. You have to have our own utensils and frying pans and toaster, your own jars of spread, and your own storage and preparation areas, and have your rooommates respect these no-go areas in order for this to work. Good luck on your gluten free journey.

wakefulwife Newbie
You have to be a detective to remain gluten free; that is, you have to be really conscientious about reading every label; and thinking about every thing you put in your mouth. I catch my husband (who has DH) in unconscious eating sometimes and can't believe he is so careless. But it takes quite a bit of gluten for him to react. We are all diferent in our levels of conscious tolerance, but that does not mean that harm is not being done by the unconscious eating with no apparent consequences. So all I can advise is to be as aware as possible about what you consume; that is all any of us can do.

It is possible to avoid all gluten; most of us do it 99.5 % of the time; however, living with gluten eating peoples makes it more complicated. You have to have our own utensils and frying pans and toaster, your own jars of spread, and your own storage and preparation areas, and have your rooommates respect these no-go areas in order for this to work. Good luck on your gluten free journey.

Is a 4 slice toaster sufficient if two slices are dedicated to gluten-free food, or do I have to have a completely separate one?

ang1e0251 Contributor

You need your own toaster. You really cannot control the crumb factor. Making the kid's sandwiches only requires you to prep them on a paper towel then fold in the crumbs and throw away. Then wash your hands. Don't freak out just be concious of gluten. None of us are perfect, so we just have to go with our best effort. At some point you may want to test again to see if your damage shows improvement. My guess it is has since you're feeling better.

lovegrov Collaborator

If you eat out or eat processed foods or live with somebody who isn't gluten-free, then , no, you cannot avoid ALL gluten. You will get some somewhere. Even people who are more sensitive probably get tiny amounts without knowing it unless they avoid all of the above. BUT, you can avoid it the vast majority of the time -- and for most of us that's what we need to do.

richard


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



Celiac.com Sponsor (A8-M):



wakefulwife Newbie
If you eat out or eat processed foods or live with somebody who isn't gluten-free, then , no, you cannot avoid ALL gluten. You will get some somewhere. Even people who are more sensitive probably get tiny amounts without knowing it unless they avoid all of the above. BUT, you can avoid it the vast majority of the time -- and for most of us that's what we need to do.

richard

Thanks, that is helpful. I just gets a bit overwhelming. It is such a radical life-style change. Found out yesterday that there is wheat oil in my favorite lip balm and sunscreen. Both rather pricey. DARN. So despite all my hard work in trying to remain vigilant, I probably still exposed anyway. ARGH!

Archived

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

  • 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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.