Husband Questioning Enterolab Results For Dd

[Nantzie]

I knew it. I knew it. I knew it. I knew it. I knew it! I knew he wouldn't want to put her gluten-free just with Enterolab.

He says we're not doctors. And it's probably because she's not eating the best quality of food. (Very picky eater. Hey she gets all four food groups, which is better than some people do.) So it probably has to do more with nutrition than anything else. Or it's the American Diet. And children are resiliant and can recover from things a lot better than adults can. He's grasping at all the straws. The end result is that he's not going to go for it unless the doctor tells him to.

So off we go to the pediatrician. God knows what he's going to say about it. It's an older doctor, so I don't have my hopes up. His nurse practitioner is actually having her son tested for celiac right now, so maybe he's up to date on it. Fingers crossed...

If he and his family weren't so terrible to me when I first found out about celiac, I would just feed her gluten-free and deal with the disbelief when I had to. But the thing is that they will fight about anything and everything. (They call it debating. But it's really fighting with mudslinging and the whole nine.) I'm not putting up with eye-rolling, disbelief, whispering, rudness and fighting every time we go over there.

So as much as I didn't want to, it looks like I'll be pushing for an official diagnosis. Hopefully, I can get the diagnosis of gluten intolerance rather than celiac if it gets to that.

Sigh.

Nancy

[angel-jd1]

I knew it. I knew it. I knew it. I knew it. I knew it! I knew he wouldn't want to put her gluten-free just with Enterolab.

He says we're not doctors. And it's probably because she's not eating the best quality of food. (Very picky eater. Hey she gets all four food groups, which is better than some people do.) So it probably has to do more with nutrition than anything else. Or it's the American Diet. And children are resiliant and can recover from things a lot better than adults can. He's grasping at all the straws. The end result is that he's not going to go for it unless the doctor tells him to.

So off we go to the pediatrician. God knows what he's going to say about it. It's an older doctor, so I don't have my hopes up. His nurse practitioner is actually having her son tested for celiac right now, so maybe he's up to date on it. Fingers crossed...

If he and his family weren't so terrible to me when I first found out about celiac, I would just feed her gluten-free and deal with the disbelief when I had to. But the thing is that they will fight about anything and everything. (They call it debating. But it's really fighting with mudslinging and the whole nine.) I'm not putting up with eye-rolling, disbelief, whispering, rudness and fighting every time we go over there.

So as much as I didn't want to, it looks like I'll be pushing for an official diagnosis. Hopefully, I can get the diagnosis of gluten intolerance rather than celiac if it gets to that.

Sigh.

Nancy

I would say go ahead and take the enterolab results along to your appointment. It really couldn't hurt to show the doctor what tests have already been done. Possibly he will go for a dietary challenge and the positive enterolab results and give her a diagnosis. That would satisfy all involved.

-Jessica

[kabowman]

My boys' father is the same way. Doesn't believe the youngest even has asthma, let alone lactose intolerance (not gluten, not yet anyway and celiac disease was negative). The last time we wer eat the docs office, I blurted out that he doesn't believe it, because he doesn't have problems at "his house" but I told the doc that he comes home sick and has to spend days in the bathroom to get over a weekend. The doc asked him, is that true? He said yes.

Now, my son said his dad actually makes fun of him about taking lactose pills but he is trying to ignore it because he is tired of being so sick!!!

My kids are old enough to fight for themselves now though and it is different dealing with ex's - my hubby completely believes, he can see the results!!!

[Nancym]

Has your husband see Dr. Fine's CV? He's going to be publishing at the end of the year, maybe that'll help. Argh! So frustrating. If you can you might check to see where Dr. Fine will be speaking. His lecture is very compelling. I just saw him in San Diego at our celiac meeting here.

[Jestgar]

Here's something to show your ped. It shows that the DQ1 genotype is associated with celiac AND ALSO microscopic colitis that may be affected by gluten.

Fine KD, Do K, Schulte K, Ogunji F, Guerra R, Osowski L, McCormack J.

