Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Testing For Celiac
0

16 posts in this topic

Hi

I have been having ongoing stomache pains for years. This year in January I was tested for gallstones, which I had none. So I went about my life and still dealt with the pain. Then after tiring of the constant pain I contacted my Dr. and she scheduled me for a HIDA scan (for my gallbladder) which, yes my gallbladder was an issue. They removed it and tested it and it showed chronic inflammation. I was diagnosed with biliary dyskenisia. After recovering from the surgery I was still having stomache pains. I would wake up in the night with awful pain, or after eating I would be in pain for an hour or so, using my heating pad for relief. I am a 25 year old mother of 3 young girls and very healthy other than this stomache issue. I recently had a CT scan to make sure everything was ok and it was. My sister in law suggested I avoid gluten so I have. I am only a week so far into eating gluten free but I have not had any stomache issues (with the exception of the day I had the CT scan and I think it may have been the Barium drink which upset my stomach).

I asked my doctor to be tested for Celiac disease and they told me I would need to re-introduce gluten back into my diet! I really have already gone through so much pain and I have a very busy life being a working mom of 3 that I really don't want to take that chance. I have also been told in the past that I have a soy intolerance so I have avoided that as well. I have noticed that many gluten free products contain soy.. That is fine I would gladly give all gluten and soy products up for some relief.

I am writing this to hear what anyone who has these symptoms or celiac disease has to say? Could this be my problem. I have had problems for years and I need help!

Thank you!

Megan

0

Share this post


Link to post
Share on other sites


Ads by Google:

Take this test to your doctor:

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

0

Share this post


Link to post
Share on other sites

dear, you have to ingest gluten in order for the tests to be accurate, you'd be surprised how quickly the antibodies get out of the system (yet not the sypmtoms <_<). As long as you eat some every day for a couple of weeks, it should be enough (like a slice of bread or whathaveyou).

What was the percentage that your (now dead) gallbladder was working at? I had to have mine removed because it just was not working right (at 5% no less), the pain was some of the worst pain i ever felt. The assistant surgeon said it looked dead when they took it out.

Before i went gluten free, i had major tummy issues, including massive "D" that would come out of no where and i HAD to know where a bathroom was when i was out and about. I remember the first episode. My mother and i were in a dollar store (i had to be about 12) and i told her i needed to go really bad, we had to wait for about 10 or so minutes and go across the street to a kmart to find a bathroom. I just about lost it :(

From that point on, "D" became more common. It got to the point where i would have to take pepto bismol to go out and wear a pad as well just in case :(

On top of this, if i ate any pasta or major bready things, my belly felt like a rock.

Then about two years ago, after a very nasty bout of the flu + an allergic reaction, I started vomiting after just about every meal. I lost about 40lbs in about a month (i was at close to 190 at 5'4'' but still not the way to do it). My knees ached (have had issues with them for years).

Finally a nurse practioner decided to run it just because it was a long shot. Lo and behold guess what came back positive?

I have a lot of issues (see sig), most of which are now under better control with this diet. I can concentrate in class! Holy crap, do you know how nice that is? I'm a 4th year at my university. The first two i was just getting by with Bs and Cs because i could not concentrate, the third year i did online corses (surgery and too sick to come back on campus) and got my grades up, and this year? At the middle of the semester at the moment, I've got As and Bs! I try very hard (still have some issues of course).

Honestly, I would have you go ahead, go back on it until testing is done, then get off of it regardless of the outcome. You have small children, yes? Celiac is somewhat genetic (some people can still get it without the genes but its rarer). I'd do it just for the peace of mind.

0

Share this post


Link to post
Share on other sites

Hi gancan,

Yes, it is possible these problems are resulting from celiac disease or non celiac gluten intolerance. And unfortunately, in order to be tested for celiac disease you need to be eating gluten (& that doesn't mean eat it for one day). There is no test for non celiac gluten intolerance YET. The only way to dx that is to test negative for celiac & then show results when on a gluten free diet. Of course, that scenario could as easily apply to celiacs who just happen to test neg. on the celiac panel ---- which happens all too often.

