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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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    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
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