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Advice Needed, Im Newly Diagnosed


JessicaB

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JessicaB Explorer

My name is Jessica. I have been through alot since i gave birth to my daughter last year. Since then, which i had a great pregnancy with no problems or sickness, i have had servere stomach pain, bloating etc. I have been to about 5 different doctors and finally

i just got the blood test from my new gastronologist. He was the first one who said that i may have Celiac Disease. I never heard of it. I got my bloodwork back last week and he told me that one of the levels was a 72! Which i think is really high, he said it was. Another level was below normal and he said with those combined that i have celiac disease. I have to get a endoscopy and a biopsy done in January to confirm, but the test said that it is 99% accurate that i have celiac disease. I am worried. I have looked up alot of information but can really use some stories to make me feel like im not alone. Any advice, emails or lists please email me with your stories. Thanks!

lots of luv

jessica

22years old from Maryland


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Lisa Mentor

Jessica:

Don't worry. Celiac Disease is not a life sentence, it is a life style change. That change in your hand. No pills, no surgery, just simply, a diet change.

I won't elaborate here as there are many on this forum that are about your age and many other who develope Celiac Disease after childbirth.

I'm sure that they will be very helpful to you now.

For now, keep your food intake simple. Search this site for recipies, lotions, lipstick, shampoos (that can get in your mouth)

This is a time to study this site and ask as many questions of us as you need. There is a national phrase that is often used, "Celiacs Helping Celiacs".

There is most definately a time to adjust with many emotions, but we are here to help. All you need to do is ask.

Other relies will come.

Best of luck

Lisa B.

traveljunkie Rookie

Hello Jessica, and Welcome!! :)

I became gluten intolerant after taking antibiotics in Feb of this year, and like you I had never heard of celiac or gluten. Now with many months of research, and a gluten free diet, I have never felt better. I look back on all the health issues I've had in the past, and can see a pattern that probably was brought on by gluten. I've had on and off diarrhea or constipation, rashes, joint aches, etc., and I believe the antibiotics just pushed my body to it's limits.

I had blood tests done, and they came back negative. I had been gluten free for months, so it was probably false negative. I have tested positive through enterolab, but regardless of those results, I would have remained gluten free anyway. I did find the diet limiting in the beginning, but now it's just natural to me.

I'm not sure where you live, but most health stores and bigger grocery chains, sell gluten free foods. There are also great online stores that ship right to your door. I do alot of my shopping that way. It'll become easier for you as you learn more. This forum is great, just type in the search, for any topic you want info on.

Don't worry, like the other post said it's just a dietary change, you'll be fine.

Charlene :)

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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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