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

What If You Don't Go Gluten Free


jodikris

Recommended Posts

i canary Rookie

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

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

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

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

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

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

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

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

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

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

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

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 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

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

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
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
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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,817
    • Most Online (within 30 mins)
      7,748

    GFDF23
    Newest Member
    GFDF23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • badastronaut
      hmm, I only had a colonoscopy. Would be interesting to have an endoscopy done then I guess.
    • Beverage
      You said the colonoscopy showed no damage. Did you also have an endoscopy? The upper colon is where celiac damage would be detected via endoscopy, not the colon.
    • trents
      Welcome to the  forum @maylynn! Have you had a follow-up endoscopy/biopsy of the small bowel to check for healing of the villous lining? If not, it's about time one was done. As Scott mentioned, I also wonder if you have food intolerances in addition to gluten. Oats (even gluten free oats), dairy, soy, corn and eggs are some of the most common ones in the celiac community.
    • Scott Adams
      Is your gluten-free diet strict? Do you eat out in restaurants? If so, you could be getting contamination, and over time that can slow recovery. You may want to get a follow up celiac disease antibody panel done to make sure that your levels have gone down since your last tests. Also, have you had various nutrient levels checked via a blood test, and have you been taking vitamin & mineral supplements since your diagnosis?  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.    Do you still have celiac disease symptoms?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • maylynn
      Hello!  I am here as a last result, hoping for some advice, similar stories, etc. When I was 17, I was diagnosed with Celiac disease. By the time we figured it out my iron levels were so low I had to get infusions, and I had lost 20lbs. in two weeks going from a 5'11 130lbs woman to a 110 lbs. Now, I am 21 and have gained 4 lbs since. Every time I eat a meal, I get three bites in and feel so full that I feel sick. I can't eat a full meal. Something else has to be wrong right? This can't just be more "normal" right? I have done test after test and no doctor in my area can figure anything else out. They have told me I most likely have shrunken my stomach by now with how little I am eating so that has to do with some of the sick feeling. What have you done to gain the weight back? Foods? Workouts? 
×
×
  • Create New...