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

gluten-free Roller Coaster

Chiron

Recommended Posts

Chiron Apprentice
Chiron
Posted

I have been gluten free for 3 weeks now and my day to day health has felt like a roller coaster. About 1 week after going gluten free I had what feel like two miracle days. I felt better than I have ever felt in my life (celiac symptoms went undiagnosed for 12 years, now biopsy confirmed celiac). I had incredible energy and my joint pain and GI symptoms vanished. Then I found myself bed ridden with body pains and bad D once again after eating out for the first time (even though everything came from the gluten-free menu at Outback Steakhouse). After a couple of days I felt somewhat better, then tanked again. Thas has continued. For example just yesterday I barely crawled out of bed. My joints were so inflamed I had trouble walking around my apartment. Today I am bubbling with energy (though still bad D) and haven't needed even any OTC pain killers, even though it is pouring down rain here- which usually gives my joints lots of grief.

Is this normal? I am being very strict about what I am eating and haven't eaten outside my own gluten-free kitchen again, but know there is a huge learning curve with this. I just found out that the breakfast cereal I started eating was wheat free but not gluten free. Is this roller coaster coming from other sources of hidden gluten? I have also gone dairy free for two weeks, and am eating mostly whole foods (fruits, veggies, lean chicken, rice, beans, peanut butter, soy cheeses, rice milk, rice pasta) and few of Amy's Brand frozen meals that are DF/gluten-free. I am so scared I am going to eat the wrong thing I won't buy anything that isn't specifiically labeled Gluten Free until I figure this out. The nutritionist who helped diagnose the Celiacs hasn't found any obvious gluten or dairy sources in my Food Log.

Since I have had a handful of days where I have felt better than ever I am optimistic, but the ensuing bad days have been harder to handle now that I know what it feels like to feel good.

What can I do to help the good days outnumber the bad?

Chiron

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

It may take some time before you really feel the effects of the gluten free diet. You have to remember, that it took time for the damage of occur and likewise, it will take some time for the healing.

The gluten free diet is very complex in the beginning as you are finding out. The learning curve is very steep.

Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten.

Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products.

Patience and diligence will help you along your way. Good luck.

kenlove Rising Star
kenlove
Posted

Momma Goose summed it up well, it just takes time.

I'm lucky I don't have trouble with Amy's but many do. I will not go to Outback anymore though yet many on the forum don't have trouble with them. Be careful of the rice milk, it's not all gluten-free. You have to read the fine print on everything and get to know the chemicals and even then -- dont always trust what you read.

When I had a lot of joint pain my friends in Japan said to eat gobo or burdok root. I shave it up in salads now and it's helped a lot.

Good luck

Ken

I have been gluten free for 3 weeks now and my day to day health has felt like a roller coaster. About 1 week after going gluten free I had what feel like two miracle days. I felt better than I have ever felt in my life (celiac symptoms went undiagnosed for 12 years, now biopsy confirmed celiac). I had incredible energy and my joint pain and GI symptoms vanished. Then I found myself bed ridden with body pains and bad D once again after eating out for the first time (even though everything came from the gluten-free menu at Outback Steakhouse). After a couple of days I felt somewhat better, then tanked again. Thas has continued. For example just yesterday I barely crawled out of bed. My joints were so inflamed I had trouble walking around my apartment. Today I am bubbling with energy (though still bad D) and haven't needed even any OTC pain killers, even though it is pouring down rain here- which usually gives my joints lots of grief.

Is this normal? I am being very strict about what I am eating and haven't eaten outside my own gluten-free kitchen again, but know there is a huge learning curve with this. I just found out that the breakfast cereal I started eating was wheat free but not gluten free. Is this roller coaster coming from other sources of hidden gluten? I have also gone dairy free for two weeks, and am eating mostly whole foods (fruits, veggies, lean chicken, rice, beans, peanut butter, soy cheeses, rice milk, rice pasta) and few of Amy's Brand frozen meals that are DF/gluten-free. I am so scared I am going to eat the wrong thing I won't buy anything that isn't specifiically labeled Gluten Free until I figure this out. The nutritionist who helped diagnose the Celiacs hasn't found any obvious gluten or dairy sources in my Food Log.

