Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Testing For Celiac


Fairy Dancer

Recommended Posts

Fairy Dancer Contributor

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



veruca Newbie

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.

Link to comment
Share on other sites
Fairy Dancer Contributor

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?

Link to comment
Share on other sites
shadowicewolf Proficient

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

Link to comment
Share on other sites
Fairy Dancer Contributor

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?

Link to comment
Share on other sites
glutenfreeinminnesota Contributor

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.

Link to comment
Share on other sites
pgrovetom Rookie

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

Open Original Shared Link

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

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!

Link to comment
Share on other sites
lilu Rookie

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.

Link to comment
Share on other sites
Fairy Dancer Contributor

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

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...