Jump to content
  • Welcome to Celiac.com!

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




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is A Celiac Reflexive Panel Adequate?


carriej82

Recommended Posts

carriej82 Rookie

My doctor originally ordered a Comprehensive Celiac Panel from LabCorps. I found out that would cost me over $500 on my high deductible family plan, and I couldn't swing it, so I've been desperately searching for less expensive options. All the time still eating gluten and feeling pretty miserable.

I was looking at INeedLabs.Com, but when I called my doctor's nurse to ask about it, she'd never heard of it. That didn't necessarily turn me away from the online route, they actually sounded completely legit when I talked to them on the phone. But my nurse did mention something I wasn't aware of: Regional Lab Outreach through my local hospital.

Regional Lab offers discounted tests for private pay patients. I called and they quote me 2 different tests. One was a Celiac Reflexive Panel. As I understand, they run an IgA an depending on that result they do one of two things. Here is the description: If IgA is less than 7 mg/dL, then tTG IgG and Gliadin Peptide IgG will be added. If IgA is greater than or equal to 7 mg/dL, then tTG IgA and Gliadin Peptide IgA will be added .

So apparently this is more cost effective than the other option, which is a Celiac Serology test which includes these values: Anti-gliadin IgG ELISA

Anti-gliadin IgA ELISA

Anti-human tTG IgA ELISA

Anti-endomysial(EMA) IgA IFA

Total serum IgA

Do I really need the comprehensive test? Can the relflexive test be enough to diagnose celiac disease? Will it tell me what I need to know? What would be the benefit of having the additional values in the comprehensive serology panel?

Any input appreciated! Thanks so much.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I can't really comment on the tests but I can say that :

You have found out one of the secrets of US medical care!

Offering to pay, in cash at the time of service can give you some bargaining power on cost. It costs a hospital a lot of money to bill insurance companies ( more than the cost of a person to send a bill ). I worked at a hospital that had 2 prices for mammograms - the cost to the insurance company and the cash paid at the time of testing (less).

Good luck.

Edited to say: didn't mean to sound like an infomercial on late night TV, :)

mushroom Proficient

As I mentioned on your new thread, (I went back to your profile and checked out your other posts) the full celiac panel consists of the following 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

This is apparently what the comprehensive celiac panel from LabCorps would offer. The reason for doing all the tests is that it is possible to be positive on some and negative on others. You only need to be positive on one to be celiac. The total serum IgA test is a control to make sure that the person being tested produces a normal quantity of IgA; if not, any IgA testing is invalid and they have to perform the IgG versions of the tests. The Ani-Gliadin tests are the older tests; the newest test and the one that seems to work best for children and be most specific for celiac is the DGP. If I am reading your post correctly, then the reflexive panel that Regional Lab is offering would first run the total serum IgA, and if that was in the low range, then they would run the IgG versions of the tTG and DGP. If the total serum IgA was normal, they would run the IgA versions of both the tTG and DGP. I would think that that would probably be a pretty good deal since those are the two tests most often used now. How much would they charge you for that?

carriej82 Rookie

As I mentioned on your new thread, (I went back to your profile and checked out your other posts) the full celiac panel consists of the following 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

This is apparently what the comprehensive celiac panel from LabCorps would offer. The reason for doing all the tests is that it is possible to be positive on some and negative on others. You only need to be positive on one to be celiac. The total serum IgA test is a control to make sure that the person being tested produces a normal quantity of IgA; if not, any IgA testing is invalid and they have to perform the IgG versions of the tests. The Ani-Gliadin tests are the older tests; the newest test and the one that seems to work best for children and be most specific for celiac is the DGP. If I am reading your post correctly, then the reflexive panel that Regional Lab is offering would first run the total serum IgA, and if that was in the low range, then they would run the IgG versions of the tTG and DGP. If the total serum IgA was normal, they would run the IgA versions of both the tTG and DGP. I would think that that would probably be a pretty good deal since those are the two tests most often used now. How much would they charge you for that?

Hmmm... I am trying really hard to follow this. :) All the different measurements really confuse me as to what they are. I need to do some serious reading on the IgA, IgG, tTg stuff so I can wrap my brain around it. I started this particular thread over a week ago when I was trying to decide the best way to afford testing with a ridiculously high-deductible. I did end up hauling my kids to the hospital Regional Lab location to try for the reflexive test. They had told me over the phone I would qualify for the uninsured price of $100 for the test, but turns out since I do have insurance they could not offer me that after all. I ended up walking away and looking into INeedLabs again, which is what I ultimately went with. They charged me $160 for a celiac panel through Labcorps.

