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Gluten and autonomic problems

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Sallysblooms, Jul 28, 2010.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    I have been reading a lot about Gluten and problems it can cause. I have never heard of neuropathies like dysautonomia and peripheral neuropathy possibly being because of gluten.

    My doctor said I can just stop foods with Gluten for 30 days. Then start again and see. I can be tested if I want.

    It is SO HARD. I am going to do it. Most foods have it, sauces, makeups, so many foods. I am sure it will get easier. Need to get my hubby to get a list of foods I made.

    I am trying to leave no stone unturned with my recovery.

    I am wondering if any one knows more about this subject.
  2. Mithriel

    Mithriel Senior Member

    It is very difficult to keep to a gluten free diet. My kids are coeliac and it is a nightmare for them.

    The national coeliac societies might have a list of foods which are certified gluten free. Some things are obvious, but it is the small things. Mustard and soy sauce often have wheat mixed in and then these are used as flavourings. As coeliac disease is being more recognised things are changing a bit.

    Chips have a wheat coating to make them crispy.

    I am not sure where you are, but Sainsbury does a lot of gluten free food and so does Tesco, probably others in the UK.

    Rice is fine, polenta, though corn bread often has wheat as well. Salads, vegetables, meat are OK so if you can get home cooked food it is much easier.

    Breakfast cereals are a problem. Oats have no gluten but most fields are contaminated with wheat plants so they are not classed as gluten free. They sell GF muesli and Rice Krispies are fine.

    You can make sauces using cornflour or rice flour and there are some good gluten free flours on the market.

    My kids have a problem working and going out. (My son has lunch meetings with sandwiches!!!!!)

    Good luck.

  3. anne_likes_red

    anne_likes_red Senior Member

    Sally, I've been gluten free for a long time and find in my case there was further improvement going grain free (so no rice etc).
    My advice is to just think about the 30 days - If you start thinking about all the possible future situations that might be difficult to manage you might feel defeated before you start.

    I cook everything from scratch (ie make my own sauces etc) and if you have the opportunity to prepare some things in advance it can make those first few days easier. You may initially feel worse - kind of a withdrawal, my experience is that by 5 days you *may* have an inkling you're benefiting.

  4. Karin


    I have been GF for three years. I find it easier to do if you cook everything from scratch and keep it very simple (e.g. one meat, one vegetable and rice or potatoes, for example). Make sure to have enough GF snack available so you don't cheat with something bad, e.g. bananas, fresh fruits, dried fruits, nuts, Lay's potato chips. 30 days is feasible, in any case you won't starve.

    I would recommend planning it and then going for it cold-turkey, to really see the effect. I agree that by day 5 you sould know. In my personal experience, first three days I did not notice anything. Day four was horrible, back pain, anger, outburst, really weird. Really looking like a drug withdrawal reaction. The next day it was already over and then it went better and better and after 30 days I had no intention of ever coming back.

    I must say that I did both gluten-free and dairy-free at the same time.
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    WOW, lots of wonderful advice! I was wondering if you all think the blood test is accurate? I am going to call my doctor tomorrow.

    I appreciate all of the help. I LOVE knowing easy things I can eat. Meat, potatoes, veggie fruit. I really need FAST snacks too. Like the advice about friut and Lays potato chips, ha. Sometimes it is just good to have a salty snack! So Lay's is OK?

    I would LOVE to cook from scratch but I have P.O.T.S.! I can't cook right now. This is one more thing for my hubby to do. Shop and cook gluten FREE for me. He is an angel. So I also need super fast things to grab and eat. I can't always do much in the kitchen on bad days.

    I have no idea if there is a problem, but I just thought I woud find out.

    I have been learning about it on the web. It is too bad the gluten is put in so many foods. Makes it very hard.

    Rice is OK? We like to eat at asian places, Indian food too. With my CFS and POTS, we go out to eat for fun and this will be VERY hard. We can't do a lot of things we used to. Eating out is fun.

    Any ideas for eating out?

    Any advice is appreciated.
  6. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA
    Eating out gluten free

    I don't know where you are located. I belong to a GF group in my state, they maintain a website that gives information about gluten free restaurants, the leader of the group puts effort into getting feed back from the members about the restaurants that have the GF menues.

