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

Enterolab Testing - I Need References To Show Dh!

mommyagain

Recommended Posts

mommyagain Explorer
mommyagain
Posted

I am self-diagnosed as celiac or gluten-intolerant (I don't care which, because the cure is the same). I have never had a single test for celiac, because my doc "diagnosed" me with IBS and said "Deal with it, we all have occassional diarrhea".

My dd is 6yrs old and LOVES bread (and pizza, and cake, and cookies, but mostly bread).

I want to have both of us tested through Enterolab. She does not seem to have any obvious celiac symptoms, other than a sort of distended belly. She is kinda chubby, so she doesn't have the "skinny celiac" look. Of course, I never did either. She has a layer of chub (everywhere) but just beneath the chub, her belly seems firm. I don't know if this is normal, but other kids her age definitely do NOT have her belly, even the ones who are a lot chubbier than she is. She is in dance so I see her next to 20 others in leotards a couple of times a week.

We had a problem with constipation for a little while a couple of years ago, but we're pretty sure that was a potty training issue, not a food issue.

So, based on a total lack of symptoms (from my dh's point of view), I still want to test. He thinks I'm looking for a "buddy" to be gluten-free with.

He also does not think that I should have the enterolab testing done unless a doctor orders it. I said that a doc will order blood tests (probably negative because I've been gluten free for a month) and MAYBE a biopsy (also probably negative) but the enterolab tests can be done for up to a year after going gluten-free, AND are more accurate. He does not believe it. He is the son of 2 doctors and ALWAYS believes the doctors.

Are there any books or journal articles (preferably in a reputable medical journal) that I can have him read? I don't want to go ahead and do the test without telling him, cuz he'll be really pissed when he does find out. Any ideas?

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Dr. Fine (Enterolab) has not published his studies for peer review. No other lab (as far as I know) is doing this type of testing in the US. I dont think you will find anything to support Dr. Fines claims in any medical journals.

Sorry...but thats the truth of it. :(

happygirl Collaborator
happygirl
Posted

I would not say they are more accurate....they are assessing different conditions.

I would do the Celiac panel on your son.

gfpaperdoll Rookie
gfpaperdoll
Posted

sorry, I think your husband should support you in your decision. I do not think that you should have to gather evidence to validate something that you want to do. Does he golf or fish or hunt? do you spend an equal amount of money on your hobbies as he does? If not I think that it is time that you have your own discretionary spending money. If that is not possible & you do not work, I would think that you could do some odd jobs or babysitting to earn some money.

Check with the gastro doctors in your area & see if they are using Enterolab. Some of them are using them...also, some of them are using Enterolab but are not real vocal about it...

Also, I do not hold faith in "doctors" - they will let you almost die & still not get a proper diagnosis.

Did you see the Oprah show today? There were two hollywood mothers on there talking about the gluten free diet & dairy free as a success for autism. One of the mom's said her science was her gut feeling.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

My dh would say (sorry for my french): "Opinions are like a... holes. Everyone's got one!" Well, isn't Dr. Fine a doctor also? So why doesn't your dh go by that then? I agree with everything said before. If you earn your own money and everybody pays for their own hobbies, you might as well go ahead and spend it on your own (and the one of your little one) diagnosis. BTW, I also was self diagnosed, which was later on confirmed by my doctor. Now I'm going to do the Enterolab tests on Lukas, my little one.

mommyagain Explorer
mommyagain
Posted
  • Author

Unfortunately, I've had some pretty serious money problems in the past, which my husband bailed me out of many times. I work, but I know that I cannot handle money. Both of our paychecks are direct deposited into our joint checking account. We have 2 credit card accounts (both accounts "officially" in his name, because I can't qualify for a card with a reasonable interest rate) that we use for day-to-day expenses. Once a week, we sit down and pay bills and discuss what was spent and why. We both have hobbies but don't spend much money on them. If anything, mine are more expensive than his.

He is the son of 2 doctors, both of whom have spent about half of their careers doing research. To him, research that has not been peer reviewed is worthless.

I will try calling some gastro docs around here. I think if I can get a doc to order the testing, he'd be okay with it, at least for me. He still won't see any point in getting dd tested until she starts showing obvious symptoms. Any idea if calling Enterolab could get me a list of docs in my area who may use them?

Thanks for all of your great responses!

mama2 Apprentice
mama2
Posted

I agree that you should not go behind DH back and get you and your 6y tested. BUT you both need to be tested. So maybe, since you are already gluten-free and have + response why don't you have the test done first and when it comes back + , every doctor then says to have your children tested too. Then have her tested.

As soon as we found out ... my DH sent my DD to have the blood test done.

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

I would guess that you have at least one DQ1 gene - that comes with the neurological problems, including addictions - to spending, alcohol, food - what ever your favorite addiction is...ADD, ADHD, dyslexia, depression, OCD...

When you get your gluten problem under control that should get better & if you by chance have that gene, another huge thing is that you should be dairy free.

Spend your Saturdays making extra money... it can be done...

Rachel--24 Collaborator
Rachel--24
Posted
I would guess that you have at least one DQ1 gene - that comes with the neurological problems, including addictions - to spending, alcohol, food - what ever your favorite addiction is...ADD, ADHD, dyslexia, depression, OCD...

I have DQ1 and I dont have any of these problems with addictions. :huh:

I have things that I enjoy...and I have favorite foods...but doesnt everyone??

I also did not have neurological problems until I became mercury toxic....but even with that I do not have addictions.

kevieb Newbie
kevieb
Posted

we are involved in a celiac study through the university of california, irvine. i asked the woman that is over the study about all these so called gluten sensitive genes. she was not aware of any gluten sensitive genes besides the two that have been identified for celiac. she told me that they know there are more genes involved. i think that enterolab is pretty much alone in naming all these gluten sensitive genes--------how long now has dr. fine been saying he is going to publish?

CarlaB Enthusiast
CarlaB
Posted
I have DQ1 and I dont have any of these problems with addictions. :huh:

I have things that I enjoy...and I have favorite foods...but doesnt everyone??

I also did not have neurological problems until I became mercury toxic....but even with that I do not have addictions.

Me either ... double DQ1 and no addictions.

I have neuro issues from Lyme Disease ... going gluten-free didn't help the neuro stuff at all, but the abx for Lyme are. I also have no problems with dairy ... I eliminated it for six months, noticed no difference, added it back in, and noticed no difference.

I would have your dd tested by blood test since she is still eating gluten. Blood tests will be covered by insurance. As for yourself, Enterolab won't tell you anything your dietary reponse hasn't told you already.

CarlaB Enthusiast
CarlaB
Posted
i think that enterolab is pretty much alone in naming all these gluten sensitive genes--------how long now has dr. fine been saying he is going to publish?

Not only that, he says all genes are gluten sensitive or celiac except DQ4 found in Asians. So if you're not Asian, the gene testing is a waste of money unless you're looking for celiac genes.

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. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you...
    2. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    3. Mark Conway
      - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think...
    4. islaPorty
      - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your hea...
    5. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748
    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Have I got coeliac disease

      By Mark Conway · Posted

      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      Celiac and dermatitis herpetiformis has taken Me from Me

      By islaPorty · Posted

      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
×
×
  • 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.