Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Many Questions

KrisT

Recommended Posts

KrisT Explorer
KrisT
Posted

I've been reading a lot on the boards, and I know I could be here for days on end reading, so I though I would just ask a few specifics to get some answers.

First... I've noticed that there seem to be several different schools of thought on this board in terms of how to go about adjusting the diet. Some of you seem to think if it doesn't feel bad then its ok, while others say even if you feel fine you are still damaging yourself. I find that very interesting because I have always followed my bodies directions based on how things feel. I am now gluten free, but I haven't changed my cookware, and didn't plan to. My kids eat gluten, for now, certainly less than before, until we can get everyone tested. I can't financially afford to change out my kitchen etc. I can BARELY afford to stay gluten free. (I also have to eat organic because of my MCS which is why it costs me more) So my questions is... how much of the cross contamination, if it doesn't cause a physical reaction, is it really damaging? Am I still able to heal if I have taken the gluten out of my main diet?

Also, I am looking at the gluten-free books on my libraries website and I am lost! Can I get some recommendations for books about celiacs and also for some better cookbooks, especially baking recipes?

I've also gone bugged eyed trying to find good online stores to shop gluten free. I have found certain brands that taste better tha others and would like to just be able to go to one store to get them, but haven't found it. Is there any one online store that is more inclusive than others? I like Kinnickkinnick brand and also Bob's Red Mill, as well as Amy's. (I just found out Amy's makes gluten-free pizza, and ran to the store to try to get one only to find out they were sold out! Must be another celiac in town!) I am sure there are many other good brand that aren't in my local stores to try. And I have found some that I think taste horrible!!

Also... I've only tested positive for the gluten sensitivity, not able to afford the other tests. I am guessing that with my symptomology that I am actually celiac since I have had serious problems for many years. I can check yes next to every listed symptom! So I am treating this as if I have had the full spectrum of tests. Am I going to regret that? Should I at some point get the other tests done or just live by the rule of if it makes me feel better than its working?

I realize I have written a book here. Thanks for taking the time to read and share!!!! :D

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

Celiac.com Sponsor (A8-M):


kabowman Explorer
kabowman
Posted

There are different types of people on this board. Some with possitive dx for celiac, some with food intolerances. There is also the group that believes the intolerances are just a different form of celiac disease but with no damage yet - I am generalizing A LOT so don't jump down my throat please.

I am intolerant - if I eat gluten, I am not necessarily damaging my intestines and risking cancer BUT I am making myself sick which isn't good for you or healthy. True celiac disease can cause cancer, autoimmune diseases, actually damaging your body, etc. I personally don't believe that we intolerant group are doing all that but we aren't making ourselves healthier either.

At first, I did NOT change out my cookware and was not careful about cross contamination, now I have to be careful and I have added to the cookware we had to include some dedicated non-gluten (soy, corn, etc.) pans because they were making me sick. When we replaced our grill, we kept it clean, for me meaning no sauces (vinegar has yeast and I can't have that), no coatings, etc.

My boys have various food intolerances and they are not the same as each other or mine. We just don't keep most of those foods in the house (except cheese for one kid and hubby). We keep sauces but they are only added at the table or designated counter area.

I eat stuff and if my body tells me something is wrong, then I look for the cause. I think I am in the minority on this board though.

Cookbooks - anything by Bette Hagman, great baking.

chrissy Collaborator
chrissy
Posted

i did not change out our cookwear. i did buy a new toater for the girls and GLUTEN FREE is written in black marker on it so the other kids won't use it. we keep separate, labeled jars of peanut butter, jam, mayo and miracle whip. we buy squeeze bottles of condiments when we can to help avoid cross contamination. i cook all meals gluten free for the family---we have 10 people at home, 3 of them are celiacs. i do keep crackers, bread and cereal for the rest of the family because it saves me money. when my girls were retested, my 11 year old had managed to get her blood work back to normal after 6 months, so i know we have avoided any damaging cross contamination. (the other 2 girls admittedly cheated on the diet)

we like to order from kinnikinnick, we use tinkyada pasta and health valley cream soups. the gluten free pantry has some good products and so does pamela's. bette hagman has several good gluten free cook books.

CarlaB Enthusiast
CarlaB
Posted

I am gluten intolerant, but have the autoimmune reaction. I think that what Kate is saying about it being a comfort issue (not feeling bad) for a gluten intolerant person is right to an extent. If you're having the autoimmune reaction, however, you are causing damage to your body even with a small amount.

