Has A Dietician Been Helpful To Anyone?

[coldnight]

I've posted it a couple times, but I accidentally went gluten-free and felt a 90% improvement within a week. I don't -think- I'm eating the wrong things, but I keep getting sporadically sick and it'll last for a couple days, then I'll feel pretty good for a week, or maybe two.

But this is not a whole lot better of a situation than I was in, eat what I wanted and took medicine to compensate. Now I can't take medicine unless I need it, or that becomes a painful problem.

I'm starting to wonder if gluten is THE problem, or just a related thing. I haven't eaten dairy in forever either. I've had every medical test they can come up with over the last several years, barring some extreme odds, I am probably not a celiac. Which, in a way, is disappointing, because I have some nasty symptoms, and I thought I had found THE thing for them. So, now I'm better, take much less medicine (about 1/20th), but I still get pretty sick from time to time.

Can I see a dietician or someone who can kind of look at what I can and can't eat and come up with some kind of coherent idea? I mean, I'm kind of lost, some of getting sick is from trying new foods and such, but I don't think I can subsist on steak and rice for eternity. I know food is related, because cutting out gluten helps a LOT. But I still don't think I know the underlying cause of why a whole myriad of foods bother me. It's really discouraging, have been sick for days now. I could have got some CC from a restaurant I ate at, but the odds of gluten being the root cause are very low in my estimation... so, I'm looking for other alternatives, someone who knows a lot about food that can perhaps put this into categories I can understand, I feel like I'm kind of walking around blind and making myself ill. I'm definitely not worse off for avoiding gluten, but it's really changed the situation in a way that's hard to handle.

hopefully that's not too rambling and makes sense, I don't think straight when I don't feel well, heh.

Thanks to you all again for your insightful answers and support.

--edit--

I wanted to add that I try to eat healthy, it bugs me though, I know there is something severely wrong with me, because other people can eat a variety of foods fine. They might get sick occasionally, but I am usually sick every single day, unless I stick to a very simple diet, and that has only been recently. So, in some ways, I think food is part of the problem, but I wonder what the cause is. How come other people, besides people here for instance, not have these same symptoms if it's random food allergies. How many people in the world can be so drastically intolerant to everything that it makes them sick to their stomach on a daily basis for almost a decade? there has to be an underlying cause... the GIs have not been tremendously helpful, they've given me medicine, but that is only so good for so long. I guess it's just discouraging to think you have found a reason WHY you feel sick, but yet you continue to get sick. It really bothers me when I can't definitively tie an incident back to gluten. For most I can, but for others, I just don't know, it seems random.

[AliB]

There are different things you can try but quite a few of us who have been in a similar situation of being unable to eat hardly anything without getting some kind of reaction have been following the Specific Carbohydrate Diet (SCD) with some success as it removes the commonly troublesome foods and focuses on good wholesome foods that encourage healing. It is gluten and dairy-free by its nature (although it does permit a little dairy at a later stage when the gut is well into the healing process).

If it is something you might be interested to look at there is a thread on this section that you are welcome to come and 'pick our brains' on, and the official website is 'breaking the vicious cycle'.

When like us you are already on a very limited diet because of food intolerance anyway, and the Medical Profession has been unable to come up with any answers, there is little to lose by trying and the possibility, as we have experienced, of much to gain!

I have been following it for the last 10 months and although I still have a way to go, I can now tolerate a lot more foods than I could 10 months ago!

It is possible that you might find a dietitian who is 'clued up' about food intolerance (although I have never come across one personally!) but I have seen that some nutritionists and practitioners are actually recommending the SCD to some of their patients as they have seen good results too.

[Lisa]

There are different things you can try but quite a few of us who have been in a similar situation of being unable to eat hardly anything without getting some kind of reaction have been following the Specific Carbohydrate Diet (SCD) with some success as it removes the commonly troublesome foods and focuses on good wholesome foods that encourage healing. It is gluten and dairy-free by its nature (although it does permit a little dairy at a later stage when the gut is well into the healing process).

If it is something you might be interested to look at there is a thread on this section that you are welcome to come and 'pick our brains' on, and the official website is 'breaking the vicious cycle'.

When like us you are already on a very limited diet because of food intolerance anyway, and the Medical Profession has been unable to come up with any answers, there is little to lose by trying and the possibility, as we have experienced, of much to gain!

I have been following it for the last 10 months and although I still have a way to go, I can now tolerate a lot more foods than I could 10 months ago!

It is possible that you might find a dietitian who is 'clued up' about food intolerance (although I have never come across one personally!) but I have seen that some nutritionists and practitioners are actually recommending the SCD to some of their patients as they have seen good results too.

More on the SCD diet can be found here:

https://www.celiac.com/gluten-free/index.php?showtopic=54285

[Lisa]

The gluten free diet can be very complicated,as you may be finding and cross contamination is a very real factor. If gluten is your problem, I would suggest you keep a food diary so you can potentially identify any issue.

If you need some help in menu planning, shopping or nutritional balance, there are a lot of experienced people here. We have many people here with multiple food intolerances. You're in good company.

[harp1]

I have a brilliant nutritionist in Atlanta. I've worked with her for 6 years and she pulled me out of what we thought was parkinsons disease. She works with people all over the world by phone. In addition to my wonderful success, I have sent people to her with very complicated/contradictory symptoms (they were also very sick). She helped them. Email me for more info

ottzen@mindspring.com

To Our Health, Susan

[hermitgirl]

To be honest with you I am now on my second nutritionist. The first "dietician" had never worked with or had a clue about Celiac. She literally looked the information up on the internet while I was sitting there. The second one I am having my doubts about, as she keeps sending me for all these other tests, many of which insurance doesn't cover. That, and she isn't being honest when she sends me to these dr's. There is one in the area that is supposed to be really good, but I can't afford to go to her, as she is literally twice as much as others in the area, and an hour away.

[coldnight]

So I guess it depends on the dietician or nutritionist, whatever they are called. I never have good luck with doctors so it might be a waste of time. The SCD diet sounds interesting, I will look into it for some ideas.

It's pretty easy for me to keep a food diary, I only eat dinner. And that is basically the same meal (some sort of steak meat and rice), I can tell you all the deviations from it in the last 3 weeks. I definitely have some sort of problem with gluten, but other things bother me as well.

As I understand it, if it is merely a gluten intolerance, then that would not cause damage, so for instance, gluten might make me sick for a day or two, but other things shouldn't. Which is where I get confused, why such a huge range of things make me sick. Like dairy, I can drink a cup of lactose sugar and not get sick (had a lactose intolerance test a while ago), but dairy makes me horribly sick, even in fairly small amounts. Powdered whey in hot chocolate for instance. Bell peppers seem to make me sick, one of the deviations I tried a few weeks ago, perhaps because they are nightshades, but still, how many food intolerances can a person have before there must be some underlying cause. Given the results of the gene test, and the negative blood work and biopsy I had some years back, celiac disease seems unlikely. I don't have a ton of faith in the biopsy or the blood work because I was already not eating things that made me sick to a lesser degree than I do now, but no celiac genes makes it much less likely, I think. Seem to have a problem with corn and corn starch too. So when you add it all together, it's pretty hard to find things that aren't going to make me sick. I've had some pretty drastic improvement, but I'm not sure it will last.

I will look at the SCD and see if it compares well to what I am doing now. Thanks again for the help.