High prevalence of celiac sprue-like HLA-DQ genes and enteropathy in patients with the microscopic colitis syndrome.

Am J Gastroenterol. 2000 Aug;95(8):1974-82.

PMID: 10950045 [PubMed - indexed for MEDLINE]

OBJECTIVE: Celiac sprue is associated with specific HLA-DQ genes (mainly DQ2). Because there are epidemiological and histopathological similarities between celiac sprue and microscopic colitis, we hypothesized that these syndrome may share an HLA genetic predisposition and pathogenesis. METHODS: The HLA-DQ genes of 25 patients with celiac sprue, 53 patients with the microscopic colitis syndrome, and 429 normal controls were typed and compared. Serum was analyzed for antigliadin and antiendomysial antibodies. Small intestinal biopsies were analyzed for signs of histopathology. RESULTS: HLA-DQ2 or DQ1,3 (the latter as DQ1,7,DQ1,8, or DQ1,9) were seen more frequently in both patient groups relative to controls. In patients with the microscopic colitis syndrome, serological tests for celiac sprue were weakly positive in 17%; mild inflammation of the small intestine without villous atrophy was present in 43%, and inflammation plus partial or subtotal villous atrophy was present in 27%. CONCLUSIONS: A shared set of predisposing HLA-DQ genes account for the epidemiological overlap of celiac sprue and microscopic colitis. Mild to moderate mononuclear cell inflammation of the small intestine, often accompanied by partial or subtotal villous atrophy, is frequent in patients with the microscopic colitis syndrome. Although further studies will be necessary to determine if this enteropathy is induced by dietary gluten, we speculate that the small intestinal but not colonic histopathology in patients with microscopic colitis is caused by immunological gluten sensitivity.

[Nantzie]

Thanks for all the great advice! I was going to bring her Enterolab results, but bringing his curriculum vitae, etc. is a great idea. The pubmed article too.

I don't even know what to say about my husband. He says that we can't just up and decide something is wrong with us because we're not doctors. But then if you bring up something by a doctor, or a study or whatever, he'll say, well they're just guessing. Nobody really knows what causes anything. Science is just a bunch of theories and no real fact. In ten years they'll probably say that it's something else anyway. And he says this about anything, even DNA. Well, they don't really know that if Jenny has two copies of the gene that I have one. They're just guessing.

Good Lord. If it were left up to him, we'd all be still using leeches. He's turning into his father. His dad won't go to the doctor, but doesn't trust any alternative medicine either because they're all out to just make money. Both the doctors and the alternatives. My thing is that you've got to pick one. If you don't like doctors, take your health into your own hands and go to alternative practitioners. But don't just ignore it completely. That kind of attitude can get you all the way to dead really quickly. Grr...

I also have to mention that my husband, his dad, his brother, some of his brothers kids and his grandmother all have symptoms that I would consider to be possibly related to celiac. So that explains some of the attitude issues and argumentativeness.

So with my husband really the only thing that will completely convince him is an obvious change in Jenny. And since he hasn't been seeing the tiredness and diarrhea and tummy aches and crankiness that I've been seeing lately, I'm not sure he would even notice. Probably once she goes gluten-free and gets an obvious glutened reaction, he'll start being supportive. But we have to get to that point first.

To his credit, he did say that he totally believes that I have celiac and that he knows this is real. He just thinks that there are different levels of severity with celiac. (Despite what I tell him of course.) He thinks that Jenny's obviously isn't as bad as mine was, so it's no big deal. Considering the fact that I didn't get the diarrhea and tummy aches until I was 17, she's actually getting more symptoms a lot sooner than I ever did.

Well, this will be interesting. I've got a call in to my doctor to see what the official diagnosis ended up being with me. Since I was biopsy-negative and blood negative, but dramatic dietary response, I'm not sure what she put down.