Some of my cookware is new -- wooden spoons, and other porous materials -- some is not.

Nancym Enthusiast
Nancym
Posted

It looks like any exposure to gluten causes an autoimmune reaction that will elevate the antibodies two years or longer, according to Dr. Fine. When you've gotten a few subsequent autoimmune diseases and don't want any more... you do everything to avoid that sort of challenge. That's why some of us are so very fanatical. Everyone has to figure out what level of risk they can live with.

If you to take your entire family gluten free then you don't have to worry about CC. It isn't that expensive if you avoid the "substitutes" for gluten things. Stick to foods like fruits, veggies and meats, eggs, fish. Make your own gluten free flours and do your own gluten free baking. Your entire family might end up a lot healthier.

CarlaB Enthusiast
CarlaB
Posted
It looks like any exposure to gluten causes an autoimmune reaction that will elevate the antibodies two years or longer, according to Dr. Fine. When you've gotten a few subsequent autoimmune diseases and don't want any more... you do everything to avoid that sort of challenge. That's why some of us are so very fanatical. Everyone has to figure out what level of risk they can live with.

If you to take your entire family gluten free then you don't have to worry about CC. It isn't that expensive if you avoid the "substitutes" for gluten things. Stick to foods like fruits, veggies and meats, eggs, fish. Make your own gluten free flours and do your own gluten free baking. Your entire family might end up a lot healthier.

This is what we do, the whole family is gluten-free at home. I will buy regular pretzels for school lunch, but they don't leave crumbs all over my counters like bread does. The only person I buy substitutes for is my daughter her packs her gluten-free lunch for school every day. Even so, she still usually packs things that are naturally gluten-free. I do buy her gluten-free bread so she can have a sandwich sometimes. We tried being a mixed household and it didn't work for us. I was still getting sick.

Tim-n-VA Contributor
Tim-n-VA
Posted

This thread is sort of my concern as a newly diagnosed celiac. If you had asked me before the testing, I would have told you I had no symptoms. After thinking about this for a while, I realized that there were many times over the years that I felt slightly nauseous a few hours after eating with no known reason. I just got biopsy results on two days ago and intend to have be gluten free. My concern is if after an extended period of being gluten-free if I will become much more sensitive to small (cross contamination) amounts of gluten. Obviously are probably as many answers to this as there are members on the board but I'd be interested in the experience of initially symptom-free people.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Tim, even though you may become sensitive to small amounts and are not now, you will not be doing the damage you are doing now. I didn't used to react to every bit of gluten, it was just overall poor health. Now I react to the smallest amount. It's like smoking ... a person may smoke 20 cigarettes a day and it doesn't bother them but their health may be declining as time goes on ... then they give up smoking and eventually one cigarette may make them feel pretty ill.

I think you will also notice that you feel better. I didn't realize how you were supposed to feel until I felt this way!!

kabowman Explorer
kabowman
Posted

Carla said what I wanted to say so much better, thanks.

All or family meals are gluten free and hubby makes breakfast for 3 of us every morning--my youngest son is up to 7 eggs for breakfast, gluten free. Nobody misses the gluten stuff, our pasta tastes the same, my homemade noodles taste great, etc.

I keep bread, cereal, & crackers in the house for the kids and hubby but they have to prepare it on a plate and in a designated space to avoid contamininating the cooking area. Also, since my diet is SO restrictive, we can't eliminate all that and still have the kids eat cereal or ramon noodles (not sure why but they LOVE those) so we have designated areas for preparation.

I clean ALL THE TIME; even after they clean up after themselves, it is just safer that way.

I am also pre-diabetic so don't use sugar most of the time but we keep that on hand for the kids.

KrisT Explorer
KrisT
Posted
  • Author

Thank you all for the responses. My husband and kids have truly been great about all of this and we are making all of the family meals gluten-free now. Of course they can have the gluten things on their own, and it sounds like a lot of you live this way too.

I may eventually find that I need to get my own toaster etc, but for now those are expenses that are out of the question.

What about the books and stores?? Any good suggestions??

Guest nini
Guest nini
Posted

KrisT, I had heard about a product you can get that is a "envelope" that you can put your bread inside to be able to toast it safely in a shared toaster... (although the expense of those may be more cost prohibitive) especially since a basic toaster is only $12 at Dollar General and about $10 at Wal Mart.

Archived

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

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


  • Member Statistics

    • Total Members
      126,202
    • Most Online (within 30 mins)
      7,748
    Maroney
    Newest Member
    Maroney
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...