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Determining whether coeliac / celiac or not?

Answered on August 19, 2014
Created January 09, 2013 at 12:34 PM

Hi,

My girlfriend has had digestive / stomach issues for a while & has intuitively eaten almost completely gluten free for a couple of years. Last year she had a blood test for coeliac after, at the doctor's insistence, eating gluten containing food for 5 weeks but it was inconclusive. The doctor now wants her to repeat the same experiment again by eating gluten for 5 weeks but will this time also check for inflammation with an endoscopy.

My questions are:

1) Is there really no other way to test for coeliac other than eating a potentially harmful food?

2) If she has to eat gluten, then what would be the best form to take, I wouldn't think bread / biscuits / crackers would be a good choice from a health perspective? I've found a wheat germ oil suplement on Amazon, would this be a good choice for the 5 weeks leading up to the test?

http://www.amazon.co.uk/Solgar-Wheat-Germ-Oil-Softgels/dp/B00020IDCA/ref=sr_1_12?ie=UTF8&qid=1357734427&sr=8-12

Regards, Jason

F5a0ddffcf9ef5beca864050f090a790

(15515)

on January 11, 2013
at 05:57 PM

Oh, I forgot to mention - there is a genetic test that she can take for gluten intolerance. Here is the link http://towncenterwellness.com/resources-products/gluten-free/

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 01:01 PM

Hi, thanks for the reply, as you can see from my reply at the top of the posts they are looking into B vitamin & folate deficiency problems she has & this is the first step. From what I've read GF is probably a good idea for most if not all people due to links with auto-immune diseases, gut problems, etc. We can make Paleo equivalents of most foods with almond flour, coconut flour & arrowroot / tapioca. We really don't see being GF as a degradation of our lifestyle at all.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:56 PM

Many thanks for the reply, it's good to know that a biopsy will be a much better predictor than the blood test, even without a recent gluten exposure.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:54 PM

Many thanks for the reply, I think it is important for her to know either way but whatever the outcome bread / biscuits / crackers, etc are a thing of the past for both of us & we don't miss them at all!

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:52 PM

Hi thanks for the reply & I love the quote. I agree about the poor quality of testing as well, hopefully things will improve soon.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:50 PM

Hi, Thanks for the reply, please see the reply I posted at the top of the page to the reasons why they want to test her for coeliac. Many thanks .

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:45 PM

Hi, Thanks for the very comprehensive & informative reply, I will definitely look into the anti-endomysial test and see if this is a possibility for her to have under the NHS in the UK.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:42 PM

Hi, Thanks for taking the time to post a reply, we are both committed to making sure she gets better by following a Paleo lifestyle / diet.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:40 PM

Hi, Thanks for reply, please see my other reply above also, certainly she is committed to a gluten free life, as am I, I suffer no discernible adverse effects after eating gluten but I choose not to eat it as I know it is not good for me, or probably anyone for that matter.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:38 PM

Hi, Thanks for the reply. She has previously been diagnosed with B vitamin & folate deficiency, the coeliac test is the first to try to find a resolution to that problem - if she's not coeliac they will perform more tests to see why she is not absorbing these nutrients correctly. I think she is definitely gluten intolerant but maybe not full-blow coeliac, certainly she feels poorly enough after eating gluten to have voluntarily given it up already.

3fe2bf1367970868757ddf7ed7c62531

(817)

on January 10, 2013
at 06:17 AM

re: blackappy -- yeah it is abit silly to say this on a food/diet page that has an international audience. If it were a school page, then sure - knock my grammar/typos..

24fcc21452ebe39c032be6801d6bbadd

(9812)

on January 09, 2013
at 05:33 PM

blackappy, if typos bother you so much (I didn't see any here that made things hard to understand, so I don't know what the problem is) accumulate some more rep points and you can edit users' posts yourself.

3ce6a0d24be025e2f2af534545bdd1d7

(26217)

on January 09, 2013
at 04:47 PM

almost every test is not 100% accurate...

3327924660b1e2f8f8fc4ca27fedf2b2

(2919)

on January 09, 2013
at 03:04 PM

Gluten is bad for 100% of people on this planet and probably other planets. NOBODY benefits from gluten because gluten is a poison.

6f4425e3c7dc0efe60da531c5d991487

(373)

on January 09, 2013
at 02:50 PM

Good point. Please fix your typos.

