Gluten Challenge Question

[H8 Wheat]

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?

Edited July 20, 2018 by H8 Wheat

[Scott Adams]

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]

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]

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]

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]

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]

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.

Edited July 29, 2018 by GFinDC

[H8 Wheat]

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]

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!  

 

[HannahBick]

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]

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.