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 Question


H8 Wheat

Recommended Posts

H8 Wheat Newbie

What percentage of people who do a gluten challenge and an endoscopy test positive for celiac? I’m asking because I’m about six weeks into the challenge, and I’m not sure it’s worth it. 

I’m positive for DQ2, but I don’t have a lot of digestive problems, except for reflux. Right now my arthritis is the worst it’s ever been. Could that be gluten? In the past I’ve had several problems that are associated with celiac: fatty liver, low iron, low B12. I have osteoporosis too.

I was miserable for the first month on gluten, but I’m feeling better now, except for my reflux and arthritis. And I’m tired. I’m just dragging myself through life. 

I felt MUCH better on a gluten-free diet, and I’m really discouraged right now. Is it worth it, or not?


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

This is a very difficult question. Nearly all doctors would say do the challenge (normally 6-8 weeks) so you can get a formal diagnosis, which is supposed to help you stay gluten-free (the idea here is that you may go off the diet if you don't have that piece of paper telling you that you shouldn't eat gluten).

Other things to consider is that once you get formally diagnosed, both life and health insurance could be harder to get, or may be more expensive than those without such a diagnosis.

HannahBick Explorer

For where you're at in the challenge, I think it is worth it.

If you have that piece of paper your friends and family members are more likely to take your condition seriously. Also, first degree relatives of a celiac patient are also at an increased risk for developing celiac disease, even if asymptomatic and they are more likely to be willing to get tested themselves if you actually have a confirmed diagnosis. As far as I know, you need to eat four to six slices of bread per day, every day, for at least 6-8 weeks. Then go in for a blood test (celiac panel) and duodenal biopsy. 

HannahBick Explorer
On 7/21/2018 at 9:23 AM, Scott Adams said:

Other things to consider is that once you get formally diagnosed, both life and health insurance could be harder to get, or may be more expensive than those without such a diagnosis.

Didn't see this before ^

Is it possible to get tested/diagnosed and not have the results placed on your record? Is there a way to pay a bit extra for privacy in this regard? I think getting diagnosed is worthwhile, but didn't give the issue you mentioned above much thought.

H8 Wheat Newbie

Thank you, both. I’m still eating gluten, but now I’m actively trying to get my testing moved up. Fortunately, my insurance won’t be a problem either way, and I’ll never be tempted to eat gluten again after this. 

Scott Adams Grand Master

Unfortunately it would become a pre-existing condition and I don’t know how this could be kept from insurance companies. If having the piece of paper will help you stay gluten-free, by all means finish the process, but this issue is definitely worth consideration.

GFinDC Veteran

The University of Chicago Celiac Center recommends 12 weeks of eating gluten before the blood tests.  If you need the piece of paper for some reason, it is up to you if you want to continue the challenge.  I didn't do it because I had to work for a living and that was dang near very troublesome while eating gluten.  And it was clear to me that I didn't do at all well healthwise while eating gluten, and did much better being off gluten.  So no-brainer for me.

The end result either way for me was the same, I had to stop eating gluten if I wanted to live.  So a doctor saying "yeah, you should stop eating gluten" was not very important to me.  I  didn't need their permission or advice at that point.  Dr. Fassano listened to my symptoms and said they sounded like celiac to him.  That's all I needed to hear.


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



Celiac.com Sponsor (A8-M):



H8 Wheat Newbie

GFinDC, thank you. You’re right. I’m missing out on everything that I don’t have to do, and I’m “faking it” through what I do have to do. I’m exhausted, and I feel terrible. This isn’t living. I’m abandoning my gluten challenge and changing doctors.

cyclinglady Grand Master
7 hours ago, H8 Wheat said:

GFinDC, thank you. You’re right. I’m missing out on everything that I don’t have to do, and I’m “faking it” through what I do have to do. I’m exhausted, and I feel terrible. This isn’t living. I’m abandoning my gluten challenge and changing doctors.

@H8 Wheat — You said that you were nearly six weeks into the challenge.  That might very well be enough to find elevated antibodies in your bloodstream.  The University of Chicago issues pretty conservative numbers.  Their goal to is catch as many celiacs as possible.  We are all individuals and researchers really do not all agree on specific cut off dates during a challenge.  It is certainly worth paying for a complete panel.  Do not settle for just the TTG tests after going through a grueling challenge.  

I would suggest the blood test now before going gluten free.  But you must weigh all the options and decided what is best for you.  Scott is right that insurance could be impacted.  Heck, before the US National Healthcare Act, I was denied health insurance because I had Acne Rosacea and Hashimoto’s even though my doctor wrote a letter indicating that I was not medicating the Rosacea and that my thyroid was stable with hormone replacement and....I was doing Triathalons.  I was still denied.  I got insurance but was put in a high risk pool which impacted my premiums.  

