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What If I Ignore It?


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#16 meatslayer

 
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Posted 18 January 2011 - 06:47 PM

Thanks so much for your story. It does make it soo much harder for me to want to do what I am supposed to without a constant nagging of stomach pain & discomfort to remind me to not do that. I am already picky about food so I know it will be a loooong slow road to getting this new diet down pat.


Why a long slow road? It's your choice but here is a list: (Research and or get help don't eat these things be healthy!) http://www.celiac.co...ents/Page1.html


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.
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#17 psawyer

 
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Posted 18 January 2011 - 07:36 PM

Jen, I sent you a reply in our conversation.
  • 0
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#18 mushroom

 
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Posted 18 January 2011 - 10:08 PM

Thanks so much for your story. It does make it soo much harder for me to want to do what I am supposed to without a constant nagging of stomach pain & discomfort to remind me to not do that. I am already picky about food so I know it will be a loooong slow road to getting this new diet down pat.


But so well worth the effort :D
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#19 spinsterwitch

 
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Posted 19 January 2011 - 03:23 PM

I'm so glad you stopped in for the support. I don't post or read very often, but my co-workers were toasting bread and I needed some moral support, even though my brain knows that eating regular bread will make me nauseous within a very short time and uncomfortable in the longer term. I am really sensitive and react very quickly to gluten...that has been a huge help for me.

But despite that I resonated with your post. Changing eating habits is really hard, especially when the effects of the way you eat are not immediately evident. And even for those of us that do have the immediate effects, there is a mourning period. The best piece I read about mourning and celiac was in the Gluten Free Bible. Awesome chapter on paying attention to those feelings.

But, as everyone says, the long term consequences are frightening if you keep eating gluten. I was diagnosed rather quickly (within 2 years of onset of symptoms), and I saw the effects of eliminating gluten within a month. But I now can remember one of my great-aunts who sort of withered away. The tale was that she just laid down and waited to die. But my family now tells me she wasn't supposed to eat wheat, and I think she'd had a lifetime of asymptomatic celiac disease. That is not the future I want to see myself in.

Keep coming back and looking for cooking resources. Modifying recipes in cookbooks can be really fun, and I'm learning how to be really positively assertive when I plan to eat out. As for snacks...when I get glutened, I get bouts of hypoglycemia. I'm not diabetic, though. Having roasted peanuts (if you can eat them), or trailmix (making it yourself is fun), is always helpful during those times.

Peace!
  • 0

#20 spinsterwitch

 
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Posted 19 January 2011 - 03:27 PM

P.S. Always plan for longer in grocery shopping and bring a small magnifying glass (I have one I got for free that's actually plastic). Manufacturers are required to list wheat, but you are right that they don't list the other things and it is always good to read the label.
  • 0

#21 cap6

 
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Posted 19 January 2011 - 06:03 PM

I so agree with spinsterwitch. The mourning section in The Gluten Free Bible made me cry buckets and helped so much with the loss of old favorite foods.
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#22 GFinDC

 
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Posted 19 January 2011 - 09:47 PM

Thanks so much for your story. It does make it soo much harder for me to want to do what I am supposed to without a constant nagging of stomach pain & discomfort to remind me to not do that. I am already picky about food so I know it will be a loooong slow road to getting this new diet down pat.


You can concentrate on meat and veggies instead of carbs and have a good gluten-free diet. Meat proteins are slow to digest and provide long lasting energy for your body vs carbs. Think of the Mediterannean diet or the paleo diet as guides. A lot of people with celiac follow the SCD (specific carbohydrate) diet or a version of it.

But basically keep away from processed foods in boxes etc and make your own foods from whole ingredients. Remove or limit the grains. You can learn and get used to it just like you learn anything else. A whole foods diet also gets you away from preservatives and food colorings etc.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#23 Booseebean

 
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Posted 20 January 2011 - 11:42 AM

You can concentrate on meat and veggies instead of carbs and have a good gluten-free diet. Meat proteins are slow to digest and provide long lasting energy for your body vs carbs. Think of the Mediterannean diet or the paleo diet as guides. A lot of people with celiac follow the SCD (specific carbohydrate) diet or a version of it.