    However, we must be vigilent. I went to a restaurant (in another state while visiting my son) which had a GF menue. I chose what I wanted and asked, "my fish will be cooked in a separate pan" The waiter replied, "Oh no, this fish is seared it goes on the grilll."

    I spent quite some time with the waiter telling him the restaurant could not claim they were serving GF food, when there was contamination from the grill. It was unpleasant.

    If you google gluten free restaurants and give a location, you will probably find a list. But you must be viglilent while there.

    GF lists are available on line also.

  7. Mithriel

    Mithriel Senior Member

    For a snack, I get a frying pan and dry fry sesame seeds, pumpkin seeds and sunflower seeds. Then you just add a few drops of GF soy sauce and keep it in a tub in the fridge. Lovely and healthy too! I add it to soups salads and mashed potatoes as well as a snack.

    Most plain crisps are GF, Pringles too and some tortilla chips. In the UK, labelling has become much better.

    Forgot, in the UK so maybe the US as well some farms do packs of gluten free sausages, things like that. They are delivered vacuum packed and can be very useful. They will advertise in Coeliac society things.

    The blood test will show if you have coeliac disease, though that is confirmed by a biopsy. I don't know if it will show up an intolerance. The test and the biopsy only work if you are eating gluten

  8. hildevdh


    I have coeliacie...
    in the beginning it was very hard and difficult...
    but I'm used to it now...
    I find out that there are many things you can eat,
    by replacing some ingredients by glutenfree ones...

    don't give up!
  9. Karin


    Other ideas for GF snacks:

    - Bake a whole chicken (does not require a lot of standing, takes just 2 minutes to prepare): place the whole chicken in an oven dish, salt it and put in the oven at 380F for 2 hours. That's it. Keep in the fridge for quick snacks of cold meat for a few days (with GF mayo or ketchup).

    - Boil a dozen eggs: cover in water, bring to a boil, turn the heat off, put the lid on and time 10 minutes then empty the water. The eggs will be perfectly hard-boiled and make easy snacks.

    - Buy pre-washed and cut fresh veggies (so you don't have to do that), dump them in a large pot, add an inch of water, and steam for 20 minutes. After it's cooked, add salt and virgin olive oil, that's it. Not much standing to do that, and if you do a lot at a time, you'' have enough for a few days.

    - Same thing, buy veggies, and also add one cup of rice and two cups of water in the pot, as well as salt and some oil. Let cook with the lid always on for about 45 minutes. You'll get a mix of rice and vegetables that will last you for a few days.

    All the above do not require much standing, only short times, and you can make a lot at a time to have enough for a few days. Then when you are hungry you can either eat it cold, or put some in a plate and in the microwave for 2 minutes to heat it, very fast. I usually cook once every other day.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Thank you so much. I really appreciate the helpful ideas. I am going to use them all I think! Karin, I do need to eat hard boiled eggs. I keep fogetting. I do eat chicken, my hubby keeps peices in a bag ready for me. He always has things for me to grab for lunch while he is at work.

    Mithriel, thank you for your help also! I WISH I could eat the seeds you talked about. I had a bad attack of Diverticulitus, infection of part of the colon/intestine. It was awful. Now I am not supposed to eat seeds or nuts. I DO eat walnuts because I can chew it up and they are softer. I have Scottish ancestory. I do a lot of reading about it. I love the music too. I have lots of CDs. Love your screen name.

    HUM... so the blood test wouldn't show an intolerance, just a celiac problem? I guess the diet is the best thing to do then?

    InTuneJune, I did Google for my area and I got some good restaurant ideas! Thank you! I agree, I will have to be careful at restaurants and also shopping for food. Sounds so hard.

    Hildevdh and Annelikesred, thank you for the support!

    I hope I can find bread and crackers that taste good. When I don't feel good (like yesterday-NAUSEA) I can only drink Gingerale, Coke and eat crackers.

    OK, here is a silly quiestion. Are Flax seeds OK. They are so good for you. Also, I guess I read that Steel Oats are the safest Oats? And, Corn is bad? I LOVE CORN.
  11. dannybex

    dannybex Senior Member

    Bob's Red Mill brand sells oats that are labeled as Gluten-free -- they're made at a facility where there is no wheat or other gluten grains processed.

