Is there a test for gluten issues? - Mothering Forums

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#1 of 27 Old 09-26-2007, 05:50 PM - Thread Starter
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I have always had tummy issues. Those phontom pains that seem to come out of no where and then dissapear. I have had them for as long as I can remember, but lately they have been getting worse. For the last two weeks I have been feeling very ill, especially in the evening when I am relaxing. I get awful pains, bloating, a feeling of gas but it's not, and some nausia. It's pretty much like I have always felt, but more intense lately. Always when I have had a rich carb day, even sprouted wheat seems to trigger.

So I'm thinking maybe it's a gluten/wheat issue. I have actually suspected it for a long time, but never really wanted to make those drastic changes. I have decided that I need to eliminate gluten from my diet totally to see if it is in fact what is causing this discomfort. It's looking like it is. Yesturday was a gluten free day and last night I had no issues at all (the night before was unbearable after having a veggie burger for dinner with a sprouted wheat bun).

My dh is tollerant of my ways, but I think he feels like I'm a bit over the top sometimes. So before I go running to the doctor and make a fool of myself or make me out to be some kind of paranoid freak, can you be tested for gluten issues? I have mentioned this to her before and she just chalked it up to one of those mysteries within our bodies.

Thanks,
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#2 of 27 Old 09-26-2007, 06:11 PM
 
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my experience with gluten is similar to yours, I finally 'tested' myself enough times that I finally believed it and changed my diet. There is a blood test your DR. can perform, but my son and I both have strong reactions to gluten and tested negative with it. Going in my DR said she found the tests to be inaccurate, and if I could tell that gluten was an issue for me then that was the best test available.

I also felt the worst after high carb foods and the specific carb diet was strongly healing for me, and still what I go back to if I've binged on grains and feel sluggish or pained. I'm strictly GF though, and feel much clearer and better for it. I think I will do best with a very low grain diet... I'm working towards it : oh corn chips you are not my friend
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#3 of 27 Old 09-26-2007, 07:09 PM - Thread Starter
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Thanks for sharing your experience. Makes me feel good to know that others have similar issues and it's not all in my head. How do they diagnose celiac's disease?
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#4 of 27 Old 09-27-2007, 01:01 AM
 
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My family did their testing through www.enterolab.com

It's a stool sample, so it's the most sensitive out there (That I know of). You have to have a lot of gut damage for the antibodies to make it into your bloodstream, but a stool sample has the antibodies from the intestine, since it's traveled through your intestine!

The "gold standard" for celiac disease is an intestinal biopsy that checks for flattened villi in specific parts of the intestine. I wouldn't put my kids through that unless they were REALLY sick and it was the only way. Since my Mom and Grandfather have celiac, I knew to watch for gluten.

I tested my three older girls and myself through enterolab and found out that 2 are celiac, while myself and oldest daugter are "just" gluten intolerant. That was while 4th dd was a baby. So, our whole house if GF.

Good luck! It really can be helpful to "know for sure"--especially when you're feeling better and tempted and wondering if it wasn't possibly just in head before!
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#5 of 27 Old 09-27-2007, 01:32 PM
 
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Were you able to get the test at enterolab covered by insurance? Did you doctor prescribe it?

Mom to DMI & Silly Apple
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#6 of 27 Old 09-28-2007, 12:31 AM
 
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Originally Posted by chlobo View Post
Were you able to get the test at enterolab covered by insurance? Did you doctor prescribe it?
Enterolab doesn't bill insurance. My insurance paid a very little for it--it was out of network, etc and we had to pay deductibles for the year and such.

You don't need a doctor to prescribe it, though. You just order the test, and they send you the kit. Since it isn't a blood draw, it's easier to do without doc's orders.

I know that Great Plains Laboratory bills some insurance
www.greatplainslaboratory.com
My family just hasn't come positive on the blood tests, though, so that route wouldn't work as well for us.

