Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm So Mad!


marcia24

Recommended Posts

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,846
    • Most Online (within 30 mins)
      7,748

    Fultonn
    Newest Member
    Fultonn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.