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 Celiac.com!
    eNewsletter
    Donate

Possible Celiac?


fed up

Recommended Posts

fed up Newbie

I am so lost.....

I am a female, who is 30 years old, who has been suffering with GI s/s for about 10 years. Maybe even longer. I have been to numerous doctors, who keep giving me the run around. I can not take it anymore. I was diagnosed with Polycystic Ovarian disease at the age of 18, and was told to go on a low carb, high fiber, high protien diet. So I did, I lost weight like crazy, but the down fall is....the GI problems. Since then I have been diagnosed with IBS, and I had my gallbladder taken out a little over a year ago, only for the problems to still be there. I have problems with stools going both ways, severe bloating(to the point were I really look 9 months pregnany), severe abdominal pain, cramping, joint and muscle pain, N&V, headaches, fatigue,heart palpitations, infertility, and miscarriage. This past week I was trying to comply with my low carb, high fiber diet, but every time I consumed the DOUBLE fiber bread that I bought, I eneded up in bed, in so much pain I was not able to walk, or move, or anything. I had never felt pain like that before. Doing my own research, I can only think that maybe this might be what it is (Celiacs Disease). Im not really sure as to were to go from here. I started a gluten free diet today, and can already feel a difference. Tonight was the first time in years that I was able to eat, and the bloating is hardly there. I know it will probably take time for all the s/s to go away, but I am excited for this so far. I guess my first question would be, do you think maybe this is what I am suffering from? (from the s/s I shared), and my next question would be, doing my research on gluten free products, i came across a list of "hidden gluten" to look for in products. And these "hidden gluten" names were listed on the ingredients that are supposed to be "gluten free" (thats what the labels said). For example: Progresso soup, says they are gluten free, but they contain citric acid, which is listed under my list of "hidden gluten". So what do you really go by? Do I trust the label that says gluten free? I am so confused!!!! I really want to try this life style change to see if I would benefit from it, and get my life back, but I still would like to stay on my high protein diet, due to my insulin resisitance. Please help!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Hold on! First, keep eating gluten and go to your doctor to get tested. This could be celiac, and tests for celiac disease do not work if you are on a gluten-free diet. With your other health problems, you really need to know.

It's important for you to know for sure, because gluten-free products tend to have a higher glycemic index than whole wheat so they're not good for insulin resistance. Once you've gotten the blood tests and you and your doctor have discussed an endoscopy, then you can think about trying the diet.

As far as "hidden gluten" if your list contains citric acid, it's bogus. There is a lot of old and inaccurate information floating around about gluten in foods. Start with the lists here at Open Original Shared Link Most major brands are very good about disclosing ingredients like food starches or vegetable protein that is derived from wheat. The Progresso gluten-free soups are fine.

Link to comment
Share on other sites
ravenwoodglass Mentor

I second what Skylark told you. Get tested now before you go gluten free. There are some of us that are false negative with testing so after the testing is finished do give the diet a good strict try no matter what the results.

It does sound like your in the right place but don't go gluten free until after your tests are done.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,045
    • Most Online (within 30 mins)
      7,748

    Averyreed8
    Newest Member
    Averyreed8
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  
    • Katiec123
      @cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 
    • cristiana
      @Katiec123 Welcome to the forum. I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival! I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.   It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will.  If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests). Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it. I hope all goes well with your appointment, let us know how you get on.
    • Shireen32
      Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ?  I had tests recently and this is what they say :Endomysial abs (IgA) -Positive  TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml What does this mean pls ??? How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms .   I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ? The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  . Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .  
    • knitty kitty
      Vitamin D deficiency.  Not enough Omega Threes. Another autoimmune disease like arthritis, maybe.    
×
×
  • Create New...