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bonnieboo

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bonnieboo Apprentice

after you went gluten free?

Thanks!

b...day 1 without gluten...


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blueeyedmanda Community Regular

Honestly, it may vary person to person. It was a week or so in and there were positive effects I noticed. It all depends how damaged your body is.

It is a change when you start feeling better, and when you spirits start lifting it motivates you to stay on the diet. The longer you are on the diet it gets easier.

Plus, the food has come along way from where it was when I went gluten-free. I feel I have more options and some products even got revamped and taste better.

Good Luck!!! :):):):)

abc Rookie
after you went gluten free?

Thanks!

b...day 1 without gluten...

I felt great about a week in - and then felt worse...who knows if it was cross contamination, other problems (lack of sleep and a cold) or just a withdrawal process. After I started feeling poorly again, I went dairy free...and now, about 6weeks in have gone soy free (1 week off that) and now feel AWESOME! So, either it took the 6 weeks, or I finally hit the magic combination. I also found that in the first month, I experimented with gluten-free packaged foods a lot...and now am eating just cleanly (fruits, veggies, meats, rice, some gluten-free pasta). I think the amount of packaged foods was still hurting my system - so keep that in mind as you go forward.

super-sally888 Contributor

Hi,

I felt much better from the second day.... am only up to Day 6 now. Had chicken with some soy sauce last night (soy sauce has Wheat!) because I was so hungry and that's what was in my fridge. I was itching like crazy afterwards... still itching today, but improving - tummy seems reasonable... touch wood!

Lesson learned! Better to go hungry than purposely eat something with gluten in it.... I haven't looked at eliminating soy or dairy.... I don't take much dairy and enjoy my morning coffee (with milk) too much to give it up just now.

:)

Have bought snacks - raisins and nuts, (what else is ok?)so that I can avoid getting into the "I am so hungry I will eat anything without thinking" trap again...

Hang in there - you will feel better soon... your journey to being well has begun.

Sally

dlp252 Apprentice

I started seeing some small changes within a month or two...try to notice the small things. For instance, I haven't had a sense of smell in years, and shortly after going gluten/casein free I started catching wiffs of things I never would have before. That was kind of fun, lol. There were other things too...very small, but still improvements. I started seeing color in my cheeks again too within those first couple of months. There were other things too, but I just can't think straight right now (had lots of dental work done today, lol).

Here's an old thread I started not long after I went gluten/casein free...lots of people responded with the little improvements they were seeing:

Open Original Shared Link

I also wanted to add that I have had a return of a couple of the symptoms listed there, so I'm betting those are the things that weren't helped by gluten/casein free.

bonnieboo Apprentice
I started seeing color in my cheeks again too within those first couple of months.

Now that would be exciting! It's been literally decades since I've had color in my cheeks, lol!

Thanks, all, for your encouragement.

Guest AutumnE

I felt a difference within the first few days but at almost 9 months out, I'm still not totally healed. I have had a few setbacks regarding other food intolerances coming out after I could actually absorb food again but Im feeling alot better than I used too and my hair is filling in some so I know that my vitamin deficiencies are getting better. It can be a slow road but it is well worth it :)


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Guest cassidy

I felt better after 2 weeks. I could then tell when I glutened myself because I actually had periods of feeling better. It took me about 2 months to get to the point where I wasn't glutening myself regularly so I had some good periods.

My normal gluten reaction lasts for up to 3 weeks. I feel better and better during that time but I still don't feel 100%. That being said it would make sense that the first couple of weeks could still be tough because your body is trying to recover.

par18 Apprentice

For me it was the day after the first full day gluten free. No one told me it "could" be this fast. The most common timeframe I was given was 6 months to 2 years. Now that was depressing! As a result I kept thinking I would experience reoccurance of my symptoms from time to time in the beginning. Because I was so diligent and careful I never did. The longer I went without any return of my orginial symptoms the more comfortable I became. The best advice I can give you is to be careful and don't be surprised if it is quick and don't be discouraged if it isn't. Either way keep at it. Good luck.

Tom

julie5914 Contributor

In a couple of weeks I felt better, and then I felt bad for several weeks, but in a different way. I guess I was adjusting. I started feeling completely better after about 6 months or so.

dionnek Enthusiast

I am still not feeling any better (been 6 months) and my follow up biopsy still showed significant damage (my villi were flat), however, that being said, people were telling me after a few weeks into the gluten-free diet that I looked better (color in face, etc.), and just recenlty I noticed that I have not had as many unexplained bruises on my legs (and my last blood tests showed my iron was normal - yeah!!!!), so I think something is happening even though I don't "feel" it. <_<

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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