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Gluten challenge-is it worth it?

jfhinoh

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jfhinoh Rookie
jfhinoh
Posted

11 months ago I was in constant pain and tired all the time. I also had persistent eczema and 1-2 monthly migraines. I was worried that I had some sort of autoimmune disorder. I ended up experimenting with the AIP diet for several months and my symptoms significantly improved. After 3+ months on this strict protocol with slow reintroduction of foods, I threw in the towel and went a little crazy with everything including pizza, cake, pasta, etc. After 3 days I was experiencing severe brain fog and quickly eliminated gluten from my diet again. 

About a month after this, my doctor tested me for Celiac. He assured me that my gluten free diet would not make a difference in the testing. The blood test came back negative but I continued the gluten free diet because it made me feel so much better.

During the last few weeks, all of my symptoms have gradually returned, including some new ones (no previous GI issues or insomnia) despite no dietary changes. After a careful analysis, I was able to narrow it down to my last prescription refill. It turns out that my migraine preventative had been reformulated and was likely the culprit.  I have been off this med for 3 days and my symptoms are quickly subsiding. Now I'm trying to find a gluten free substitute. Prior to this, I would have assumed my gluten intolerance was on the mild side (e.g.--I've never stressed about cross-contamination), but the fact that something smaller than a baby aspirin could turn my life upside down has caused me to reconsider. 

I wonder if my initial test results were inaccurate because of my gluten free diet at the time and if it's really worth pursuing a retest with reintroducing gluten. Several months feeling like I have the past few weeks does not appeal to me at all.

 I see my doctor next week and I'm not sure how far I should push for this. Any advice would be appreciated.

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apprehensiveengineer Community Regular
apprehensiveengineer
Posted

This sounds a bit like what happened to me... accidentally discovered that gluten was the source of my various/severe health issues while doing an allergy elimination diet. Unfortunately, none of the doctors I was seeing at the time thought to test me for celiac before suggesting I do this, despite my having a pretty classic set of symptoms/medical history. Sigh.

I personally chose to try to pursue a formal diagnosis but without doing the gluten challenge. My symptoms are very debilitating/disruptive, so I would worry that I would not be able to work FT if I did the gluten challenge. Some people do manage to do it though. In the end, my results were negative, but because I was gluten-free at the time of both the biopsy and blood test, this is inconclusive. I had the genetic screening done as well, which confirmed that I do have the genetic ability to have celiac disease (but so do a lot of people). So in the end, I didn't get any new information, nor did anything really change - it seems unlikely that what's wrong with me is something other than celiac/DH, but this can't be proven due to current limitations in diagnostics. I will keep living my life as if I do have celiac, because I don't want to get cancer/other long-term complications due to a false negative.

I can't tell you if it's worth it to do the gluten challenge because that's more of a personal thing, but I think it is worth it to try to pursue a formal diagnosis even if you decide not to. You never know - there might still be enough intestinal damage for a positive. I did have to push a little bit, but once I got referred to a GI things were fine. Good luck!

 

Ennis-TX Grand Master
Ennis-TX
Posted

It depends on if you can do it, I would suggest it. That peace of mind knowing it is it, and the offical dia will help with acceptance by family if you have some issues with that (some of my extended family still think it is a joke). It can also help with getting some benefits at least for now if you have it officially dia. I found I can write off the price difference between gluten-free and white on all the flours, etc as a medical expense for tax deductions. (I started splurging on the good nut based flours after learning this). The challenge can be easier managed taking the gluten at night before bed and trying to sleep off the majority of the symptoms if you can then dealing with the symptoms using OTC meds as needed. Got to admit the messed up concept of this disease to prove you have a issue with something you have to poison yourself to feeling like deaths door for a month or so so they can see HOW much it damaged your insides.....yeah. One of these days we have to get a better dia method lol. My personal dia was a little different and odd but that is another story and not one many others can do.

Jmg Mentor
Jmg
Posted
8 hours ago, jfhinoh said:

I see my doctor next week and I'm not sure how far I should push for this. Any advice would be appreciated.

Like AE above this is also very much like my experience. I removed gluten, noticed an incredible difference and then was given false info by a doctor who didn't understand the testing procedure and tested negative.

I chose to go ahead with the challenge. It wasn't easy, but it got easier as the weeks went on. After 6 I had a scope which was negative, but I kept a food diary and saw how each of my symptoms returned. So I didn't get a diagnosis beyond NCGS but I got an answer, stay off gluten for life.

