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

Question About Gluten Challenge

Cara in Boston

Recommended Posts

Cara in Boston Enthusiast
Cara in Boston
Posted

I can't believe it is mid-March and I am still posting on the Pre-Diagnosis list. I was certain (and told by MD) that I have it . . .

Anyway, here's my question for today:

I tested very positive on the initial blood test (for IgA and TTG IgA). By the time I got in to see the GI (at an actual Celiac Center) I had already been somewhat "gluten light" and definitely gluten free for 10 days. He ordered a blood test for that day and an endoscopy for two days later. Told me to go home and eat gluten (2 days) until the endoscopy. He felt confident that 10 days would not make a difference.

Well the blood test came back negative (but I haven't actually seen it and don't even know which tests were done) and the endoscopy came back negative.

I am now doing a three month gluten challenge and go back to be re-tested in May.

I know the three month number is sort of arbitrary - no one really knows how long it takes. My question is: Have any of you tested positive after a SHORTER gluten challenge? If all my symptoms are back (4 weeks now) then wouldn't that mean there has to be something that would show up in my blood? (I don't think I'm even going to bother with the 2nd endoscopy if the blood test is positive again. That will be enough for me.)

I am hoping MD will agree to check again at 6 weeks just in case . . . I'd love to not have to wait the entire time to go gluten free for good.

Thanks (again) for any insights you guys can share.

Cara

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

Celiac.com Sponsor (A8-M):


Cara in Boston Enthusiast
Cara in Boston
Posted
  • Author

Really? No one?

Has anyone had their doctor tell them a shorter time for the gluten challenge? Different books I have read say "several weeks", "a couple of months" and "three month minimum."

I can't imagine my little 10 day trial of being gluten free would take so long to reverse.

Really, I'm just being hopeful that things will happen much quicker and I can get started feeling better soon. I am fantasizing about a summer with my kids where I have the energy to take them on all sorts of adventures and we don't have to worry if there are bathrooms available everywhere we go.

Also, I just very impatient.

Cara

Darn210 Enthusiast
Darn210
Posted

Only have a slightly relevent story to share . . . One of my daughter's docs wanted her to do a gluten challenge for two months. If symptoms returned prior to the end of the two months then the challenge was over and no blood test required...the return of the symptoms was diagnostic in itself. We did an accidental challenge when she had a product a school that was originally gluten free but the vendor had changed and the new product contained wheat. Her challenge was over in one day. Does your doc know that your symptoms have returned? He may not require you to finish the challenge.

heather Goble Rookie
heather Goble
Posted

Only have a slightly relevent story to share . . . One of my daughter's docs wanted her to do a gluten challenge for two months. If symptoms returned prior to the end of the two months then the challenge was over and no blood test required...the return of the symptoms was diagnostic in itself. We did an accidental challenge when she had a product a school that was originally gluten free but the vendor had changed and the new product contained wheat. Her challenge was over in one day. Does your doc know that your symptoms have returned? He may not require you to finish the challenge.

Did your daughter ever have tests done? Just wondering if the doctor made the diagnosis on gluten challenge alone. I'm in a similar situation, went gluten free for a month, but now have reactions when I eat it. But in hindsight, should have waited to go gluten free so I could have been tested.

Darn210 Enthusiast
Darn210
Posted

Yes, my daughter had a prior positive blood test. The doctor that wanted to challenge her was the doc we went to for a second opinion (because we were in major denial). In addition, we went to him for a while after her original doctor moved away. He wanted to challenge her because he has a different testing/diagnosis protocol than the original doc. I wasn't even sure I wanted to challenge her. At a minimum, I wanted to wait till she was older (she was 6 at the time) so that she could give me better feedback on how she felt. As it turned out, it wasn't my doing anyway and there wasn't any problem with interpreting her response/symptoms from eating wheat.

Additional extenuating circumstances that muddied the waters of her original diagnosis . . . she had the stomach flu a couple of days prior to her endoscopy. Her blood panel was drawn on the same day as her endoscopy . . . the doc really thought she had EE and that was what the endoscopy was for. She had two biopsies of the small intestine taken just because he was in the neighborhood so to speak. He told me afterwards that if he was actually doing biopsies for Celiac, he would have taken a lot more. The biopsies were officially negative for visual damage. However, the biopsies showed a generalized disaccharidase deficiency. That was a test that showed that not only was her lactase enzyme low (lactose intolerant) but all the other enzymes they tested were low as well . . . these were/are the enzymes produced in the tips of the villi. Doc called it a "smoking gun" and basically said we caught it before a lot of damage was done. Also, FWIW . . . I had asked for the lactase test (disaccharidase test). I don't think it is normally done.

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. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    2. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    3. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    4. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    5. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • 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.