Jump to content
  • 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):

To Get Tested Or Not?


xMichellex

Recommended Posts

xMichellex Rookie

How important is it to get a diagnosis? What are the benefits of getting a diagnosis versus not getting one? I am a grad student on my school


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Since you are already having some success with being gluten free, I would not worry about testing.

You would have to be eating gluten pretty heavily to test positive and still you might test negative even if you have Celiac. It seems to me that you may not want to pay that price while you are in grad school.

The fact that you are also realizing cross contamination is an issue is another clue that you are either gluten intolerant or Celiac.

I had a similar experience in gaining a huge amount of weight and yet I was unable to eat. I don't know why they continue to think that Celiacs are only skinny emaciated people when there are plenty of us who had severe unexplained weight gain.

My weight has gone from 180 to 120 in 5 months. I think it was swelling, inflammation, and low metabolism due to Celiac. I am eating more than I ever have and am healing well and my weight is stabilizing.

I think you should stick with vigilant gluten free eating and see if there are more improvements. For me the 4th month showed the most significant improvement. Hang in there. I know it is hard to cook everything and be in grad school. But if you feel better it will be so worth it in the end. Hope you feel better soon.

xMichellex Rookie

My weight has gone from 180 to 120 in 5 months. I think it was swelling, inflammation, and low metabolism due to Celiac. I am eating more than I ever have and am healing well and my weight is stabilizing.

I think you should stick with vigilant gluten free eating and see if there are more improvements. For me the 4th month showed the most significant improvement. Hang in there. I know it is hard to cook everything and be in grad school. But if you feel better it will be so worth it in the end. Hope you feel better soon.

Thank you for sharing that with me. It sounds like you have had a rough time yourself. I know this is not much consolation, but your advice has gone a long way to motivate me to keep this up.

I think what I find absolutely overwhelming is trying to diet and trying to go gluten free. Perhaps I should give myself permission to just go gluten free for several months and give myself a chance to heal, then incorporate a diet. Baby steps, right?

Thanks again for sharing and for the advice.

eatmeat4good Enthusiast

Thank you for saying I was helpful! That makes me feel good.

Yes, I wouldn't try to diet at all right now. Just be sure you eat a lot of protein as that helps cells repair themselves quickly. I didn't start dropping weight right away, but once my body realized there would be food coming in on a regular basis, I just started melting away. I was so relieved. When you try to diet and you are still sick from gluten, your body tries to hang on to everything you eat and stores it as fat.

My biggest secret to losing weight is to NOT diet. Eat as much meat and nuts as you can. Both are good protein and the nuts are good fats. Then, if you tolerate veggies and fruit you can eat them too. Keeping yout grain intake low will also help. When I eliminated grains and increased my nut and meat intake I really saw a big difference fast.

If you try that let me know how it goes. I wonder if it will help you.

You should never ever let yourself get hungry. I think you will quickly find that your mental functioning is improved if you increase protein and good fats. It sure did for me. :)

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 ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    2. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    4. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...