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I'm So Mad!


marcia24

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marcia24 Apprentice

I am so angry about this....had a positive blood test and get my endoscopy next Thursday. I have always been careful to be healthy...always ate lean protein, fruits/veggies, and whole grains. I run and/or lift weights 5 days a week, don't drink or smoke, wear sunscreen...everything and I am the one who gets sick when everyone around me seems perfectly healthy without even trying! I know this seems stupid and I am better off than a lot of people, but sometimes I think why even bother trying to be healthy...I guess I just need to get out my negative feelings -thanks for the support of everyone here!


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Mango04 Enthusiast

Your positive tests results might be a blessing in disguise. This will save you from further (more serious) health complications down the road. Since you're healthy and you eat protein, fruits, veggies and whole grains, all you need to do is switch to gluten free whole grains and your set! (Okay I'm oversimplifying it a little). But still, you can be a Celiac and still be healthy (even more healthy than some non-celiacs actually). Hopefully the venting helped :) , and I hope you start to feel better soon!

lonewolf Collaborator

Vent away, you have sympathy/empathy here. It's okay to "grieve". I used to play basketball in college, became a PE teacher, always ate really healthy food, exercised, etc. and I got so sick I honestly thought I would die. I still get a little frustrated at times when I see people around me eat whatever they want and have no apparent health problems and be skinny. I am thankful though that following a restricted diet has helped me to feel so much better and has allowed me to resume my active life. I hope you start feeling better soon.

Warrior Woman Rookie

It may appear that it is unfair and sucks- well it does suck but there isnt anything that is going to change the facts at this point.

But dont thnk just because you have celiac life is over. Just dont eat gluten- and things remain the same or get better. You may have symptoms that you didnt realize were symptoms (You didnt say why they did a blood test for celiac)

And dont ever give up on eating healthy and exercise. Believe in it- you are depositing into your health bank that you get back many years later. The older you get the more important nutrition and exercise are. There will be MANY people looking at you and wishing they were as smart way back when.

And being thin has NOTHING to do with being healthy. My bf is thin and is extremely unhealthy. Eating healthy fruit/veggies/lean meat/beans/nuts and letting your body come to a natural weight while exercising is healthy- not having to fit into a size 2 pants!

Grieve, let it settle in and move on. It is all you can do

I also dont see this as something that makes us different in some bad way. There is plenty of discussion on whether we need or should eat grain to begin with. Our bodies are just doing us a favor in my opinion!

Lorraine

tarnalberry Community Regular

The fact that you've been eating so healthy is probably what has kept you from being any more unhealthy. Your genes and some environmental trigger (from birth, to a virus, to a surgery, to stress) has given you celiac disease... and yeah, it sucks. It'll be a little easier for you to transition to a gluten-free diet because you don't rely on prepackaged, main-stream, wheat-laden foods that others might depend on, so there's one more advantage that your healthy lifestyle has given you.

It's a big learning curve, and will take time and grieving to adjust to, but you can adjust to it, and you're likely to flourish under the change. We're here to support you and answer any questions you have! You'll find lots of tips for foods, advice on avoiding hidden gluten in foods and in the house, help on eating out, ways to avoid cross contamination, recipes or ways to modify your existing recipes, and general social support.

Welcome!

debmidge Rising Star

Marcia, you're not alone ...hubby has been ill for many years (misdiagnosed) and did everything doctors told him to do: eat whole wheat grains, etc. Now in 2003 finding out that it was the wrong thing to do he's not happy. The misdiagnosis has taken a toll on his body and left him with other permanent health issues. He always kept healthy - non smoker, eating well, non drinker - and he sees others who take their good health for granted and they stay healthy while he desperately wants his health back. So we understand what you are talking about.

Guest nini

welcome to the "club" don't go gluten-free until after your endoscopy, but after that REGARDLESS of the results of that, go ahead and go gluten-free. Because your blood test was positive, you absolutely have it, and it is a blessing in disguise. You will soon be heathier than you ever thought possible! Just FYI my Dr. dx.ed me on positive bloodwork alone (and confirmed by positive dietary response) and I didn't have a biopsy. The biopsy has long been considered the gold standard of dx, but this is the medical community relying on outdated information. Many celiac patients don't show full blown villous atrophy in a biopsy, and the Dr.s are unwilling to dx based on that... and then down the road because they continued to eat gluten and got sicker, eventually they did have positive biopsies and by this time have developed many other autoimmune disorders that go along with it. Do yourself a favor and go gluten-free as soon as your Dr. is done with testing regardless of the outcome of the test since you do have a positive blood test. Lucky you!


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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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
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