Why would you want to find out if it is celiac? 3 children, that's why. If you have celiac disease then all your first degree relatives need to be tested for it. It is a genetic disorder. If you have celiac then your children could have it or present with it in future.

It seems like you have had all the other tests to rule out other things except an endoscopy & colonoscopy. BTW, many celiacs have had the gall bladder removal only to find their symptoms did not resolve b/c it was celiac & not their gall bladder. the celiac was the cause of the inflammation in the gall bladder.

0

Share this post


Link to post
Share on other sites

I agree that your symptoms including the gallbladder removal could all be related to Celiac Disease. My daughter is one that had hers removed long before I was diagnosed with Celiac, which led to her diagnosis. We'll never know for certain, but do believe the undiagnosed celiac triggered the need for surgery.

I also think the BEST chance you have to obtain diagnosis is to return to eating gluten now in order to complete both blood and possible endoscopic biopsy. You very well may regret not obtaining a diagnosis later for both yourself and your children. We have heard many stories of those that have gone gluten-free only to regret not getting tested.

I would like to add one possible scenario - if you have only removed gluten for one week - is it possible to call your doctor - explain that you have researched your options and although you understand the tests have their best chance for accuracy you are not willing to go back to consuming gluten right now and would like the full celiac panel run. It is possible that these numbers may be positive if you have the tests done quickly. If the tests all come back negative you can decide whether you want to continue gluten-free or proceed with a gluten challenge for further testing.

Again, the best chance you can give the tests to be accurate is to continue eating gluten.

Edited to add: Welcome to the forum - take a look around, make sure to read the "Newbie 101" thread and ask as many questions as you'd like - asking questions is the best way to make the transformation to living gluten-free.

0

Share this post


Link to post
Share on other sites




Thank you for responding. I am going to call my doctor to request to have some testing done. Hopefully I can some tests done. Does anyone know much about the gene HLA-B27? My father has a positive one and in the paperwork his doctor had given him a few years ago he had highlighted a section on Celiac Disease, which is also part of the reason I had suspected this may be a problem of mine. He doesn't have it but he has had other auto immune issues. Just curious if anyone had some insight?

Thanks!

0

Share this post


Link to post
Share on other sites

I agree that your symptoms including the gallbladder removal could all be related to Celiac Disease. My daughter is one that had hers removed long before I was diagnosed with Celiac, which led to her diagnosis. We'll never know for certain, but do believe the undiagnosed celiac triggered the need for surgery.

I also think the BEST chance you have to obtain diagnosis is to return to eating gluten now in order to complete both blood and possible endoscopic biopsy. You very well may regret not obtaining a diagnosis later for both yourself and your children. We have heard many stories of those that have gone gluten-free only to regret not getting tested.

I would like to add one possible scenario - if you have only removed gluten for one week - is it possible to call your doctor - explain that you have researched your options and although you understand the tests have their best chance for accuracy you are not willing to go back to consuming gluten right now and would like the full celiac panel run. It is possible that these numbers may be positive if you have the tests done quickly. If the tests all come back negative you can decide whether you want to continue gluten-free or proceed with a gluten challenge for further testing.

Again, the best chance you can give the tests to be accurate is to continue eating gluten.

Edited to add: Welcome to the forum - take a look around, make sure to read the "Newbie 101" thread and ask as many questions as you'd like - asking questions is the best way to make the transformation to living gluten-free.

How many days do you think I would need to eat gluten before getting my blood tested?

0

Share this post


Link to post
Share on other sites

How many days do you think I would need to eat gluten before getting my blood tested?

