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cat3883

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cat3883 Explorer

I am new to this forum. I have just been diagnosed with Celiac. My TTG level is 59. My gastroenterologist is doing the biopsy although he said with this level I definietly have celiac disease. I am 49 years young and havent really felt too bad although I have depression, migraines and weight gain. I have the biopsy on Oct 15th. My doc says I am really sick but just dont realize it. He says once I go gluten free I am going to feel like a million bucks. Any opinions?


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happygirl Collaborator

Just wanted to welcome you to the board!

Celiac can present in a variety of ways - from no symptoms at all ('silent Celiac') to debilitating symptoms....and then everywhere else on the spectrum.

Celiac has been linked to the three symptoms you've listed. With the gluten free diet, you may see those improve. You may see things improve that you didn't know were a problem.

Make sure you keep eating gluten until after you have the biopsy.

Some other good websites for your reading (besides this forum and www.celiac.com)

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiac.org

www.celiacdisease.net

www.gluten.net

Let us know what we can do to help. Good luck!

lizard00 Enthusiast

Welcome to the forum!!

I think your doctor is one of the good ones. He is exactly right, you are pretty sick but just don't feel it. Wait until your migraines and depression improve... I didn't realize how sick I was until I felt better. Now, I look back at myself a year ago, and wonder how I made it through the day, everyday.

Please feel free to ask any questions and look around. This site gave me so much information (in fact, most people here are more knowledgable than many doctors!)

It's a lifestyle change, but for the better. :D

hawaiimama Apprentice

My TTG was 74. I knew I felt bad but didn't realize how bad. I'm 3.5 months gluten-free and its a HUGE difference. I've had maybe 2 headaches in that time vs almost daily.. There is a clairity that I dind't have before.

The other thing I've noticed, is that OTC pain meds now completely knock me out vs before they had little effect.

ravenwoodglass Mentor

Welcome, you have a really good doctor there. As the others have said you may just be pleasently surprised at how much of a difference it makes. Sometimes we just don't realize how severely we have been impacted until things get better. It can be hard at first but you have come to the right place for info and support.

Mtndog Collaborator

Also wanted to say Welcome!!!!!!!! :) You DO have a good doctor. It will be interesting to see what happens with your biopsy. Even if you don't feel sick, once you eliminate gluten, you may be surprised at what goes away- from fatigue to headaches. Gluten can cause some CRAZY symptoms in those of us with celiac.

Also, even if you don't feel its effects right now, if you continued to eat it, your risk of GI cancers (which are deadly) skyrockets.

This is a GREAT board- so many good people and tons of experience and information! Welcome!

curlyfries Contributor
I am 49 years young

Me too! :P ....and welcome!

If you want to lose that extra weight, it won't necessarily drop off by going gluten free. Don't automatically replace your bread, crackers, pasta, snacks, and goodies with gluten free alternatives. Actually, in the beginning, it is best to stick to plain meat, chicken, fish, fruits and veggies. This gives your body a better chance at recovering. It also gives you time to sort out what is safe and what isn't, and not worry about "what did I eat that I shouldn't have this time?"

When I started, I decided that since I had to change the way I eat, I might as well do a total overhaul. I have lost 26 pounds so far, and my complexion is so much better......and of course, I am eating much healthier. I never had the willpower to change my eating habits before......this was the kick in the pants I needed!


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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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