Symptoms questions about being glutened

[Bookgirl32]

Have been gluten free for a month tomorrow, but also all grain, dairy, legumes and sugar free as well. I didn't have pronounced symptoms before. What I've been noticing this past month is the bloating. After eating anything. I know I'm not getting constantly glutened because we went gluten free in the house and have limited eating out to once or twice a week (all restaurants with good celiac reputations, and really basic items at that). I saw a dietician yesterday and she said it was too early to consider things like fructose intolerance or SIBO (and she also said with SIBO I would probably have more severe symptoms?). She tried to talk me into going back to some gentle non-gluten grains because her thought was my intestines are too damaged to handle all the whole foods. She said give it a few more weeks - months and see how things play out. The only other symptom I've had twice, one of which was today, was a bit of constipation followed by strong cramping for a short period of time (half hour or so) and then a loose BM, not diarrhea though. I just started taking a digestive enzyme in the past 24 hours, could that have caused that? Things I've been eating that I didn't used to: cassava flour and RX bars. 

[Ennis-TX]

I also follow a paleo diet with almost keto in nature but a bit higher in protein....I have Ulcerative Colitis in addition to celiac that flare to carbs/sugars with gas, distention, bleeding etc. I can say moderate to large amounts of cassava flour will bloat/trigger mine, same with tapioca starch.

I found the key to avoiding the bloat was to avoid all starchy veggies, sugars, starches, etc. following as mentioned the almost keto diet. I find fibers from nut butters, seed butters, cocoa nibs, avocados to not cause the issues. What enzymes are you taking?

[Bookgirl32]

8 hours ago, Ennis_TX said:

I also follow a paleo diet with almost keto in nature but a bit higher in protein....I have Ulcerative Colitis in addition to celiac that flare to carbs/sugars with gas, distention, bleeding etc. I can say moderate to large amounts of cassava flour will bloat/trigger mine, same with tapioca starch.

I found the key to avoiding the bloat was to avoid all starchy veggies, sugars, starches, etc. following as mentioned the almost keto diet. I find fibers from nut butters, seed butters, cocoa nibs, avocados to not cause the issues. What enzymes are you taking?

I'm confused at this point. I think because I've looked up SIBO and what to eat on that diet, I've got Paleo in my head, and low Fodmap/fructose. I feel like I can eat boiled chicken LOL. What should I do first? Tackle cutting out fructose foods and see how I feel? I guess she did tell me to wait, bc she said I could still be bloating from gluten withdrawal and healing, plus eating more veggies. I'm just impatient. Not to be less bloated necessarily, just to know what's going on. I'll stick to the paleo, go heavy on the meat and eggs, keep up the green veggies, go low on the apples and watermelon? And see what happens. She did say to eat a lot of potatoes, told me it's a good way to fill up and not irritate my gut. So I've been having a serving or so of those a day. What if it's fructose intolerance and I cut out the starches and it doesn't help? Should I do these things one at a time? 
 

[Ennis-TX]

3 minutes ago, Bookgirl32 said:

I'm confused at this point. I think because I've looked up SIBO and what to eat on that diet, I've got Paleo in my head, and low Fodmap/fructose. I feel like I can eat boiled chicken LOL. What should I do first? Tackle cutting out fructose foods and see how I feel? I guess she did tell me to wait, bc she said I could still be bloating from gluten withdrawal and healing, plus eating more veggies. I'm just impatient. Not to be less bloated necessarily, just to know what's going on. I'll stick to the paleo, go heavy on the meat and eggs, keep up the green veggies, go low on the apples and watermelon? And see what happens. She did say to eat a lot of potatoes, told me it's a good way to fill up and not irritate my gut. So I've been having a serving or so of those a day. What if it's fructose intolerance and I cut out the starches and it doesn't help? Should I do these things one at a time? 
 

