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A New Weight Loss Support/accountability Thread


lonewolf

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ang1e0251 Contributor

I started a food dairy but I am not sure how I am going to excersise. I have a bad back and am considered disabled. I have some ideas, so am going to work on it.

After my DH's second back surgery, they had him walking in the pool untill he was strong enough for other workouts. That might work for you. I know some places even have ankle weights for the pool to help you stay upright. It helped him a lot.


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ang1e0251 Contributor
I'm new to this thread, but I have been gluten-free for almost a year now. I have lost 38 pounds (of 150 needed to lose) while eating high-fat foods and not bothering to count calories or measure portions. I had the great good fortune to run across a couple of books and Internet articles which reinforced the "Atkins" - type results. I think that gluten-free is actually a less restrictive low-carb diet.

What these books and articles stated (which has, amazingly enough, been confirmed by medical research, but you'll NEVER see that anywhere......) is that as long as we eat lots of fat, we won't overeat. We need to get away from worrying about calories and portions! Believe me, before I found out that gluten-free worked for me (I tested negative for celiac disease, but realized that I have DH, and my genetic test came back positive for the celiac disease Gene just this week), I had tried just about every diet out there!

One of my daughters has been so impressed with my results that she took it upon herself to start eating gluten-free whenever she is away from home (she's 16), because she wanted to lose weight! She has been THRILLED with the results, and she feels a lot better, too. Now if I could only convince the 17- and 22-year-old to get on board (the house is gluten-free, but I have no control over the outside world).....

Incidentally, if you eat more fat, you will find that your muscle mass increases naturally and you lose more weight. I told my husband when I started on gluten-free that I was going to "conduct a scientific experiment". Since I could only have one "variable" in order to validate my theory, I made sure that the ONLY change that I made was to eliminate gluten from my diet. I still drink Cokes, and I don't exercise. Honestly, I'm doing it for science! (At least, that's what I tell him....) So far, so good!

Teresa Koch

Fort Worth, Texas

Can you tell us more specifically your eating plan?

Rebecca's mom Rookie

Hmmmm, let's see. My eating plan. Well, here it is:

DON'T EAT GLUTEN

Seriously, that's it. I haven't counted calories, I haven't done portions, I eat fat ALL day and love it, I haven't deprived myself of eating anything that I want!

I have found that since I started gluten-free, I get fuller faster, and my stomach is telling my brain (or vice versa) that it has sufficient nutrition to get the job of dispersing nutrients throughout my body. In folks with celiac disease, their intestinal lining is compromised, and the surface area available to digest food is significantly decreased. From what I understand about people with Gluten Sensitivity, the gliadin molecule "mimics" the Zonulin molecule (the molecule which keeps the intestinal wall tight and impermeable), and when it "gloms onto" the intestinal wall, it makes the wall less tight and more permeable, so nutrients leach out of the digestive system. In both cases, the body doesn't operate at peak capacity.

I honestly don't know what to tell you as far as an eating plan, other than to say eat whatever you want (as long as it doesn't have ANY gluten in it!), whenever you want. I promise you won't overeat, and you will lose weight. The weight loss will be slow, but it will be steady OVER TIME. The real "measure" of your weight loss will be not so much "the number" (although that will come down), but much more the shape that you will start to see. I look like I have lost MUCH more than 38 pounds, mostly because my belly started shrinking almost immediately. Don't get me wrong, there is still a lot of stuff there, but it has decreased significantly, and it keeps getting smaller and smaller every day, whether I lose pounds or not. My fat is slowly converting into muscle, and that burns calories more efficiently! Did I mention that I haven't exercised since I started this "experiment"? I"m driving all of my skinny friends crazy - they're going to the gym, sweating their socks off, and I am sitting at home on the couch, popping bon-bons (gluten-free, of course!)...... Well, maybe not quite that - I have kids still at home, and the dishes don't wash themselves - but you get the picture. I can actually FEEL my abdominal muscles now!