But basically keep away from processed foods in boxes etc and make your own foods from whole ingredients. Remove or limit the grains. You can learn and get used to it just like you learn anything else. A whole foods diet also gets you away from preservatives and food colorings etc.



I have major issues with quick drops in my sugar levels & am also working on raising money for a diabetic service dog for help with my lows so I am always needing to keep my sugar as stable as possible & need to be able to get it up quickly & keep it up. Does that make sense?
  • 0
Jen

#24 SGWhiskers

 
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Posted 20 January 2011 - 02:18 PM

I remember the early days after diagnosis and the emotions that went with the diagnosis. I'll admit it isn't easy at first and I did the same thing you did and tried to bargain with myself and my diet. Visiting this website and reseaching journal articles educated me and gave me the resiliance to be strict about the diet. It was a slow journey for me and I consider myself still to be healing, but it has been so worth it to have my health back. When people tell me that my diet must be so hard, I tell them it is easier than being sick and I really do mean it.

As far as the expense of a gluten-free diet:
1) With some creativity, you can manage a very healthy diet that is still low cost and high in taste. Check out the recipe forum on this website.
2) I spend about 50% of what I used to spend at the doctor's and pharmacists because I'm healthier now.
3) I'm able to work again and not have constant sick days from migraines, constant colds, and overwhelming fatigue.
4) I never ate out before going gluten-free, but lots of people save money by getting rid of that restaraunt/takeout expense.

Between returning to work full time and saving on medical expenses I've more than offset the expenses of my optional indulgences in gluten-free cakes and cookies. I've also been able to accomplish a handful of life goals that celiac had stolen from me.

Best wishes on your transition to gluten-free and keep checking in for support.
  • 0

#25 ravenwoodglass

 
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Posted 20 January 2011 - 02:40 PM

I have major issues with quick drops in my sugar levels & am also working on raising money for a diabetic service dog for help with my lows so I am always needing to keep my sugar as stable as possible & need to be able to get it up quickly & keep it up. Does that make sense?


Have you tried some fruit or a piece of candy followed by a protein like a nut butter? Gluten foods aren't the only way to raise you levels quickly. Also once you heal a bit on the diet that in itself may help with the BS regulation. Has your doctor referred you to a diabetes educator? They can sometimes be helpful. Also if you are on a med talk to your doctor about your difficulty with control, you may need a different med or an adjustment in your dosage.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#26 elye

 
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Posted 20 January 2011 - 04:16 PM

Jen, just curious.. . .. . ...are you on a pump?
  • 0
Emily

diagnosed type one diabetic 1973
diagnosed celiac winter 2005
diagnosed hypothyroid spring 2006

But healthy and happy! Posted Image


11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.
--Pierre Joseph Proudhon (1809-1865)

#27 GFinDC

 
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Posted 20 January 2011 - 05:23 PM

Hi Jen,

Yes, that makes sense. From what I read, hypoglycemia is often caused by diabetes medications. There are several members here with diabetes who can probably give you better advice then I can. Do you eat some protein when you get symptoms too? Just seems like that would help, but I am no expert.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#28 ravenwoodglass

 
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Posted 21 January 2011 - 04:01 AM

I have major issues with quick drops in my sugar levels & am also working on raising money for a diabetic service dog for help with my lows so I am always needing to keep my sugar as stable as possible & need to be able to get it up quickly & keep it up. Does that make sense?


You should read this post. This persons experience is not unusual. Following the diet doesn't make BS issues worse, it often helps them.

http://www.celiac.co...uten-free-diet/
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#29 Booseebean

 
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Posted 24 January 2011 - 09:30 AM

Jen, just curious.. . .. . ...are you on a pump?


Yes I am on an insulin pump. I actually just upgraded my pump the first of this year to the newest version of the one I was on.
  • 0
Jen

#30 Booseebean

 
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Posted 24 January 2011 - 09:33 AM

You should read this post. This persons experience is not unusual. Following the diet doesn't make BS issues worse, it often helps them.

http://www.celiac.co...uten-free-diet/


I read the post but she is a type 2 diabetic which means with proper diet & usually exercise type 2 diabetics can live with out the need for insulin. But I am insulin dependant, my body makes no insulin & will remain on it for the rest of my life.
  • 0
Jen




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