Keep a food diary, remove say all starches, potatoes, fruit, etc, and go to a keto diet of meat, leafy greens, nuts, seeds, avocados, eggs, for a week. Then try to reintroduce with say sweet potatoes (easier then white potatoes with lower glycemic index) for a day remove and and record changes. Repeat with other things like a apple, bowl or rice, etc. trying for a day then removing and see if the carbs, starches, or what ever is causing your issues. The low carb diet of keto will remove the carbs/sibo from the equation and give you a baseline. Look up stuff like ketogenicgirl for meal ideas, I serve up stuff like grilled burgers without buns, bacon & Eggs, grass fed beef, steaks, sausage, avocado and eggs, grilled/baked salmon, sauteed kale and sausage, and use lettuce wraps with everything to keep up vitamins.to people that follow the low carb diets for chef work
Open Original Shared Link

[Bookgirl32]

24 minutes ago, Ennis_TX said:

Keep a food diary, remove say all starches, potatoes, fruit, etc, and go to a keto diet of meat, leafy greens, nuts, seeds, avocados, eggs, for a week. Then try to reintroduce with say sweet potatoes (easier then white potatoes with lower glycemic index) for a day remove and and record changes. Repeat with other things like a apple, bowl or rice, etc. trying for a day then removing and see if the carbs, starches, or what ever is causing your issues. The low carb diet of keto will remove the carbs/sibo from the equation and give you a baseline. Look up stuff like ketogenicgirl for meal ideas, I serve up stuff like grilled burgers without buns, bacon & Eggs, grass fed beef, steaks, sausage, avocado and eggs, grilled/baked salmon, sauteed kale and sausage, and use lettuce wraps with everything to keep up vitamins.to people that follow the low carb diets for chef work
Open Original Shared Link

Do you just eat more meat than a normal diet? If I just eat the amount of meat I'm used to eating it would only be about 800-900 calories a day. Or does that tend to be enough? 

[Ennis-TX]

3 hours ago, Bookgirl32 said:

Do you just eat more meat than a normal diet? If I just eat the amount of meat I'm used to eating it would only be about 800-900 calories a day. Or does that tend to be enough? 

Most of these diets add in with added oils that you use for cooking, and always having stuff like avocado, nut butters, etc for snacks....I managed between 3000-4000 calories a day but I eat all day and body build. NOTE I tend to eat a ton of nut butters, seed butters, seed meals, avocado, egg whites and sometimes fish, and I make grain free low carb breads and baked goods for myself out of just nut flours, binder, egg whites with no starches.... I personally do not eat red meat or poultry due to pancreas enzyme issues.  You can see what some people eat like (would link my own but the site has rules on self promotion)  Open Original Shared Link
 

[Bookgirl32]

Also, I'm taking Enzymedica GlutenEase (not to "make it safe" for me to eat gluten, I've researched it and realized it doesn't work like that, I just figured there would be a pretty good chance of there being no gluten in those). I'm on the extra strength dose bc that's all they had. I'm not taking a probiotic right now bc I've read that if you do have SIBO certain probiotics can make it worse. This is all so confusing. Doing a little more research today I'm realizing that starting the digestive enzymes extra strength could have really bothered my stomach too? I ordered Klaire Labs Pro 5 probiotics but haven't received them yet. Plus my homeopathic practitioner (who just got back from a conference in Sweden and works closely with an American rheumatologist who moved there to be able to practice both kinds of treatment) wants me to start taking something called Regulat Pro. It's a cascade fermentation product that supplies your body with enzymes in a different kind of way. But I keep reading that fermented foods are not good for IBS/SIBO/Fructose issues? The website says it's a different kind of fermentation and is not the same thing as taking those. All I know is I DO NOT want to take large amounts of antibiotics, period. Which is why the whole SIBO thing is scaring me. Also we go on vacation in a month and I need help in that regard, but I'll start another thread on that. 

