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

Who Has Had The Igenex Test?


ARK

Recommended Posts

ARK Apprentice

We were finally able to afford the IGeneX test for our 14 yr old son. We had it done on January 30.

We were told it was around $250, but when we got there we found out it was $390!!!!!!!!!!!!

Heart attack. :o

We went ahead and did it, and cut ourselves REALLY SHORT on money for the month of February because my son is so sick and we need answers!

My question for anyone who has had this test done: How long did it take to receive your test results?

THANKS!!!!!!!! :)


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Hi,

I had the test....it took about 2 weeks for my Dr. to get the results back. IgeniX is in my area....a couple blocks from my doctors office....so my blood was brought over to the lab right away. I dont know if this may have sped up the process. I would say you should get the results between 2-3 weeks.

My insurance covered half of the cost of testing.

Good luck and I hope you get some answers about your son.

happygirl Collaborator

Ark:

I had it done in Dec. I had the bloodwork drawn on a Wednesday afternoon, two weeks and two days later (a Friday), I had an app't, and they were already in. I think it took exactly 10 business days. They fax the results to the doctor.

My tests were not positive but not negative....trying to figure it out.

Best of luck,

Laura

ARK Apprentice

OK, thanks everyone!

I just hope the results are in my hands by the 13th because we have an appointment with a new doctor and I want to take ALL of our test results along and see what she has to say about WHY THIS KID CANT GET WELL!

Our current doctor will most likely call us as soon as he gets the results. He is a great guy, but totally unfamiliar with Celiac and doesnt treat people with Lyme disease either.

You know, I would think that I'd be used to waiting 2 or more weeks for test results by now, but it is still pure AGONY every darn time!! <_<

Rachel--24 Collaborator

ARK...make sure whoever reviews the results knows how to read them.

They can appear to be negative when in fact they are questionable and the lab recommendation in this case would be to re-test after a period of 4-6 weeks.

I've seen it happen where Dr.'s ignore this and just report the test as negative.....when in fact its not...its equivocal.

I sat and talked to Dr. Harris at IgeniX about my results....which were equivocal. He recommended doing an antiobiotic challenge and re-testing. Many times the equivocal/negative tests will come back positive after antibiotic treatment jump-starts the immune system.

The results rely upon whether or not the immune system is actively fighting the disease.....sometimes it is not producing sufficient antibodies. An antibiotic challenge would be a short round of antibiotics which can wake up the immune system if its not producing antibodies.

I have not done the antibiotic challenge myself because of other tests pointing toward Lyme....I've already been diagnosed based on results of various tests. I may decide to do the challenge in the future though.....just to give myself peace of mind.

Good luck. :)

georgie Enthusiast
They can appear to be negative when in fact they are questionable and the lab recommendation in this case would be to re-test after a period of 4-6 weeks.

On one of the Thyroid Lists a lady said she had Lyme a few years ago, and has been tested recently and is OK. The blood test was negative and only P41 Ab.=Present/Abnormal. She was told that she did not currently have it. Does this mean that she might still have it and the right test hasn't been done ? She has multiple food intolerances and can only eat about 5 foods and has lost heaps of weight.

Rachel--24 Collaborator
On one of the Thyroid Lists a lady said she had Lyme a few years ago, and has been tested recently and is OK. The blood test was negative and only P41 Ab.=Present/Abnormal. She was told that she did not currently have it. Does this mean that she might still have it and the right test hasn't been done ? She has multiple food intolerances and can only eat about 5 foods and has lost heaps of weight.

Yes,

She can still have it. The labs that test for Lyme arent very sensitive at all....I think they are less than 60% sensitive. That means alot of people have false negatives. If the symtpoms are there...most likely the Lyme is there as well.

IgeniX tests are far more sensitive....which is why they are the preferred lab for Lyme testing.

I would guess that she wasnt treated by a Lyme specialist and was not treated long enough and probably still has Lyme...hence the weightloss and food intolerance. I would not trust the lab results if they came from a lab which does not specialize in Lyme and other tick borne disease.

Also...Lyme is a clinical diagnosis. There is no test at this time which can completely rule out Lyme....clinical symptoms come first when making the diagnosis.

If this woman had Lyme and still has symptoms....its very irresponsible for a Dr. to ignore this and to rule it out based on test results alone.

The very sickest Lyme patients usually test negative because their immune system does not produce enough antibodies. This is why its important for the Dr. to take into consideration the patients history and their symtpoms.

Here are 9 reasons to NOT rely on bloodtests alone....

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

The reasons why the worst cases of infection will always tend to test "negative" has to do with the nature of the blood test itself.

The tests that are predominantly used are designed to test for the antibodies that fight against the lyme organism


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



Celiac.com Sponsor (A8-M):



georgie Enthusiast

Thanks Rachel I will tell her this. I recalled you saying a bit about Lyme and how hard it was to test for it. Seems you need a good Dr for it - and need to look at symptoms too.

ARK Apprentice

Thanks so much for the info Rachel.

I am a little worried about the results being accurate because hi immune system is beat up already from the gluten problem.

He has so many symptoms and they could be from Lyme, Celiac, or any number of things!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.