New to celiac!

[Neko-Quinn]

Hi everyone! I've been recently "diagnosed" with celiac. My doctor had me try going without gluten for a few weeks to see if it helped after we determined by food tracking that I was miserable after ingesting anything gluten. Given how miserable I was while eating it, she doesn't want to put me back on gluten to verify. So I suppose we're guessing? I've been gluten free for a little over a month now, and managed to have 2 accidents. Missing my gluten like crazy, in spite of how miserably sick I get. Any advice for a lady trying to deal with losing most of her favourite foods? Feels like I can't eat anything I want!

[kareng]

I am sorry that you got a bad Doctor.  Very irresponsible of him or her not to have you tested before going gluten free.  Very lazy of them to not treat a serious disease in thier patient.    Because , now, you are left wondering if you really need to be gluten-free and if it is serious.  

 

To to be honest, it sounds to me like you will not stick with gluten-free without a diagnosis.  That isn't meant to be mean.  I don't see any reason you should be very strict with the the diet.  There are other reasons, besides Celiac, that a gluten-free diet is helpful.  But most of those do not have to be followed as strictly as a Celiac must.  

The problem I see here is, that if you are an undiagnosed Celiac , eating gluten light can eventually lead to worse problems.  If it were me, I would start eating gluten again, now, and go back and get tested in 6-12 weeks.  If it's negative, you can still be gluten-free, as it seems to help,  but you wouldn't need to be worried about taking a burger off a bun or that some crumbs from the crackers got on the cheese plate.  Those are things a Celiac needs to a manage and make life more difficult.

[GFinDC]

I agree, it is best to get tested before going gluten-free.  It's a lifetime condition and that may end up being quite a while after all.

Sometimes we talk about gluten withdrawal on the forum.  You could look up some threads on that.  I expect many people do go through an adjustment period after going gluten-free.  Breaking the habit of eating some foods may take a little time.  But as you get more used to eating whole foods and simpler foods I think they are more filling and satisfying.  It's not just gluten that we give up when we switch to whole foods.  We are also avoiding lots of sugar, salt and carbs.  Many people stop eating dairy also, at least for a while.  I suggest not eating the gluten-free baked goods at first.  They are generally not as nutritious as their gluten counterparts.  More fat and sugar etc.

You should mainly eat meats, veggies, nuts and fruits.  There are some non-gluten grains that are ok too.  It's just a matter of time and adjusting, but your body may stop craving the gluten after a while.

[SLLRunner]

Welcome, Neko! I suggest eating gluten and then getting tested for celiac, which is very serious, especially if untreated. 

[Neko-Quinn]

I understand getting tested is extremely important, but given how quickly I was losing weight, and that I'm already underweight, for the sake of my health she decided the testing was not in my best interest at this time. When I eat gluten, I literally cannot function for days. I have spells where I can't even remember my own name. Given that I am the main monetary support for my family, returning to gluten is not feasible for me at this time. 

Testing aside, I do feel so much better off gluten. To the comment of some celiacs can't tolerate dairy, it's kind of ok for me, but I really have to be careful.

Definitely going to find the gluten withdrawal thread and read that! Thanks!

[kareng]

It wouldn't have take more than a few minutes to draw your blood before you went gluten free. 

[cyclinglady]

i agree with Karen.  I would still get another doctor.   If she was not savvy enough (followed guidelines per the American, Canadian, British or WHO GI Association) to order a celiac blood test before recommending a gluten free diet (and use Dr.Google like my neighbor ER doctor does when he does not know something), WHAT ELSE IS SHE MISSING (cancer, crohn's, anemia, etc.)?????  Guessing is okay....but not guessing when you have not done enough research is wrong!  Are we talking about a medical doctor?  (I just assumed that here).  

i am not trying to be unsupportive about the diet.  We are just trying to help.  We have just read so many negative postings about sheer doctor negligence!  

What about your your kids?  Siblings?  Parents?  celiac disease is genetic and you can be symptom free yet still be doing damage.

Take care!   Please advocate for your health.  

 

[Neko-Quinn]

My doc is actually a nurse practitioner, so that could be a portion of the issue. As far as family, I'm the only one with any problems, and I've always had a problem stomach. So far, my kids all seem to be alright, though for my sanity my hubs (who has nutritionist training, we just couldn't afford the testing fees) has taken us all off gluten at home.

Unfortunately, any other doctor would make me go back on gluten, and that's not something I'm currently able to do. So for now, I have to live with the guess of probably celiac. I'm not too worried about not sticking to the diet; the last time I was accidentally glutened was just a few crumbs. I was miserable for a week. So, I don't foresee any "cheating". 

I understand y'all are just trying to be helpful and not negative about it. It's a tough change, and it can be really rough when you're not even certain. Sometime in the (hopefully near) future I will ask about going back on for testing. It's just not something I can do at this time.

[RMJ]

You might consider getting the blood tests (soon).  If you've only been gluten free for a month, with a few mistakes, it is unlikely that high levels would have normalized.  However, you and your doctor would have to realize that although a positive test would support celiac, a negative test would not rule it out since you are gluten free.