I hope this helps, even though I haven't spelled out any specifics. Sorry I don't have more to give you, but honestly, the ONLY thing that I have done is to eliminate gluten COMPLETELY from my diet. It really has been that simple - and it is driving everyone around me bonkers, because they just can't believe that it truly can be that simple (which is the OTHER reason that I am not exercising or cutting out sugar - otherwise, no one would believe that gluten was solely responsible for the weight loss). We will see what they have to say in 3-4 years when I have lost (I am sure) more weight.....

Sincerely,

Teresa Koch

Fort Worth, Texas

nasalady Contributor
Hmmmm, let's see. My eating plan. Well, here it is:

DON'T EAT GLUTEN

Seriously, that's it. I haven't counted calories, I haven't done portions, I eat fat ALL day and love it, I haven't deprived myself of eating anything that I want!

I have found that since I started gluten-free, I get fuller faster, and my stomach is telling my brain (or vice versa) that it has sufficient nutrition to get the job of dispersing nutrients throughout my body. In folks with celiac disease, their intestinal lining is compromised, and the surface area available to digest food is significantly decreased. From what I understand about people with Gluten Sensitivity, the gliadin molecule "mimics" the Zonulin molecule (the molecule which keeps the intestinal wall tight and impermeable), and when it "gloms onto" the intestinal wall, it makes the wall less tight and more permeable, so nutrients leach out of the digestive system. In both cases, the body doesn't operate at peak capacity.

I honestly don't know what to tell you as far as an eating plan, other than to say eat whatever you want (as long as it doesn't have ANY gluten in it!), whenever you want. I promise you won't overeat, and you will lose weight. The weight loss will be slow, but it will be steady OVER TIME. The real "measure" of your weight loss will be not so much "the number" (although that will come down), but much more the shape that you will start to see. I look like I have lost MUCH more than 38 pounds, mostly because my belly started shrinking almost immediately. Don't get me wrong, there is still a lot of stuff there, but it has decreased significantly, and it keeps getting smaller and smaller every day, whether I lose pounds or not. My fat is slowly converting into muscle, and that burns calories more efficiently! Did I mention that I haven't exercised since I started this "experiment"? I"m driving all of my skinny friends crazy - they're going to the gym, sweating their socks off, and I am sitting at home on the couch, popping bon-bons (gluten-free, of course!)...... Well, maybe not quite that - I have kids still at home, and the dishes don't wash themselves - but you get the picture. I can actually FEEL my abdominal muscles now!

I hope this helps, even though I haven't spelled out any specifics. Sorry I don't have more to give you, but honestly, the ONLY thing that I have done is to eliminate gluten COMPLETELY from my diet. It really has been that simple - and it is driving everyone around me bonkers, because they just can't believe that it truly can be that simple (which is the OTHER reason that I am not exercising or cutting out sugar - otherwise, no one would believe that gluten was solely responsible for the weight loss). We will see what they have to say in 3-4 years when I have lost (I am sure) more weight.....

Hi all....I'd like to join this group. What are the "rules"? Do we need to post every day?

Wow, Teresa, that's great! I'm glad that's working for you! :)

Unfortunately, although I've been doing exactly what you're doing since November, I've actually gained about 15 pounds since going gluten free! :(

I've tried cutting down on portions, skipping meals, to the point where my three year old actually eats more than I do and he only weighs 38 pounds! I'm still gaining, although more slowly now.

But I'm on prednisone and A LOT of other medications which are definitely contributing to the weight gain.

I think I will have to go strictly low carb to have any chance of losing any weight at all. So I can't have gluten free bread, crackers, cookies, rice, potatoes, etc., etc. But I will be eating lots of protein, fresh non-starchy veggies, and some fruits (berries mainly).

I need to lose at least 150 pounds at this point....I've gained 60 since starting prednisone. :(

JoAnn

nasalady Contributor
Hi all....I'd like to join this group. What are the "rules"? Do we need to post every day?

Wow, Teresa, that's great! I'm glad that's working for you! :)

Unfortunately, although I've been doing exactly what you're doing since November, I've actually gained about 15 pounds since going gluten free! :(

I've tried cutting down on portions, skipping meals, to the point where my three year old actually eats more than I do and he only weighs 38 pounds! I'm still gaining, although more slowly now.

But I'm on prednisone and A LOT of other medications which are definitely contributing to the weight gain.

