If Celiac Blood Panel Is So Inaccurate- Should I Spend My Money On It?

[carriej82]

I am new to the gluten-free/ celiac world.

I very recently stumbled upon the idea that gluten intolerance could be the the cause of an 18 year long personal hell in which I experienced depression, anxiety, panic attacks, brain fog, confusion, headaches, chronic constipation, obsessive cyclical thinking, negative voices in my head, irritability, anger, fatigue, wanting to die, not able to function, not wanting to get out of bed, etc. It was horrible, and the worst part was not being able to explain to anyone why I was sad and depressed all the time. No one believes you can be sad without cause or knowing why you are!!! I tried so hard and wanted so much to be a normal, happy person. I do and always have had so many blessings/reasons to be a happy person. But I could not will myself to be happy. I could not take control of my brain. I came to really dislike myself because I believed I was a pathetic mentally unstable person.

Fast-forward to last fall. I am a mother of 3, and my third son was born with severe eczema. After 9 months watching him suffer, I got fed up with the doctor telling me steroid cream and antibiotics were the only answer. It had to be diet-related, I watched him break out almost every day at mealtimes. I just felt that inside. So i did some research, and decided to go dairy and gluten-free for him and me because I was breastfeeding. I did this solely for his skin.

Amazingly, after 3 days of gluten and dairy free, all of the above mentioned symptoms that I experienced DAILY for 18 years vanished into thin air and I experienced for the first time a CLEAR HEAD, a content and HAPPY feeling, the ability to function, energy to get through the day, joy in my children... etc. I could no believe it. I thought, oh my gosh, this is WHO I REALLY AM! I CAN'T LOSE THIS FEELING! I was just freaking out inside with excitement over such a MIRACLE. I had gone dairy free before so I immediately thought of gluten and ate a rye cracker. Within an hour, brain fog and headache and depression settled upon me and lasted for 12 hours, then lifted. I ingested a small piece of wheat bread after that, same result. Symptoms eased up after 12 to 24 hours.

I did not want to ever eat gluten again but when I told my husband about this he was more than skeptical and though it was in my head, and when I made gluten-free meals for my family, nobody would eat them, and I got so discouraged. It was almost impossible to do by myself, so I tried to eat gluten-lite, just sparingly, through the fall, at times going strictly gluten-free for maybe a week at a time when I felt the worst, always challenging back in to "be sure" in case I'd imagined it all.

Now I am ready to be tested. I know this is real. In my family history, my mother had the same disordered personality traits as me, plus Diabetes and Hashimoto's. My grandmother and great-grandmother both had diabetes I and multiple cancers, great-aunt on same side had schizophrenia and other mental issues. I just know I have to go gluten-free for life, but I need validation of a positive test result for my husband and family to support me. However I keep reading online there are so many false negatives, and testing is not very accurate. I read somewhere that celiac is misdiagnosed 80% of the time. I fear if I get back a negative result, that will just cement my husband's skepticism. I don't think he will accept that gluten-sensitivity is just as real and damaging as diagnosed celiac disease.

Also, this test is costing me over $500 dollars, insurance won't cover at all. Is it even worth it if so many people who have a similar experience to mine get a negative result? What is the point of this expensive test if its not even accurate!!

Please advise. I don't know what to do. We are a young family and this is a real sacrifice to spend this money.

[Ziva]

I'm new at this so I can't give any information on the testing, but can say that the family doesn't have to know they are eating gluten free. Go with fresh veggies and meats, chicken & fish and stay away from processed foods. I found many of my spices were gluten free, but read their label.

Good luck

[ravenwoodglass]

First the bad news, if you are going to get tested you need to go back to a full gluten diet for at least a couple of months before you get tested. If you are gluten free or gluten light your test will be negative because the test is looking for the antibodies and if you are gluten free those antibodies won't be there. If you have had issues for a while have you talked to your doctor about them? Has your doctor checked you for anemias? If you have anemia and GI issues your doctor should be able to figure out what codeing to use so your insurance will cover the blood tests. You don't have to tell your husband you are being tested until after the results come in. Some doctors might be willing to give you a 'script' for the diet to show your husband if you carefully explain what you have been going through and the good results from the diet that you have had and your bodies response to being glutened.