Nancy

[Nancym]

Well, I don't know if it'll work, probably not. But you might let him know that the damage caused by gluten can lead to all sorts of incurable things like autoimmune diseases and so on. Wouldn't it be better to err on the side of caution and prevent her from getting these than to look at it in retrospect 20 years from now and be sorry you ignored the evidence and having to explain that to her as an adult? "Sorry dear, yes we had evidence that you couldn't eat that stuff but Daddy wasn't comfortable asking people to make accomdations to your diet so we decided to forget about it."

[Nantzie]

Well, I don't know if it'll work, probably not. But you might let him know that the damage caused by gluten can lead to all sorts of incurable things like autoimmune diseases and so on. Wouldn't it be better to err on the side of caution and prevent her from getting these than to look at it in retrospect 20 years from now and be sorry you ignored the evidence and having to explain that to her as an adult? "Sorry dear, yes we had evidence that you couldn't eat that stuff but Daddy wasn't comfortable asking people to make accomdations to your diet so we decided to forget about it."

Oooo.... You're good.... I'll have to keep that one in my back pocket!

He knows all that cumulative damage stuff. "Knows" is a pretty shaky word in this instance though.

I think that he'll come on board eventually. I'm not worried for the long-run, just not looking forward to any short-term fights.

But hey, if your wife has a genetic disorder then your kids may also have a ...? 1+1=...? If it walk likes a duck and quacks like a duck... ? Pop quiz!

Well, my husband and my inlaws took a few months to get on board with me, and now they're actually really great about it. This is just a whole 'nother level, and I'm sure it's not going to be easy for them.

I talked to my doctor and she said that since my tests were negative, she didn't diagnose me with celiac, but absolutely thinks that I need to be off gluten, so it's gluten intolerance officially.

Nancy

[Nantzie]

Well we've got an appt for 2:45 tomorrow (Friday). I don't deal well with unknowns. Not knowing what he knows about celiac if anything, and even if he know abou that, if he knows that a person can have serious celiac-like reactions without a positive biopsy or bloodwork. Because I was MESSED UP this time a year ago. I could barely walk, and had so many GI problems I couldn't even go to church for pete's sake.

At least I don't have to wait a month like I did with my own first appt.

I'm going to come into his office with a lot of stuff printed out. Hopefully he's in a listening mood.

Thanks for letting me vent again...

Nancy

[Sarah8793]

Good Luck Nancy, let us know how it went.

Sarah

[Guest nini]

shoot. I didn't give my husband a say in it... since I knew that I have Celiac and that it was genetic AND she was showing all they symptoms I had as a baby (according to my mom) I didn't care what kind of grief I got over it. I wasn't going to let my daughter live her life the way I had lived mine. Always sick, always getting teased in class because "Nini's stinking up the bathroom again Miss Y." Family trips always having to make everyone stop to find a bathroom, running into walls and doors, having seizures, everyone thinking I was being a hypochondriac and making it all up??? Heck no. I wanted her to have the chance to be "normal" that I didn't have. And if "normal" means eating different food from other kids so be it.

Her response to the diet was nothing short of miraculous and NO ONE can argue with me on her improvement. I had to take her to a new Dr. yesterday for a required well check up, and lo and behold she's perfect! perfectly healthy, and the Dr. even commented that "I very rarely see a child this age, THIS healthy"... how sad. All our children should be THIS healthy. Her official dx is gluten intolerance and that is fine by me. Fine by the Dr. that saw her yesterday too. My daughter was a VERY picky eater until going gluten-free, now she eats a wide variety of healthy foods and CHOOSES to eat fruits and vegetables over junk.

[Nantzie]

Nini, how awful that you had to go through all of that. You must be so proud of your daughter, and of yourself for figuring all of this out.

I'm going to go into the appt with the idea that I'll pretty much be steering the appt as much as I can. I used to be a medical transcriptionist, so I learned a little bit about how to tell a doctor he's wrong or misinformed (none of them can spell or punctuate any better than they can write...) while still preserving his ego. But if he's adamant that celiac is rare and all that old-fashioned BS, then who knows.