I think I will have to go strictly low carb to have any chance of losing any weight at all. So I can't have gluten free bread, crackers, cookies, rice, potatoes, etc., etc. But I will be eating lots of protein, fresh non-starchy veggies, and some fruits (berries mainly).

I need to lose at least 150 pounds at this point....I've gained 60 since starting prednisone. :(

JoAnn

P.S. I'm currently in a wheelchair, with severe fibro and RA, so I don't know how I can exercise. I'll try isometrics or something?

Lady Donna Newbie
P.S. I'm currently in a wheelchair, with severe fibro and RA, so I don't know how I can exercise. I'll try isometrics or something?

Honey, predisone causes you to gain weight, no matter WHAT you eat or don't eat!! are you going off of it at some point? When my daughter-in-law went off of it, she lost quite a bit.

Remember you have to eat to lose weight.....yes I know it sounds funny but you should be eating more than your 3 year old!! Try to count your calories, 1000-1200 a day along with your isometric exercises. Just hang in there. You have the right idea, proteins, berries, etc. YOU CAN DO IT!!!

Rebecca's mom Rookie

Another thing to remember is that you have to eat lots of fat to lose lots of fat! If you don't believe me, there is plenty of scientific research out there which proves that point - and NONE that backs up the current fat/heart disease/cholesterol myths......

Go to www.junkfoodscience.blogspot.com for more information - there is lots of interesting stuff on there -

I agree, the prednisone will make you put on weight, but after being gluten-free for awhile you may find that you no longer need it - I don't know for sure, as I haven't had any serious issues with RA or fibromyalgia, etc.

Hope you find something that works for you!

Teresa K.


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ang1e0251 Contributor

The reason I asked about your diet was that you mentioned eating in way that was like Adkins. I've been reading the book and I'm interested in this. Just eating gluten-free hasn't been enough for me. I did lose slowly in the beginning but just a couple of pounds and I'm rebounding.

I agree with about the fats but I know I have too much sugar. Adkins sounds like a good way to break that habit. I was willing to hear about what you are doing, though. It might be even simpler.

nasalady Contributor
Honey, predisone causes you to gain weight, no matter WHAT you eat or don't eat!! are you going off of it at some point? When my daughter-in-law went off of it, she lost quite a bit.

Remember you have to eat to lose weight.....yes I know it sounds funny but you should be eating more than your 3 year old!! Try to count your calories, 1000-1200 a day along with your isometric exercises. Just hang in there. You have the right idea, proteins, berries, etc. YOU CAN DO IT!!!

Thanks for the encouragement, Lady Donna! I don't know if I'll ever be off prednisone. I have autoimmune hepatitis so I'm on Imuran and prednisone to suppress my immune system. My hepatologist has been tapering the prednisone down, very slowly, but he says I'll probably be on it for at least another 9 months to a year. He doesn't know yet if I can ever stop it completely.

nasalady Contributor
Another thing to remember is that you have to eat lots of fat to lose lots of fat! If you don't believe me, there is plenty of scientific research out there which proves that point - and NONE that backs up the current fat/heart disease/cholesterol myths......

Go to www.junkfoodscience.blogspot.com for more information - there is lots of interesting stuff on there -

I agree, the prednisone will make you put on weight, but after being gluten-free for awhile you may find that you no longer need it - I don't know for sure, as I haven't had any serious issues with RA or fibromyalgia, etc.

Hope you find something that works for you!

Teresa K.

Thanks!

I know all about the "eating fat" thing....I'm an old hand at the Atkins diet and Atkins always said that the fastest way to lose was to increase the fat content of your diet. BUT, for me that only works if the carbohydrate content of my diet is close to ZERO.

I do hope that my autoimmune conditions go into remission after a while. I did a poll some time ago of people with fibromyalgia who were now gluten free, and about 30% of those who responded said that they no longer had fibro symptoms, but it took a long time (around two years).

ang1e0251 Contributor

I do hope that my autoimmune conditions go into remission after a while. I did a poll some time ago of people with fibromyalgia who were now gluten free, and about 30% of those who responded said that they no longer had fibro symptoms, but it took a long time (around two years).[/quote

I'm reading a very interesting book called "The Miracle of Magnesium" by Carolyn Dean, M.D., N.D. She has a section on fibro that may pertain to you. I checked mine out from my local library. I'm going to change my magnesium intake the way it talks about for several conditions that are bugging me. Having read part of it, I'm sure my levels are out of whack.