    Flax seeds have no gluten, but may be processed at a facility that also processes gluten foods. So might be good to read the label.

    Also, if you don't have celiac, there are enzyme products that help digest gluten and have allowed some folks to eat gluten grains again: one is called Peptizyde, the other is Glutenease. A google search will turn up more info...

  12. floydguy

    floydguy Senior Member

    Here's a study that looks at gluten from a neurological perspective

    Attached Files:

  13. floydguy

    floydguy Senior Member

    By the way, I encourage people to try going gluten free regardless of what the tests show. As this study, indicates one doesn't have to be celiac for gluten to cause problems. It is really hard though!
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Thank you for that link, Floydguy. Does it include autonomic neuropathy? I would think so. I have seen it when I read online. Why would you think it is good for most people to be gluten free? Because it has so many possible problems? I just had no idea the scope it can have on health. Today is my first day Gluten Free. Smoothie for bfast withOUT my wheat bran. I usually add oatmeal and flax seed all ground up so I hope to get the gluten free oatmeal soon. I am so happy that flax is ok. I will look to get GF flax.

    For lunch I actually felt ok to make tuna salad with mayo, gf free, I looked! Also apple in it. Whew two meals down..... My husband cooks for me so this is just one more thing for him to do! We need to go shopping for food. I have a wedding shower and wedding to go to.

    I bet events like that are hard for you all too. You have to be so careful.

    So it is Wheat, no seeds that is gluten? Rice is ok? All rice? I have so much to learn. I hope this all pays off! ha.
  15. SOC

    SOC Senior Member

    Thanks so much for these simple suggestions, Karin! I liked to cook pre-illness and haven't been able to get my mind around minimal-energy, minimal-standing cooking. You've given me a great start.
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Are there any ideas about fast foods. Sometimes my husband wants to get something fast after work for us. I hope rice is ok.
  17. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA
    Fast food

    As stated by another poster, rice, in and of itself, is safe. Rice as fast food? You will have to do your own homeword, restaurant by restaurant.

    Is the rice store properly to eliminate cross contamination? Is it cooked properly to avoid cross contamination? Is it served with dedicated serving utensils to avoid cross contamination? Is it served with other foods with contaminated sauces. Is it placed in a container to transport where it is safe from cross contamination?

    We cannot answer these questions for you. And every restaurant is different. A national chain restaurant Olive Garden who claims "GF" brought me a salad with croutons.

    So even if we could recommend a "chain" restaurant, you or hubby needs to "get in there" with your questions.

    It's a real chore for those of us who have been confirmed to have celiac disease.

    Good luck with your investigations...... right now....we only have each other, hopefully more help is on the horizon.


    Another thought, if you are buying GF bread, you may not put your bread in the same toaster if other family members are using the toaster. Your bread must be protected ( foil) or a different toaster.
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    My husband went to the store for a super fast grab of things for dinner. He found some good crackers I love and also a breakfast bar. Both gf.

    I was wondering about rice because we love to get Asian food for take out. I did see the place we like a a GF menu.

    Corn is OK? Corn chips and tortillas. I know you can't know for sure, but as a whole, unless contaminated.
  19. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA
    Corn, GF

    Corn by itself, yes, it is GF.

    But, every time we buy a product, first, we must look at the ingredient list. Even if we have bought it before and it was safe, every time, we must read the ingredients.

    I copied a list below to hep you. The first part of the list is fairly easy.

    What is frustrating is the second part of the list which states "May or may not" ie food coloring. Many a time I have called the number on the label while standing in the isle of the supermarket. It's not easy and ingredients can change any time.

