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 If You Don't Go Gluten Free

jodikris

By jodikris
in Coping with Celiac Disease

Recommended Posts

i canary Rookie
i canary
Posted

Jodikris,

Glad you are getting an appointment with a gastroenterologist!!

I think all of us has felt at one time or another alone. I'm the only one in my circle of friends, co-workers and family that has Celiac. It's hard to be the only one who has to be so careful. I get tired of being the odd one. I'm being to think my role in their life is to remind them to be grateful they aren't me! :rolleyes:

Please keep us posted.

Canary

Thank you all for caring. I feel very alone right now and part of me feels so silly for feeling this bad about it.. I can't tell you what your posts meant to me. I showed my mom and dad and all the people in my life!

Okay well you guys convinced me to make an appointment with a gastroenterologist for Tuesday at 8am. Thank you all for posting.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

We have all felt alone, all been frustrated, all been scared. And we can all tell you that it can only get better! You will have difficulties, set backs, and great changes, but you will have better health, and be physically stronger for it. Let us know what the doc says, we are here if you have questions or just need to vent.

Guest BERNESES
Guest BERNESES
Posted

jodikris- You did the right thing by making an appointment! the people you love and that love you will be happy to have you around a lot, lot longer. best, Beverly

jodikris Apprentice
jodikris
Posted
  • Author

I have also been gluten free since Friday. I went to whole foods for the first time and found a lot of things I could eat!

Can you guys recommend a good resource for who to tell if bought foods have gluten?

Guest BERNESES
Guest BERNESES
Posted

Yippeee! If you email me at beverly_brennan@yahoo.com I'll send you the Delphi List which has about 70 pages of gluten-free stuff. it's almost a year old but it's a good start. just make sure you STILL read labels and when in doubt, leave it out!

Claire Collaborator
Claire
Posted

You ignore the gluten free diet at your own risk.

Risk of what? Well:

Risk of developing other autoimmune diseases such as Lupus, Rhematoid Arthritis, Addison's Disease, Osteoproisis and others.

Risk of neurological disorders -such as periperal neuropathy, cerebellar ataxia (gait and balance dissorder that also can effect eyesight, speech and swallowng.

Risk of Intestinal T-Cell Lymphoma - a generally lethal form of cancer.

If these are not enough reasons to maintain a gluten free diet - then by all means, have a burger or a donut or whatever . . . Claire

jodikris Apprentice
jodikris
Posted
  • Author

Claire I think if you read all the posts you will see I am really trying...

This is very hard for me. I have been pretty much a complusive over eater my entire life. Not to mention I live in SOUTH LOUISIANA where if it doesn't have a roux (flour & Oil) it aint worth eatin in most people's opinion. I plan to take this one day at a time. I kinda feel like an alcoholic or a smoker. So please bare with me here....im really making an effort.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I am so glad that you are going to go on the diet. You will thank yourself for this after you have been on it for a bit. Many of us notice positive changes after being gluten free that are very unexpected. You may notice more energy, less premenstral problems, less headaches, better coordination. These were a few of the 'minor' changes that my DD noticed after becoming gluten-free. She like you had few symptoms that we attributed to celiac, she mainly had GERD as a gut symptom. For myself and my son (misdiagnosed for 45 and 20 years respectively) the changes were phenomonal. Also please bear in mind that if you don't have active diarrhea many GI docs will dismiss celiac too quickly. My ex-husband was just tested and we really had to insist because of the lack of D. or other obvious symptoms. Quess what his test results were? To say we got yet another apology is the understatement of the year and we are deglutening his house this week. Also some of us NEVER show up positive on tests, I am one of those and by the time I was diagnosed I was so sick my DD told me she would understand and forgive me if I committed suicide. I am so glad to hear you are going gluten-free. It may be tough at first but when your 80 and rocking that great grandchild to sleep you will be glad you did. Best wishes and I am so glad you found this site.

jodikris Apprentice
jodikris
Posted
  • Author

That was one of the reasons I thought I didn't have it...I had a positive biospy and a negative blood test. But I have too many symptoms to ignore it.

mouse Enthusiast
mouse
Posted

Acccording to a couple of the doctors I go to, it is not unusual to have a false negative on just about any test you have done. Whether it is for celiac disease or something else. A positive is for sure but not a negative.

jodikris Apprentice
jodikris
Posted
  • Author

Okay so Im so confused now....

I can NOT have rolled oats? If a food contains gluten do they HAVE to say it? HELP!!!!!!!

Rusla Enthusiast
Rusla
Posted

jodikris...for your roux use cornstarch. It has 10x the expansion of flour and is great in gravies, sauces etc., and of course is not harmful to us.

Claire Collaborator
Claire
Posted
Claire I think if you read all the posts you will see I am really trying...