[cyclinglady]

You might have figured it out.  Cut out those RX bars.  They are not certified.  Not that everything needs to be certified, but as a Newbie, I would err on the side of caution.   You could be reacting (not a celiac reaction)  to nuts, coconut....whatever!  Nuts can be hard to digest when your gut is damaged.   The same applies to that flour.  Ditch it for a while.   Also, stop going out until you see progress.  You could have some additional intolerances, so eating out even in a dedicated gluten-free restaurant could be tricky.  

Wait until you see some healing.  Then experiment.  

 

[Bookgirl32]

23 minutes ago, cyclinglady said:

You might have figured it out.  Cut out those RX bars.  They are not certified.  Not that everything needs to be certified, but as a Newbie, I would err on the side of caution.   You could be reacting (not a celiac reaction)  to nuts, coconut....whatever!  Nuts can be hard to digest when your gut is damaged.   The same applies to that flour.  Ditch it for a while.   Also, stop going out until you see progress.  You could have some additional intolerances, so eating out even in a dedicated gluten-free restaurant could be tricky.  

Wait until you see some healing.  Then experiment.  

 

I can cut out the RX bars. But the eating out, we are leaving for vacation in a month, and we have days in the summer where between work and kids activities we aren't home until 9/10pm at night. Are you suggesting staying home because of the possible intolerances or because of cross contamination?  I can plan and prep for those nights, but some nights it's impossible and it's either get a salmon filet and some steamed veggies from a restaurant takeout with a good reputation for celiac, or don't eat at all. I get bad migraines from not eating, which last days, so that's not an option. I've been doing sooooooo much cooking, and my son and husband are being very understanding (they've gone gluten free -- my husband has gone paleo with me-- our house is gluten free) but I can only upend their lives so much before the emotional toll on all of us is worse than the physical toll on me trying to figure out my food intolerances. I think it's trying to find whatever balance I can while still being very strict on the gluten and not giving in on grain, dairy, and sugar for sure. 

[Ennis-TX]

8 minutes ago, Bookgirl32 said:

I can cut out the RX bars. But the eating out, we are leaving for vacation in a month, and we have days in the summer where between work and kids activities we aren't home until 9/10pm at night. Are you suggesting staying home because of the possible intolerances or because of cross contamination?  I can plan and prep for those nights, but some nights it's impossible and it's either get a salmon filet and some steamed veggies from a restaurant takeout with a good reputation for celiac, or don't eat at all. I get bad migraines from not eating, which last days, so that's not an option. I've been doing sooooooo much cooking, and my son and husband are being very understanding (they've gone gluten free -- my husband has gone paleo with me-- our house is gluten free) but I can only upend their lives so much before the emotional toll on all of us is worse than the physical toll on me trying to figure out my food intolerances. I think it's trying to find whatever balance I can while still being very strict on the gluten and not giving in on grain, dairy, and sugar for sure. 

Dairy should be cut out....with celiac damage your damaged villi will not work with the enzymes to break them down...til you heal it needs to be removed...some they can have it later....or like me it becomes life time no.

I take Nordicware microwave cook ware when I go on vacation. You can get grill plates with splatter covers, omelette makers, steamers etc. Cook in your hotel room and get stuff from the store, and use the FindMeGlutenFree app to try to find dedicated restrauants or reserach before hand.

[PK-432]

On 6/8/2018 at 8:43 AM, Bookgirl32 said:

Have been gluten free for a month tomorrow, but also all grain, dairy, legumes and sugar free as well. I didn't have pronounced symptoms before. What I've been noticing this past month is the bloating. After eating anything. I know I'm not getting constantly glutened because we went gluten free in the house and have limited eating out to once or twice a week (all restaurants with good celiac reputations, and really basic items at that). I saw a dietician yesterday and she said it was too early to consider things like fructose intolerance or SIBO (and she also said with SIBO I would probably have more severe symptoms?). She tried to talk me into going back to some gentle non-gluten grains because her thought was my intestines are too damaged to handle all the whole foods. She said give it a few more weeks - months and see how things play out. The only other symptom I've had twice, one of which was today, was a bit of constipation followed by strong cramping for a short period of time (half hour or so) and then a loose BM, not diarrhea though. I just started taking a digestive enzyme in the past 24 hours, could that have caused that? Things I've been eating that I didn't used to: cassava flour and RX bars. 

