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

Going Round In Circle With My Dr, Can Anyone Help Me?


ninconpoop

Recommended Posts

ninconpoop Newbie

Hey there all, im a new member of this formum and i wonder if any u guys can help me as im terribly confused. I have been suffereing from fatigue a very very long time, ive been tested for iron deficiency im normal, my thyroid is also normal, and i just was getting nowhere.

Then my symptoms got worse and i got terrible stomach aches and nasty wind, and i started to wonder if it was my food that was making me ill, since i was getting nowhere with the drs i paid to have the first step intollerance test with York Laboratories in England which tells u positive or negative if you have a food intollerance.

My results came back as positive so i went to my drs and they tested my blood again for iron a full blood count and Transglutaminase antibodies and Endomysial tests as he said my symtoms were like Celiac, the bloods all came back as normal, as did the Transglutamines.

I went on an exclusion diet when waiting for the results as advised by my Dr to help the diagnosis and I felt much better, now today when i got my results I have await the endomysials and until then I have been told to eat as normal and take peppermint oil, she thinks I have IBS, how the hell do you get diagnosed correctly? I have proof im intollerant to something and they wash it off as ibs?! do i stay gluten free awaiting the results or do i eat as normal and risk feeling terrible again??

Has anyone else had issues getting diagnosed, as i could be wheat intollerant or just gluten intollerant and not coeliac, but until my results im a little confused and in the dark, and it seems im back square 1.

Any helps greatly appreciated.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

When you exhaust all testing, and you do not get a diagnosis of celiac, that does not mean you aren't gluten intolerant. They do not know how to test for gluten intolerance yet, and it's much bigger than celiac. They are only concentrating on celiac for now. gluten damages much more than just villi. gluten can attack your brain, it depletes you of vitamin and minerals, whether you have celiac, or not.

Have they tested your B12 level? A B12 level lower than 500, needs to be supplemented. Gluten depletes many of us of B12.

Once you have all the testing done you feel is necessary, then go gluten free, if you feel better, then you have your answer.

ninconpoop Newbie

thank you, he tested a full blood screen and said everything was normal, but they didnt tell me the levels, but do have confusion sometimes and say stuff i dont mean to, which my friends call my blonde moments lol! i ate a gluten containing cake last night, and today my symptoms are back, ill see what happens with my results in 2 weeks, the endo tests seem to take quite a long time to come back, its just irritating, after months trying get better you get knowhere!! but reading on this forum it seems to be rather mis-diagnosed and hard to diagnose

ang1e0251 Contributor

It can be hard to dx. Testing really isn't up to par yet. If you've exhausted all the tests you want, then you can just eat gluten-free and the heck with the rest. If you feel you must have the dr's gold stamp, then you are going to have to keep going on with the testing and eating gluten. That's a very personal choice that only you can make. Either way is fine.

Keep reading here and asking questions. We're thinking of you.

ninconpoop Newbie

thanks for the help both of you, i seem to have gotten a little further in figuring things out, i contacted the lab who did my food intollerance scan and they said the test for IgG antibodies, so i am showing as having a food intollerance. So i think it looks like my Dr is testing for the wrong thing by testing celiac, as thats TGA and EMA antibodies. im getting there, you show the Dr something and he completely ignores it and tests for something else anyway!! Drs eh!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,977
    • Most Online (within 30 mins)
      7,748

    P Jackman
    Newest Member
    P Jackman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
    • Dora77
      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
    • Jy11
      Well the conflicting results continue as the biopsy has come back negative. 😵‍💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? 
×
×
  • Create New...