E35e3d76547b18096a59c90029e7e107

(15613)

on January 09, 2013
at 12:48 PM

It's worth noting that regardless of the outcome of the celiac test, she still might be sensitive to gluten: http://www.ncbi.nlm.nih.gov/pubmed/21224837 http://www.bmj.com/content/345/bmj.e7982?view=long&pmid=23204003

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9 Answers

1
24fcc21452ebe39c032be6801d6bbadd

(9812)

on January 09, 2013
at 05:37 PM

I think she should eat the gluten and do the endoscopy, OR commit to being 100% gluten free for life. If she has celiac disease, she cannot afford to eat any gluten, at all, ever. I wanted to know, so I had the endoscopy because I am not going to subject myself to 100% perfection for my entire life if I don't have to.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:54 PM

Many thanks for the reply, I think it is important for her to know either way but whatever the outcome bread / biscuits / crackers, etc are a thing of the past for both of us & we don't miss them at all!

0
24a0a0d5073f0a77c3737ef9d0e4c426

on January 09, 2013
at 07:37 PM

My doc explained to me that they consider Celiac diagnose important as the condition can lead to serious problems including cancer. He said that I may indeed feel better GF but without celiac diagnosis this was entirely my choice. I don't 100% agree with his characterization of the importance of GF for non confirmed celiac but I thought this night shed some insight into why your Doc is looking for a diagnosis.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 01:01 PM

Hi, thanks for the reply, as you can see from my reply at the top of the posts they are looking into B vitamin & folate deficiency problems she has & this is the first step. From what I've read GF is probably a good idea for most if not all people due to links with auto-immune diseases, gut problems, etc. We can make Paleo equivalents of most foods with almond flour, coconut flour & arrowroot / tapioca. We really don't see being GF as a degradation of our lifestyle at all.

0
F5a0ddffcf9ef5beca864050f090a790

(15515)

on January 09, 2013
at 06:06 PM

The answer is really simple - if she does endoscopy even without consuming gluten they can take biopsy. Even if her villi grew back, you can always see the damage (if there was any).

If you suspect she is gluten intolerant, not celiac, then all she had to do is genetic testing.

The best form of gluten is eizekel sprouted bread. But does she have to go THAT FAR???

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:56 PM

Many thanks for the reply, it's good to know that a biopsy will be a much better predictor than the blood test, even without a recent gluten exposure.

F5a0ddffcf9ef5beca864050f090a790

(15515)

on January 11, 2013
at 05:57 PM

Oh, I forgot to mention - there is a genetic test that she can take for gluten intolerance. Here is the link http://towncenterwellness.com/resources-products/gluten-free/

0
D5cc9a30fa713e09330d945ece5f4c07

on January 09, 2013
at 05:07 PM

"Gluten is bad for 100% of people on this planet and probably other planets. NOBODY benefits from gluten because gluten is a poison. – Roth 1 hour ago"

probably other planets...LOL!

On a serious note I too had test done for celiac and it came back "inconclusive". For such a wide spread problem you would think they would have better tests.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:52 PM

Hi thanks for the reply & I love the quote. I agree about the poor quality of testing as well, hopefully things will improve soon.

0
197651282ddd8d675b974ee811d2269e

on January 09, 2013
at 03:12 PM

Like the others, I question the value of subjecting yourself to gluten for the sake of a test. This is what I'd suggest:

Take a look at last year's test, probably called a celiac panel. If her IgA is greater than 20, then she very likely has celiac. In order to confirm this, she can have them take biopsy samples from her small intestine ( probably the endoscopy procedure you mentioned). This procedure confirms the celiac diagnosis and is valuable in cases where people are in denial and will eat gluten regardless of the consequences. Many celiacs do not have any symptoms other then diarrhea for the first few years, so it's easy to be in denial.

If it's anywhere between 1-19, then she has antigens to the gliadin protein and is mostly likely gluten allergic or intolerance. A biopsy isn't necessary because the small intestine isn't THAT damaged, yet. Some people believe that you can be gluten allergic for a while, then become intolerant, then celiac, if you continue to bombard your system with gluten. It's a continuum.

Endoscopy procedures are expensive, even with good insurance, and her stomach will hurt for a few days afterwards, from the removal of tissue for biopsy. If she is committed to gluten free, then there's no need, IMO.

I've done the blood test and endoscopy because I had another related procedure. The IgA count from my blood test was only 3 but I can tell you that I'm severely allergic or intolerant to gluten. I have to eat like a celiac or else I break out into hives and chronic rashes. I, too, had severe digestive issues. Cut out all grains, legumes, sugar, and most starchs for six months and then slowly add back small amounts of starchs. Good luck!

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:50 PM

Hi, Thanks for the reply, please see the reply I posted at the top of the page to the reasons why they want to test her for coeliac. Many thanks .

