4

votes

Anyone gone back on gluten for a possible celiac diagnosis?

Answered on August 19, 2014
Created January 18, 2011 at 5:43 AM

I'd like to get an IgA tTG test, and perhaps even a mucosal biopsy, done for a couple of reasons.

Firstly, everyone in my family displays symptoms of celiac and/or gluten intolerance, but none of them really care or even believe me when I bring it up. If I had a test done on myself, and it turned out positive, they might be more likely to consider gluten as a cause of their own health problems, and might be more likely to get tested themselves, and work towards changing how they eat.

Secondly, everyone in this damn town avoids some kind of food for one reason or another. When I talk about how I eat, I'd like to have something more concrete to base my assertions on than yet another kind of self-diagnosed allergy or intolerance.

I know the reactions I have to gluten and I know the health problems I've experienced due to its presence in my diet. I've been off gluten since August so I know that for the testing to be of any value I'd have to start eating wheat again. Eek - cinnamon buns!

Is this a dumb idea? Should I continue avoiding gluten without any hard-and-fast reason why?

How long would I have to go back on gluten for to ensure an accurate test result?

Will it be worth it to suffer through the unpleasant physical effects that I will encounter? Will I be doing more damage to my body than it's worth? Can I mitigate the effects in any way - for eg extra exercise, supplements etc?

Has anyone else grappled with this? If I get tested, and it's negative, then I can just rationalize that the test wasn't accurate, or I didn't go back on gluten for long enough. Is it pointless to even bother?

Lots of questions - no need to answer them all, I appreciate any thoughts or bits of wisdom.

[edit] Thanks for all the thoughts and comments. I've been thinking that this could actually be an interesting experiment. I could go to see my doctor, get a full blood workup, and then go back on gluten for a month or so, get another full blood workup and the tests for celiac. I would then possibly have some good evidence as to what gluten actually does to my body. I could do my best to keep gluten as the main factor, ie. not go crazy on the sugar or anything else that might confound the variables. We're all guinea pigs in this paleo "experiment", aren't we...?

50637dfd7dc7a7e811d82283f4f5fd10

(5838)

on September 07, 2013
at 01:28 AM

I just had this convo with my parents over dinner. Noble cause, I've seriously thought of it... would love to hear how you do, and or would consider dual experiment.

Cf5c9ba3c06cf300ae23c52778dfd317

(545)

on February 11, 2011
at 03:39 PM

Wow, that's a really interesting point I've never considered. To the OP- If you feel so bad eating the stuff, why do you need some affirmation from a scientific test? Just don't eat it!

065bc9a541c742defb28b9c58ad34fbd

(1783)

on January 18, 2011
at 06:54 PM

Ha ha...very close! Vancouver, BC

C0fcb48d7da4f76fac17318efd2cd6b8

(4069)

on January 18, 2011
at 05:14 PM

"...everyone in this damn town avoids some kind of food for one reason or another." Oh, do you live in Portland, Or., too?

  • 065bc9a541c742defb28b9c58ad34fbd

    asked by

    (1783)
  • Views
    5.5K
  • Last Activity
    1281D AGO
Frontpage book

Get FREE instant access to our Paleo For Beginners Guide & 15 FREE Recipes!

9 Answers

7
1d952d225819b0229e93160a90bf9bf8

on January 18, 2011
at 12:32 PM

Last spring, went see a doctor about getting a "legitimate diagnosis".(I had been off gluten for a almost a year,it was making me pass out)Got through two weeks of the gluten challenge before I started having reactions so severe that I gave it up(vomiting blood was among the smallest of my side effects.Also began to have neurological issues).The biggest question you have to ask yourself is "Why is it important to have a doctor confirm this, when I know what makes me sick?"

5
C804b1637cc45d2b8f775c51bfcc4c4d

on January 18, 2011
at 01:52 PM

Ive had the biopsy and blood tests for it and it came back negative. Celiac is rare... And what my doc has advised me of is.... If it doesn't make you feel good... Don't eat it. Most likely you have what is called a gluten intolerance, or a gluten ataxia response... However these are much harder to diagnose, and overall a waste of your time. Just stay Away from the foods that make you sick.

You don't need a diagnosis to justify a healthy diet. Just be healthy, and live by example.

3
7df8f3cc7f1475c3ecbbd4a4feb87d04

(514)

on January 18, 2011
at 02:37 PM

I wonder about the health insurance implications of a celiac diagnosis. If you're ever in a position where you have to purchase an individual plan, would the diagnosis be a "red flag" that would either cause the insurance company to reject you or charge you more?

Especially when the diagnosis in question is more of an FYI than anything else, I'd make sure that you explore all the possible "real world" implications of having something like that in your "file."

Cf5c9ba3c06cf300ae23c52778dfd317

(545)

on February 11, 2011
at 03:39 PM

Wow, that's a really interesting point I've never considered. To the OP- If you feel so bad eating the stuff, why do you need some affirmation from a scientific test? Just don't eat it!