According to my results page (I tried to copy and paste but won't let me) I was tested for the following levels:

Deamidated Gliadin Abs, IgA - 3

Deamidated Gliadin Abs, IgG - 3

tTg IgA <1

tTg IgG 2

Endomysial Anitobody Iga, Negative

Immunoglobulin,A, Qn, Serum 186

Is that the full panel? All were in the very low end of negative ranges. I had only been totally gluten-free for 3 or 4 days at a time last fall, and then 10 days in early January, and for 1 week in February. Otherwise was gluten-lite in fall and gluten heavy this year except for above mentioned periods.

Any thoughts? I take this to be non-celiac gluten sensitivity or intolerance (or whatever, is there a difference in sens or int?) I wonder if I should have my kids tested for celiac though before starting them on gluten-free diets to see if their behavioral issues improve

mushroom Proficient

Hmmm, your testing results do look thoroughly negative, sorry to say, Yes, that is the full panel except for the anti-gliadin which is falling into disuse anyway. So for 17 (approx) out of 60 days you were gluten free and you were gluten lite in fall and gluten free for 3-4 days at a time during that period. It is hard to say if that would have affected your results, but really, your scores were not even close even though you did not give the ranges the lab used. And your total serum IgA is solidly mid-range. It is certainly possible for you to be non-celiac gluten intolerant. If you could have one of your children tested who has been eating gluten all along that would be a useful validation of whether celiac is involved or if you are all non-celiac gluten intolerant. There is evidence showing that NCGI is also genetically based, same as celiac. Maybe the wee fellow you were recently talking about could be tested.

But it certainly sounds to me like your whole family needs to be eating gluten free with the symptoms they are showing (excluding your husband, of course, but to make it easy on you you should cook entirely gluten free at home and let him get his gluten fixes outside the house, otherwise you run the risk of cross-contamination and it will be too much work for you.!!)

carriej82 Rookie

Hmmm, your testing results do look thoroughly negative, sorry to say, Yes, that is the full panel except for the anti-gliadin which is falling into disuse anyway. So for 17 (approx) out of 60 days you were gluten free and you were gluten lite in fall and gluten free for 3-4 days at a time during that period. It is hard to say if that would have affected your results, but really, your scores were not even close even though you did not give the ranges the lab used. And your total serum IgA is solidly mid-range. It is certainly possible for you to be non-celiac gluten intolerant. If you could have one of your children tested who has been eating gluten all along that would be a useful validation of whether celiac is involved or if you are all non-celiac gluten intolerant. There is evidence showing that NCGI is also genetically based, same as celiac. Maybe the wee fellow you were recently talking about could be tested.

But it certainly sounds to me like your whole family needs to be eating gluten free with the symptoms they are showing (excluding your husband, of course, but to make it easy on you you should cook entirely gluten free at home and let him get his gluten fixes outside the house, otherwise you run the risk of cross-contamination and it will be too much work for you.!!)

I am hoping my husband will get tested! He actually has more of the classic celiac symptoms than I do... fatigue (he takes 5 to 6 hour naps during the day after a full night sleep) achy legs, tingly hands and feet, chronic D and multiple trips to restroom all day long, stomach aches, nausea, depression, low testosterone, hot flashes. He does complain about his health and has been in search for answers but his answers must be in the form of a pill, so far he is not very willing to consider food a likely cause of so much suffering.. especially a food so common as wheat. He eats fast food everyday (by choice, I offer to pack a healthy lunch) so I think really is kind of afraid of the possibility of something like Celiac being a reality for him. We've had some conversations and he is back and forth between not wanting to hear it and then being more softened toward the idea of just getting a quick blood draw. So we'll see... if his bloodwork were positive and I know I am intolerant my kids' symptoms might make even more sense!!

Thanks mushroom for your input! I am finding it so hard to stay away from these forums as I am new to this and with everything I read more questions pop into my mind. It is wonderful to be able to glean so much from others' experience and knowledge who have traveled this road for a longer time.

mushroom Proficient

Oh, you are more than welcome Carrie. I looked through your posts and saw that we hadn't been fully responding to you :( Yes, if Dad has symptoms too then your children could have gotten both celiac and NCGI genes from their parents. To have your son tested (and his dad) would be an interesting proposition, if you could talk dad into it. If his troubles are as you say he really should try going off gluten too, regardless of testing results. But ahh, a fast-food junkie is hard to convert :rolleyes: Let us know how things work out and what you decide. Feell free to ask any questions that "pop into your mind." :D


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.