Also, York Allergy Clinic bills some insurance *I think*. And *I think* they do the stool sample as well--it's been a long time since I did this research.
www.yorkallergyusa.com

HTH!
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#7 of 27 Old 09-28-2007, 12:21 PM
 
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anti-tissue translutaminase and anti-endomysial antibodies

my doc does blood tests for these

Michelle: wife to J, mom to M (2001), E (2003), C (2005), S (2007) and O! (2009) And someone new in 2011!
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#8 of 27 Old 09-28-2007, 03:56 PM
 
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Enterolab seems to be the most sensitive. The blood testing for IgA and tTG can miss a lot but it does catch quite a few people if that is all you can get a regular doctor to order. You have to be eating gluten regularly though, that is the mistake we made when we had DS tested.

See the research article on the site: "Before the Villi Are Gone". You don't have to have celiac disease to have whole body effects (endocrine, joint, bone, autoimmune, etc.) from gluten intolerance.

We just tested DS at Enterolab and he has the genes as well, so we know we need to be vigilant throughout his life to environmental triggers.
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#9 of 27 Old 09-28-2007, 03:58 PM
 
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Originally Posted by chlobo View Post
Were you able to get the test at enterolab covered by insurance? Did you doctor prescribe it?

Yes, we have a PPO, they pay 80%. You don't need a dr. to order any tests at Enterolab.
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#10 of 27 Old 09-28-2007, 04:01 PM
 
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Originally Posted by momto5girls View Post
I tested my three older girls and myself through enterolab and found out that 2 are celiac, while myself and oldest daugter are "just" gluten intolerant. That was while 4th dd was a baby. So, our whole house if GF.
Just got DS's tests and haven't talked w/ doc yet so I will ask you! A positive malabsorption test AND a positive wheat test at Enterolab means you are celiac? Just a positive wheat test and negative malabsorption means you are "just" gluten intolerant?

I know they cannot officially dx celiac b/c of the gold standard biopsy being the current model.
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#11 of 27 Old 09-28-2007, 04:02 PM
 
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To the OP, there's no freakin' way this is all in your head!!!!

(sorry for the multiple posts)
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#12 of 27 Old 09-28-2007, 07:46 PM
 
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Originally Posted by JaneS View Post
Just got DS's tests and haven't talked w/ doc yet so I will ask you! A positive malabsorption test AND a positive wheat test at Enterolab means you are celiac? Just a positive wheat test and negative malabsorption means you are "just" gluten intolerant?

I know they cannot officially dx celiac b/c of the gold standard biopsy being the current model.

AACK! I just lost my first reply to this.

Anyway, we did the genetic testing along with the stool sample. Two of my girls have one celiac gene and one gluten intolerance gene. One of those daughters is EXTREMELY sensitive to gluten, as well. So, I figure that these two dd's have actual celiac disease. The one who is so sensitive had been off gluten for 2 years when she took the test and she had no malabsorption--which I took to mean that she has healed (woohoo!).

Myself and our oldest daughter each had wheat antibodies, 2 gluten intolerance genes, and malabsorption. It's impossible for us to have celiac since we don't have the gene--though we are still gluten free and the malabsorption showed that we had intestinal damage.

Does this make sense? My extended family has at least 6 or 7 other family members that are GF and only one has come up positive on the blood test. Everyone else has major reactions with gluten, though, so there is no doubt about what is causing things. For some reason our family doesn't show up pos on the bloodtest. So, I always recommend other testing if at all possible.

JaneS-I hope you have the answers you need for your son now.
OP--hang in there. I hope you get the answers you need as well!
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#13 of 27 Old 09-30-2007, 12:21 PM
 
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Originally Posted by mclisa View Post
anti-tissue translutaminase and anti-endomysial antibodies

my doc does blood tests for these
I'm pretty sure the main problem with these is that they will only dx celiac (in pretty advanced stages) and not "just" an allergy to gluten.
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#14 of 27 Old 09-30-2007, 02:33 PM
 
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I'm pretty sure the main problem with these is that they will only dx celiac (in pretty advanced stages) and not "just" an allergy to gluten.
I agree. You've done a lot of gut damage for the antibodies to be detected in the bloodstream. It's not an IgE reaction, like an allergy, so that doesn't show up on the bloodtests. My kids don't show positive on the IgE tests for wheat.