    Abyssinian Hard (Wheat triticum durum)
    Alcohol (Spirits - Specific Types)
    Amp-Isostearoyl Hydrolyzed Wheat Protein
    Atta Flour
    Barley Grass (can contain seeds)
    Barley Hordeum vulgare
    Barley Malt
    Beer (most contain barley or wheat)
    Bleached Flour
    Bread Flour
    Brewer's Yeast
    Brown Flour
    Bulgur (Bulgar Wheat/Nuts)
    Bulgur Wheat
    Cereal Binding
    Club Wheat (Triticum aestivum subspecies compactum)
    Common Wheat (Triticum aestivum)
    Cookie Crumbs
    Cookie Dough
    Cookie Dough Pieces
    Criped Rice
    Dinkle (Spelt)
    Disodium Wheatgermamido Peg-2 Sulfosuccinate
    Durum wheat (Triticum durum)
    Edible Coatings
    Edible Films
    Edible Starch
    Einkorn (Triticum monococcum)
    Emmer (Triticum dicoccon)
    Enriched Bleached Flour
    Enriched Bleached Wheat Flour
    Enriched Flour
    Farina Graham
    Flour (normally this is wheat)
    Fu (dried wheat gluten)
    Graham Flour
    Granary Flour
    Groats (barley, wheat)
    Hard Wheat
    Hordeum Vulgare Extract
    Hydrolyzed Wheat Gluten
    Hydrolyzed Wheat Protein
    Hydrolyzed Wheat Protein Pg-Propyl Silanetriol
    Hydrolyzed Wheat Starch
    Hydroxypropyltrimonium Hydrolyzed Wheat Protein
    Kamut (Pasta wheat)
    Kecap Manis (Soy Sauce)
    Ketjap Manis (Soy Sauce)
    Kluski Pasta
    Maida (Indian wheat flour)
    Malted Barley Flour
    Malted Milk
    Malt Extract
    Malt Syrup
    Malt Flavoring
    Malt Vinegar
    Macha Wheat (Triticum aestivum)
    Matzo Semolina
    Meripro 711
    Oriental Wheat (Triticum turanicum)
    Orzo Pasta
    Pearl Barley
    Persian Wheat (Triticum carthlicum)
    Poulard Wheat (Triticum turgidum)
    Polish Wheat (Triticum polonicum)
    Rice Malt (if barley or Koji are used)
    Semolina Triticum
    Shot Wheat (Triticum aestivum)
    Small Spelt
    Spirits (Specific Types)
    Spelt (Triticum spelta)
    Sprouted Wheat or Barley
    Stearyldimoniumhydroxypropyl Hydrolyzed Wheat Protein
    Strong Flour
    Suet in Packets
    Teriyaki Sauce
    Timopheevi Wheat (Triticum timopheevii)
    Triticale X triticosecale
    Triticum Vulgare (Wheat) Flour Lipids
    Triticum Vulgare (Wheat) Germ Extract
    Triticum Vulgare (Wheat) Germ Oil
    Udon (wheat noodles)
    Unbleached Flour
    Vavilovi Wheat (Triticum aestivum)
    Vital Wheat Gluten
    Wheat, Abyssinian Hard triticum durum
    Wheat amino acids
    Wheat Bran Extract
    Wheat, Bulgur
    Wheat Durum Triticum
    Wheat Germ Extract
    Wheat Germ Glycerides
    Wheat Germ Oil
    Wheat Germamidopropyldimonium Hydroxypropyl Hydrolyzed Wheat Protein
    Wheat Grass (can contain seeds)
    Wheat Nuts
    Wheat Protein
    Wheat Triticum aestivum
    Wheat Triticum Monococcum
    Wheat (Triticum Vulgare) Bran Extract
    Whole-Meal Flour
    Wild Einkorn (Triticum boeotictim)
    Wild Emmer (Triticum dicoccoides)

    The following items may or may not contain gluten depending on where and how they are made, and it is sometimes necessary to check with the manufacturer to find out:
    Artificial Color4
    Baking Powder4
    Caramel Color1, 3
    Caramel Flavoring1, 3
    Clarifying Agents4
    Dry Roasted Nuts4
    Fat Replacer4
    Food Starch1, 4
    Food Starch Modified1, 4
    Glucose Syrup4
    Gravy Cubes4
    Ground Spices4
    Hydrolyzed Plant Protein4
    Hydrolyzed Protein4
    Hydrolyzed Vegetable Protein4
    Hydrogenated Starch Hydrolysate4
    Hydroxypropylated Starch4
    Mixed Tocopherols4
    Modified Food Starch1, 4
    Modified Starch1, 4
    Natural Flavoring6
    Natural Flavors6
    Natural Juices4
    Non-dairy Creamer4
    Pregelatinized Starch4
    Protein Hydrolysates4
    Seafood Analogs4
    Smoke Flavoring4
    Soba Noodles4
    Soy Sauce4
    Soy Sauce Solids4
    Starch1, 4
    Stock Cubes4
    Vegetable Broth4
    Vegetable Gum4
    Vegetable Protein4
    Vegetable Starch4
    Wheat Starch5