As the other poster mentioned there are a lot of foods that are naturally gluten free so the family doesn't have to even know what they are eating is gluten-free unless you tell them before hand.

I'm sorry your husband is not understanding about the relief you are getting from the diet. It makes it hard when family doesn't understand. Most folks don't realize how much gluten can impact the brain and mood. Hopefully in time it will be more common knowledge.

[hotincleveland]

If doing it for yourself isn't enough, then do it for your children. Think of the hell you will save them from IF you have celiac, and IF you can pass it on to them genetically. They can start their lives free from this pain.

I am facing a situation where I asked for the blood test, but the doctor failed to tell me that being full-gluten was a requirement. I had been gluten-free for four weeks, and yet I still tested positive for the EMA IgA antibody. (Negative for the gliadin antibodies). Now I have to back to go full gluten and get the biopsy. (Not looking forward to this at all!)

It sounds like your husband is being defensive. For someone who hasn't experienced the daily hell of intolerance, they see a life without pizza, pasta, and bread as hell. People are afraid of "living without." I told my mom about this and she told me she'll take all the pasta I'm throwing out of my cupboard. She has severe osteopenia, obesity, and diabetes. She should stop wheat based on my history. But she's in denial.

I suggest writing out your personal history in detail. Then also write out your family history. Take your husband with you to a doctor appointment, where he can hear you recite the history, and ask the doctor questions himself. Let him hear from the doctor that the doctor wants a test. If you involve him in the process, he is less likely to be defensive.

Celiac (even gluten intolerance) is serious stuff. I have been to hell and back with autonomic dysfunction, POTS, fibromyalgia, severe anxiety, heart palpitations, dehydration, depression. $500 is a small price to pay if you consider the cost of what no diagnosis means to you and your family. Just make sure you spend the money wisely and get gluten back in your system for several weeks before you go. The tests DO need you to be on gluten.

[GottaSki]

Ravenwood's answer is spot on!

Just wanted to second that answer along with send good wishes for continued health improvement.

Give your husband time ... The gluten learning curve can be very tough for all. Perhaps as your health improves he'll realize the gluten connection.

Good Luck to you.

[carriej82]

Thanks for the responses everyone. I started eating gluten heavily second week in January in anticipation of having the blood test. So I guess it has been about 5 weeks. Before that I was eating gluten maybe once a day. Every day is a trial to continue as I battle about what I should do. Then if I do go ahead with the test, its still not over right? I would have to continue to ingest gluten until the biopsy, correct? That thought is almost unbearable.

I know you all said my family does not have to know they are eating gluten-free. But they know. And really I am not trying to be difficult. We are coming from a place where my older children 3 and 5 are used to whole wheat toast every morning, and sandwiches for lunch and dinner. We are not big meat eaters- out of principle we only ate meat maybe 2 or 3 times a month previously - so whole wheat grains have been the main part of our meals... pasta, pizza, flour tortillas, etc. I even used to grind my own wheat and make my own bread products, so my family is very accustomed to these homemade products that we thought were the best thing we could be eating. My husband definitely knows the difference between flour and corn, or wheat bread and gluten-free bread (which I did bring home one time). It is a challenge. Also it is like pulling teeth getting my kids or husband to eat new vegetables! I am not saying I won't give it my best, but I am hoping and praying for some kind of positive affirmation that gluten is making me ill because I don't know how else I will win their support to change our lifestyle so drastically. I feel so alone starting something so new and big and different and having the added stress of 'convincing' everyone I know what I'm doing.

[nora-n]

hotincleveland, the EMA test is totally specific for celiac, so I do not understand the need for biopsy.

Also, many places they have stopped doing biopsies for celiac, they just need two positive ttg-2 tests.

I read on the swedish celiac patients facebook page that they stopped doing biopsies for celiac now, and some places in Norway, just two positive blood tests, and symptoms and maybe gene tests in case no siblings have been diagnosed.

Now the test you were positive on, is much more specific than the ttg-test.

Maybe you can just get the gene test and then the diagnosis?

[Skylark]

As Ravenwood said, you need to be on a full gluten diet (4 slices of bread worth a day) for three months before you can get an accurate test. I know going back to the fog is a terrible prospect; I opted not to get tested.

