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. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    5. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    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

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.