Also, some of the tests (can't remember which one, might be the old celiac bloodtest) test for a certain IgA antibody that only a percentage of the population makes...my family being one that doesn't make it. So, the blood test only came up as conditionally positive. :
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#15 of 27 Old 10-25-2007, 01:17 AM
 
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If you could only afford one test on the EnteroLabs site which would be the best to indicate if you have celiac or not?
It's late and what I'm reading is just not registering

Sorry also wanted to ask if anyone knows of a Canadian company that is reputable who will do this testing as well

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#16 of 27 Old 11-11-2007, 06:34 PM
 
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I have also been looking at Enterolabs for testingfor my kids.

I was referred to them by the GF store that is like 2 FREAKING STREETS FROM MY HOUSE!!! Sorry for the shouting but seriously, we have been suspecting this for only a couple weeks, and I discover that the natural pharmacy nearby is also a GF haven. Wow.

Money is an issue for us and I wouldn't even bother with testing except that a paper with a "diagnoses" will mean my ex might actually try to follow this diet for my kids. Right now if ds tells him during visitation that he can't eat wheat he says "don't give me that crap." :

I wan't to just do the gluten sensitivity test, for the sole fact that it's all I can really afford. Is this worth it? Will this test alone be sensitive enough?

Oh, and I just realized that Enterolabs is in Dallas. like, 20 minutes from me!

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#17 of 27 Old 11-11-2007, 09:52 PM
 
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I'm planning on doing this test at tax time when we have the $, we just don't have it right now. I've heard great things about Enterolab and if you check out www.celiac.com there's a lot of people there who have used it. Evan was blood tested w/ only a slight positive on his overall IgA, not the ones specifically related to celiac, but he's not quite 3 and has only been back on gluten for a year so I doubt the damage would've been enough to pick up on the testing. He's been mostly gluten free since the 15th (he's had a very sneaks and tonight I royally screwed up), but has already grown 1/2" after almost 6 mos of no growth at all.

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#18 of 27 Old 11-12-2007, 05:35 AM
 
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what is the difference between celiac and gluten intolerance?

we are waiting on test results for my younger dd. i know she cant have wheat - she actually never had it b/c she got diarea as an infant when i ate it and she nursed. Thank G-d we figured that one out! Someone mistakenly gave her a bite of a wheat cracker maybe 2 months ago and her exema came back after being gone a long time and had not gone away untill after we did the blood draw i took her off of spelt and rye as well.

another question: when they test for imunoglobulins, what does that tell you?
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#19 of 27 Old 11-12-2007, 04:18 PM
 
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If you could only afford one test on the EnteroLabs site which would be the best to indicate if you have celiac or not?
It's late and what I'm reading is just not registering

Sorry also wanted to ask if anyone knows of a Canadian company that is reputable who will do this testing as well
As far as I know, Enterolab is the only place doing this type of testing. You could ask them about Canada, though (I've been seeing this question a lot lately).

As for the one test, what is your reason for doing the test? IMO, the best (and cheapest) test is going GF. As far as Enterolab's tests, in order to be relatively sure that celiac is the problem (and not "just" gluten sensitivity) there are three tests that are needed together, and possibly a fourth. SORRY! The gluten sensitivity test, the tissue transglutaminase test, and the gene test. And possibly the malabsorption test (although, in my mind, it's not as important for "diagnosis"). The gluten sensitivity test will tell you if you're reacting to gluten, the tissue transglutaminase test will tell you if your reaction is autoimmune in nature, the gene test will tell you if you have a gene for celiac, or if you have a gene for gluten sensitivity, and the malabsorption test will tell you if there is enough damage to your intestines that you aren't absorbing nutrients well (actually, it's specific to fats, but if you have trouble with fats, you probably have trouble with other nutrients, too). So, it really depends on what you're hoping to get from the testing.

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Originally Posted by Bella Babe View Post
I have also been looking at Enterolabs for testingfor my kids.

.....