It could be cassava flour.  Start taking grains in low amount and increase that amount gradually. Best of luck 

[apprehensiveengineer]

On 6/8/2018 at 12:45 PM, Bookgirl32 said:

I can cut out the RX bars. But the eating out, we are leaving for vacation in a month, and we have days in the summer where between work and kids activities we aren't home until 9/10pm at night. Are you suggesting staying home because of the possible intolerances or because of cross contamination?  I can plan and prep for those nights, but some nights it's impossible and it's either get a salmon filet and some steamed veggies from a restaurant takeout with a good reputation for celiac, or don't eat at all. I get bad migraines from not eating, which last days, so that's not an option. I've been doing sooooooo much cooking, and my son and husband are being very understanding (they've gone gluten free -- my husband has gone paleo with me-- our house is gluten free) but I can only upend their lives so much before the emotional toll on all of us is worse than the physical toll on me trying to figure out my food intolerances. I think it's trying to find whatever balance I can while still being very strict on the gluten and not giving in on grain, dairy, and sugar for sure. 

I travel a decent amount for competitions/conferences, and don't eat out before those (because if I get sick, the whole point of my trip is nullified!). Domestic car trips are easiest, as you can bring coolers with ice packs and don't have any security/border restrictions on what can be brought. That said, I have managed week+ trips internationally without eating out.

I bring shelf stable provisions that can be easily prepared without a kitchen, or with at most, with a microwave/kettle. I will bring a loaf of gluten-free bread, a package of minute rice, jar of peanut butter, honey, some seasoning in a ziploc baggy, canned tuna, canned beans, and pre-packaged deli meat that is labelled gluten-free. If going by plane, you can check these in your bag. I am very picky about which brands I use, so I feel more comfortable bringing these items rather than relying on local grocery stores whose availability might not be great. When I arrive, I will buy fresh produce, dairy, or other items that do not travel well (eg. chips). If you are lucky, you might have a Whole Foods/alt grocery store with good gluten-free frozen meal selections, but I don't count on this much.

If I am staying at a hotel, I ask for a microwave for my room so that I can heat up stuff, or cook my rice. If I travel with gluten eaters (my family, almost all of my friends), I will either whip up a fast meal before we go out, or I will let them do their own thing while I stay back at the hotel/airbnb to make/eat my food. It's a bit of a drag, but it is much, much better than being sick while traveling!

Once you are more stable, you can take some risks with eating out. On my most recent trip, I ended up eating out twice at restaurants that were highly praised on the findmeglutenfree app, which was very adventurous for me as neither were 100% dedicated restaurants. I spent a lot of time researching and vetting both - one had a head chef who was celiac (95% gluten-free restaurant), while the other was run by an Italian chef who demonstrated clear understanding of requirements for celiac diners on their website (separate kitchen spaces etc.). I did not get sick from either, which goes to show that it is possible to eat out safely, provided you do your homework.  

[PK-432]

On 6/10/2018 at 7:42 AM, apprehensiveengineer said:

I travel a decent amount for competitions/conferences, and don't eat out before those (because if I get sick, the whole point of my trip is nullified!). Domestic car trips are easiest, as you can bring coolers with ice packs and don't have any security/border restrictions on what can be brought. That said, I have managed week+ trips internationally without eating out.

