Question About Gluten Sensitivity

[ethansmom]

Some of you have mentioned having gluten sensitivity in addition to POTS, and I have good reason to suspect I may have it as well. I have had gastric/bowel problems since I was a little girl, and at age 16 found out I have allergies to milk, eggs, wheat, and peanuts. Even though I avoid these foods for the most part, I continued to have problems which have gotten worse the last few months since I've been on a "pasta" binge (I love pasta!!). I plan on talking with my doctor more about this at my next visit, and hopefully being tested, but I was looking for some advice on what types of foods to eat for the time being.

Despite being on Florinef, I have lost 15 lbs in the past month because I've stopped eating things that I feel are making my symptoms worse (gluten & sugar containing foods). My stomach feels much better, but I have trouble finding anything to eat, and the more weight I lose the more symptomatic I become with the low BP and increased HR. Any good recipes or ideas for foods that I can eat? Any good websites with info? I am really struggling with this . . . I am also a nursing mom, so nutrition is pretty important. I don't have much time to cook, with the baby and going to school and working part time from home, on top of not feling well, so I hope to find some easy-to-make meals that are POTS friendly = )

[geneva]

I can relate to the problem of trying to figure out what to eat. I have been tracking my food intake for 3 weeks as I think I am showing signs of dairy intolerance. I have also had problems when I was eating pasta all the time. Before I was diagnosed 3 years ago with POTS, I was a vegetarian and lived on pasta dishes (and fish). After POTS I tried to continue eating pasta and EVERY time I did, I became symptomatic within minutes. My doctor said to eat protein at every meal (first)and with pasta only very small portions. That made a big difference! Now, without cheese, I don't really want pasta. It IS frustrating to figure out a good, healthy, POTS-friendly diet but I keep trying.

I added chicken and turkey back in my menu (can't handled red meat though) as well as lots of soups high in protein and all types of frozen vegetables which are easy to prepare. I'm am on Florinef also. Often I have to work to keep weight at the level my doctor wants to see me at but what works for me won't for you....pbj sandwiches everyday!

[Michelle Sawicki]

Hi Jessica,

Do you have any health food stores by you? I go to one that is about an hour away and they have all kinds of food specifically for people who don't eat sugar, gluten, dairy, etc.

I don't eat sweets and they have all kinds of good food for people like me. I also live in a farming community so I can buy my meats, eggs & butter from a local ranch that doesn't use hormones or antibiotics in their animals. I try to eat things without a bunch of additives and preservatives, though I am not completely strict about this. That really has nothing to do with POTS...I just think it is healthier.

Michelle

[MightyMouse]

For years I thought I was allergic to wheat...but it turns out that it was the gluten, not the wheat, that was making my belly so grumpy.

Gluten is found in any items derived from wheat, barley or rye. I have found that there are several places where I can get really tasty pasta. Email me if you want a list of the goodies, b/c I've tried many brands over the past several years and can tell you what tastes most like the real deal. Same goes for bread and cookies.

Also, don't assume that products are gluten free even when they say so on the label...can't tell you how many times I've inadvertantly cheated. Soy sauce has barley malt...beer is a no-no...corn flakes have barley malt, as do most rice cereals other than oatmeal. Granola is usually off limits b/c of wheat germ or barley items. One of my biggest surpise no-no's was Twizlers...they're made of wheat starch. Also, most vegetarian items contain meat substitutes which are derived from gluten--if you see the term "textured vegetable protein" that's a synonym for gluten (fake chicken, hot dogs, burgers, etc.) and will probably give you more gluten than any other single item. I found out each one of these tidbits the hard way.

Nina

[Guest nancy]

I've been reading this train of thought with interest. I've found it to be my experience that every time I try to be real strict with my diet, like no sugar, no fat, or no sugar, no gluten, I lose weight, and get weaker and weaker. In other words, I end up hurting myself. I cannot keep the weight on. I know this is not true of everybody, because, supposedly, people did not use sugar in their foods much prior to the 1600's (I think I read that somewhere).

I've asked health food doctors about keeping the weight on, and all they would say is eat more fats like nut butters. That never did it for me. I suppose if I really had to restrict my diet, I'd have no choice but to lose more and more weight and look really sick. I don't know. Instead, I try to be moderate and compromise. But, of course, I seem to always have bowel problems.

