Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Have More Questions & Need More Advice Please :)

mom26boys

Recommended Posts

mom26boys Apprentice
mom26boys
Posted

OK, so I went to see a gi today and showed him my original test result. I had an endomysial ab (iga) screen and it came back positive. There was also a titer done which came back at 1:5 (I have no idea what that means). He told me that my gp ordered the wrong test and that the endomysial ab screen is not an accurate test.

He explained the different ways to check for celiac and the different tests they do (which I already knew all about). He gave me the option of having a Tissue Transglutaminase AB IGA/IGG and an IGA Level and said that if the numbers are high enough, he wouldn't even bother doing the biopsy. He also said I could go with the genetic test, but that its a lot more costly. I asked him if he could give me an order for both and I would decide which test I wanted, and he did. So here are my questions for you:

1. What is the endomysial ab screen? Is it an outdated test? From what I understand it is 100% specific to celiac, but he doesn't seem to think so.

2. Based on the fact that the endomysial screen came back positive, would you do the genetic test or the other tests (TTG AB IGA/IGG and IGA)? I have read that there is a lot of false positives with those.

3. Should I do both tests? If so, has anyone had experience with their insurance co. not paying for the genetic test? I figured that the positive endomysal screen would warrant a genetic test, but he said not for a gastroenetrologist, and that they may not pay for it. I would love to just go ahead and do both tests but I'm concerned about the insurance kicking back the genetic test and having to pay for it out of pocket. I have an HSA and my deductible is met so everything is covered at 100%.

Thank you so much for your help and advice! I have gotten so much more from this forum than any other site I've gone to.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

Your insurance should pay for the Iga(checked to see if you are deficient or not which helps to validate the other tests) and the TTG Iga/Igg. You will have to check with your policy on the genetic testing. Mine won't pay for genetic testing at all. I found out when my youngest son was 14 mo old and being screened genetically for LAD (leukocyte adhesion deficiency). I had already taken him in and they drew his blood, when the lady from my work called me and told me they would not pay. She had the nerve to stop the lab from sending his blood to Mayo Clinic in in MN (the only lab at the time that performed the test) until she talked to me. I did not care if they paid for that test, we needed to know if he had it because it would have inpacted his care greatly. As a result I had to take him back in and get stuck again and I was furious. Anyway, I have not had myself genetic tested or my two boys because of the ins. not paying. For me it won't change anything (I am curious though) and I will annually have the boys screened or checked sooner if symptoms should arise. It probably would not hurt, but it's up to you, to have the rest of the pannel done. I didn't and wish I did so I would have a baseline to go on. I only had the TTG done. If you do decide you should have the anti gliadin antibodies done also.

Link to comment
Share on other sites
LDJofDenver Apprentice
LDJofDenver
Posted

Here is a link to the University of Chicago Celiac Center:

Open Original Shared Link

It discusses the different tests used and why, etc. Maybe it will help.

I'd go for the blood panels first, especially since they're typically covered under medical insurance. Then if you get what you feel is a false negative, you can always go to the genetic testing to see if you even carry the gene.

Also, many celiacs never get a confirmed medical diagnosis -- they just, usually out of desperation and years of misdiagnosis, went on a gluten free diet because many of their symptoms led them there, and all their problems disappeared. For many, that is enough of a diagnosis. It is an individual thing.

Link to comment
Share on other sites
mom26boys Apprentice
mom26boys
  • Author
Posted
Your insurance should pay for the Iga(checked to see if you are deficient or not which helps to validate the other tests) and the TTG Iga/Igg. You will have to check with your policy on the genetic testing. Mine won't pay for genetic testing at all. I found out when my youngest son was 14 mo old and being screened genetically for LAD (leukocyte adhesion deficiency). I had already taken him in and they drew his blood, when the lady from my work called me and told me they would not pay. She had the nerve to stop the lab from sending his blood to Mayo Clinic in in MN (the only lab at the time that performed the test) until she talked to me. I did not care if they paid for that test, we needed to know if he had it because it would have inpacted his care greatly. As a result I had to take him back in and get stuck again and I was furious. Anyway, I have not had myself genetic tested or my two boys because of the ins. not paying. For me it won't change anything (I am curious though) and I will annually have the boys screened or checked sooner if symptoms should arise. It probably would not hurt, but it's up to you, to have the rest of the pannel done. I didn't and wish I did so I would have a baseline to go on. I only had the TTG done. If you do decide you should have the anti gliadin antibodies done also.

Thank you. You make a lot of sense. I'm sorry about what happened to your little guy. That would make me furious too!!! Yes, whatever the tests say, it will not change anything for me. The proof for me was going gluten-free for 3 weeks and thats all I need to know. I'm more interested (and of course curious) in order to test my boys so they don't spend years trying to figure out what is wrong with them like I did. I suspect my dad and his mom had it and so thats why I'm being so adamant about being tested, even though the doctors think I'm a nut. I will have the rest of the panel done, since my ins. will pay 100% and I'll ask about the genetic test. Thanks again for your advice.

Link to comment
Share on other sites
mom26boys Apprentice
mom26boys
  • Author
Posted
Here is a link to the University of Chicago Celiac Center:

Open Original Shared Link

It discusses the different tests used and why, etc. Maybe it will help.

I'd go for the blood panels first, especially since they're typically covered under medical insurance. Then if you get what you feel is a false negative, you can always go to the genetic testing to see if you even carry the gene.

Also, many celiacs never get a confirmed medical diagnosis -- they just, usually out of desperation and years of misdiagnosis, went on a gluten free diet because many of their symptoms led them there, and all their problems disappeared. For many, that is enough of a diagnosis. It is an individual thing.

Yes, you are right. I have made up my mind that no matter what these tests say, as soon as I go to the lab, I am gluten free! That will have to be enough of a diagnosis for me. I am at the point of desperation and years of misdiagnosis, and as someone else put it who responded to one of my previous points, no matter what these doctors say, I don't need their permission to go gluten free. So yes, I will go ahead and have the panel done first and do the genetic afterwards. Thank you for the link you sent me too. It did answer a lot of questions. I was mainly confused because I thought the endomysial screen was 100% specific to celiac, but I will get the rest of them done too as that will hopefully paint a better picture. Thanks again!

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity...
    2. Nacina
      - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy...
    3. trents
      - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo the "gluten challenge" before testing but you need to understand that the...
    4. Fluka66
      - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this...
    5. Moodiefoodie
      - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well. I also...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748
    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      14 year old with Celiac & EOE still suffering...

      By Nacina · Posted

      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...