I bring shelf stable provisions that can be easily prepared without a kitchen, or with at most, with a microwave/kettle. I will bring a loaf of gluten-free bread, a package of minute rice, jar of peanut butter, honey, some seasoning in a ziploc baggy, canned tuna, canned beans, and pre-packaged deli meat that is labelled gluten-free. If going by plane, you can check these in your bag. I am very picky about which brands I use, so I feel more comfortable bringing these items rather than relying on local grocery stores whose availability might not be great. When I arrive, I will buy fresh produce, dairy, or other items that do not travel well (eg. chips). If you are lucky, you might have a Whole Foods/alt grocery store with good gluten-free frozen meal selections, but I don't count on this much.

If I am staying at a hotel, I ask for a microwave for my room so that I can heat up stuff, or cook my rice. If I travel with gluten eaters (my family, almost all of my friends), I will either whip up a fast meal before we go out, or I will let them do their own thing while I stay back at the hotel/airbnb to make/eat my food. It's a bit of a drag, but it is much, much better than being sick while traveling!

Once you are more stable, you can take some risks with eating out. On my most recent trip, I ended up eating out twice at restaurants that were highly praised on the findmeglutenfree app, which was very adventurous for me as neither were 100% dedicated restaurants. I spent a lot of time researching and vetting both - one had a head chef who was celiac (95% gluten-free restaurant), while the other was run by an Italian chef who demonstrated clear understanding of requirements for celiac diners on their website (separate kitchen spaces etc.). I did not get sick from either, which goes to show that it is possible to eat out safely, provided you do your homework.  

I appreciate and encourage you that efforts  which,you take to keep yourself healthy and well. I also did same when I was on gluten free diet for one year; 06 months each time. You can also buy gluten free bars of green Valley which are really helpful for immediate snack and travelling.  They have various flavors. You can also buy microwave Popcorn which, are gluten free.  They also have various flavors. 

[Maverita]

I had a hard time tracking down my problems as well.  A few things that are considered gluten free that were causing me the same grief as gluten were white (likely wheat based) vinegar, alcohol (also likely wheat based), and xanthum gum (who knows?).   Also, beware of natural flavors, as that can hide grain-based alcohol, which is allegedly gluten-free but rips my gut up.  

[Whitepaw]

It seems that there's a lot of possibilities.   It can be overwhelming to sort through them.   My two cents is to scale your eating back to only those foods that you KNOW you tolerate.   For me, it was salmon, tuna, olive oil based mayo, cooked carrots, cooked green beans, and rice.  Stick with whatever your tolerated foods are for 1-2 weeks, so that your gut can settle down.   Keep the foods simple.    

Since you mention some FODMAPs that bother you, you may want to look at low-FODMAP lists to get ideas.    Kate Scarlata has some nice lists, including a shopping list with brand names. 

I recently took a trip, and cooked / froze some of my most tolerated foods along so that I would be sure to have safe things to eat.  

Also, beware of corn.   Many people don't tolerate it. 

Keep in mind that we are all different.   As it turns out, dairy and corn were my worst offenders, combined with larger amounts of select FODMAPs.   Each of us will give you ideas based on our experiences, but only you will know what's working and not for you. 

Personally, I'd steer clear of enzymes and probiotics at this point, and just focus on your most tolerated foods.    Adding too many things to the mix only complicates things, whether it's foods or supplements.  

[M. Martha]

I didn’t have strong digestive symptoms to gluten either. My symptoms were primarily neurological and Hashimoto’s thyroiditis. I was able to lower those antibodies by cutting out gluten and treating SIBO. I had a mild case of SIBO - took the lactulose breath test to diagnose and treated with xifaxan. Now what to eat? I’ve tried to make gluten free bread with a number of different flours which did give me digestive symptoms. Tapioca starch which is the same as cassava flour was one of those. Also arrowroot starch really made me sick. I can tolerate almond and coconut flour but not eating much baked stuff. It’s been a  process of figuring out what will work. Terry Wahl’s book has been helpful for me, also the specific carbohydrate diet and Isabella Wentz. Be blessed.