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What If I Ignore It?


Booseebean

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Booseebean Newbie

What would happen if I just continue to eat the way I do? Or if I dont totally remove gluten from my diet? Feeling like more & more of my life is now being majorly restricted is enough to make me crack. Is there a step process that I can follow? My doctor said to just evaluate what I eat & leave it out or make substitutions but are there any steps to get into this new lifestyle? Help...

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ravenwoodglass Mentor

Well if you ignore your diagnosis you could end up with a signature like mine or worse. Ignoring it increases your chances of developing cancer and could rob you of your brain. I was a long time to diagnosis and could barely walk or talk by the time I was diagnosed to say nothing of the daily agony of the constant D.

The gluten free lifestyle does take some getting used to. If you start with whole unprocessed foods it is easier. Even if your not an accomplished cook many things are really easy to make like chili and stews and soups. It is not hard to throw a piece of chicken in the oven along with a baked potato or a steak or burger on the stove with a salad or some veggies.

I do know how hard it is at first but in the long run you and your loved ones will be happy you stuck to it. Since this disease can also effect our mental health ignoring risks you a awful lot. We are here to help in any way we can.

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Booseebean Newbie

Wouldnt there be a sensitivity factor that would vary person to person? So if I can eat a little bit with no discomfort or pain wouldnt it be ok to consume just a little? I am a single mother so I cant afford to eat completely gluten free & being diabetic there will be times when I may have to consume gluten to correct a severe low blood sugar.

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meatslayer Newbie

If you enjoy being sick and getting sicker sure just keep eating gluten.

Really it's not that hard to eliminate from your diet? Why stress out about it, do it and you'll feel better. If you really don't know much about food, diet, ingredients of food, what contains gluten or not and your totally lost, contact a nutritionist or dietician or some one along those lines familiar with Celiac. If you don't want to do that, keep reading as much as you can and inform yourself calm down and do it. Every thing you need for a better gluten free lifestyle is a search away....

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Booseebean Newbie

If you enjoy being sick and getting sicker sure just keep eating gluten.

Really it's not that hard to eliminate from your diet? Why stress out about it, do it and you'll feel better. If you really don't know much about food, diet, ingredients of food, what contains gluten or not and your totally lost, contact a nutritionist or dietician or some one along those lines familiar with Celiac. If you don't want to do that, keep reading as much as you can and inform yourself calm down and do it. Every thing you need for a better gluten free lifestyle is a search away....

Did seeing a dietician work for you? Being diabetic was easy cause carbs are required to be listed on all food labels but gluten is not listed. So did talking to the dietician really help you get a good idea of what is good & what is bad?

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meatslayer Newbie

Wouldnt there be a sensitivity factor that would vary person to person? So if I can eat a little bit with no discomfort or pain wouldnt it be ok to consume just a little? I am a single mother so I cant afford to eat completely gluten free & being diabetic there will be times when I may have to consume gluten to correct a severe low blood sugar.

Yes sensitivity varies huge from person to person. It's not the immediate effects of being glutened that are a major concern if you are not that sensitive, it's the long term negative effects on your body, it's BAD for you! It does not have to cost any more. No you do not have to consume gluten to correct low blood sugar.

Knowledge is key, read read read inform your self. Or as I stated earlier seek the advice of professionals if your over whelmed. Good Luck- it's not really that big of a deal on becoming educated on your new diet and you'll be healthier.

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kareng Grand Master

Wouldnt there be a sensitivity factor that would vary person to person? So if I can eat a little bit with no discomfort or pain wouldnt it be ok to consume just a little? I am a single mother so I cant afford to eat completely gluten free & being diabetic there will be times when I may have to consume gluten to correct a severe low blood sugar.

Eating a little gluten, even if you don't feel it, is still damaging. It's like a leaky roof on your house. Sometimes it leaks and it obviously raining on your head. Thats an obvious effect of the gluten. Sometimes, your roof leaks but the water drips down inside the walls on the wooden studs. It can go on this way for months until one day - black mold is growing on your walls & the shsower tile falls off. You now have lots of damage inside the walls that wasn't showing.

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beefree11 Newbie

Eating a little gluten, even if you don't feel it, is still damaging. It's like a leaky roof on your house. Sometimes it leaks and it obviously raining on your head. Thats an obvious effect of the gluten. Sometimes, your roof leaks but the water drips down inside the walls on the wooden studs. It can go on this way for months until one day - black mold is growing on your walls & the shsower tile falls off. You now have lots of damage inside the walls that wasn't showing.

I like this! A great way to sum it up, I feel. I recently replied to a woman who claimed that her husband and young son are celiac, but if they happen to eat "just a little" they don't have any problems with it. So she feels they have a minor case of celiac. She truly believes since they are not symptomatic, there is no reason to be careful, especially with cross contamination. She equates the absence of serious symptoms to the level, or degree, of the disease. "Since they don't get real sick with a little gluten, I don't really worry about it"

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Skylark Collaborator

Wouldnt there be a sensitivity factor that would vary person to person? So if I can eat a little bit with no discomfort or pain wouldnt it be ok to consume just a little? I am a single mother so I cant afford to eat completely gluten free & being diabetic there will be times when I may have to consume gluten to correct a severe low blood sugar.

If you are celiac, you risk other autoimmune diseases and intestinal cancer if you continue to consume gluten, no matter whether you notice it or not. If you are gluten-intolerant, the risks of consuming gluten are less well known, but it's still not a good plan.