Since I have had a handful of days where I have felt better than ever I am optimistic, but the ensuing bad days have been harder to handle now that I know what it feels like to feel good.

What can I do to help the good days outnumber the bad?

Chiron

Chiron Apprentice
Chiron
Posted
  • Author

"Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten.

Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products."

------

I did indeed do a major kitchen overall (thank to advice on this site). I have all new cutting boards, colanders, toaster oven, serving spoons, pots and pans etc. I live alone so there is no risk of cross contamination.

I haven't checked my toiletries b/c I don't have the skin symptoms. Is this still a risk?

I actually work in a commercial kitchen that is not Gluten Free (attached to a gluten filled bakery). My employer has been great about letting me focus on naturally gluten free dishes, but we strain pasta in the same colander in which we clean veggies. I do taste the dishes I make (less than 1 oz sample)-Is this enough to make me sick? I haven't taste tested any obvious gluten dishes but cross contamination is guaranteed. Yikes!

Chiron Apprentice
Chiron
Posted
  • Author
Be careful of the rice milk, it's not all gluten-free. You have to read the fine print on everything and get to know the chemicals and even then -- dont always trust what you read.

Ignorance is not bliss. The rice milk I have been drinking says "Gluten Free" on the label. Rice Dream, Enriched, Organic. I searched past posts on the site which say that this brand contains gluten. Has the product been reformulated- or can they falsley claim gluten free? Evidently past labels admitted to trace amounts, this one claims "Gluten Free." I will forego this brand just to be sure, but am curious for future reference as I try to navigate the gluten-free path.

kenlove Rising Star
kenlove
Posted

The kitchen has got to be a problem. I taught 3 or 4 times a week at the culinary school here in Kona but had to cut down to 1 day a week and some lectures. I can't go into the kitchen for 2 days after a bread class. There is just too much flour in the air. You have to be really careful of the CC from the bakery, not just the crumbs but where the batters are mixed.

good luck!

Ken

"Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten.

Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products."

------

I did indeed do a major kitchen overall (thank to advice on this site). I have all new cutting boards, colanders, toaster oven, serving spoons, pots and pans etc. I live alone so there is no risk of cross contamination.

I haven't checked my toiletries b/c I don't have the skin symptoms. Is this still a risk?

I actually work in a commercial kitchen that is not Gluten Free (attached to a gluten filled bakery). My employer has been great about letting me focus on naturally gluten free dishes, but we strain pasta in the same colander in which we clean veggies. I do taste the dishes I make (less than 1 oz sample)-Is this enough to make me sick? I haven't taste tested any obvious gluten dishes but cross contamination is guaranteed. Yikes!

Eric-C Enthusiast
Eric-C
Posted

Funny you mention Outback.

We went there last night with some friends. I am allergic/moderately tolerant of Gluten so keep that in mind. I asked the waitress for the gluten-free menu and next to each steak it listed "stay away from the au ju". I asked the waitress if the au ju had gluten in it. She said no but wasn't sure why it was listed. She went and got the manager and the manager told me there is no gluten but they prepare it at th restaurant themselves and cannot say its gluten free because of CC.

Something to keep in mind. I'm not that intolerant, if I go 2-3 days without gluten I have have a sandwich so the minor stuff is totally transparent to me. I don't eat anything with gluten at all but for those who are extremely intolerant ask a bit more of what they consider gluten free at a restaurant. If there was CC in the au ju I'd personally never know but others may.

If its an education issue I wonder how may waiters/waitresses would say "No there is no gluten in the au ju", although the correct answer they cannot say it won't be contaminated.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    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
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.