Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Mid-diagnosis and waiting for answers..


Cath T

Recommended Posts

Cath T Newbie

Hi guys!

 

I’ve recently had blood tests to check for celiac (amongst other things) and am (im)patiently waiting for the results. 

 

I’ve been doing a lot of reading on celiac lately and so many of the symptoms fit - nausea and upset stomach, cramps, indigestion, very noisy stomach, exhaustion, brain fog, various joint and muscle aches and pains, depression and anxiety, weight loss (about 18lbs) and loss of appetite... except sometimes when I’m starving hungry five minutes after eating?! After 3 weeks of keeping a food diary the link between feeling those things and eating gluten seems pretty solid.


Over the last few weeks though, I feel like I’ve just got steadily worse to the point that even when I eat a completely gluten free meal my stomach is pretty unhappy, although the only symptoms I get are nausea and a bit of pain and churning. I also think I’m getting more sensitive to much smaller amounts of gluten. Oats have not bothered me in the past, but this morning I had porridge and it’s made me feel awful. I know that oats themselves are gluten free but can easily be contaminated with other grains, so I’m guessing that’s my problem! 

 

Has anyone else experienced either of those things? I’ve been ill for quite a while now, getting steadily worse over the last few months, but now I feel like the link between gluten and the symptoms is becoming less clear! I’m getting worried that my tests are going to come back negative (though that sounds a bit odd - I would be very happy to get to keep eating all my favourite foods at least!) and I’ll be no closer to finding out what’s making me feel so terrible. 

 

Catherine 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, Catherine!

Not only can oats be contaminated with gluten-containing grains, about 10% of celiacs react to oat protein the same way they do wheat, barley and rye.

Also, it is common for celiacs to develop allergies/intolerances to non-gluten foods. Celiac disease creates "leaky gut" syndrome that allows larger than normal protein fractions from the food we eat to enter the blood stream where they are detected as invaders which then causes the body to generate antibodies to them.

Keep us posted on your test results.

Cath T Newbie

I didn’t realise that about oats! Thanks, that’s useful info ☺️

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,299
    • Most Online (within 30 mins)
      7,748

    Lozzaka20
    Newest Member
    Lozzaka20
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kathleen JJ
      @cristiana First of all I want to thank you for your clear and gentle approach to my questions and emails. I was quite in shock because we were totally not expecting this scenario. We're 2 weeks later now and things have settled more. After the biopsie came back positive the rest of our family got tested as well but non of us have it. But now we know what we're up against, we told him. We laid out a table with crisps he likes (and are gluten-free) and had a little festive Friday-night moment and then told him that we finally had the results of his test. We had explained the gastroscopy to him that the doctor had found some substances in his blood and wanted to look at this tummy from the inside. We told him that he had seen that there was a little wound there, explaining the horrible pains he had had. That it was easy to cure this wound and make that it never would come back: leaving out some type of foods. Both our children had been asking us for a long time to take a packed lunch to school instead of eating at the cafeteria so we ended with the 'good news' that they now can bring a packed lunch. Our daughter was over the moon, our son at first as well but then he was really sad about leaving his friends behind at the dinner table (children who eat hot meals and packed lunches are different dining areas) and that he would not be able to sit with his friends who take packed lunches as the seats are set and he's the last one in and would have to sit alone. So that was quite sad [I went to the headmaster and asked her to maybe have a shuffle of the diner tables after New Years so he also can sit with a friend and she was going to look into it]   We are now trying out different types of foods. I at this point have no idea what to put in his packed lunch as before I'd take some sandwiches and put cheese or ham on them, but the gluten-free bread I've found so far doesn't really allow for that (it breaks and falls apart). So now I'm on a hunt for nicely tasting things to put in his lunchbox.   I've been shocked somewhat to see that a lot of gluten-free products are indeed gluten-free and thus healthier for him, but are also contain much more fats and sugar then their gluten full counterparts... I didn't expect that to be honest...   Anyway, you mentioned that your daughter and her friends love your gluten-free cake. I'm very interested in a recipe. It is customary in Belgium that if a child has his birthday, they give a treat to the rest of the class, and that treat is most often cake or cupcakes. He will not be able to taste anyones treats anymore so I asked the teacher for all the birthdays and am planning to bake some for him right before those birthdays, give to the teacher so she can give to him. But this entails I have a good cake recipe 🤭. Would you be so kind to share this with me?   Kind regards, Kathleen
    • Raquel2021
      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
    • Scott Adams
      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.  
    • Scott Adams
      It might make sense for you to find out if they've run a celiac disease test on you, and if not, consider planning for it.
×
×
  • Create New...