Money is an issue for us and I wouldn't even bother with testing except that a paper with a "diagnoses" will mean my ex might actually try to follow this diet for my kids. Right now if ds tells him during visitation that he can't eat wheat he says "don't give me that crap." :

I wan't to just do the gluten sensitivity test, for the sole fact that it's all I can really afford. Is this worth it? Will this test alone be sensitive enough?
Boy, this is tricky. I'm so sorry your ex is being so difficult. That's just awful!

Here's the thing. The enterolab tests aren't used for official diagnosis. They won't say "you have celiac". The results they send will give the results of the test, [i.e. "Fecal Antigliadin IgA 51 (Normal Range <10 Units)"], and then further down they will give an interpretation, [i.e. "Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a stric! t and pe rmanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well."]

If this is enough for your ex, then do just that one test. If it's not, then maybe adding the tissue transglutaminase or the gene test done. Here's what they say about a positive tissue transglutaminase test in the results: "Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity." An autoimmune response to gluten is in large part what defines celiac. But they don't say that, so you're ex would have to take your word for it.

And this is what they say about the gene testing (this was for me, who had the genes but did not show positive for gluten sensitivity -- we didn't have ds gene tested since he has type 1 diabetes, which is carried on the same gene as celiac, so we know he has the gene): "Interpretation Of HLA-DQ Testing: HLA gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivit! y (DQ1 o r DQ3 not subtype 8). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe."

I don't think that quote is as helpful for you to see what they say, since I didn't test positive for GS, and since I have both genes. It's the only thing I've got, though. Sorry.

What will help to convince you ex partly depends on how educated he is, and how educated his friends/family are. And how motivated he is to learn more about the testing for celiac. For instance, my BIL is a physician, so he doesn't buy it. He searched the journals and could find no articles in support of the stool testing. But he doesn't know enough (any) GI docs, so he doesn't hear about how more and more GI docs are using the Enterolab tests.

My mom (a nurse, who totally trusts the medical community) asked my sister's dr. to test for celiac, and wouldn't even double check which test they did (it was only one, so obviosly he didn't order the whole panel, so it's worthless, not to mention not very sensitive anyway). :

I don't want to discourage you, but do want you to know the reality of it.

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Originally Posted by gilamama View Post
what is the difference between celiac and gluten intolerance?

another question: when they test for imunoglobulins, what does that tell you?
Celiac is an autoimmune response to gluten, meaning the body attacks itself in the presence of gluten. Gluten sensitivity is just that, a sensitivity to gluten. There can still be damage, like with any sensitivity, but usually not so severe, and not the same type of damage (but who cares really, damage is damage).

When they test for immunoglobulins, it tells you whether your body has an immune response to a particular product.

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#20 of 27 Old 11-12-2007, 04:35 PM
 
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Sorry, I forgot say a couple of things.

Enterolab test results have been known to convince many reluctant husbands.

Also, something to tell your ex about the importance of all of this is that unteated celiac (and even gluten sensitivity, to a lesser degree) has been linked to other autoimmune diseases. That was type 1 in our son's case. And while it's relatively easy to remove gluten, thereby avoiding many problems/diseases, the other diseases are much more difficult to treat, and carry many more risks (not meant to scare you, but maybe it can be used to scare your ex into compliance? Oooh, he just makes me so mad! And I don't even know the man. ).

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#21 of 27 Old 11-12-2007, 05:00 PM
 
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As far as I know, Enterolab is the only place doing this type of testing. You could ask them about Canada, though (I've been seeing this question a lot lately).

As for the one test, what is your reason for doing the test? IMO, the best (and cheapest) test is going GF. As far as Enterolab's tests, in order to be relatively sure that celiac is the problem (and not "just" gluten sensitivity) there are three tests that are needed together, and possibly a fourth. SORRY! The gluten sensitivity test, the tissue transglutaminase test, and the gene test. And possibly the malabsorption test (although, in my mind, it's not as important for "diagnosis"). The gluten sensitivity test will tell you if you're reacting to gluten, the tissue transglutaminase test will tell you if your reaction is autoimmune in nature, the gene test will tell you if you have a gene for celiac, or if you have a gene for gluten sensitivity, and the malabsorption test will tell you if there is enough damage to your intestines that you aren't absorbing nutrients well (actually, it's specific to fats, but if you have trouble with fats, you probably have trouble with other nutrients, too). So, it really depends on what you're hoping to get from the testing.

