Celiac Testing Question (kind of long) - Mothering Forums

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#1 of 16 Old 11-23-2009, 02:41 PM - Thread Starter
 
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So a little background: My DH has not had a normal bowel movement since he was about 7. His usual thing is to have several not so firm ones. Some days its really bad. He spends like 15-20 min. a pop. He also had a festering rash. Steroid cream would sometimes help but it always came back when he stopped.

Two years ago he had the enterolab testing that said he had a problem with gluten as well as 2 celiac genes. So I convinced him to do a gluten free trial. Well his rash went away. However, his bowel issues persist.

Today he went to a highly touted celiac clinic associated with a large teaching hospital in Boston. He was hoping for nutritional/gut healing advice (he's sort of allopathically bent, don't ask). Anyhow, the dr. said that they couldn't do anything unless DH ate gluten for six weeks and they could do an endoscopy & colonoscopy to definitively diagnose celiac or not.

So here's my question. Does the endo & colonscopy ever have false negatives? What about the blood test? I've heard they can culture the rash. If it turns out to be Dermatitis Herpetiformis is that enough to diagnose celiac?

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#2 of 16 Old 11-23-2009, 02:58 PM
 
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I think you'll find useful information at this site (the link is direct to the page about blood and genetic testing, and it's shortcomings): http://www.celiacdiseasecenter.colum...05-Testing.htm.

Once there, you can navigate the other pages, one of which addresses the benefits of endoscopy and biopsy.
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#3 of 16 Old 11-23-2009, 03:16 PM - Thread Starter
 
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I think you'll find useful information at this site (the link is direct to the page about blood and genetic testing, and it's shortcomings): http://www.celiacdiseasecenter.colum...05-Testing.htm.

Once there, you can navigate the other pages, one of which addresses the benefits of endoscopy and biopsy.
Thanks for the link.

My husband is really on the fence. He knows if he eats gluten he's going to get a rash, which they said they could manage with steroids & give him rx diarrhea medicine to cope with the other end. NOt sure if its worth it.

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#4 of 16 Old 11-23-2009, 03:53 PM
 
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Why does he want to know whether he has celiac or if it's "just" gluten intolerance, if the end result is the same: no gluten? I never heard of a colonoscopy for diagnosis, only the endscopy/biopsy. Has he tried going off dairy too (because of the loose stools not really getting much better)? Some celiacs also have a dairy intolerance. I just know for me, if I knew I felt better off it, I wouldn't want to go back on it for 6 weeks and bear with the symptoms "just" to have a label on it. But that's just me. I mean, yes, it can help your insurance if you itemize and you're close/above the limit anyway, because you can take the difference between the special groceries and regular groceries off your taxes. But if he already knows he has the genetic tendency toward it... I just don't see the point (except that he's allopathic and wants the label). He's going to be the uncomfortable one though, so I guess it's just what he feels like doing/what's important.

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#5 of 16 Old 11-23-2009, 05:05 PM - Thread Starter
 
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Why does he want to know whether he has celiac or if it's "just" gluten intolerance, if the end result is the same: no gluten? I never heard of a colonoscopy for diagnosis, only the endscopy/biopsy. Has he tried going off dairy too (because of the loose stools not really getting much better)? Some celiacs also have a dairy intolerance. I just know for me, if I knew I felt better off it, I wouldn't want to go back on it for 6 weeks and bear with the symptoms "just" to have a label on it. But that's just me. I mean, yes, it can help your insurance if you itemize and you're close/above the limit anyway, because you can take the difference between the special groceries and regular groceries off your taxes. But if he already knows he has the genetic tendency toward it... I just don't see the point (except that he's allopathic and wants the label). He's going to be the uncomfortable one though, so I guess it's just what he feels like doing/what's important.
He doesn't need the diagnosis, its the doctor that's pushing for it. He just wants help figuring the rest out.

Yes, he's been off dairy. It's just like my daughter. They are both dairy & gluten free but their problems are far from over. They both have loose stools. It's so frustrating.

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#6 of 16 Old 11-23-2009, 05:11 PM
 
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He doesn't need the diagnosis, its the doctor that's pushing for it. He just wants help figuring the rest out.