Unfortunately, no one can tell you an exact time. I can tell you that most of the major celiac centers recommend between 6 and 12 weeks - ingesting the equivalent of 1/2 to 2 slices of glutenous bread per day when gluten has been removed from the diet. Given the short time you have removed gluten, a shorter time may be sufficient - it is just not possible to know how the brief removal of gluten will affect your testing. There are just too many variables.

When you are ready, here is the Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Endomysial Antibody IgA

Gliadin IgA and IgG

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

My Celaic Doctor recommends:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Others have posted that their doctors order additional tests:

A, Calcium, Magnesium, Potassium

Hang in there and let us know if you have more questions.

0

Share this post


Link to post
Share on other sites

Does anyone know much about the gene HLA-B27? My father has a positive one and in the paperwork his doctor had given him a few years ago he had highlighted a section on Celiac Disease, which is also part of the reason I had suspected this may be a problem of mine. He doesn't have it but he has had other auto immune issues. Just curious if anyone had some insight?

From what I understand HLA-B27 is a gene that is associated with different forms of arthritis. Autoimmune disorders tend to run together and it is quite common for people with Celiac Disease to have other autoimmune conditions and vice-versa.

Unless your father had a pair of these genes, it doesn't necessarily follow that you inherited it. Given that it is associated with conditions that cause inflammation in the body, perhaps you could talk to your doctor about being tested for HLA-B27, along with celiac gene testing.

If you haven't already, given your father's history you could also talk to your doctor about more blood tests for inflammation &/or a referral to Rheumatology.

That your digestive system felt better after removing gluten for a short time is very telling. Be sure to include this information in your discussions with your doctor - especially if you become ill if/when you re-introduce gluten.

0

Share this post


Link to post
Share on other sites

Thanks Lisa

I went to the doctor yesterday and got my blood drawn for HLA-DQ2, HLA-DQ8, Celiac panel (which I am hoping includes what you have listed) and the HLA-B27 (since I was already getting everything else done). I am not sure how long it will take to get the results back. I honestly felt like I had to be very pushy to get these tests done, the doctor seemed to be giving me a hard time saying they were expensive tests. I called my insurance and they said they do cover these test in full so then they agreed to do the tests. I never actually got to speak with my doctor only her assistant.

I did tell them I understand that the tests may not be helpful since I haven't re-introduced gluten into my diet.. but I am wondering if I am even doing such a good job avoiding the gluten since this is all so new so maybe they will work. I have avoided everything I can think of but this morning I woke up feeling sick. The only thing I ate that was out of the ordinary last night was some cheese and pepperoni slices off my husbands frozen pizza and for dinner I had made shrimp with vegetables for me and my daughter, the shrimp was frozen and I think I read somewhere to be careful about frozen seafood? Or maybe because the pizza was frozen there is some kind of ingredient that is there to preserve freshness and that has gluten or soy?

Thanks for all the feedback, I will keep you posted!

Megan

0

Share this post


Link to post
Share on other sites

Thanks Lisa

this morning I woke up feeling sick. The only thing I ate that was out of the ordinary last night was some cheese and pepperoni slices off my husbands frozen pizza and for dinner I had made shrimp with vegetables for me and my daughter, the shrimp was frozen and I think I read somewhere to be careful about frozen seafood? Or maybe because the pizza was frozen there is some kind of ingredient that is there to preserve freshness and that has gluten or soy?

Thanks for all the feedback, I will keep you posted!

Megan

I'm assuming this frozen pizza was not a gluten-free pizza? You can't eat parts of a gluten pizza if you have Celiac. Nor can you pick the croutons off of a salad or take the burger off the bun. The small amount of crumbs sticking to it are enough to make a Celiac sick.

0

Share this post


Link to post
Share on other sites

I'm assuming this frozen pizza was not a gluten-free pizza? You can't eat parts of a gluten pizza if you have Celiac. Nor can you pick the croutons off of a salad or take the burger off the bun. The small amount of crumbs sticking to it are enough to make a Celiac sick.