Thank you for all the info. I have a couple symptoms but mostly the bloating and going back and forth btwn loose stools and constipation, also I dont know if it's a 'celiac' thing, I feel like a dead weight after eating breads/pizza ..I can't keep my eyes open!

I have to be honest, What I want from testing is 1) to be able to say confidently "I have Celiac." or "I can't eat that because of gluten sensitivity/celiac"(Though I'd say 'allergy' to family, to be honest, because they dont get that sensitivity can be damaging, just a minor bother : ) and 2) if everything shows it's ok then I'd like to not be burdened with finding all new recipes, convincing family, having the family go GF, all the extra costs for the different flours etc. I'm not trying to be insensitive to those of you on GF diets, but honestly, if it was just me I could handle it, but dd1 is extremely picky and dh is extremely skeptical and negative about everything involving something 'new'

at the very minimum all I want/need is a test showing damage is being done by gluten..I dont need to know about genes etc. right now

Thank you for all your help.

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#22 of 27 Old 11-12-2007, 05:07 PM
 
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B-B sorry you are going through that with your ex. sorry for your kids

I dont have the results yet for the gliadin and transglutimase tests that were done on my dd2 - those test for antibodies right?
But her the results for 3 types of imunoglobulin (m, g and a) were finished and they were low. so that would indicate that she was not having increased imune responses no?

thanks for the answers christieb!
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#23 of 27 Old 11-12-2007, 05:44 PM
 
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So what kind of doctor would I ask to prescribe these tests?

I've been trying to eat GF for several weeks now, and seeing absolutely no improvement. I think I may have been completely sabatoging myself when preparing wheat for other family members. So I NEED to know- either I'll make a full-blown effort and keep wheat flour out of my home, or I'll stop worrying about consuming small amounts of wheat once in a while. I just can't put all this work into a "maybe."

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So what kind of doctor would I ask to prescribe these tests?

I've been trying to eat GF for several weeks now, and seeing absolutely no improvement. I think I may have been completely sabatoging myself when preparing wheat for other family members. So I NEED to know- either I'll make a full-blown effort and keep wheat flour out of my home, or I'll stop worrying about consuming small amounts of wheat once in a while. I just can't put all this work into a "maybe."
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#25 of 27 Old 11-23-2007, 11:51 AM
 
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ChristieB- Thank you so much for your thoughtful and in depth post. With my ex, there are a few factors. he is a big bully, but you know how "strong" bullies really are... But is also um... I guess narcissistic is the best word. He will go years, lose friends and family, jobs, etc rather than admit something needs to be changed on his part.

on the other hand, his ( albeit slightly insane) girlfriend is very health consious and gi jane proactive ( seriously, I can't figure out why they are still together) and I think if it was proven that the dk's needed to avoid something she would try to make it happen.

but.....(There is always a "but") I am starting to fear that the only way I will truly convince them is to have a biopsy done. Or, I don't know, maybe just a ped that agrees with me.

Sigh, thinking out loud. I ordered just the gluten sensitivity test bc honestly, as far as the stool testing is concerned, the 4 together won't convince anyone more than the one.

It's amazing though. There is such a huge difference in my son when he is off gluten. All the symptoms that led to searching into Celiacs Disease just go AWAY. And his quirky, sweet little personality just shines.

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#26 of 27 Old 11-23-2007, 11:52 AM
 
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Originally Posted by Ruthla View Post
So what kind of doctor would I ask to prescribe these tests?

I've been trying to eat GF for several weeks now, and seeing absolutely no improvement. I think I may have been completely sabatoging myself when preparing wheat for other family members. So I NEED to know- either I'll make a full-blown effort and keep wheat flour out of my home, or I'll stop worrying about consuming small amounts of wheat once in a while. I just can't put all this work into a "maybe."

A Gastroenterologist as far as I know. But the enterolab stool testing doesn't need a prescription.

