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

Don't Know What It Could Be Then?


KMMO320

Recommended Posts

KMMO320 Contributor

I posted a few days ago about a possible yeast problem...

SInce April of this year, I have been poked and prodded by 4 different doctors, racked up thousands in medical bills and just been sick for what seems, forever. Since 1997, I have been diagnosed with "IBS" and I just lived with it until I started feeling other things like migranes and dizziness, that is where the new drs came in. Initially, I was deficient in vitamin D and Iron, which is why they suspected Celiac. ALl tests came back negative, but with my IGA deficiency, IBS, immune problems, thyroid and all my other symptoms, my Dr was willing enough to say I had Celiac DIsease and to go gluten-free. Prior to the "diagnosis" they put me on vitamin supplements and before even going gluten-free, my levels were all back up.

Well, It has been 2 months, and while my IBS has seemed to settle (FINALLY!), everything else is the same. Nausea, dizziness, shortness of breath, heart palpatations, foggy head. Always after I eat, and it can happen randomly. Doesnt always happen WHEN I eat, but when it does, it is after I eat. Could be an apple, could be a gluten-free sandwich, could be some chips, could be scrambled eggs. I just never know.

I thought it was yeast, then I thought it was sugar, caffeine, salt, dairy.

So, 2 days ago, after being exclusively gluten free, I started eating it again to see what happened. The first day, I ate a bagel and a muffin. Nothing happened. Yesterday, I ate crackers and cheese. Nothing happened. this morning, I ate a muffin. Nothing. I am waiting and waiting....but I have been feeling fine.

Because my tests were all negative anyway, and my vitamin levels went back up on supplements before even going gluten-free and because I am not having reactions, I am thinking maybe I do not have celiac disease after all. I can't deal with any more doctors or medical bills, and I am thinking it is time for experimentation. I just don't even know how to begin. There is no denying that going gluten-free seemed to help my digestive system, I just want all of the other problems to stop too :(


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



Celiac.com Sponsor (A8-M):



SMDBill Apprentice

I wonder if you could have an intestinal issue that could be caused by sugar, other grains, or a combination of celiac and something else? However, when you ate foods with gluten and had no reaction, and based on the fact that you were diagnosed based on deficiencies rather than blood or biopsy confirmation, maybe you don't have celiac. That's a pretty good challenge to eat that stuff and the fact that it didn't make you sick-er is really a positive because celiac causes damage. Biggest concern to me would be if you had an internal reaction to gluten but didn't feel it. That would be troubling because you'd never really know when you were glutened.

It's troubling for sure. From the surface of it and with medical tests unable to confirm celiac, it does sound a bit like an allergy to something rather than intolerance or celiac disease. Have you begun to isolate foods and reintroduce them slowly to see what causes a reaction? You'd need a journal to accurately track what you ate and what the ingredients were, but that could possibly give you some insight without further medical bills.

KMMO320 Contributor

Thank you, no I havent begun to isolate, but I think that is my next step. My primary was so sure it was Celiac that I guess I jumped on that idea too because it would be so easy to explain. I think I have a big process ahead of me :(

GFinDC Veteran

Please read this article and the study linked in it. This new research (2012) shows 2 possible additional gluten related conditions exist in addition to celiac disease. They are newly identified and don't show up on celiac disease testing. The symptoms can be very similar though.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,499
    • Most Online (within 30 mins)
      7,748

    Kabotabob
    Newest Member
    Kabotabob
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
      @Scott Adams Recently got blood work back and TTG antibodies went from 168.8 to 16.7 and deaminated gliadin was 22 (was not measured the first time). Is this a good start for an 11 month time frame? Just having a hard time with why my symptoms seemed to be flaring up again when my blood work has improved. 
    • dublin555
      I’ve been through something similar recently, and I know how frustrating it can be when nothing seems to work. Based on what you’ve described, it might be worth considering dermatitis herpetiformis, especially with the family history of celiac disease. Testing could give you some answers, and while online kits aren’t as reliable as a GP, they’re a good start if appointments are hard to get. I also found relief through medical cannabis for my eczema, at Releaf, a clinic in the UK that offers eczema medical cannabis treatment. They start with a low dose, adjust weekly, and track progress through online consultations.
    • trents
      Welcome to the forum, @Jaylan! Almost all of the symptoms and medical conditions you describe have been found to be associated with celiac disease. But they can also be caused by other things as well. There certainly is enough circumstantial evidence in your list of medical problems to warrant being tested for celiac disease. Ask your physician to order a celiac panel consisting of, at the very minimum, these two blood antibody tests: total IGA and tTG-IGA. Please do not attempt to limit your gluten intake before the blood draw is taken or you will invalidate the testing. Incidentally, celiac disease is often misdiagnosed as IBS.
    • Jaylan
      Hi there!  I’ve recently been tested for celiac disease, along with other autoimmune diseases. My symptoms started back in 2018 with joint pain in my knees. Since then, it has progressively worsened. I now have joint pain in both knees, elbows, and sometimes my shoulders. The pain is almost unbearable. I feel so stiff in the mornings, and this stiffness can last the whole day. I also experience swelling and warmth around those areas.   Other symptoms include IBS (diagnosed at age 16), restless legs, chest pain, tiredness, miscarriages, bloating, and sharp pain on the right side of my stomach. In the past, I’ve also had problems with a vitamin D deficiency, and my serum folate levels recently came back very low.   My question is: How likely is it that I have celiac disease?    
    • Rebeccaj
×
×
  • Create New...