Rebecca's mom Rookie

The reason I asked about your diet was that you mentioned eating in way that was like Adkins. I've been reading the book and I'm interested in this. Just eating gluten-free hasn't been enough for me. I did lose slowly in the beginning but just a couple of pounds and I'm rebounding.

Don't worry about "rebounding" - I have done that over and over. It's normal - what is happening is that you are losing fat weight, but then your body is converting part of its mass over to muscle. Since muscle weighs more than fat, it APPEARS as if you are gaining weight, but over time you will find that you burn calories much more efficiently, and you will continue on a downward trend in your weight.

Probably the BEST thing that I read when I was just starting out was a book by an endocrinologist called "The Schwarzbein Principle" - I was actually more intrigued by her explanation of how the endocrine system works (why fat is so important), rather than her "plan" for eating. What she said that is SO IMPORTANT was "Don't focus on the number on the scale; focus on the shape that your body is taking".

That has been so true for me, and I am starting to notice it in the rest of the family as well. I have quite the musculature built up around my waist now! I actually have an hourglass figure underneath all of this fat! And as I said before, I am NOT exercising - I am trying to prove a theory to myself and my doubting friends - so there is definitely something to the consumption of fats being good for your body.

Also, I didn't mean to "knock" the Atkins diet - there is no doubt that when you cut out all carbs you will lose weight very quickly. I just noticed when I looked at the differences between gluten-free and Atkins that the ONLY carbs that had to be eliminated in a gluten-free diet were the ones that contained gluten.

Again, I am doing "personal research" here, so I have continued to eat all of the gluten-free carbs that I want to. I have been pleasantly surprised at the fact that while it is SLOWER than Atkins, I am still losing weight, and best of all I don't feel deprived in the least. I know that some (non-Celiac) people "give up" on Atkins after a while because they "miss" the carbs - unfortunately, the first carbs that they reach for are usually wheat-based......

Hey, I say whatever works for you, go for it!

ang1e0251 Contributor

Thanks for the advice. I started Atkins yesterday and it is very difficult to give up my sugar. I know I have way too much. I'm going to ask my library for the book you mentioned. You have me fascinated. I would like to eat my carbs and improve my shape at the same time!

Rebecca's mom Rookie

I will warn you that Schwarzbein isn't a huge fan of sugar, but she doesn't have a problem with an occasional treat. As I said, I am "conducting a scientific experiment" just to see what happens. I know that if I eliminate gluten AND stop drinking Cokes (the biggest source of sugar in my diet) AND start exercising and end up losing weight, no one will believe that gluten has ANY part in causing weight loss. The ONLY change that I have made the past 11 months is the elimination of gluten - that way, no one can dispute the effect that one change has made on my weight (and my waistline)!

Honestly, it's not that I don't WANT to stop drinking Cokes and/or start exercising - I'm making this sacrifice for science........

That's my story and I'm sticking to it!

Iamhealthy Newbie
I will warn you that Schwarzbein isn't a huge fan of sugar, but she doesn't have a problem with an occasional treat. As I said, I am "conducting a scientific experiment" just to see what happens. I know that if I eliminate gluten AND stop drinking Cokes (the biggest source of sugar in my diet) AND start exercising and end up losing weight, no one will believe that gluten has ANY part in causing weight loss. The ONLY change that I have made the past 11 months is the elimination of gluten - that way, no one can dispute the effect that one change has made on my weight (and my waistline)!

Honestly, it's not that I don't WANT to stop drinking Cokes and/or start exercising - I'm making this sacrifice for science........

That's my story and I'm sticking to it!

I also lost weight when I went gluten free about six weeks ago. I lost around 12 to 14 pounds. But I've slowed way down...one day I'll have lost 2 pounds and then two days later gained 2 pounds, back and fourth. So I'm glad to hear that you are still losing, but slowly. Slowly is ok with me. I did the Adkins diet a long time ago, before I found out that I had gluten issues, and lost a lot of weight, but as soon as you eat something with carbs...you start eating everything insight and can't stop eating!!! I gained all the weight back + more. I think, like you, I'll stick to gluten free.