    •1) If this ingredient is made in North America it is likely to be gluten-free.
    •3) The problem with caramel color is it may or may not contain gluten depending on how it is manufactured. In the USA caramel color must conform with the FDA standard of identity from 21CFR CH.1. This statute says: the color additive caramel is the dark-brown liquid or solid material resulting from the carefully controlled heat treatment of the following food-grade carbohydrates: Dextrose (corn sugar), invert sugar, lactose (milk sugar), malt syrup (usually from barley malt), molasses (from cane), starch hydrolysates and fractions thereof (can include wheat), sucrose (cane or beet). Also, acids, alkalis and salts are listed as additives which may be employed to assist the caramelization process.
    •4) Can utilize a gluten-containing grain or by-product in the manufacturing process, or as an ingredient.
    •5) Most celiac organizations in the USA and Canada do not believe that wheat starch is safe for celiacs. In Europe, however, Codex Alimentarius Quality wheat starch is considered acceptable in the celiac diet by most doctors and celiac organizations. This is a higher quality of wheat starch than is generally available in the USA or Canada.
    •6) According to 21 C.F.R. S 101,22(a)(3): [t]he terns natural flavor or natural flavoring means the essential oil, oleoresin, essence or extractive, protein hydrolysate, distillate, or any product of roasting, heating or enzymolysis, which contains the flavoring constituents derived from a spice, fruit or fruit juice, vegetable or vegetable juice, edible yeast, herb, bark, bud, root, leaf or similar plant material, meat, seafood, poultry, eggs, dairy products, or fermentation products thereof. Whose significant function in food is flavoring rather than nutritional.
    •7) Dextrin is an incompletely hydrolyzed starch. It is prepared by dry heating corn, waxy maize, waxy milo, potato, arrowroot, WHEAT, rice, tapioca, or sago starches, or by dry heating the starches after: (1) Treatment with safe and suitable alkalis, acids, or pH control agents and (2) drying the acid or alkali treated starch. (1) Therefore, unless you know the source, you must avoid dextrin.
    May 1997 Sprue-Nik News.
    (1) Federal Register (4-1-96 Edition) 21CFR Ch.1, Section 184.12277.
    (2) Federal Register (4-1-96) 21 CFR. Ch.1, Section 184.1444

    The list is from website celiac.com

    It is very hard to do a GF diet for a short period of time as it takes a period of time to learn to do a diet gluten free properly.

    How wonderful one of your favoriet places has GF. Good luck Sally; I hope it helps you.

  20. IntuneJune

    IntuneJune Senior Member

    NorthEastern USA

    Here's a case in point when shopping GF.

    Scene: The supermarket. Me, pushing the basket with a HOT coupon in my hand for a mayo I wanted to try. Now, I LOVE saving money and the coupon was a good one...hmmm cannot remember maybe a dollar.

    I find the mayo.....I turn the jar over.....I read the ingriedients.....and the label states "vinegar." My eyes now scour the whole jar to see if SOMEWHERE it states "gluten free." Nope.

    Now it MIGHT be OK, the vinegar may be a rice or apple cider vinegar, but the celiac mantra is "when is doubt, leave it out."

    I was in a hurry that day, so I did buy it FOR MY HUSBAND to use.

    When I next hadd the chance I called the manufacturer. Sure enough, it was OK. I plead with manufactures to be more specific with their labels. (Not that it does any good.)

    Sally it is easier as you get into more of a routine.....it is the first few months that are the hardest.

    But I am always learning new theories regarding the damage gluten can do for those who are sensitive.

    It helps me to follow threads like this one, ie Floydguy's link. Thanks Floydguy. Wow!

    Good luck again.

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