Benefits to getting tested for Celiac?

[mom2boyz]

I'm pretty sure I have celiac, and I've probably had it since I was a teenager.  We're a Swedish family.  I believe my aunt also has it (she's a head shorter than her siblings and has always had a hard time keeping food down), and my son who has weight gain issues, and hives that mysteriously and alarmingly come and go.  I have what I thought was IBS, female problems, premature labor, dental enamel problems, and trouble gaining weight.  Realization happened this past weekend, I've been grain & sugar free by choice, eating at home since the holidays, feeling great, and on Friday I had pasta and I'm still feeling the effects.  So I started looking at gluten intolerance, and found myself here.

I'm pretty angry at the medical community, especially on my son's behalf.  He's had problems since birth (probably because I had problems and I nursed him), and they've never really done anything about it.  I don't want to even look at his doctor right now.

I am also hesitant to introduce more gluten in our diet just to get tested for celiac.  I don't want to have diarrhea for weeks by reintroducing gluten, and really I want to get on with my life,  gain 10 lbs and feel healthier.  I really don't see a good reason to test.

[exshuffleskater]

55 minutes ago, mom2boyz said:

I'm pretty sure I have celiac, and I've probably had it since I was a teenager.  We're a Swedish family.  I believe my aunt also has it (she's a head shorter than her siblings and has always had a hard time keeping food down), and my son who has weight gain issues, and hives that mysteriously and alarmingly come and go.  I have what I thought was IBS, female problems, premature labor, dental enamel problems, and trouble gaining weight.  Realization happened this past weekend, I've been grain & sugar free by choice, eating at home since the holidays, feeling great, and on Friday I had pasta and I'm still feeling the effects.  So I started looking at gluten intolerance, and found myself here.

I'm pretty angry at the medical community, especially on my son's behalf.  He's had problems since birth (probably because I had problems and I nursed him), and they've never really done anything about it.  I don't want to even look at his doctor right now.

I am also hesitant to introduce more gluten in our diet just to get tested for celiac.  I don't want to have diarrhea for weeks by reintroducing gluten, and really I want to get on with my life,  gain 10 lbs and feel healthier.  I really don't see a good reason to test.

I went through this too... same here, my aunt and I have similar health, only mine's much worse.  I wish I could've had a child.  You're lucky in that.  Gratefulness wherever it's found, right?  I decided to try and validate teh diagnosis because I took care of a couple of dying and elderly people in my family (somehow I end up the caregiver, I guess bc I have no kids, but I don't mind).  And it became a hassle to get them proper diets when others were cooking for them. Places would claim they did gluten-free, and I'd say, ok you don't have to beperfect about it, but it would be great if the easy stuff were done... like use gluten-free breads from Udi for sandwiches, etc...  and they'd ignore it.  If they had a diagnosis, nobody would've been able to ignore it.  They'd have been bound to do it.  And additionally they'd have been required to avoid Cross Contamination.  That's the boogieman of food service.  Being nice doesn't work when it's balanced against somebody's bottom line. And I think, someday, we all will need help, so having the diagnosis is more of a long term issue.  Plus your child will be more easily tested if you already have the diagnosis.  It's known to run in families.  I wish my mom were diagnosed already (I susupected she had it), and I could claim a family tie to it, it would make doctors listen more. 

[mom2boyz]

13 minutes ago, exshuffleskater said:

I went through this too... same here, my aunt and I have similar health, only mine's much worse.  I wish I could've had a child.  You're lucky in that.  Gratefulness wherever it's found, right?  I decided to try and validate teh diagnosis because I took care of a couple of dying and elderly people in my family (somehow I end up the caregiver, I guess bc I have no kids, but I don't mind).  And it became a hassle to get them proper diets when others were cooking for them. Places would claim they did gluten-free, and I'd say, ok you don't have to beperfect about it, but it would be great if the easy stuff were done... like use gluten-free breads from Udi for sandwiches, etc...  and they'd ignore it.  If they had a diagnosis, nobody would've been able to ignore it.  They'd have been bound to do it.  And additionally they'd have been required to avoid Cross Contamination.  That's the boogieman of food service.  Being nice doesn't work when it's balanced against somebody's bottom line. And I think, someday, we all will need help, so having the diagnosis is more of a long term issue.  Plus your child will be more easily tested if you already have the diagnosis.  It's known to run in families.  I wish my mom were diagnosed already (I susupected she had it), and I could claim a family tie to it, it would make doctors listen more. 

That is a good point, I think I'll talk to his doctor about it.  I really find the whole diagnosis process very unacceptable.  I get that diagnosis is hard to get, but it's not very accurate, and it's potentially damaging.

[5143Betty]

Hi:) I went gluten free over a year ago after I had many celiac symptoms. I feel amazing and decided not to get tested, but I’m rethinking that now. My thinking now is that I’d like to be able to know I’m not causing any damage and not knowing. I’d like to know I’m  healthy for sure, and that I’m doing well avoiding cross contamination also.  I haven’t worked up the bravery to go back on gluten, but I know I’m going to eventually.  Best of luck in your decision. 

[cyclinglady]

I completely get your not wanting to do a gluten challenge.  My hubby went gluten free some 17 years ago based on the poor advice of my allergist and his GP.   The gluten free diet worked though.  Then 12 years later, I was diagnosed with celiac disease.  Anemia was my only symptom — no GI symptoms.  

My hubby would be the first to say that I have had WAY more support from medical, family and friends.  It was easy to get our kid tested since I was diagnosed even though she was symptom free.  If she does develop celiac disease, she could be protected at school with a 504 plan.   

Everyone has different issues and circumstances, only you can determine what is best for you and your family.  

[lyfan]

Fifteen years ago, perhaps four doctors (two in the US, one in Japan, etc.) really were working with celiac. Ten years ago, it was "Haven't you heard about" and the general medical community may have still be unlearned but they knew where to refer people to pursue this. Now? It is open news, there is gluten-free food marketed in the stores, and research IS being done.

The issue of not being able to have a "proper" diagnosis without gluten followed by a biopsy is ridiculous, yes. The problem is that reliable non-invasive testing simply hadn't been an issue, it requires expensive research and trials. That's not restricted to Celiac.

But perhaps more so, one could ask why even bother with formal testing? If your condition is not celiac, but you are non-celiac wheat sensitive, the "treatment" and procedures to follow are identical. The problem and solution are identical. So, the golden standard testing is pretty much worthless to the sufferer.

If you are reacting to gluten, and removing gluten from your diet solves the problem? That's pretty much all you need to know and all you need to do. As much as I would also like non-invasive conclusive testing and more work towards a "cure" (which may come from vaccination, gene therapy, and other more esoteric approaches) I know that for now, given the state of the medical arts, I don't need a gluten challenge or a biopsy. I need to stay away from gluten, and there's no doctor on the planet who can give me more specific or better advice. So, start with that. Explore other options with patience, as you find out about them. Right now? It is a waiting game.