Yes, he's been off dairy. It's just like my daughter. They are both dairy & gluten free but their problems are far from over. They both have loose stools. It's so frustrating.
Have you tried eliminating soy and corn for them both? Those are the other two common ones that seem to be in so many things. Is it all the time? Or sporadic? Would a food journal help? Do your daughter and husband seem to react at the same time?

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#7 of 16 Old 11-23-2009, 05:18 PM - Thread Starter
 
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Have you tried eliminating soy and corn for them both? Those are the other two common ones that seem to be in so many things. Is it all the time? Or sporadic? Would a food journal help? Do your daughter and husband seem to react at the same time?
Yes, yes.

DHs job was the food journal. I think he lasted 2 weeks for both of them.

The condition is more or less constant. My dd takes 20 min. in the bathroom too. I think she's terrified to go at school. The ND thinks her problem is bad bacteria overgrowth, if you've been following us o the monthly thread.

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#8 of 16 Old 11-23-2009, 05:20 PM
 
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glutenfreegoddess on her blog (she's celiac and diary free) talks about testing to find the other foods beyond gluten she was still reacting to (I assume IgG testing), and how much better she felt eliminating those. Is it worth considering something like that, at least for your DH? I can't imagine it's worth eating gluten for weeks and feeling like garbage, just to be told he can't have gluten...

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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#9 of 16 Old 11-23-2009, 05:25 PM
 
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The TruFlor is actually helping my DS a lot. He was taking forever in the bathroom, and only going about once every 3-4 days. Now he does sometimes every day, sometimes every other day, and it doesn't take him long. I had been giving him regular probiotics, but this TruFlor is supposed to kill the yeast and repopulate the good bacteria at the same time. I'm giving him 240mg (split) Mg a day too. That was for something else, but that might be helping the poop too. DS did fail the yeast spit test (as did I, but I don't want to do anything about mine too much, with all the fillings, etc. I have).

I'm hoping the Genova stool tests has some more answers from us. I haven't heard if the doctor got our results yet, but is that something you could do for your DH and DD?

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#10 of 16 Old 11-23-2009, 05:41 PM - Thread Starter
 
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The TruFlor is actually helping my DS a lot. He was taking forever in the bathroom, and only going about once every 3-4 days. Now he does sometimes every day, sometimes every other day, and it doesn't take him long. I had been giving him regular probiotics, but this TruFlor is supposed to kill the yeast and repopulate the good bacteria at the same time. I'm giving him 240mg (split) Mg a day too. That was for something else, but that might be helping the poop too. DS did fail the yeast spit test (as did I, but I don't want to do anything about mine too much, with all the fillings, etc. I have).

I'm hoping the Genova stool tests has some more answers from us. I haven't heard if the doctor got our results yet, but is that something you could do for your DH and DD?
I'll have to look into the TruFlor. I'm working on getting mag into her.

We did a stool test 2 years ago and I had wanted to do another but the stupid ND wanted us to try tannalbit before getting her retested. I was supposed to talk to her about it on Friday but she had to cancel. What does the Genova test test for? I'm up for anything that might help. I'm thinking of going to see one of Pb's "people" for a consult.

ETA: Do you have a link for TruFlor? Google isn't finding anything.

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#11 of 16 Old 11-23-2009, 06:05 PM
 
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It seems like, for some of these problems, when they exist long enough, they spawn new problems that then separately need to be solved. Sometimes just taking out problematic foods is enough, but I think more damage can be done if the foods aren't taken out early enough.

With too-squishy poop and celiac, I've read of fiber being problematic to an already damaged digestive tract. Either low fiber diets or SCD, I've read, can sometimes be helpful, something to physically take some of the stress off the digestive tract. But I don't know how to figure out beforehand whether SCD would be helpful--and hey, for making your life easier, SCD isn't it.

Investigating weird bacterial issues for DH seems reasonable too, just because the problem's been around so long and regular probiotic products or foods may not be enough if a weird bacteria or yeast has really settled in. But I don't see an allopathic doctor going down this route--is your DH at a point where he's ready and interested in doing more for his own health?

