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

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

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

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

I would do the Celiac panel on your son.

gfpaperdoll Rookie

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

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

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

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

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
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

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
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
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.

  • 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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    5. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.