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

Gluten Challenge

darkhorse

Recommended Posts

darkhorse Apprentice
darkhorse
Posted

I was tested for celiac disease (kinda) by a doctor who didn't know anything about it other than I "didn't want it." He only ordered two of the blood tests and I don't remember the name of them. I didn't see the results, but supposedly they came back normal. I decided to eliminate gluten (and then quickly realized I also needed to eliminate diary) and the results speak for themselves. I have many of the symptoms including all the gastro symptoms and this "stomach problem" runs on the women's side of my family. My mom refuses to get tested because she doesn't want to commit to the diet even though she has had stomach surgeries and is severely anemic, but that is another issue.

I went around my doctor and scheduled an appointment with a GI doctor in town (Dr. Lewey, a contributer to this site) and the appointment is for May 5th. I have been gluten free for a little over two weeks, but I would like to get tested for celiac by someone who knows what they are doing. I am also fine doing the biopsy if that will help. The problem is that I need to go back on gluten in order to be tested, but I feel so good I really don't want to. I keep thinking that I will wait until my appointment, but at that point I will have been gluten free for just about a month.

If I need to do a gluten challenge, would it be better to start eating gluten now and so as to minimize my time off of gluten? Do you think I would need to do a shorter challenge that way? My other thought is to wait until my appointment, but then I would need to do a longer challenge right?

I personally don't really need an official diagnosis, because I will never eat gluten (and possibly dairy) again. My mind is made up on that point, but my mom and possibly my sister are suffering from this as well and I think they would take it more seriously if I were to get an official diagnosis.

Any thoughts on this would be appreciated. :unsure:

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

For any chance of the testing to come out accurately you need to get back on gluten today. Even then you may still have a false negative. Do note how you are feeling now and I would note in detail your symptoms when you go back on gluten. Chances are you are in for some miserable days but you have no chance of being diagnosed if you are gluten free or gluten light.

darkhorse Apprentice
darkhorse
Posted
  • Author

I have already started a food journal and I am tracking my symptoms this whole time I was off gluten and dairy. I am planning on going back on gluten today, but it is really depressing to think about it. :( Actually, I was thinking about it all day and I keep putting it off. I was going to start this morning, but then I didn't want to feel bloated for a fitness class I have on Tuesdays. Then I was going to do it after the class, but I keep putting it off again and thinking that I will start tomorrow... I'm really having a hard time pushing myself to do this. A month ago I would never have guessed that I would be finding any excuse to NOT eat my two favorite foods: bread and cheese.

I tried calling the Dr today, but because of my schedule at work I could never catch him when he was not with a patient. Oh well, guess I better buck up and start eating... <_<

I just hope this is actually worth it and I get some kind of result other than feeling crappy. I'm also hoping that starting it now will let me do a shorter challenge. We'll see.

  • 3 weeks later...
Libbyanne Newbie
Libbyanne
Posted
I have already started a food journal and I am tracking my symptoms this whole time I was off gluten and dairy. I am planning on going back on gluten today, but it is really depressing to think about it. :( Actually, I was thinking about it all day and I keep putting it off. I was going to start this morning, but then I didn't want to feel bloated for a fitness class I have on Tuesdays. Then I was going to do it after the class, but I keep putting it off again and thinking that I will start tomorrow... I'm really having a hard time pushing myself to do this. A month ago I would never have guessed that I would be finding any excuse to NOT eat my two favorite foods: bread and cheese.

I tried calling the Dr today, but because of my schedule at work I could never catch him when he was not with a patient. Oh well, guess I better buck up and start eating... <_<

I just hope this is actually worth it and I get some kind of result other than feeling crappy. I'm also hoping that starting it now will let me do a shorter challenge. We'll see.

Hi Darkhorse!

Any chance you can update us on what you decided as far as going back to gluten or if you've had your tests? I am in the same boat - been gluten free for 3 weeks but recently started to add it back in so I can get tested. At first I was excited to eat pizza again (I hadn't made it far enough to bake my own gluten-free pizza yet) but now I find myself avoiding gluten foods because of all the reactions I have. I very much want an answer but I also want to know how long I need to go back on gluten for! It's especially hard after I've told people around me that I'm not eating it and if they see me eating it I feel like they will disregard me as a hypochondriac who just wants attention <_< . That is so far from the truth...I just want to know for sure so I can stop worrying that it might be something else AND like you I would like my sisters to get tested as I see a lot of my symptoms in them...

Archived

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

Go to topic listing

  • 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. marlene333
      - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    3. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    4. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,261
    • Most Online (within 30 mins)
      7,748
    Pbaentine
    Newest Member
    Pbaentine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • 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.