(and while I'm sure you're frustrated with DH's 2 weeks of food journals, I'm not sure my DH could/would do it even that long--great man, but I think he'd forget and it just wouldn't get done)
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#12 of 16 Old 11-23-2009, 07:34 PM - Thread Starter
 
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It seems like, for some of these problems, when they exist long enough, they spawn new problems that then separately need to be solved. Sometimes just taking out problematic foods is enough, but I think more damage can be done if the foods aren't taken out early enough.
I totally think this hits the nail on the head. For DH at least, he's had a problem for like 35 years. That a lot of water under the bridge. Even DD it was probably 3-4 years before I got any semblance of a clue.


With too-squishy poop and celiac, I've read of fiber being problematic to an already damaged digestive tract. Either low fiber diets or SCD, I've read, can sometimes be helpful, something to physically take some of the stress off the digestive tract. But I don't know how to figure out beforehand whether SCD would be helpful--and hey, for making your life easier, SCD isn't it.
Yes, I'd been contemplating the GAPS diet. Just not sure how I would implement that with a kindergardener. DH is reading the GAPS book now.


Investigating weird bacterial issues for DH seems reasonable too, just because the problem's been around so long and regular probiotic products or foods may not be enough if a weird bacteria or yeast has really settled in. But I don't see an allopathic doctor going down this route--is your DH at a point where he's ready and interested in doing more for his own health?
Well the problem is I can't really say "See, altenative docs got it going on. Look what they've done for me, DD, DS". I just don't have any success to point to. So I've been letting him slowly pursue his own course of action. Although he did get enterolab testing & that's why he went GF to begin with. So that was something. And while I believe he needs gut healing and supplements or at the very least probiotics, he's not quite there yet.


(and while I'm sure you're frustrated with DH's 2 weeks of food journals, I'm not sure my DH could/would do it even that long--great man, but I think he'd forget and it just wouldn't get done)
Yes, I'm sure 2 weeks was a stretch for him. It's just that I'm trying to maintain supplement schedules for 3 people. Food journaling is an extra burden I can't handle right now.

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#13 of 16 Old 11-23-2009, 09:08 PM
 
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I'll have to look into the TruFlor. I'm working on getting mag into her.

We did a stool test 2 years ago and I had wanted to do another but the stupid ND wanted us to try tannalbit before getting her retested. I was supposed to talk to her about it on Friday but she had to cancel. What does the Genova test test for? I'm up for anything that might help. I'm thinking of going to see one of Pb's "people" for a consult.

ETA: Do you have a link for TruFlor? Google isn't finding anything.
Theralac TruFlora, Bio-Cleansing Formula
3 probiotics, 2 enzymes
I got it from the osteo that PB recommended for me (he's awesome; both DS and I see him, in case you want to travel that far! You could stay here for a weekend).
It's 2 capsules a week (3.5 days apart) to begin with.

I can't remember what the Genova tests for, because I sent the paperwork off with the lab. There was a thread on it a while ago. Though I don't remember if it was in the chat thread or somewhere else. But it tests for yeast, and inflammation, and parasites, and all sorts of stuff.

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#14 of 16 Old 11-23-2009, 11:15 PM - Thread Starter
 
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Hmm. Looks interesting. Is it dairy free?

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#15 of 16 Old 11-24-2009, 10:51 AM
 
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"contains no yeast, eggs, corn, soy, milk, casein, gluten, wheat, peanuts, or animal protein." DS has been on it about a month and he's been doing okay with it and he's extremely sensitive to dairy. Not sure if it's only available through doctors or not. It says "medical strength probiotic" on the top of the label.

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#16 of 16 Old 11-24-2009, 03:02 PM - Thread Starter
 
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"contains no yeast, eggs, corn, soy, milk, casein, gluten, wheat, peanuts, or animal protein." DS has been on it about a month and he's been doing okay with it and he's extremely sensitive to dairy. Not sure if it's only available through doctors or not. It says "medical strength probiotic" on the top of the label.
You can fid anything on the internet. lol.

Of course I'm always a little nervous about doing stuff w/o a provider

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