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Testing For Celiac

Fairy Dancer

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Fairy Dancer Contributor
Fairy Dancer
Posted

Hi, I have been feeling unwell with various symptoms ranging from fatigue, light headedness to gastrointestinal disturbances for some time now. I was in the process of trying a gluten free diet (as I have a half brother with celiac disease and wondered if I had a gluten problem myself) however a support worker I see (about my issues with depression) has insisted that I see a dr and get a medical check up as she said the symptoms I am getting sound physical in origin so an appointment has been made. Whilst I am there asking for a general check up and blood tests I thought I might also ask for a blood test for celiac disease, even if just to rule it out.

My question is, as I have been on a gluten free diet now for 5 days will it make a difference and can it cause a false negative if I go back to eating gluten now for a week or so before having the tests done (the appointment is for next week)? I don't have any bread in the house as I don't like it much anyway but I do have some weetabix cereal I can chow down on for a while until I see the dr. If I go back on to gluten now after being off it for 5 or so days can I still get accurate test results if I stuff my self stupid with cereals?

Although I will admit that not eaten gluten has slowed the diarrhoea down and if it was that causing it I am not looking forward to its return! I'll just move into the bathroom, it will make life easier lol

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veruca Newbie
veruca
Posted

You should probably just wait it out for the blood test. There are many symptoms that seem like Celiac, but are not in fact Celiac. Once you have the test results you may discover that you do have elevated antibodies and celiac disease can be confirmed by a biopsy.

If you do not have celiac disease, it is possible that you have a gluten allergy or perhaps would just benefit from a gluten free diet. There are many people that adopt a gluten free diet because they feel better but do not necessarily have celiac disease. It is important though if you do have celiac disease to be properly diagnosed so your family can be tested and you receive proper treatment.

Fairy Dancer Contributor
Fairy Dancer
Posted
  • Author

Are the 5 days I was gluten free likely to affect the test results? And if the dr wont run the test is it worth trying a home test first so I can take the results of that to the dr if they are positive?

shadowicewolf Proficient
shadowicewolf
Posted

yes, it can affect it. Go back on the gluteny stuff until you get the test done.

Fairy Dancer Contributor
Fairy Dancer
Posted
  • Author

What is the best way to load up on gluten? I had some weatabix earlier as my first does of gluten and my stomach has ejected it (barfed it back up lol) so thats not stayed down. Would bread be a better way?

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

What is the best way to load up on gluten? I had some weatabix earlier as my first does of gluten and my stomach has ejected it (barfed it back up lol) so thats not stayed down. Would bread be a better way?

Don't eat gluten free at all...You want to have gluten so if you have Celiac Disease the anti bodies will show their ugly selves ;) I am sure, since it's only been 5 days gluten-free, if you have a week or so to eat gluten again it will be good. I had to wait 3 months to get the blood test after going gluten-free to see if the diet was working. I would eat your cereal in small amounts...maybe some toast with butter or something might be better? I guess if it was me, I would make it a point to have two slices of bread a day, maybe toast in the morning and a roll at dinner or something? Good luck! Hope you find answers.

pgrovetom Rookie
pgrovetom
Posted

What is the best way to load up on gluten? I had some weatabix earlier as my first does of gluten and my stomach has ejected it (barfed it back up lol) so thats not stayed down. Would bread be a better way?

A couple important things you should know at this point.

5 Days off Gluten followed by loading up for a few days will probably not negatively effect the blood tests.

Make sure you get the RIGHT blood tests because many HMO's or doctors like to cut corners and don't do the testing correctly. Here is a link to the Mayo Clinic's testing protocol and its pretty good.

Mayo Celiac diagnostic testing algorithm

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First thing to remember is that the treatment for Gluten sensitivity and or Celiac ( which is damage to your intestinal lining due to Gluten) is a Gluten free diet. So the primary reason to have the blood tests and biopsy is to give you an indication, you need to go Gluten free which is not easy. In principle, the acid test is the Gluten free diet. All the blood tests do is motivate you to stay on that diet.