Gluten-free does not have to be expensive. If you have money problems, make rice, beans, potatoes, and corn your staples. Add cheeses, veggies and meats as you find them on sale.

PM Peter, one of the moderators. He is type 1 diabetic and celiac and can explain how to correct a severe low blood sugar without ever consuming gluten. After all, it's sugar you need, not gluten.

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meatslayer Newbie

Did seeing a dietician work for you? Being diabetic was easy cause carbs are required to be listed on all food labels but gluten is not listed. So did talking to the dietician really help you get a good idea of what is good & what is bad?

I did not see one. I have always been very aware and knowledgable of what I eat from a health side of things. When I was diagnosed with Celiac Disease I spent a a solid month almost day and night searching and learning every thing I could from the WWW and bought a few books, and magazines. I still continuously read about it. I'll admit I was already on a rather low carb diet and eliminating gluten for me was not a very dramatic thing. My health improved almost the day I stopped eating gluten, I'm quite happy not eating things that make me feel bad. I also love to cook and I'm a total 'foody.' There is nothing I really miss form my strict Celiac Diet.

The leaky roof analogy above is a so on point. Black mould - Cancer or other nasty health issues.

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psawyer Proficient

PM Peter, one of the moderators. He is type 1 diabetic and celiac and can explain how to correct a severe low blood sugar without ever consuming gluten. After all, it's sugar you need, not gluten.

She did, and I have sent her a brief reply.

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elye Community Regular

Hi, Bean, and welcome!

I have been a type one diabetic for almost my entire life, and was diagnosed, completely out of the blue, with celiac disease five years ago. I was asymptomatic -- a "silent' celiac, if you will. So it was extremely difficult to justify the introduction of another hugely restrictive diet upon myself, on top of all the restrictions of the diabetic diet. Hey, there's no pain, no diarrhea, no migraines nor joint pain.. . . ....why DO this to myself??

Well, I started reading. A lot of my research brought me back here to c.com, a fantastic source of information and support. I realized that I had to give up ALL gluten. 'Twas difficult with no horrific symptoms to keep me away from it, but the alternative is very possible intestinal cancer and other autoimmune diseases. Once I knew this, it got easier.

Here is another vital thing: the diabetic diet and the gluten-free diet combine very, very well. We diabetics need to restrict carbs, and gluten is found in grains.. . .... ...carbohydrates. So we are already partway there. My blood sugars have been tightly controlled for many years, but my AICs have been the best in my life since going gluten-free. Eliminating this protein from your diet can tighten your blood sugars up, no question.

There is quite a learning curve at first with the gluten-free diet, but it really does become second nature. And insulin reactions don't ever have to involve gluten - - I always carry glucose tablets with me, and at home I have fruit and/or honey.

There are quite a few diabetic celiacs on this forum. You're far from alone, and we're here to help! :)

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Skylark Collaborator

She did, and I have sent her a brief reply.

Great! I'm so glad you two connected. I didn't want to say something wrong about diabetes. Fortunately I haven't needed to manage that particular health condition.

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Booseebean Newbie

Eating a little gluten, even if you don't feel it, is still damaging. It's like a leaky roof on your house. Sometimes it leaks and it obviously raining on your head. Thats an obvious effect of the gluten. Sometimes, your roof leaks but the water drips down inside the walls on the wooden studs. It can go on this way for months until one day - black mold is growing on your walls & the shsower tile falls off. You now have lots of damage inside the walls that wasn't showing.

That was one of the most helpful, honest, & easy to understand things I've heard thus far & it really helped. I wish my doctor was as gifted with words. Thank you soo much!

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Booseebean Newbie

Hi, Bean, and welcome!

I have been a type one diabetic for almost my entire life, and was diagnosed, completely out of the blue, with celiac disease five years ago. I was asymptomatic -- a "silent' celiac, if you will. So it was extremely difficult to justify the introduction of another hugely restrictive diet upon myself, on top of all the restrictions of the diabetic diet. Hey, there's no pain, no diarrhea, no migraines nor joint pain.. . . ....why DO this to myself??

Well, I started reading. A lot of my research brought me back here to c.com, a fantastic source of information and support. I realized that I had to give up ALL gluten. 'Twas difficult with no horrific symptoms to keep me away from it, but the alternative is very possible intestinal cancer and other autoimmune diseases. Once I knew this, it got easier.

Here is another vital thing: the diabetic diet and the gluten-free diet combine very, very well. We diabetics need to restrict carbs, and gluten is found in grains.. . .... ...carbohydrates. So we are already partway there. My blood sugars have been tightly controlled for many years, but my AICs have been the best in my life since going gluten-free. Eliminating this protein from your diet can tighten your blood sugars up, no question.

There is quite a learning curve at first with the gluten-free diet, but it really does become second nature. And insulin reactions don't ever have to involve gluten - - I always carry glucose tablets with me, and at home I have fruit and/or honey.

There are quite a few diabetic celiacs on this forum. You're far from alone, and we're here to help! :)

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.

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meatslayer Newbie

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!) https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/

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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psawyer Proficient

Jen, I sent you a reply in our conversation.

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mushroom Proficient

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

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spinsterwitch Rookie

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!

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spinsterwitch Rookie

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.

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cap6 Enthusiast

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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GFinDC Veteran

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.

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Booseebean Newbie

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?

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SGWhiskers Collaborator

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.

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ravenwoodglass Mentor

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.

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      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
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