You need to stand up for yourself better as far as your husband is concerned. Most spouses see the radical changes in a celiac off gluten and become strong supporters. Until he comes around you will have to go the extra mile to make gluten-free food for yourself. I know it's hard, but you will become accustomed to it. You'll also learn to cook gluten-free food your family will accept.

If you want testing, don't pay $500. That's outrageous. This service will run a decent celiac panel for you for $177 and it's through the same labs your doctor would use like Quest and Labcorp. Open Original Shared Link

[GFinDC]

Hi,

There is also Enterolabs testing which is around $200 I think. They do stool testing for antibodies. In Canada there is a self test kit you can get called Biocard.

There are gluten-free foods your family would probably like. Tinkyada pasta is gluten-free and not expensive, and many people like it. Fruits, vegetables and meats are gluten-free. It is processed foods that often have gluten added, not whole foods. You might find Food Should Taste Good chips good. gluten-free bread is usually very good or awful. Some good brands are Udi's, Rudi's and Glutino. It is expensive so I would advise not sharing it with the gluten eaters. There some long threads on making gluten-free bread on the forum.

Some people like using Mission corn tortillas to make wraps. They soften up nicely with a little water on them and few seconds of heating.

You could go gluten-free yourself and let the rest of the family continue eating gluten. But you will need to be careful of cross-contamination issues. Sharing a jar of peanut butter for instance is not a good thing.

If you do a search on gluten ataxia there are threads about it. Gluten ataxia affects the brain and some people with celiac get it. And get over it after going gluten-free

[Skylark]

There is also Enterolabs testing which is around $200 I think. They do stool testing for antibodies. In Canada there is a self test kit you can get called Biocard.

Enterolab has the disadvantage of not being validated but the advantage of almost always coming up positive for something. It's more of a "convince your spouse" test than a "do I have celiac disease?" test, which certainly has its uses. You're almost guaranteed to get a genetic result that forbids you from eating gluten ever again, since everything but DQ4 gets labeled gluten sensitive. If you know in your heart that you have to go gluten-free for life anyway, maybe Enterolab is the way to go. I usually discourage people from using that service becasue the tests are hard to interpret with the 30% false positive rate on AGA, but maybe it's exactly what you need.

The home test kit is here, and you can order it in the US as well as Canada. It is a normal serum TTG test with the same false negative risk of all the serum tests. Open Original Shared Link

[carriej82]

The test prices you all are quoting makes me wonder why the one my doctor ordered is so expensive!!! And the 500+ price tag is supposedly a discount for uninsured. The test is through LabCorps and the label is 'Comprehensive Celiac Panel'. I wonder if it is more screening than I need? Not sure why its so much.

I've had a few more conversations with my spouse, and he might be coming around. He himself has more of the 'classic' celiac symptoms than I do... pain and tingling in his legs and feet, diarrhea, stomach pain and nausea, vision problems, headaches, sleeping 10 hours at night and then 5 hour naps on the weekends, vertigo and dizziness. He doesn't want to take medication, but doesn't really buy into dietary solutions either. But he might be willing to try it with me, for at least a week. I think he would be surprised how much better he feels after that. We shall see. If he changes his mind on trying it out, then I think the best route is to follow a gluten-free diet myself as strictly as possible and hope he sees the difference in me.

I looked up gluten ataxia. It is true, all of my symptoms are brain related, but I don't have any balance or coordination issues. Though sometimes I have trouble waking up or breathing or my vision will go from perfectly clear to extremely blurry for a 15 minute period. I hope I do not have ataxia as it sounds very scary and also sounds like ataxia brain damage cannot always be reversed or even improved going gluten-free.

Thanks for all the helpful information!! So glad I came across this website and forum.

[Skylark]

That's wonderful that your DH is coming around! He sounds like he has gluten issues too. A week may be long enough for him to feel better but I'd sure like to see him try the diet for at least two. Your son with the eczema probably needs to be gluten-free and if both you and DH are gluten intolerant your other two kids may also have issues.

Take heart. All the brain-related stuff can improve gluten-free. There are plenty of stories around the board of memory problems, ataxia, epilepsy, and even MS-like autoimmunity getting better. You just have to be more careful on the diet than some folks. Your brain heals more slowly than your gut so getting gluten will set you back for longer.