If you feel better off Gluten and most of your symptoms resolve, the blood tests are not really needed except to confirm what you already know.

A Gluten free diet is VERY difficult because cross contamination can get you even if you are reading every label and are careful. That might make you believe its either not Gluten or Gluten + more. A very rigid diet for some period of time with great care is the best test. By rigid, I mean don't eat anything that had even the remotest chance of coming into contact with Gluten. That means everything that you put in your mouth from food, lipstick, mouthwash, toothpaste to OTC and prescription drugs/supplements.

A product might say Gluten free but if it was packaged on multi-purpose food processing line, then wheat dust from an earlier product run through that line can contaminate the later food. For example: Cereals are packaged one type after another on the same processing line. A pure rice cereal that doesn't natively contain Gluten could have picked some up from wheat dust from an earlier run of a wheat cereal. Same for everything else. Unless the manufacturer is very careful and knows everything that comes into contact with a food, its at risk. Many candy products come from Mexico. They might have no Gluten in the candy but how do you know if an earlier run candy didn't leave a trace in a Mexican factory. I only say this so you know how tough it is too be 100% sure of your diet.

If one uses the Gluten free diet to test for Gluten sensitivity or Celiac, its just like the blood tests and can have a false negative or positive if not done very carefully. Medicine has a concept called differential diagnosis. It basically means to rule things out one by one until the correct diagnosis is found. The problem with this approach is if something is ruled out ( say with an antibody blood test), but there is an error and its the problem and ruled out, it takes a long time before coming back and discovering the diagnosis process was flawed. This flawed diagnosis problem is why one needs to be very careful with ruling things out. The real flaw is cost control. If a real scientist was given the problem, nothing would be ruled out without redundant testing from different angles and even then just put in the unlikely basket.

Back to the Mayo testing. They do note on it that there are some cases that are questionable. My view is saying "Not Celiac" is inaccurate. I was use the term not likely because it assumes NO errors. A bad assumption. That being said, The Mayo algorithm is about as good as you will find from medicine where cost control is essential.

First, they want to determine if you have a normal IgA production. Since this antibody is critical to testing, they first verify you are not deficient.

In part, this algorithm is based on both science and cost control. Its almost silly to run the IgA test and then wait and decide what test to do next. The cost control is crazy so a Labcorp Comprehensive Celiac test and the Celiac Association test can all be done at once. If you show positive on any of the antibody tests and are not deficient in IgA, there is a good chance you have a Gluten sensitivity, even if the biopsy is negative. Celiac is damage to the intestinal lining but it can come in patches so a biopsy can easily miss a patch.

So the bottom line is make sure they test as per the Mayo rules and then if you have a positive anywhere, only the VERY rigid Gluten Free diet will tell you if you really have it. If you went on the Gluten free diet and then felt much better and wanted to be sure the problem wasn't something always associated with Gluten like bread components, you could do a Gluten challenge test and eat lots of mini-wheats for a week and if you felt ill, then quit for a week and felt good, you have your diagnosis and need to stay Gluten free.

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Skylark Collaborator
Skylark
Posted

I agree with pgrovetom. Gluten-free for 5 days won't mess up the test. Simply go back to your normal diet until the test is done. There is no need to go out of your way to "load up" on gluten. I know that feeling of moving into the bathroom. :ph34r: Just put a really good book in there!

lilu Rookie
lilu
Posted

I am in the load-up now too, and I find pop tarts and pasta are "working" best for me... I use that term lightly because I still feel like crap eating it, but at least I don't toss it.

Fairy Dancer Contributor
Fairy Dancer
Posted
  • Author

Well thank god I don't have to load up too much lol. I kept the slice of plain bread down and had 2 slices of toast and ye gods the gut acid, reflux and stomach pain! It's actually the worst that I've known it now. I had discomfort before I took gluten out, the acid reflux mostly went whilst I was gluten free and now its back with an all time vengeance! So much so it has nuked my appetite along with it. Unusual for me as I usually can't stop eating even with an upset gut lol

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