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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,042
    • Most Online (within 30 mins)
      7,748
    Nicky Vowden-Renwick
    Newest Member
    Nicky Vowden-Renwick
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
×
×
  • Create New...