Testing For Celiac

[gancan]

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

[Lisa]

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

[shadowicewolf]

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.

[squirmingitch]

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.

[GottaSki]

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.

[gancan]

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!

[gancan]

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?

[GottaSki]

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.

[GottaSki]

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.

[gancan]

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

[kareng]

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.

[gancan]

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!

[kareng]

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:

[shadowicewolf]

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

[GottaSki]

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!

[gancan]

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!