I don't know about the pricing. That ineedlabs site negotiates very discounted rates with Labcorp and Quest and their comprehensive celiac panel is likely the same test your doctor's office is ordering. It may be that your doctors office is quoting a full, non-discounted price.

[GFinDC]

I wasn't trying to scare you, at least not a lot, on the brain stuff. But you are right it is scary. Gluten is also at least somewhat linked to pschizophrenia, (that's hard to spell) and can be linked to depression also. It can affect any part of the body, not just the gut. The stuff about the brain was just to reassure you that yes, depression from eating gluten is not a far fetched idea. But it can have serious affects on the brain or on nerves also, causing nueropathy in some people.

Open Original Shared Link

Hubby would need to get tested before starting the gluten-free diet if he wants to know for sure. Although the usual advice is t go gluten-free after all testing regardless of the test results, because false negatives are very possible.

I can be helpful to start recording what you eat each day and how you feel, along with any symptoms. Sometimes a pattern will reveal itself from a food log. If hubby does decide to try the diet that would be a good thing for him to do. It doesn't cost any money to do a food log, and that is the cheapest testing available.

[carriej82]

Ok, I think I might want to go through Ineedlabs.com as several of you have recommended. For the price of $177, my husband and I could both get tested, for actually less than the test my doctor ordered for me alone. (That is, if I can convince my husband!) It would be so awesome to have that done.

BUT - I am a little apprehensive and wondering what the difference is with this online lab? Is it safe and trustworthy? They actually have a location that utilizes the same LabCorps location I would be going to for the doctor ordered lab. So who processes the online test? Ineedlabs promises results in 48 hours while the doctor said to allow 10 days for results. Why the difference, does someone different process the online tests? Just wanting to understand exactly what I would be paying for.

Also the doctor ordered Complete Celiac Panel I think includes the genetic marker testing. The Ineedlabs test for only one-third the price does not. Do I need the genentic marker testing? What would be the benefit?

[Skylark]

I haven't used them myself. I think Domesticactivist and researchmomma have. You might PM and ask whether they were satisfied. Anti-EMA can sometimes take longer to read because it's done by hand; the 48-hour turnaround may be just general. I imagine you would get the total IgA, TTG, and DGP back pretty fast and the anti-EMA would take longer. As far as who does the lab, Labcorp is one of the two biggest diagnostic lab companies in the country. They will probably just batch your lab in with the thousands of others each location runs every day, same as one ordered through the Dr. office. I think you need to call INeedLabs and ask them your questions directly though.

I wouldn't pay for genetic marker testing myself (and I haven't). It's interesting information but IMO much less useful than your response to the diet. Anyone can be gluten intolerant. Doctors tend to use the genetic test as a way to rule out celiac tests coming back false negative (which can be misleading), or shore up the celiac diagnosis in someone who declines the biopsy. Thing is, the genetics are not foolproof because there are celiacs without the so-called celiac genes. Your doctor ordering genetics test explains the crazy $500 price tag!

[carriej82]

Update: I went through INeedLabs.com. Everything was legit with them, great customer service, and I got my results emailed to me the very next day which was cool.

Hard to say whether this is a good thing or not, but my results were completely negative, not even approaching the 'weak positive' ranges. Before testing my gluten history was: gluten-lite for about 4 months, gluten free 10 days, gluten heavy for 4 weeks, gluten-free again for 7 days, and gluten heavy for 2 weeks. Very spotty, I know. But since I'd never been gluten-free more than 10 days, and in total was only gluten-free for less than 3 weeks over a very long period of time, I did not assume my levels would have changed dramatically from the norm. IF I had celiac disease, would those very few gluten-free periods truly be enough to turn up negative iga and igg levels, and a ttg <1 ? Or can I safely assume I do not have celiac disease? Does the low iga and igg suggest I am not truly gluten intolerant?

[Skylark]

I'm glad to hear you got testing! I'm also glad to hear that iNeedLabs worked out so well and saved you a bunch.

I'm a little confused by your message. What do you mean by "negative IgA"? Are you talking about total IgA or the individual IgA tests like TTG and DGP? If your total IgA was low, you look at the IgG versions of the tests.