Nancy

[justin]

two of my roomates have moderate to severe gluten sensitivity. i do as well, but to a lesser extent. if i have a gluten heavy meal such as veggie dogs/burgers or say, chinese vegetarian food (all of which contain large to insane amounts of gluten) i can have a bad reaction. but just eating food with normal amounts of gluten in it, like a couple of slices of bread or maybe some whole grain cereal...i can handle.

i may have mentioned this before, but acidophilus is good for helping folks with a mild sensitivity to certain foods deal better...unless of course your gluten sensitivity is actually celiac disease, in which case it would be useless.

you can also take enzymes, which are even better. some people lack or are deficient in certain enzymes which are used to break down specific types of food. this can be tied to food allergies. you can also get enzymes in food itself as long as it is raw or only slightly cooked.

my doctor is a naturopathic MD, both my mother and i have been going to him for 10 years...my mom got a lot out of the enzymes that he prescribed for her...you might want to give it a shot.

i've found a good way to avoid gluten, yet still eat enough carbs without subsisting entirely on rice pasta, is to have more starchy root-vegetables. nancy, this could also help with keeping the weight up.

i've been struggling with that myself for my whole life, but especially for the past 2 years. i'm a 6' 5" guy who's always been about 175 pounds or so. when i got really ill this past winter, i went down to the high 140's, at that point i was about 60 pounds underweight. i've managed to gain back to 165 or so, and stayed there a couple of months. about mid summer i started losing it again, and i'm hovering at about 160 i think.

green vegetables are useless for gaining weight. protein should work, but sometimes it doesn't. i was on an amino-acid protein supplement, and

i tried eating nut butters, too, which was both high protein and high fat. did nothing for me. carbs are the key, cause your body can also convert them to fat, and frequently does if you are eating more carbs than are needed for the basic energy requirements of your cells.

so, yeah, starchy carbs. root veggies. bring on the squash, potato and whatnot. that's what i would suggest.

sorry for rambling....

justin

[Guest nancy]

Name some starchy root vegetables? I would be amazed if they could ever translate into weight gain for me (which I don't need now since I'm eating mucho carbs), but I'm interested in what veggies you're talking about.

Nancy.

[justin]

cassava, sweet potato, yam, turnip, squash, potato.

there are others, but these are the ones you're most likely to find at the supermarket. if you have an open air market near you like i do, you may get some cousins to cassava and yam too.

these are all starchy veggies, have them with some margarine or sauce of some kind, or if you want some recipes for the above, check out vegweb.com

justin

[ethansmom]

I just wanted to thank everyone for the information. I realized after reading these posts that the reason I have been feeling so low and weak lately is likely from not getting enough to eat and all this weight loss- so I am going to try some of the mentioned foods to see if I can put on a little weight and hopefuly gain some strength. I am leaving for a weekend trip this afternoon to visit family and I don't know how I'm going to make it through until Monday . . . I'm just thankful I've got someone to help with the baby- sometimes I wonder how I do it on my own.

[MightyMouse]

I figured I'd post this just in case:

The best pasta is brown rice based Tinkanyada. I get mine at a chain of markets called Zagara's--which is the same as Genaurdi's. I've also found it at my health food store, and Fresh Fields Markets.

The best mac & cheese is by Pastariso... It's my favorite comfort food--the kind with the orange powder they also have white cheddar. I like both. I usually get the "mini shells" version.

Bread: food for life's brown rice based breads. They make a good one that is brown rice and pecan, and a pecan raisin. Toast the bread for the most realistic flavor.

Glutano makes the best cookies...well, not exactly the BEST...b/c the absolute best are fresh made sugar cookies from a gluten free bakery in Philly called "Mr Ritts". Yum. They'll ship stuff to you frozen too. If you're a chocolate nut, order the succhertorte--it's amazing. My relatives love it for dessert--didn't even know it was "special" cake. Mr Ritts also makes a great personal pizza dough (precooked, like Boboli), just rub down with olive oil, crisp it a bit in the oven, then put on the works.

Hidden ingredients can be found on this website:

http://celiac.automated-shops.com/cgi-bin/...-19103249959.eb

(the above is the link to the site index--find the link to the "safe and forbidden foods" list)

Nina