Oh.. I had a feeling it may have been a bad idea at the time but I thought as long as I didn't eat any of the crust. It was not gluten free, it was a "Tombstone" pizza brand. Lesson learned!

0

Share this post


Link to post
Share on other sites

Oh.. I had a feeling it may have been a bad idea at the time but I thought as long as I didn't eat any of the crust. It was not gluten free, it was a "Tombstone" pizza brand. Lesson learned!

You might want to read other posts/threads for info. Try this one too:

0

Share this post


Link to post
Share on other sites

Thats a big no no dear. Its just like eating a turkey thats been stuffed with gluten stuffing.

0

Share this post


Link to post
Share on other sites

Thanks Lisa

I went to the doctor yesterday and got my blood drawn for HLA-DQ2, HLA-DQ8, Celiac panel (which I am hoping includes what you have listed) and the HLA-B27 (since I was already getting everything else done). I am not sure how long it will take to get the results back. I honestly felt like I had to be very pushy to get these tests done, the doctor seemed to be giving me a hard time saying they were expensive tests. I called my insurance and they said they do cover these test in full so then they agreed to do the tests. I never actually got to speak with my doctor only her assistant.

I did tell them I understand that the tests may not be helpful since I haven't re-introduced gluten into my diet.. but I am wondering if I am even doing such a good job avoiding the gluten since this is all so new so maybe they will work. I have avoided everything I can think of but this morning I woke up feeling sick. The only thing I ate that was out of the ordinary last night was some cheese and pepperoni slices off my husbands frozen pizza and for dinner I had made shrimp with vegetables for me and my daughter, the shrimp was frozen and I think I read somewhere to be careful about frozen seafood? Or maybe because the pizza was frozen there is some kind of ingredient that is there to preserve freshness and that has gluten or soy?

Thanks for all the feedback, I will keep you posted!

Megan

Good Morning Megan-

It is indeed frustrating that many of us have to be pushy/forceful/adamant with our doctors regarding running celiac tests. It is my opinion that celiac panels/not screenings should be run for all patients presenting with gastro, autoimmune and non-specific symptoms - as this certainly would have prevented decades of illness, misdiagnosis and unnecessary tests and procedures for myself and many others. Personally, I had no idea what Celiac Disease was until I was 43, had symptoms that worsened over decades until I was very sick for three years - even then a celiac screening test was about my 50th blood test over several months.

Good job getting the tests ordered - should they come back negative, keep looking for answers. Consider an endoscopy (can't recall if you mentioned already having one) and give removing ALL gluten a good three month (six months is better) trial - this is the only test for Non-Celiac Gluten Intolerance.

I don't recall how quickly gene testing results were in, but my celiac results are usually released to my electronic chart very quickly - several days to a week if the doctor is slow in releasing them. Oh, if you don't already - request written or electronic copies of all test results. Being told you are negative/normal over the phone is not sufficient. If you are confused about results, you can post them here.

Transitioning to completely removing gluten takes time - read all you can and ask questions here - there is always popping on that can help. There are plenty of naturally gluten free foods - try to shop from the perimeter of your grocery store as this is where the majority of fresh/whole foods are kept. If you purchase processed foods - try to limit the number of ingredients to less than 4 - makes reading the labels much simpler and reduces frustration. If I had the transition to do over again, I'd also limit the number of foods labeled "gluten free" as these can be tough for a healing system to process. All your favorite foods can be replicated or replaced...if there is something you are craving - search here for a gluten-free version, if you don't find an answer - ask.

Hang in there and good luck with your testing!

0

Share this post


Link to post
Share on other sites

Good job getting the tests ordered - should they come back negative, keep looking for answers. Consider an endoscopy (can't recall if you mentioned already having one) and give removing ALL gluten a good three month (six months is better) trial - this is the only test for Non-Celiac Gluten Intolerance.

Thank you - this is helpful!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,096
    • Total Posts
      920,333
  • Topics

  • Posts

    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined