Gluten and autonomic problems

Sallysblooms

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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.
 

Mithriel

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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.

Mithriel
 
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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.

Anne.
 
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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.
 

Sallysblooms

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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.
 

IntuneJune

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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.

June
 

Mithriel

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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

Mithriel
 
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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!
Hilde
 
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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.
 

Sallysblooms

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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.
 

dannybex

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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...

d.
 

floydguy

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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!
 

Sallysblooms

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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.
 

SOC

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Other ideas for GF snacks:

<snip>

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.
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.
 

IntuneJune

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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.

June

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.
 

Sallysblooms

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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.
 

IntuneJune

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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
Bran
Bread Flour
Brewer's Yeast
Brown Flour
Bulgur (Bulgar Wheat/Nuts)
Bulgur Wheat
Cereal Binding
Chilton
Club Wheat (Triticum aestivum subspecies compactum)
Common Wheat (Triticum aestivum)
Cookie Crumbs
Cookie Dough
Cookie Dough Pieces
Couscous
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
Farina Graham
Farro
Filler
Flour (normally this is wheat)
Fu (dried wheat gluten)
Germ
Graham Flour
Granary Flour
Groats (barley, wheat)
Hard Wheat
Heeng
Hing
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)
Malt
Malted Barley Flour
Malted Milk
Malt Extract
Malt Syrup
Malt Flavoring
Malt Vinegar
Macha Wheat (Triticum aestivum)
Matza
Matzah
Matzo
Matzo Semolina
Meringue
Meripro 711
Mir
Nishasta
Oriental Wheat (Triticum turanicum)
Orzo Pasta
Pasta
Pearl Barley
Persian Wheat (Triticum carthlicum)
Perungayam
Poulard Wheat (Triticum turgidum)
Polish Wheat (Triticum polonicum)
Rice Malt (if barley or Koji are used)
Roux
Rusk
Rye
Seitan
Semolina
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
Tabbouleh
Tabouli
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
Coloring4
Dextrins1,7
Dextrimaltose1,7
Dry Roasted Nuts4
Emulsifiers4
enzymes4
Fat Replacer4
Flavoring6
Food Starch1, 4
Food Starch Modified1, 4
Glucose Syrup4
Gravy Cubes4
Ground Spices4
HPP4
HVP4
Hydrolyzed Plant Protein4
Hydrolyzed Protein4
Hydrolyzed Vegetable Protein4
Hydrogenated Starch Hydrolysate4
Hydroxypropylated Starch4
Maltose4
Miso4
Mixed Tocopherols4
Modified Food Starch1, 4
Modified Starch1, 4
Natural Flavoring6
Natural Flavors6
Natural Juices4
Non-dairy Creamer4
Pregelatinized Starch4
Protein Hydrolysates4
Seafood Analogs4
Seasonings4
Sirimi4
Smoke Flavoring4
Soba Noodles4
Soy Sauce4
Soy Sauce Solids4
Sphingolipids4
Stabilizers4
Starch1, 4
Stock Cubes4
Suet4
Tocopherols4
Vegetable Broth4
Vegetable Gum4
Vegetable Protein4
Vegetable Starch4
Vitamins4
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.

June
 

IntuneJune

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GF

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.