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

Feeling Miserable, Would Love Some Imput!


Snowypony

Recommended Posts

Snowypony Newbie

Hello all!

So I've been having tummy troubles for quite some time... I of course went to my doctor and asked if it 'could' be a gluten issue and he brushed me off and told me I was too old(just turned 30) to be showing symptoms now.

I can only remember having some issues as far back as my late teens/early 20's... Basically I'd get really sluggish and foggy brained after I ate meals with gluten in them and in my early 20's I started having random bouts of diarrhea for no reason I could figure out. This last year or so it seems to be getting worse... I'm so tired all the time, having stomach problems more and more... It's basically get bloating, gas, diarrhea(and sometimes a few days without going at all), just general discomfort and pain in my right side occasionally. I've had every organ checked so far except my ovaries, uterus and have not had any cameras stuck in places they don't belong(shudder). Last year for a time I started randomely breaking out in hives but that stopped awhile ago, I also was diagnosed with arthritis in both my knees two years ago and I have sciactica troubles on my left side.

I'm trying to go gluten free, it's only difficult figuring out where all the hidden gluten is. After the first three days I wasn't nessesarily feeling better(I know it can take months) I was just feeling a little perkier and clearer headed, if that makes sense... But then yesterday my husband got me a gluten free pizza from dominoes. Obviously with eating out, there is always a risk of contamination and today I feel awful, the nausea came back and had loose stools(sorry) several times and lots of abdominal discomfort and the sore throat came back.

So anyways, thoughts, opinions, advise? It would be greatly appreciated as I don't know anyone who has this and apparently do not have a good supportive doctor either.

Also quick question, do any of you get super starving if you get glutened and after you get diarrhea?


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Dominos isn't gluten-free enough for celiacs... sorry you aren't feeling well now.

I was diagnosed at 38, and I've had stomach issues forever. Nothing horrendous, but enough for me to have not felt well and have pain... often. You are definitely not too old. I would get tested for celiac as soon as you can since you must continue to eat gluten for an accurate test.

Get some books on celiac and read up on it (Green's book was great for me), or go through past posts here. There is a wealth of information on how to eat gluten-free. Once you go through all the labels once, and toss your old soy, worchestershire, teriyaki and some barbque sauces, the cooking becomes easier. I'm only into gluten-free eating for two months and it's become really easy already. Hang in there.

I was waaaayyyy hungrier when I was undiagnosed. I got the shakes if I didn't eat every 2-3 hours. My appetite has dropped a bunch now. Hugely. I forgot to eat for about 8 hours the other day by accident... that NEVER would have happened when I was undiagnosed.

Best wishes.

Snowypony Newbie

Is it possible to have a similiar reaction to something starchy that is gluten free before your gut is healed up? Had a few gluten free cookies and boy am I paying for it, bloated and had some stomach acids coming up my throat.

But yes this site has a lot of useful information, I read that I should be eating only whole foods right now... I'll admit that a lot of my diet is/was processed food, I rarely ate fruits and veggies so I am having difficulty figuring out what I can and can't eat right now. I'm not sad about it though, if this is what I have and all I have to do is eat a certain way to feel better and finally get relief from years of suffering... Well nothing to be sad about that. :)

I'm going to a different doctor tomorrow to discuss maybe getting the blood test done, since it's only been a few days since I've tried to stop eating gluten and still don't feel good at all, should I try eating something gluten tonight? I really, really don't want to though, lol.

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. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    2. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      GI DX celiac despite neg serology and no biopsy

    3. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  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--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
×
×
  • 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.