2
07ad8e05f734cb1deec5479dc0e4a194

(315)

on January 18, 2011
at 04:46 PM

This may be helpful:

https://www.enterolab.com/StaticPages/Faq.aspx

My opinion: don't do a gluten challenge. I had symptoms of gluten intolerance/sensitivity & worked w/ a person who has celiac disease. She said, just listen to your body. I cut out gluten. I felt better. Later on, I took the advice from a well meaning doctor who ran some labs and said, maybe just cut down on wheat. So, I had a piece of toast w/ gluten in it. I doubled over in agony later on. I think a lot of the serological labs are not accurate when it comes to gluten sensitivity.

That being said, there is still the "gold standard" of getting the biopsy for getting the dx of celiac disease, so that may be worth your while...but I do believe that whatever path one takes, we've got to listen to our bodies.

Best wishes!

1
24fcc21452ebe39c032be6801d6bbadd

(9812)

on January 18, 2011
at 02:26 PM

Ruby, how strict are you on trace amounts of gluten? I tested negative for celiac (blood work and endoscopy) but feel much better since cutting out gluten. I typically don't eat gluten products, but I don't take all the precautions that people with celiac have to take, such as ensuring a food item hasn't been contaminated by a shared cutting board, fryer, etc. I sometimes eat regular soy sauce when tamari isn't available, and it doesn't make me feel sick. I wonder, if you really think you may have it, maybe it would be worth it in the long term to undergo the testing process; if you have celiac, but are not being 100% with cutting out gluten, you could still be hurting yourself with any trace amounts. This gives me an idea for a spinoff question; I wonder how many of us "non-celiac" paleos are 100% strict on avoiding gluten.

1
13c5a9f1678d75b93f269cdcf69f14d5

(2339)

on January 18, 2011
at 10:55 AM

First, there's a full panel of celiac tests that need to be done. Check over at celiac.com for details. Something like 4 or 5 tests. Plenty to read over there about the frustrations with family members and their testing or lack of. I think the thing to do is to give them all a letter to take to their dr explaining the full panel of tests, and possibly a copy of some recent studies. Also bensure to get a copy of all test results and post them over at celiac.com if there is any doubt.

Would you consider something like the tests at enterolab? They are good for up to a year after starting the GF diet, I think.

as for a challenge, some argue that you could end up triggering an autoimmune condition and end your challenge in much worse shape. Any autoimmune conditions in your family? If so, it certainly argues for a more strict approach to the diet and perhaps a more cautious approach to testing.

Green's book on celiac suggests 3 months for a challenge.

New study on "potential" celiac that is a cause to ponder the current recommendations:http://www.celiac.com/articles/22389/1/Study-Supports-Gluten-free-Diet-for-Potential-Celiac-Disease-Patients/Page1.html

http://www.celiac.com/articles/22310/1/Blood-Testing-for-Celiac-Disease-Isnt-Very-Accurate/Page1.html

1
5672b2d190891342389e764cc4056ca9

(1304)

on January 18, 2011
at 07:01 AM

I'm glad that you asked the question, because I have a similar problem: a sister with celiac disease, I don't know if I am celiac myself, and I don't know if I want to go all the way to find out.

I personally have eliminated gluten from my diet because I had noticed long time ago that it bothered me, but for sure I have exposure to it almost every time I eat out (it's impossible to avoid it in this part of the world). In these small quantities, gluten does not have any "detectable" effect on me, although I am aware that it can do damage all the same.

What I know is that in order to have correct test results, you need to consume a good amount of gluten (a slice of bread minimum) on a daily basis for one to three months. It sounds a little too much to me...

I'm still pondering my options, because finding out that I'm celiac would mean a very very difficult social life, and for many other reasons I cannot explain here. Right now, my rational is that limiting the damage is good enough.

My answer to your main question: yes, I think it's a dumb idea to "re-glutenize" yourself. You are gluten free, why would you do that? A positive test result would just prove that YOU are celiac, not your relatives. I am the living proof that even having a close relative with celiac disease is not enough to take a test or eliminate gluten completely. You'd better convince them to take the test: next time one of your family memebers goes for a check up, just insist that they add an IgA tTG test.

If you want to go through all this because you are struggling to remain gluten free, and want to be 100% sure that you are doing the right thing, well... then it might be worth it, although it could still come out negative, and then, what would you do? Eat two slices of bread a day for six months and try you "luck" again?

0
224dfd1b06340db944c540f31bcd1a8b

on February 15, 2013
at 05:33 AM

I have been stuggling with this same question since I put myself and my 3 young children on a gluten free diet 6 months ago. I had tonns of symptoms that all improved off gluten. My children simply have horrible mottled teeth. My middle child had 2 teeth that came in with no enamel. My doc didn't think they needed to be tested for celiac. I'm now really regretting it because they end up consuming gluten at every birthday party or holiday that arises and I don't know if its damaging them.People (including my husband) would take their diet more seriously if they were diagnosed as celiac. I'd do the test again myself except that my short-term memory doesn't work very well when I eat gluten and it seriously affects my ability to work.

0
77877f762c40637911396daa19b53094

(78467)

on February 11, 2011
at 03:29 AM

I'm a non-celiac and I'm 100% strict about avoiding gluten, even cross contamination.

I have actually gotten sick from kissing someone who drank beer all night, the gluten on their lips caused me a reaction!

A burden I must live with.

Answer Question


Get FREE instant access to our
Paleo For Beginners Guide & 15 FREE Recipes!