If he's uninformed, I'm also being mindful that it's not just MY kid that I'm advocating for. Because I know that I can put her gluten-free without anybody's permission, including my husband. But what about that mom who comes in next week and will take the doctor's word 100% and doesn't put her child gluten-free?

By going gluten-free even after negative blood and biopsy, my regular doctor is now telling people who come in with celiac symptoms to go gluten-free despite test results. (I'm sure it wasn't just me but a few patients deciding to do this...) Hopefully, I'll be able to do the same thing if he isn't informed.

Today I'm in a much more optimistic mood about it. I'm approaching it like a professional rather than a SAHM. I also learned a long time ago that when you're a woman dealing with a professional person, whether it's a doctor, a lawyer, an accountant or whatever (if it's a man especially), that the more polished and professional you look, and the more straightforward and businesslike you speak, the more respect you get. You can say the exact same thing in SAHM clothes that do in business casual and get two completely opposite reactions. For some reason professional people tend to feel superior about rolling their eyes and being dismissive to a SAHM, but will never do it in front of a professional woman. It sucks, and it's not fair, but it's just true.

So we'll see how it goes. I'm going for the sales award today.

Nancy

[penguin]

I wouldn't go in there, trumpets blaring, ready for battle. I would play the part of the meek and confused (though remarkably well informed) mother that did some research. Dr's have very fragile ego's, you know, and they like to have things be their idea.

[Nantzie]

Yea, I'm definitely planning on feeling the situation out first. Then I'll decide if I need to be more outspoken. If he's even just willing to listen to what I have to say, and consider my thoughts, opinions and insights as a person living with gluten intolerance, and my subsequent concern for my child's health, I'll be happy.

I think I've only seen this doctor twice since we've been with his office (only about two years). I usually see his NP. So I'm just not sure how he deals with things like this.

Geez... Good thing I haven't been glutened today or I'd be a real basket-case about this!

Nancy

[Nantzie]

The doctor was great. He said that Enterolab is an accredited lab and he trusts their results. He said that he wants her to see the ped GI for followup, but with the results we already had he wasn't sure if they would want to do any further testing or not.

He also said that since my son is only in the 13th percentile for weight, and has the dark circles under his eyes, we should test him too and we can get it all done at the same time. I was one step ahead of him because I just got his test kit for Enterolab in the mail today.

I just told my husband about the appt, and he seemed a little surprised that the doctor trusted the results. He just said, Wow. Okay.

So we're just waiting for the GI appt. I'll talk to the GI's office next week to see if they want her to stay on gluten or not. Considering the fact that my kids eat mostly gluten-free anyway except for some snacks, they may not.

Either way, I'm going to start testing alternatives to her gluten favorites. I don't need much. I need something fun to eat like goldfish crackers and I need to buy the gluten-free chicken nuggets now. She eats the pre-packages peanut butter crackers, but that's easy to replace because she likes my gluten-free crackers anyway. She likes the Nutrigrain bars, but I can make pocket pies with gluten-free pie crust. Other than that, the only thing I need to do is talk to her school.

The garbage can is sure going to be full next week.

Nancy

[corinne]

Jestgar - I don't want to lead this discussion off-topic, but thanks SO MUCH for your reference article. I have been searching a long time for an article like this. (even tried pubmed and biosis)

"Because there are epidemiological and histopathological similarities between celiac sprue and microscopic colitis"

I have microscopic colitis and my mother has celiac. My gasteroenterologist has said that there is no connection between the two and that diet has no effect on MC. For 1.5 years I was on anti-diarrheal drugs and when those quit working he wanted to put me on anti-inflamatory or steroid drugs. At that point, I decided to give gluten free a try. After eliminating a number of other foods, I have been symptom and drug free for 6 months.

Proof yet again that diagnostic tests don't always show gluten sensitivity.

[gfp]

Just in general I would take a hard stance anyway that health is NOT debatable.

Secondly you can't debate it unless they have the background knowledge and it sounds like they are unlikely to read up ....

Thirdly congrats with Dr.