If everything is truly negative it means you are 80% likely not celiac, which is good. Celiac is an autoimmune illness that predisposes you to other autoimmunity. It's no fun at all! It does NOT mean you have no issues with gluten. Non-celiac gluten intolerance really has no tests, other than a gluten elimination diet.

[ravenwoodglass]

Now that you have had the testing done you should give the diet a good strict try for a couple of months. False negatives on testing are not uncommon. I know that from unfortunate experience.

[carriej82]

Skylark, I probably did not phrase that correctly. I don't really understand what all the levels are or what they mean, I just know that everything tested was well toward the low end of the negative reference range. Total IgA was 186 I think, negative range 0 - 400. Both gliadin readings were 3, tTG IgA <1 and tTg IgG 2.

I am pretty satisfied to diagnose myself as non-celiac gluten-intolerant. Some of my research suggests Gluten Ataxia, which it seems cannot be officially diagnosed. There does not seem to be any test available to measure brain damage caused by gluten. But then I don't have what I would consider neurological symptoms as much as mental symptoms. More problems with thinking, feeling, concentrating than with movement or muscle. Is there a name for this or does it fall under ataxia also?

Ravenwood, I agree. The next logical step is to quit with the gluten yo-yoing and go strictly gluten free for the long haul - at least 6 months to a year, to guage if the initial dramatic results I experienced would hold true long term. It is certainly frustrating not to have a piece of paper to "show" people to say "I have XYZ, doctor said so, that's why I'm suddenly being weird around food". I think especially right now you mention gluten-free and people immediately roll their eyes thinking you are just another sheep following the latest hollywood diet or fad. Hopefully though, if my previous albeit limited experience with gluten abstinence holds true long term, my husband and other people important to me would certain take note of sustained results over time. I've never gone more than a week or two not being depressed, so if my depression were to lift for longer than that, I think everyone would be amazed. I just have to be patient enough to wait out the convincing period and put up with skepticism in the meantime.

Thanks to all for the help, advice, and encouragement.

[Skylark]

That makes more sense, yes you don't have any signs of celiac autoimmunity. Total IgA means your immune system is functioning normally. TTG is the autoimmune test, and the gliadin is specific for celiac, and pretty sensitive. You are right that gluten ataxia is sometimes silent, but I think non-celiac gluten intolerant makes more sense. I know you were kind of hoping for positive bloodwork, but NOT having autoimmunity is a much better outcome even if you have to fight a little more over the diet.

What you're describing, the "brain fog" and depression is likely a result of chronic inflammation. It may clear up gluten-free. I hope so! I stopped having such trouble with depression off gluten and on vitamins and fish oil (until I developed thyroid autoimmunity).

I know what you mean feeling like a sheep following the latest diet. I have to remind myself that I did an elimination diet before celiac was trendy, and that I will be gluten-free long after the herd has moved on to the brussels sprouts, bison, and baklava diet.

[ravenwoodglass]

Some of my research suggests Gluten Ataxia, which it seems cannot be officially diagnosed. There does not seem to be any test available to measure brain damage caused by gluten. But then I don't have what I would consider neurological symptoms as much as mental symptoms. More problems with thinking, feeling, concentrating than with movement or muscle. Is there a name for this or does it fall under ataxia also?

Gluten ataxia is a problem with balance. I compare it to walking on a ship in a rolling sea. There is a test for it. An MRI will show something called UBOs (unidentified bright objects) that show up as white spots on an MRI.

Celiac can contribute to many neuro and mental issues and hopefully the problems you are dealing with will fade in time. If you do a search using the words celiac and neurological there are some studies that have been done.

Here is one article and on a side bar of it are more

Psychiatric symptoms and coeliac disease

Open Original Shared Link

[nora-n]

my tests were negative too, but I had been gluten light for a long time, and did not get another blood test after 5 weeks off gluten, just a biopsy of the gut and that was negative, and I got no description of the gut biopsy, nor the number of IEL, nothing, just negative after five weeks. (theya re gonna change that around here since that is not according to international standards, should have number of IEL, which increase in early celiac)

If you want to get the gene test from enterolab after all, I bet you have DQ1 like the rest of those with neuro issus from gluten. Many of them are negative on the ordinary celiac tests....

there are even some forums with those, like gluten sensitivity on neurotalk and on braintalk, and there is a forum glutenfreeandbeyond.