Anyone worked with a dietician?

[warmwaters]

What was it like? Did you go more than once?

I'm about to give up, as I've go so many different dietary recommendations from different doctors. If I put them all together, not sure what I'd eat.

I'm supposed to be: low carb, low FODMAP. It would be good to be on an anti-inflammatory diet.  I've got a lot of dietary triggers, including eggs, most veg that have insoluble fiber (i.e the good ones), many fruit, and oily fish. 

I can't figure out what the heck I should eat.

[SjoGirl]

warmwaters, I tried working with a holistic nutritionist, she told me to avoid a large number of foods then sold me very expensive supplements to replace food. I was starving and did not like the supplements either.

I eventually did my own research and spent a lot of years doing trial and error to figure out which foods bothered me (based on advice from an allergist who said I was not allergic to anything but oysters -- go figure). i cleaned up my diet and my previously low vitamin level reading all moved to normal without supplements.

I don't eat gluten and try to keep sugar down and prefer to get it from fruit and dark chocolate. I also don't eat much in the way of dairy (as in milk), but have found that I can eat butter (yeah!).

Expeller pressed oils don't sit well with me and make my nose break out (and I'm well beyond acne age). I also have to avoid lima beans and some other legumes as well as very spicy foods (GERD).

One thing I found is that, hate it as much I do, I will have to take Nexium for the long term. I've been on 40 mg a day and have been able to eat a lot more things than I used to (including pickles, which provide a much needed boost for my constantly low sodium levels). I asked my PCP last week if I could ever get off of Nexium because I know LT use can lead to greatly increased risk of spine fracture. She's terrific and said none of her SjS patients have been able to kick Nexium.

Hope this helps.

[Nomad]

I have tried working a nutritionist off and on and just haven't had good luck. My intention was weight loss. A relative did the same (weight loss) and in retrospect, I suppose it was a little mean of us family members, but we found it humorous that she worked with her for many many months and only lost four pounds. Our main objection to the advise she was given was she was told to eat two slices of whole wheat bread daily. This would add up to fourteen slices of bread per week. I have worked in the weight loss industry and I can tell you not only from my own experience, but from working there that women over forty for whatever reason do not do well with a lot of bread. I should add, after family insisted she not eat that much bread and she reduced it, she began to lose weight. Prior to this, she wasn't losing any weight at all.

On top of that (above) on a different note, I strongly suspect, women wit autoimmune issues don't do well with gluten...bread, pasta...flour.

So, I too have been reading and watching my body re: weight, how I feel (bloating etc.) and blood tests.

What has become obvious to me is that I don't do well  re weight or medically with the following: bread, pasta...gluten, dairy products, processed foods, sugar, soda (diet or regular). I am now looking at other things as well and am exploring not just the paleo diet, but the auto immune paleo diet. It's a work in progress.

As a side note: giving up gluten was a miracle for me. I went from 300 mgs. of Zantac daily to 75 mgs. AS NEEDED....It is a huge difference.

[warmwaters]

Nomad - it's always amazing how we're all so different. I've done 2 stints of gluten free for 6 months each with little difference in how I'm feeling. It's great that it's worked well for you. And if I use gluten free substitutes (i.e gluten free bread), many of them have a lot of empty calories.

I feel like I just can't figure out how to eat well and avoid all the various things I'm supposed to be avoiding. And since I have a hard time doing any cooking or shopping, I really find a way to have a plan that can work.

[kmhcpt]

If you have a gluten intolerance or is causes inflammation just going gluten free may not work.   Corn can also be an issue.   A lot of gluten free grains have cross reactionary properties.    The best bet is to try the AIP diet.    It eliminates all inflammatory grains and dairy.   There are other things as well to avoid.  It is hard but worth a try.  I did it before I started plaquenil and it helped a lot.       Once you have been on it for some time you can add things back in and see how they affect you.