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Gluten Free: Day 1


mrsmuffin

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mrsmuffin Newbie

Hello all! I was diagnosed with Celiac and have started my new way of living. I am pretty much asymptomatic, and was diagnosed through biopsy because I went to have a colonoscopy and upper endoscopy due to severe anemia. I really believed that my anemia was due to heavy periods, but they wanted to rule out colon problems since my grandfather died from colon cancer. Thank goodness my GI doctor wanted to do the upper endoscopy also. He told me yesterday that he really was not expecting me to have Celiac, but that was indeed the case.

I am also planning on having my 11 year old tested as he has had digestive issues for the past few years, and I am wondering if this could be the answer to a lot of questions.

Anyway, I just wanted to introduce myself. I have already learned a lot by reading some posts, and can see that this is a very supportive community!

-Holly


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mamaw Community Regular

Hello & Welcome to Our group...

I can say without a single doubt this gluten free lifestyle change is way better than colon cancer...Glad you found the correct path to follow. Being gluten-free is not always easy or convienent but it is all worth the learning curve to be healthy. If you have questions please ask...

squirmingitch Veteran

Welcome Holly! There are great people on this board. Everyone is sooooo helpful. And BOY!, are you ever fortunate to have a doctor "in the know" or at least not obtuse to the fact that celiac disease exists. Get your son tested & don't let him go gluten free until all the testing is done with otherwise it will skew the test results.

pianoland Rookie

You're so fortunate to have found out despite not having any symptoms. Although, I wouldn't be surprised if you start to see improvements in your health/energy in the next few months. I didn't realize how tired I was before I went gluten free.

I know it's overwhelming at first but it becomes second nature.

Raven815 Rookie

Welcome Holly,

I am also new here and I am so thankful I found this board. They are some of the most warm and caring people I have ever come across. I believe I have DH and I was so prepared when I went to an uneducated derm just from reading about it here. I thought I knew a lot about celiac (Mom has had it for about 30 years), but I now realize that I am just scratching the surface.

Laura :P

Mateto Enthusiast

Hello! You'll learn a lot, even some things you didn't want to know....but then later on you realise how happy you are you've learnt it!

GFinDC Veteran

Welcome to the site Holly (MrsMuffin),

There are some other people on the forum who don't have symptoms also. Most likley your doctor found it before symptoms developed. But there is a chance you will notice things improving as you go that you didn't realize were symptoms also. It might be a good idea to write down what you eat each day and how you feel, including mood and energy. Celiac has around 300 symptoms and they are not all digestion centric.

Here's some light reading for starters. Feel free to ask questions too. We all learned from scratch also. :)

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?


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IrishHeart Veteran

Hello and welcome!

May I also point you to this thread--more "light reading for you" :lol: (and so I do not bore everyone to death by writing it all it again )

Maybe something on here will help.

Best wishes to you!

IH

mrsmuffin Newbie

Thank you all for the warm welcome! I am so happy to get any information that I can. I know that I will see improvement in ways that I didn't even realized needed improvement!

I just heard back from my son's pediatrician this morning and he was indeed biopsied last year when he had an upper endoscopy. I am glad that he does not have Celiac at this time, but I was also looking forward to a possible explanation for the issues that he has had. We will keep goign on his current plan and I will have him tested again in a few years.

Thanks again for all of the support!

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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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