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Questore

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Questore Rookie

Today is my 2 year anniversary from going gluten free, and I am better.

Of course, I am not as better as I would like to be...58 years of diminishing nutrition has taken it's toll.  I am now on Insulin for the Diabetes that hit two years before the discovery of those nasty alleles in the family genetics when my Niece was diagnosed.  It seems that not enough nutrients cause no end of ramifications to your overall health, but I can say with truth that I am making progress.

I am sleeping well, and actually feeling somewhat rested by the sleep, and evidently am taking up more nutrients for all purposes, since I have more energy, and do more to continue to alter my life to chase a full recovery. In the world's eyes it does not look like much, but when I consider how ill I have been in the past, and how much better I have come to feel, I can ignore other people's opinions.  I will never be the normal active person I failed to be the rest of my life while eaten gluten, but I will be a little less disabled, step by step, and consequently, happy that good things are happening to me, even if it seems like little progress to others who want an instant fix for a problem I have been suffering from since conception.

I wish, of course, to be fully healed from everything my body is reacting to due to lack of nutrients, and continue to take  mineral supplementation in an ionic base so that I can get some of the minerals to the right places.  And I am changing my diet for the fourth time, and cooking differently once again, and getting rid of low nutrient foods as my upper intestine seems to be acting as if the villi are back in place to a degree.  My stomach still protests anything with fiber being put in it.

I only know that going off gluten has made me better, and being properly diagnosed has changed my entire view of myself as being an unhealthy person.  I now only see myself as a starvation victim despite always having had a full belly, and have begun to look at who I have been, and the choices I made from the knowledge that I was a fine racing car operating on watered fuel, and suffering from bad mechanic's who had no idea they should check what was making my engine sputter!

I wanted also to report in, for those that think they will never get past the desire for a hot piece of garlic bread, and the lack of edible pasta...it can be done, and if you will but be patient with your self, and study all your reactions to food, you can design a life that will suit you well enough to enjoy being alive.

 

 


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Jmg Mentor

Thank you for such an uplifting post. Your positive attitude and determination are inspiring, something I'd forgotten that this board was full of. Best wishes for your continued recovery.

manasota Explorer

Questore

Boy can I identify with you.  I was misdiagnosed after 60 years (of a very gluten-filled life).  I have been strictly gluten free for over 6 years.  I have not seen very much progress, if any.  I, too, suffer from many afflictions caused by this diagnosis delay.  It is now these other affliction which make me the most miserable--not the Celiac.  Sadly, I cannot say I have reached a point where I find life enjoyable.  I hope to get there.  I strive hourly to get there.  Please keep posting...

cyclinglady Grand Master

I am so glad that you took the time to update us on your progress.  By doing do, you are helping so many people!  

Hugs!

icelandgirl Proficient

Wow!  Thank you for that post...this will give hope to so many!

squirmingitch Veteran

Hooray, hooray!!!! Progress is GOOD! 

Thank you for telling your story. It demonstrates that healing does happen!

Sheena Newbie

Thank you, I needed to read this tonight. I've been struggling for the past 10 years with celiac symptoms and was completely brushed off and told it was an anxiety dissorder and ibs. It took my sister getting diagnosed for me to get taken seriously and positively diagnosed myself. 

Well, by the time I was diagnosed my teeth were chipping due to vitamin deficiency, my stomach wouldn't digest anything, chronic muscle aches, fogginess, and extreme fatigue.

im still struggling with trying to digest anything with fibre or lactose. Forget gluten-free bread. Luckily the fogginess and exhaustion have subsided so I actually feel like I can stay awake past 2pm to spend time with my kids. Yay for a bit of progress. 

I guess it's just nice to know there's a light at the end of the tunnel and that I won't go crazy craving prawn and lemon pepper fettuccine forever haha. 


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Gemini Experienced

I can assure you that the longer you are gluten-free, the better it gets and, unless you have other underlying conditions that complicate things, there is no reason people cannot make a complete recovery.  Do not stay in a negative state of mind, although it is allowed from time to time....everyone has their bad days.  There is also exceptional gluten-free pasta out there and gluten-free garlic bread can be easily made, for those who wish to have some when they are up to it. I know recovery time can be daunting for many of us but it always takes longer to heal when you do it the natural way, instead of plying yourself with meds. 

Good post, Questore!

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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.
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      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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