Subsequent incidents have confirmed that I'm just as sensitive to cross contamination as many of my celiac diagnosed fellow posters here. So I live as if the diagnosis was positive. I sometimes wonder if I'd had the full blood test or more than 4 biopsies would I have got a positive celiac test but the truth is it doesn't matter for me as I have sufficient evidence to keep me true to the diet. 

In closing, I think you've found an answer either way so it depends just how important a diagnosis is to you. Make some concise notes before your doctors meeting, there's some useful links in this post for other possible ways it could be affecting you (ignore the out of date info on the full blood test, top two entries are now outdated). Properly presented you should have a case for either a longer challenge and test or a referral to a specialist. 

If you do the challenge keep a diary of what you eat and when, this is so helpful in tracking responses. Post here too for some support and advice. 

Most of all, trust in your own knowledge of your body and its reactions. There's no treatment other than the diet and much ignorance amongst the wider medical profession. Be your own advocate. 

Best of luck!

Matt

  • 2 weeks later...
jfhinoh Rookie
jfhinoh
Posted
  • Author

So I saw my doctor this week and asked about re-testing. He was still skeptical about diet making any difference in the results but agreed that if I decided to reintroduce gluten into my diet and wanted to re-test he would order it. 

In the meantime I am still struggling with residual symptoms (GI has settled down but still having muscle aches) even though it's been 2 weeks since stopping the offending medication. Would there be a benefit to getting a GI consult at this point or do I need a positive blood test for that to be worthwhile?

cyclinglady Grand Master
cyclinglady
Posted
13 hours ago, jfhinoh said:

So I saw my doctor this week and asked about re-testing. He was still skeptical about diet making any difference in the results but agreed that if I decided to reintroduce gluten into my diet and wanted to re-test he would order it. 

In the meantime I am still struggling with residual symptoms (GI has settled down but still having muscle aches) even though it's been 2 weeks since stopping the offending medication. Would there be a benefit to getting a GI consult at this point or do I need a positive blood test for that to be worthwhile?

Consider pushing for that GI consult.  The reason is you stated that he was skeptical about the diet and how it impacted the test results (or was he skeptical that you might have celiac disease)?  This sounds like he still has not consulted any medical books or Dr. Google about celiac disease.  ALL celiac blood tests and intestinal biopsies must be done while the patient has been on a full gluten diet.  Besides, a challenge can be tough and it is advised that you are under a doctor’s supervision. I do not know if would feel properly supervised or supported by your current doctor.  But, you know him/her and I do not.  

ssmith Rookie
ssmith
Posted

This topic has been super helpful for me as I am considering doing the gluten challenge to have an official diagnosis or more information about my condition as well. Has anybody who has done the gluten challenge and has gotten a positive result have information on how long they had to eat gluten and how much? I asked my doctor about it and was horrified when she just googled it to get an answer. I have read online that even 1/2 a piece of bread for a couple weeks can be enough but other times they recommend eating gluten for up to 3 months. Any advice would be appreciated :) Best of luck to you jfhinoh, I would be curious what you decide to go with as I am in a similar situation. 

 

xo

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cyclinglady Grand Master
cyclinglady
Posted
52 minutes ago, ssmith said:

This topic has been super helpful for me as I am considering doing the gluten challenge to have an official diagnosis or more information about my condition as well. Has anybody who has done the gluten challenge and has gotten a positive result have information on how long they had to eat gluten and how much? I asked my doctor about it and was horrified when she just googled it to get an answer. I have read online that even 1/2 a piece of bread for a couple weeks can be enough but other times they recommend eating gluten for up to 3 months. Any advice would be appreciated :) Best of luck to you jfhinoh, I would be curious what you decide to go with as I am in a similar situation. 

 

xo

Welcome!  Here is more information about a gluten challenge:

Open Original Shared Link

I would personally go for the maximum amount of tine and would consume as much gluten as I could tolerate 1 to 2 slices a day.  Why?  Researchers really do not know who builds antibodies fast.  Some can do it in as few as a few weeks and others take much longer.  Where do you fit?  You do not know, so considering the maximum recommendation.  

Do not be horrified about your doctor googling.  That is an excellent sign, in my opinion.  My neighbor is an ER doctor.  He googles all the time and combining that with his vast medical training and work experience, allows him to quickly help patients.    There is no way a doctor can know everything about disease and treatment.  

I wish you well!  

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