This is very hard for me. I have been pretty much a complusive over eater my entire life. Not to mention I live in SOUTH LOUISIANA where if it doesn't have a roux (flour & Oil) it aint worth eatin in most people's opinion. I plan to take this one day at a time. I kinda feel like an alcoholic or a smoker. So please bare with me here....im really making an effort.

Please don't take offense. I admit, I was trying to make an emphatic point. This can be a life and death matter. Even if some of the effects I listed are not fatal, they certainly are conditions you do not want to have.

Going on a diet to lose weight is one thing and failing now and then disappointing but not a threat as it is with celiac. The gluten-free diet isn't easy anywhere. Every region has its' own food culture and I don't know anywhere where gluten-free is the norm. I live in Amish country where the diet is extremely unhealthy - high fat, high sugar and loads and loads of grains. Fortunately we are able, in season, to get lots of fresh fruits and vegetables.

From being on this forum for awhile I can see that the degree of difficulty with the gluten-free diet is directly related to the need to find replacement for favorite foods. The gluten-free food industry is capitalizing on the passion people have for 'great' foods. These are usually high gluten sweets and the gluten saturated pastas - pizza, spaghetti etc.

gluten-free is a lifestyle change - from basically great tasting but not very healthy foods that are nutritionally substandard - to a diet based in simple, basic foods - the way they come to us from nature. Once we commit to gluten-free and get the hang of the label reading and all that - we can move on to learn how to make great gluten-free 'substitutes' at home - if we really need them.

gluten-free is a healthy lifefstyle that you will not regret. You must keep trying. My list was in the negative - but it is the truth, a truth you need to use to help you with the 'trying'. Good luck. Claire

jknnej Collaborator
jknnej
Posted

Just so you know in advance...if you are gluten free your blood test will NOT show up positive so if your new GI tests you make sure he knows you are gluten free right from the get-go or you will get a false negative.

jodikris Apprentice
jodikris
Posted
  • Author

Clarie I understood what you were getting at I just didn't want you to think I was taking this lightly. I am very uninformed about this disease and hopefully that will change tomorrow when I see the gastroenterologist. I have TON of questions for him that I have written down. I also am having my husband go with me so he can see the real deal about this and maybe be more supportive.

IronedOut Apprentice
IronedOut
Posted
Okay so Im so confused now....

I can NOT have rolled oats? If a food contains gluten do they HAVE to say it? HELP!!!!!!!

Oats in any form are considered by most to be on the NO list. There is a lot of info/research out there that indicate it MAY be okay for some Celiacs. Oats in the US are considered too cross-contaminated for us at this point, although there are some places that are starting to guarantee pure oats. Search here for any number of threads on the subject.

There is no current law that states that a company must list gluten in products. The newest law says that they must list the 8 known allergans, so we at least get the wheat listed. There are a number of companies (ConAgra, Kraft, etc.) that have said they will not hide gluten in their ingredient lists. So far, it has been a pretty good system although it has only been since the start of this year.

To get the hang of this diet, I started with the 'fresh' basics like fruit, veges and meats and added the products I knew to be gluten-free from the health food store. Slowly, I have added mainstream items back in to my shopping as I have been able to verify them. Long, slow and frustrating, but worth the effort for me.

Keep checking in here and it will get easier. I'm still not happy with all of this but it is getting better.

Claire Collaborator
Claire
Posted
Clarie I understood what you were getting at I just didn't want you to think I was taking this lightly. I am very uninformed about this disease and hopefully that will change tomorrow when I see the gastroenterologist. I have TON of questions for him that I have written down. I also am having my husband go with me so he can see the real deal about this and maybe be more supportive.

I do hope you have a knowledgeable GI. One of the first things you get to know about celiac is that most doctors are in the dark - they just don't know much about the disease, often give patients poor or false information. I would suggest that after your appt. you come back here to the forum and share your experience - tell us all what the GI said. Many people on this forum have been around the celiac block many times and have been misdiagnosed, laughed at and even been referred for psychiatric treatment. They will tell you if your getting solid information.

If you get anything less than informed, supportive help from your GI - run for the exit. There are some knowledgeable doctors out there but they are not lining up. I recently got lucky and met a doctor who went beyond my limited expectations. Good luck. Claire

Guest BERNESES
Guest BERNESES
Posted
I am very uninformed about this disease and hopefully that will change tomorrow when I see the gastroenterologist. I have TON of questions for him that I have written down. I also am having my husband go with me so he can see the real deal about this and maybe be more supportive.

hey Jodi- Most of us, including me, knew absolutely NOTHING about this disease when they came to this site. Many of us have had doctors that knew even less! But....stick around here, ask all the questions you want and need to and vent when necessary. The people on this board board have been my lifeline in terms of knowledge, information and support. You should be proud that you are gluten-free! beverly

Archived

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

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


  • Member Statistics

    • Total Members
      131,634
    • Most Online (within 30 mins)
      7,748
    Tiana
    Newest Member
    Tiana
    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

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.