My question to you is....I find by being gluten free I'm eating the same stuff over and over and I'm getting sick of it. I'm ok with meals (most of the time, except when I don't feel like cooking), but what do you eat for snacks? Or to grab a quick meal, what do you grab? I'm sick of plan Kettle chips, fruit and cheese......I hate most veggies (I'm working on this).

Thank you for any help.

Rebecca's mom Rookie

I tell you what, those 1st couple of months are hard food-wise! I was so afraid that I was going to screw up, that I didn't have much variety. Trust me, as time goes on, you will find more and more things that you can eat! I finally realized that if I used a gluten-free Flour Mix (try Bob's Red Mill All Purpose) in the place of "regular" flour for things like breading, etc., I could usually make the same recipes that I used to. The only thing that won't work with is baked goods, but there are LOTS of great cookbooks and online recipes that you can find.

Best of all, you can eat POTATOES!!!!! There are lots of really good, fat-laden dishes out there that all of the skinny minnies think they can't have - HA-HA........... Don't worry about calories or fat or portions - eat all of the "bad" stuff, and watch the pounds disappear.

It's been a long day, so I'm not coming up with a lot to say - sorry! You may want to check with your local Gluten Intolerance Group (GIG) to see if they have a Restaurant Guide - that thing has gotten us through on the days when we don't feel like cooking!

Best of luck,

Teresa K.

ang1e0251 Contributor

I use a lot of corn tortillas so many of my snacks are tied into those and chips. I make dip with a whole brick of cream cheese and a can of diced tomatoes with green chilis. M-m-m-m... Quesadillos made in the skillet with butter and cheese. You can throw in meat if you're in the mood. No flour peanut butter cookies. Death by Chocolate cake. Popcorn, nuts and chocolate.

I don't do a lot of restaurant food but the local Mexican will make me nachos and the other reataurant makes me a giant cheeseburger and fries, no bun.

songstressc Apprentice

I too would like to lose weight - I am a lifetime member of weight watchers and love their plan the hard time is we are moreorless gluten free vegans; Mostly dairy free except for a little manchego sheep cheese. After reading "The China Study" by Colin Campbell (s) (father and son) we keep any animal protein to 10% of our diet. Back to the diet - It is difficult right now to stay strict for health reasons but I am definitely wanting to keep from gaining even if losing is difficult right now. Yes I am in! Any gluten free mostly vegans out there too? What concept of the weight loss thread to support? Do we choose a day to check in or just leave it open or?

Rebecca's mom Rookie
I use a lot of corn tortillas so many of my snacks are tied into those and chips. I make dip with a whole brick of cream cheese and a can of diced tomatoes with green chilis. M-m-m-m... Quesadillos made in the skillet with butter and cheese. You can throw in meat if you're in the mood. No flour peanut butter cookies. Death by Chocolate cake. Popcorn, nuts and chocolate.

I don't do a lot of restaurant food but the local Mexican will make me nachos and the other reataurant makes me a giant cheeseburger and fries, no bun.

Can I come play at your house?

ang1e0251 Contributor

You can but it won't be as much fun right now. I started Atkins last week so most of those snacks are out for awhile. I did have my dip spread on lunchmeat. I made a lemon curd from their recipes. I'm adjusting to stevia as my only sweetener. I can see a big change in my blood sugar which has been a problem. I have another week to go on the first phase of the diet then can add in a little more food.

The good news is I lost 5 pounds this first week!! Yea!!

K-Dawg Explorer

Hey there:

I"m interested in participating with this thread, but I first wanted to ask just a basic question. Does anyone have any suggestion as to how I can increase my protein w/o eating meat. I am a vegetarian and prior to my diagnosis (which was very recent) I ate a lot of texturized vegetable protein (which is a no no) and faux meat products with gluten. I do eat dairy and eggs...but beyond that I"m at a loss.

I'm feeling a bit overwhelmed -- not sure how to eat ... I seem to be doing this carb fest every day and I want to joint this thread for some support as I try to reduce my carb intake (but being so new to celiac, I"m not sure what to eat besides carbs).

