Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

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


  • Please log in to reply

21 replies to this topic

#1 carriej82

 
carriej82

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 28 February 2012 - 08:45 PM

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.
  • 0

Celiac.com Sponsor:

#2 Ziva

 
Ziva

    Community Member

  • Advanced Members
  • PipPipPip
  • 27 posts
 

Posted 29 February 2012 - 04:15 AM

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
  • 0

#3 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,791 posts
 

Posted 29 February 2012 - 04:36 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 hotincleveland

 
hotincleveland

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 29 February 2012 - 06:01 AM

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.
  • 0

#5 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 29 February 2012 - 06:02 AM

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.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 carriej82

 
carriej82

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 29 February 2012 - 07:46 AM

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.
  • 0

#7 nora_n

 
nora_n

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,490 posts
 

Posted 29 February 2012 - 07:46 AM

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?
  • 1
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#8 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 29 February 2012 - 08:24 AM

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. http://www.ineedlabs...?keyword=celiac
  • 0

#9 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,163 posts
 

Posted 29 February 2012 - 08:03 PM

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 :)
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 29 February 2012 - 08:43 PM

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. :lol: 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. http://www.glutenpro.com/
  • 0

#11 carriej82

 
carriej82

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 01 March 2012 - 06:34 AM

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.
  • 0

#12 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 01 March 2012 - 08:09 AM

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.
  • 0

#13 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,163 posts
 

Posted 01 March 2012 - 05:00 PM

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.

Gluten Intolerance Linked to Schizophrenia

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.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 carriej82

 
carriej82

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 02 March 2012 - 02:10 PM

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?
  • 0

#15 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 02 March 2012 - 02:36 PM

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!
  • 1




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: