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

Seen The Specialist.... Depressed :-(

jo-marnes

Recommended Posts

jo-marnes Rookie
jo-marnes
Posted

So after positive bloodwork following non specific symptoms (occasional stomach pain), I finally saw the gastro specialist this week.

She says given my results she is certain I have celiac, and is scheduling an endoscopy for me within the next 6 weeks. Dreading that.

I've had to take the kids for screening tests - that was NOT fun. Results next week.

So these look like my last few weeks eating gluten containing foods. Suppose I should make the most of it.

Not THAT bothered about the gluten free diet, but am bothered about how others are already treating me.... people already saying 'you'll have to bring your own food' to meals etc. Am frustrated that they won't even try to cater for me... I mean, you wouldn't serve meat to a vegetarian would you? I've tried to explain that it's not difficult really, there are plenty of foods without gluten. But I am generally met with disinterest and the 'it's not my problem' attitude. Which is true, it's not their problem. But I don't want it to be MY problem either. I am very much sulking about it at the moment.... it's not fair, why me? etc etc I'm 27 years old, I am the healthiest, fittest I have ever been in my life, I've lost 25 kgs over the past 3 years and NOW I'm told I have a disease. And it COULD even have been my weight loss that has triggered it. You can't bloody win can you?

So I've not had a period since November, specialist says celiac might be making me infertile if I'm not absorbing all the nutrients required etc... thankfully I've had my kids and I'm not planning any more, but wasn't expecting to be told that. I don't think anyone at my age expects to be told news like that. I'm having further bloods done - iron, folates, Vit D, Vit B12 and bone density - to see if that's potentially what's happening. Not hugely fussed about not having a perios, but not excited at menopause yet either!!!

Sorry for the whinge.. just had to get it off my chest!

Jo xx

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

This is the place to whine when you need to. If anyone can understand those feeling we can here.

I know it is hard to look at your diagnosis as a good thing but once you are on the diet you will be staving off a lot of issues that those of us who went undiagnosed for years have had to deal with. Read a few signatures and be glad they won't be yours in ten years.

Chances are your periods will come back and that really is a good thing as you don't want an early menapause, too many of us have had to go through that.

It will be hard to deal with the social aspect of being gluten free but you will learn how to best cope with that. It can be done.

If you are really dreading the biopsy there is no law that says you have to have one. If your blood work was positive you need to be on the diet no matter what the results of the biopsy are. There is also a risk of a false negative on the biopsy so even if your biopsy results are negative don't think you don't need to do the diet.

We are here to help in any way we can. Ask any questions you need to and do feel free to vent if needed.

shopgirl Contributor
shopgirl
Posted

Don't worry about whining. This is the place to do it as we're all in the same boat. I've sulked plenty. And I still sulk sometimes but, as time goes on, it becomes less of a dominating aspect of your life.

But don't stress about the endoscopy. It's much more pleasant (and less time consuming) than a dental cleaning.

ravenwoodglass Mentor
ravenwoodglass
Posted

But don't stress about the endoscopy. It's much more pleasant (and less time consuming) than a dental cleaning.

Yea it is a pretty easy test. Basically you go in, go to sleep, wake up and go home. You do have to have someone drive you there and they have to wait and take you back home again.

jo-marnes Rookie
jo-marnes
Posted
  • Author

I'm not getting put to sleep!

If I was having a GA that'd be fine. No budget for that apparently!

mushroom Proficient
mushroom
Posted

Well, strictly speaking it's not putting you to sleep. They put you under sedation, and they give you a drug in your IV that prevents you from remembering anything that happened during the procedure. It is not a GA and you recover right away (although you shouldn't plan on dancing the highland fling afterwards.)

Archived

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

Go to topic listing

  • 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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,862
    • Most Online (within 30 mins)
      7,748
    ZoesDad
    Newest Member
    ZoesDad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      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
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      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
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.