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

Celiac Disease?


cusefan15

Recommended Posts

cusefan15 Newbie

Hello all,

My symptoms began approximately 18 months ago. Essentially, I was suffering from extreme bloating and constipation. My pcp ran a celiac panel. The results were as follows:

IGA AGA: 86

Ref range: >45 pos

IGG AGA: 46

Ref range: >45 pos

IGA TTG: 13

Ref range: >19 pos

The gi doc ran an EMA (which came back negative; at that pt. I had been gluten free for a couple weeks). After reviewing the results he said that my symptoms didn't fit celiac, and that the negative ttg test was a far more accurate indicator. As a result he dxed me with ibs.

Since then I have developed and been diagnosed with the following:

Chronic Fatigue (this is the worst of my symptoms)

Episodes of hypoglycemia

constipation

bloating

diffuse/radiating hand pain

recurring fungal infections

clouded thought pattern

dry eyes (this one sucks too)

low vitamin d (had been supplementing)

floating stools

muscle spasms

dizziness upon stnading

stomach growling

slight macrocytic anemia (but b12 was 485)

decreasing wbc (lost 40% since the start of this, now right at borderline)

This may, I went to another gi doc. He didn't want to biopsy. So I decided to go gluten free. Its been ~ 6 weeks and my gi symptoms have seemingly gotten better but I am still constantly tired. Anyways, I am going to yet another gi doc this week. Not really sure what to expect since I have been gluten free for a month and a half but I am wondering if I can expect any of my other symptoms to resolve/ whether I have celiac disease. Anyways, does anyone have any thoughts?

Thanks,

Jake


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



Celiac.com Sponsor (A8-M):



Marz Enthusiast

Hi there and welcome :)

I think it can take a while to start feeling 100%, especially if your vitamin levels are low. Many people recommend probiotics, digestive enzymes, liquid vitamins to promote a healthy gut and support your gut while it's healing.

You might find that you have another food intolerance on top of gluten that's keeping you down - try eliminate dairy and maybe soy for a week and see if your energy level improves? In the case of dairy, the milk protein casein is similar in structure to gluten, and can cause existing antibodies to continue reacting to the dairy ingested. The gluten/dairy intolerance combo is fairly common I'm afraid. (Somebody shout if I'm wrong here :) )

If you've been off gluten for a month, the new GI doctor might need you to do a gluten challenge for a few weeks - otherwise the biopsy may show normal villi since it hasn't been damaged by gluten the whole month and has recovered somewhat. Keep in mind that you might find yourself 10x more sensitive to gluten now, and that would be a strong indication that you are gluten intolerant, if not full blown celiac.

Sorry about the fatigue - I'm not sure what else to suggest, but it's a common symptom in celiac disease. Hope you find the cause soon!

Skylark Collaborator

Sorry to hear about all the trouble. Between the high AGA and feeling better not eating wheat, some of your symptoms could definitely be gluten intolerance. You wouldn't have AGA if your body was completely nonreactive to gluten. You can't worry too much about a "celiac" diagnosis. If gluten makes you sick, don't eat it. I know someone with dry eyes and fatigue from another autoimmune disorder called Sj

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,868
    • Most Online (within 30 mins)
      7,748

    Tess24
    Newest Member
    Tess24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. 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/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
    • Scott Adams
      I am so sorry you're going through this. It's bad enough to fight for a diagnosis and manage this disease, but to have your partner use it as a weapon against you is truly devastating. What you're describing isn't just a lack of support; it's abuse, full stop. Controlling your food and money is cruel, and his pleasure in your misery is chilling. Please hear this: the kindness from that woman at the food pantry is what you deserve. It's a glimpse of the real world, where people care. You deserve to eat, to heal, and to have peace. His actions are the biggest barrier to your health right now, and you are not broken—you are surviving in an impossible situation. Don't give up on that lifeline you've found.
    • Colleen H
      Thank you.. Christina My anxiety is through the roof.  I think it was from eggs.  I really don't know because my eyes feel sore. Like I'm allergic to them.  I was defient in B12.   My heart is pounding and it won't stop.  Not sure what to do.   I don't have much support other than this forum.    Colleen 
×
×
  • 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.