0
94480caec9fbbaacc386d86a45efa720

(1007)

on January 09, 2013
at 03:06 PM

1) Basically, she must be consuming gluten for the current best medical tests - both the serology & the biopsy. That being said, the current bloodtests, while very specific, are not as sensitive as originally proclaimed. Celiacs with severe intestinal damage will usually get strong positive bloodtests; celiacs with only partial damage are much more likely to get false negatives. <- that's a good reason to get a biopsy esp. if a person needs to know if they have celiac for taxes, or dietary accommodations in a dorm or institution. Some Drs will offer to do a genetic test but it is only a risk predictor not an absolute yes or no. They will usually say, "If you don't have the genes, you don't have celiac" which is not entirely correct. There is celiac occurrence outside of the accepted genes, not a large percentage at this point though, 1 to 7% of celiacs depending on the study(ies) looked at.* See more on the blood work here. The anti-endomysial test is very specific to celiac and I recommend she make sure that it is one of the tests performed. A study published last May indicates "Irrespective of the initial serum titers or clinical presentation, EmA positivity as such is a very strong predictor of a subsequent celiac disease diagnosis" - anyone with any positive EMA test will develop celiac or respond positively to the GF diet even if celiac is not present at the time of testing.

2) Wheat gluten can be purchased in the baking goods aisle of most grocery stores if she wants to just take it in supplement form. She'd want to make sure she's getting at least 200 milligrams of gluten per day, if not a lot more since a slice of bread - the usual recommended "dose" - can have 600+ milligrams in it.

*and this doesn't even start to include non-celiac gluten sensitivity...

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:45 PM

Hi, Thanks for the very comprehensive & informative reply, I will definitely look into the anti-endomysial test and see if this is a possibility for her to have under the NHS in the UK.

0
A3b68d64a2c30e91ef7b5dd05fbae715

on January 09, 2013
at 02:43 PM

Obviously, I don't know the whole story, so I don't know why the doctor is insistent on testing your girlfriend. However, she has the right to refuse the test if she wants to. If she is not feeling better with just gluten-free, maybe suggest an elimination process instead? I hope everything works out for her!

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:42 PM

Hi, Thanks for taking the time to post a reply, we are both committed to making sure she gets better by following a Paleo lifestyle / diet.

0
Bfddc0ab925c8ea0e0c2e87198514907

on January 09, 2013
at 02:20 PM

If she already knows, then who cares what the doctor thinks. My sister is "certified" coeliac, I just know my health has dramatically improved through not eating gluten, and that's all that matters.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:40 PM

Hi, Thanks for reply, please see my other reply above also, certainly she is committed to a gluten free life, as am I, I suffer no discernible adverse effects after eating gluten but I choose not to eat it as I know it is not good for me, or probably anyone for that matter.

0
3fe2bf1367970868757ddf7ed7c62531

(817)

on January 09, 2013
at 01:28 PM

Is there a reason that she HAS to know? I have a server allergy if not intolerant. But knowing the pain I have when I get a crumb of gluten, I would never go through a test to know that it harms me.

The science is there that gluten is bad. Does she eat Paleo? If so, then it should not be a issue, but if she east SAD - then just show her this article (http://www.marksdailyapple.com/why-grains-are-unhealthy ) and hopefully she will stop harming her stomach :) But from the sounds of it she knows gluten is bad.

Besides the test like you talk about, I have not heard about others. I also have read that they are not able to guarantee that the test they have are 100% accurate. I think it is best to go off how one feels.

3ce6a0d24be025e2f2af534545bdd1d7

(26217)

on January 09, 2013
at 04:47 PM

almost every test is not 100% accurate...

24fcc21452ebe39c032be6801d6bbadd

(9812)

on January 09, 2013
at 05:33 PM

blackappy, if typos bother you so much (I didn't see any here that made things hard to understand, so I don't know what the problem is) accumulate some more rep points and you can edit users' posts yourself.

6f4425e3c7dc0efe60da531c5d991487

(373)

on January 09, 2013
at 02:50 PM

Good point. Please fix your typos.

1b7ce4aec094380e5530dba3c6bcecf9

(20)

on January 11, 2013
at 12:38 PM

Hi, Thanks for the reply. She has previously been diagnosed with B vitamin & folate deficiency, the coeliac test is the first to try to find a resolution to that problem - if she's not coeliac they will perform more tests to see why she is not absorbing these nutrients correctly. I think she is definitely gluten intolerant but maybe not full-blow coeliac, certainly she feels poorly enough after eating gluten to have voluntarily given it up already.

3fe2bf1367970868757ddf7ed7c62531

(817)

on January 10, 2013
at 06:17 AM

re: blackappy -- yeah it is abit silly to say this on a food/diet page that has an international audience. If it were a school page, then sure - knock my grammar/typos..

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