I was diagnosed five years ago.  But 17 years ago, my hubby went gluten free per the poor advice of two medical doctors.  Poor?  Well, the gluten free diet worked, but does he have celiac disease?  We will never know because he refuses to do a challenge.  Who could blame him?  (We like for him to be able to work so that we can pay our bills.)  He will say that I have received way more support from family, friends, and medical.  

Only you can decide what is best for you!  

 

  • 2 weeks later...
HannahBick Explorer
On 7/29/2018 at 6:02 PM, H8 Wheat said:

GFinDC, thank you. You’re right. I’m missing out on everything that I don’t have to do, and I’m “faking it” through what I do have to do. I’m exhausted, and I feel terrible. This isn’t living. I’m abandoning my gluten challenge and changing doctors.

A 6-week gluten challenge is often enough for people to show changes on biopsy.

As long as you are willing to follow the gluten free diet for the rest of your life (from this day forward, for better, for worse), and you don't mismanage the situation by eating gluten-containing food once in a while, I think you have made the right decision. 

Further to what @cyclinglady said, it might be worthwhile getting tested for celiac antibodies (tTG (IgA), EMA (IgA), DGP (IgA and IgG) and Total IgA Level) because as soon after going gluten free, the disease quickly becomes undiagnosable.

HannahBick Explorer
On 7/29/2018 at 6:02 PM, H8 Wheat said:

GFinDC, thank you. You’re right. I’m missing out on everything that I don’t have to do, and I’m “faking it” through what I do have to do. I’m exhausted, and I feel terrible. This isn’t living. I’m abandoning my gluten challenge and changing doctors.

There may be a quicker and easier way to diagnose celiac disease in the future. I just finished watching a video from the Celiac Disease Foundation of Dr. Bob Anderson speaking about a potential diagnostic test that may not require the 6-12 week gluten challenge.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ann13 replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    2. - trents replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    3. - Ann13 replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    4. - trents replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem

    5. - trents replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Inhaler problem


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,817
    • Most Online (within 30 mins)
      7,748

    Charisse25
    Newest Member
    Charisse25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ann13
      Not everyone will be allergic to whatever they're using in food. There is another forum re people who are posting they have vocal cord & throat issues after they eat breads & pastas which stopped after they removed those foods from their diets. Same as me...gluten doesn't react as gastrointestinal it reacts orally. Which is why I'm saying ensure all your food isn't what you're having a reaction to.  ...& I used Cornflakes as an example because some gluten free people would assume it's gluten free but if they're allergic to barley they will have a reaction...nothing to do with their inhaler.  You're missing my points a lot & frustrating so I'm done commenting. You really need to ensure your food isn't what's causing the issue. I am checking with symbicort manufacturer to check their ingredients.  Good bye... I'm done with this. 
    • trents
      I certainly agree with all that. However, you also mentioned cornflakes with barley malt but that would obviously not be gluten free since barley is a gluten-containing grain. And the chemicals they spray on grains would affect everyone, not just those with gluten disorders. I'm just trying to figure out what this thread has to do with the main subject this online community is focused on. Is the point of this thread that having a gluten disorder makes someone more susceptible to reacting adversely to inhalers? That could be but it may have nothing to do with the inhaler having gluten. It could have to do with, say, having higher systemic yeast counts because the celiac community generally suffers from gut dysbiosis. So it would be easier for celiacs using inhalers to develop thrush.
    • Ann13
      Re food,  I said the gluten free thing isn't necessarily about gluten itself, but chemical sprays they use on GRAINS which cause allergic throat & vocal cord issues regardless of the inhaler you're using.  Your issue may not be the inhaler but eating gluten free food that still will bother you because they have been sprayed with certain chemicals. Barley & oats cause vocal and throat issues with me as well as gluten free flours. We didn't have gluten issues in the world yrs ago...the food changed somehow or they're using sprays that cause reactions in some people.  Re inhaler: Symbicort is registered as gluten free but companies can change their ingredients at any time so you may want to check with the company who makes it and get an ingredient list.  I don't believe I'm reacting to the inhaler...I believe it's a gluten free pasta I've been eating so I'm taking it out of my diet. I've used the inhaler for over 1 year and no problems up until now so I suspect it's the pasta. 
    • trents
      There could be other reasons you are reacting to the inhalers. There is no concrete evidence to believe they contain gluten. Anecdotal experiences can be misleading do not establish fact.
    • trents
      Are you saying you believe there is gluten in the inhaler products? I mean you talk a lot about reacting to foods that are supposed to be gluten free but this thread is about inhalers. 
×
×
  • Create New...