Shelley, mom to dd 5/19/01, ds 9/06/02, and ds 4/01/07.  Lost babe 4/09

belly.gifDue 12/18/12!

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#27 of 27 Old 11-23-2007, 06:31 PM
 
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Goodness, I don't know what happened, but I missed a bunch of posts on this thread. Sorry I didn't respond to much before now.

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Originally Posted by gilamama View Post
B-B sorry you are going through that with your ex. sorry for your kids

I dont have the results yet for the gliadin and transglutimase tests that were done on my dd2 - those test for antibodies right?
But her the results for 3 types of imunoglobulin (m, g and a) were finished and they were low. so that would indicate that she was not having increased imune responses no?

thanks for the answers christieb!
Your welcome.

The blood tests you had done may or may not indicate no immune response. Elevated IgA is associated with celiac, and sometimes IgG, also (not sure about IgM?). The thing is, the immune response to gluten takes place in the gut. For the antibodies to be in the blood, there has to be an awful lot of gut damage.

The tests also have about a 10-15% false negative rate. It can really be very frustrating! And the blood tests really only test for possible celiac, not gluten intolerance. And just to confuse things more, they're affected by how much gluten a person is eating, and how recently (having been on a GF diet for even a short while before the test could cause a false neg., and I've even heard that eating a low gluten diet can affect it).

This is why Dr. Fine developed the Enterolab tests.

And this is why trying a GF diet is the best test (as difficult as it is).

Quote:
Originally Posted by Bella Babe View Post
ChristieB- Thank you so much for your thoughtful and in depth post. With my ex, there are a few factors. he is a big bully, but you know how "strong" bullies really are... But is also um... I guess narcissistic is the best word. He will go years, lose friends and family, jobs, etc rather than admit something needs to be changed on his part.

on the other hand, his ( albeit slightly insane) girlfriend is very health consious and gi jane proactive ( seriously, I can't figure out why they are still together) and I think if it was proven that the dk's needed to avoid something she would try to make it happen.

but.....(There is always a "but") I am starting to fear that the only way I will truly convince them is to have a biopsy done. Or, I don't know, maybe just a ped that agrees with me.

Sigh, thinking out loud. I ordered just the gluten sensitivity test bc honestly, as far as the stool testing is concerned, the 4 together won't convince anyone more than the one.

It's amazing though. There is such a huge difference in my son when he is off gluten. All the symptoms that led to searching into Celiacs Disease just go AWAY. And his quirky, sweet little personality just shines.
Boy, once again, he just makes me angry (admittedly not difficult these days). Hopefully the Enterolab result will at least help to convince the girlfriend. If it helps, it's "signed" by dr. But then, you know your audience.

FWIW, there are some gastroeterologists (sp?) who do feel the Enterolab tests are worthwhile. Apparantly, there are more and more (still a minority, though, as I understand it) who actually order the tests and use the results in their diagnosis. Who knows if you could find one/afford one, though. The one I heard about (and who apparantly said this about others, too) is in the Bay Area, I think.

Is there any way (probably not, but I figured I'd throw it out there) for your ex to see the difference in your ds when he's GF? My optimistic side (it's still there, just hiding most of the time ) thinks that surely if he could see the changes, he'd be compliant. And maybe your ds could tell him how he feels different when he's GF? Don't know how old your ds is, maybe it wouldn't work. I say this because when our ds first went GF, he was his Grandpa who was a skeptic, and told him how he felt different when he was exposed to gluten, and my dad turned around. Then again, as a grandparent who lives several states away, he has no chance to try to sabotage things.

Anyway, I'm just rambling now. Hope you find a way to convince your ex.

Quote:
So what kind of doctor would I ask to prescribe these tests?
The blood tests can either be ordered by a gastroenterologist or by a family physician. The only problem with a family physician ordering them is that some of them don't know what all the tests are that should be ordered. It's best to make sure they're knowledgeable.

Christie ~ proud Mama to : 5/01, and : 3/07; and proud wife to my since 1992. We have 13 and 2 : It's looking more and more like either a farm or a zoo around here.
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