About me & my goal -- I"m a young professional. I"m used to eating on the go (usually a quick cheese sandwich from a deli and we all know that can't happen anymore!). I'm steadily gaining weight since my diagnosis so my primary goal is to stop the rapid weight gain I"m experiencing. Then I'd like to eventually lose 8 pounds (so long as I don't gain any more - lol)

TODAY:

Breakfast -

Home made shake with strawberries, blueberries, bananas, milk, grape juice

1 hard boiled egg

20 ounces of coffee

Mid-morning snack -

Corn bread

Lunch-

Glutino mini pizza

Mid day snack

Rice crackers with gluten-free peanut butter

1/2 cup cream cheese (2%)

2 sticks of celery with gluten-free peanut better

Supper-

1.5 plates of rice pasta with mixed sauteed vegetables.

evening snack -

bowl of flax / corn cereal with 1% milk and a handful of gluten-free cheesies

ang1e0251 Contributor

I don't know anything about vegetarian eating but I'm on Atkin's and their cookbooks have quite a few of the recipes.

GottaSki Mentor
My question to you is....I find by being gluten free I'm eating the same stuff over and over and I'm getting sick of it. I'm ok with meals (most of the time, except when I don't feel like cooking), but what do you eat for snacks? Or to grab a quick meal, what do you grab? I'm sick of plan Kettle chips, fruit and cheese......I hate most veggies (I'm working on this).

Thank you for any help.

I am finding that I am hungry all the time since going gluten-free 3 weeks ago...I eat a lot of vegies and lean meat with my meals...so we've been looking for lots of snack items that won't pack on the pounds for non-meal snacks.

Trader Joes has a lot of rice crackers that actually taste great, costco carries rice crackers that are more affordable...they come in multiple packs with 2 flavors...cheese and seasame (I try to have some sort of dip or spread for these as they aren't as tasty alone).

Another favorite lately is corn tortilla chips with guac. This seems to fill me the best of the snack items I've tried. If I don't have time to make guacamole I just slice avocados to eat with the chips.

I've always been a fan of nuts so these help as long as you don't have an allergy to them :) I keep a jar of peanuts and raisins on my desk at work which surprisingly gets hit up by my coworkers as much as the 'ol candy jar did!

Rice cakes work with peanut or almond butter, but I don't like these on a daily basis.

As always - read all the labels on snack foods, but I have been pleasantly surprised at how much I can eat.

celiac-mommy Collaborator

I haven't checked in in a while. I've been sticking with the Abs diet stuff, was at a standstill for a while, but I've also been ignoring myself a bit and focusing all of my energy into the kids and husband. I don't think I was working out enough (for me) and my mood was suffering because of it too. 2 weeks ago a friend shoved the Twilight series in my hand and told me I MUST read it, start NOW!! I pulled out the exercise bike and rode 20 miles while reading every night and instead of turning on the tv when I had some free time, I was reading and not mindlessly munching, I'm down 5# now!! I'm really excited-but now I'm done with the books :unsure::( what am I going to do now??!! I think I'm more disappointed that the series is done than I'm excited about the weight loss :P The one thing I've noticed is when I'm hungry in between meals, I grab a handful of raw almonds and an orange and it totally curbs my appitite, I'm rarely hungry anymore, which is good-or I'm actually waiting until I'm noticably hungry to eat-which is probably more likely!

songstressc Apprentice
Dutifully checking in. Last week was not good, involving several meals out with friends (and many drinks), lots of potato chips, and not much exercise. When I went for my walk yesterday I realized I was pretty tired and was still a mile and a half from home, so I don't think I did myself any favors by slacking last week.

Have completed this weeks shopping and no tater chips made it into my cart. There was that box of Pamela's double chocolate chunk cookies, but those are already out of the picture. :ph34r:

Vowing to return to healthy habits.

I am not giving up - it has been difficult as I have been pretty much immobile almost 2 weeks and it is hard to turn away Trader Joe's Gluten free cookies with a cup of tea. I think it will be much better when i can get out for walks etc. Hooray for turning away those chips! If I am really in the mood for taters I make baked fries great and completely guilt free AND if you slice them real thin they taste like tater chips.

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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