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: How Long To Do One Before A Test

carisima

Recommended Posts

carisima Newbie
carisima
Posted

I really need some advice regarding testing.

 

I got up the courage to be tested for Celiac Disease. I'm not sure that I have it, to be honest. Up until I year ago, I never suspected that I could have an intolerance to wheat. Doctors had always diagnosed me as having IBS, and tried to convince me that my severe digestive symptooms (the extreme gas, bloating, diarrhea, etc;) were the result of my anxiety disorder. For years, I believed them, and thought I was crazy, and blamed myself. I spent years in psychotherapy and two years on psychotropic drugs they ordered for me to alleviate my "panic attacks". Nothing worked.

 

My really bad stomach symptoms began in college, but they've only gotten worse. I cut out dairy, saw no change. And it seemed like every meal I ate made me sick. I was going to the bathroom 12 plus times a day (sorry if TMI), and sneaking naps at work during lunch time to function through the rest of the day.b

 

Doctors gave me so many pills to alleviate the gas and diarrhea, but nothing seemed to help the symptoms. I was desperate, so a year ago, I went on the Specific Carbohydrate Diet to heal my digestive complaints. For the first time, all the bad symptoms began to dissipate, and I felt better.  It's a diet where you have to read labels, and I make almost every meal from scratch. After months of being strictly grain free, I decided to use a topical lotion -- Aveeno -- with oats in it, not thinking anything of it. Then, my skin broke out...and I got sick. It was then that I thought, maybe I could be gluten intolerant. It was only until I decided to research celiac disease (which I always thought was a gluten allergy) that I could have it.

 

This week, I got up the courage to finally speak to a GI doctor to be tested for celiac disease. Right now, I'm not sure what to do. He didn't seem to take me seriously. He spent less than five minutes talking to me, then asked me why did I believe I had celiac disease. When I attempted to tell him he kind of brushed me off. He told me that it could be small bacterial overgrowth, or a really challenging case of IBS.

 

He then said that I should be tested right away for celiac disease. I said that wouldn't that give a false negative, since I have been strictly grain free for eight months (I had to talk to his nurse to relay this information to him). He basically said, eat wheat lightly for a week, and then get tested. When I asked -- didn't I have to eat gluten for a month to build IGA antibodies (not sure if this is right), he told me not to believe everything I read on the Internet.

 

I really want the truth, and don't want to cut corners. I've started eating wheat again (so far, so good) but, a little gassy :(. But, I'm discouraged, really. I've gone throught this so many times with doctors who don't take my issues seriously. I would change doctors, but I seriously don't want to wait, and get testing process over with, since I already had to wait a month to see this specialist.

 

Should I do a gluten challenge for only a week, then be tested, or wait the full month (of eating wheat) then be tested for an accurate result, since I had been wheat free for a year.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

This is reliable info from the Internet. You might need to print it and show it to him. This is from doctors that treat and research Celiac disease.

Open Original Shared Link

carisima Newbie
carisima
Posted
  • Author

This is reliable info from the Internet. You might need to print it and show it to him. This is from doctors that treat and research Celiac disease.

Open Original Shared Link

thank you

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hello carisima

 

The information I found on The Canadian Celiac Association web site 

is that they recommend eating 4 slices of wheat bread for 3 months prior to a test.

 

You can find that information on this web page: Open Original Shared Link

 

 

I was gluten free for 2 years and my blood test came back negative so I'm still doing the gluten challenge.

 

Pills pills pills, sigh, poor you, I hope you get some real answers soon.

I don't trust that GI doctor based on the answers he gave you. 


Good luck with the test.

carisima Newbie
carisima
Posted
  • Author

That's what I'm afraid of, that he doesn't know what he's doing. :(

Hello carisima

 

The information I found on The Canadian Celiac Association web site 

is that they recommend eating 4 slices of wheat bread for 3 months prior to a test.

 

You can find that information on this web page: Open Original Shared Link

 

 

I was gluten free for 2 years and my blood test came back negative so I'm still doing the gluten challenge.

 

Pills pills pills, sigh, poor you, I hope you get some real answers soon.

I don't trust that GI doctor based on the answers he gave you. 


Good luck with the test.

kareng Grand Master
kareng
Posted

That's what I'm afraid of, that he doesn't know what he's doing. :(

Here is another. They don't agree on the exact timing and amount but they all say more than a week.

Open Original Shared Link

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Kareng there's no DGP tests listed -  :rolleyes:  sigh...  why can't they accept the DGP?   (did I miss it in the list?)

 

 

carisima, I saw a gastro enterologist about 2 weeks ago after waiting months to see him

and he told me: you don't fit the Celiac profile, you just have IBS, If I scope I won't find anything etc.

And this was a young doctor!

 

OK... back to another waiting list. :wacko:

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

Celiac.com Sponsor (A8-M):


carisima Newbie
carisima
Posted
  • Author

Kareng there's no DGP tests listed -  :rolleyes:  sigh...  why can't they accept the DGP?   (did I miss it in the list?)

 

 

carisima, I saw a gastro enterologist about 2 weeks ago after waiting months to see him

and he told me: you don't fit the Celiac profile, you just have IBS, If I scope I won't find anything etc.

And this was a young doctor!

 

OK... back to another waiting list. :wacko:

 

Hey Marcus, I definitely don't fit the profile of a celiac, and have been told that I had IBS for years, and I was just crazy LOL.

 

The doctor I went to yesterday seemed like a long line of professionals who just don't really care about their patients. I really get tired of going to see these "medical professionals", and I used that term loosely, only to be treated like I'm an insurance cash cow for their practice, instead of a patient in need of a real diagnosis and a treatment. It's their job help find out what's wrong, not asking me to "prove" that I'm sick and not to believe everything on the internet. They are not Gods; they don't know it all.

 

Anyway, yesterday, I decided to start my official gluten challenge and ate breaded sandwich. I was waiting for the "bomb" to drop. It didnt, so I thought, maybe old doc was right. I fell asleep for the entire afternoon, (I had part of the day off). I didn't have any noticeable tummy symptoms, but then I woke up this morning and the rash on my back returned. I don't know if it's true dermatitis herpetiformis, because its flesh colored, small with only a few "acne-like" bumps, rather than than true blisters and not "itchy" except on one side of my back. It's only on one half of my back, and not the full back rash -- yet, as in the past.

It's only day one LOL. I'm pretty sure the anxiety and panic attacks will return in force, along with the diarrhea and bloating, I just haven't eaten enough bread to do the trick. Im not sure if I'm going to last through this entire challenge LOL.

NotMollyRingwald Apprentice
NotMollyRingwald
Posted

Anyway, yesterday, I decided to start my official gluten challenge and ate breaded sandwich. I was waiting for the "bomb" to drop. It didnt, so I thought, maybe old doc was right. I fell asleep for the entire afternoon, (I had part of the day off). I didn't have any noticeable tummy symptoms, but then I woke up this morning and the rash on my back returned. I don't know if it's true dermatitis herpetiformis, because its flesh colored, small with only a few "acne-like" bumps, rather than than true blisters and not "itchy" except on one side of my back. It's only on one half of my back, and not the full back rash -- yet, as in the past.

.

I have a very similar sounding rash, except mine is between my shoulders/nape of neck/behind and in my ears. Not sure what it is either though...

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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      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
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748
    731049
    Newest Member
    731049
    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

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      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 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.