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Enterolab Testing - I Need References To Show Dh!

mommyagain

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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?

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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.

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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.

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