How Do You Know You Are gluten-free?

[SMRI]

I know, I'm still early on in the process but how do you know if you are really gluten-free or not.  I am being very careful checking labels, I am not eating out for the most part--minus a couple meals last weekend--probably 5 total restaurant meals in the past 2 months--all at places like Red Robin, 5 Guys.  House is gluten-free totally.  I'm traveling so no chance of getting random gluten from hubs, but he is gluten-free now too, or at least he is when I am around.  I'll have one good day and then 5 bad days.  I'm trying to figure out if its something else but there is no constant that seems to be causing my bathroom issues.  This is really frustrating.  The only food I have every day is coffee and non-dairy creamer--which is gluten-free--unless for whatever reason the coffee isn't--but it should be (Dunkin Donuts Original Blend--no flavorings, etc.).  For meals I generally have gluten-free cereal or an apple with peanut butter for breakfast.  Lunch is generally a salad or some chicken and veges. Dinner is usually a meat (beef or chicken), a potato sometimes and some vegetable--zucchini, beans, corn--whatever I feel like.  I've tried not having dairy for several days, doesn't seem to make a difference.  I've gone a couple weeks without eating corn in case that was the problem, no change...I'm out of ideas.

[kareng]

After 6-12 months - get your blood work re-done.  If the levels are in the "normal" range  - you have probably eliminated the gluten well.

[chocominties]

I would suspect the coffee could still be making you "go." I'm not much of a coffee drinker, but when I'm constipated it usually does the trick.

[SMRI]

After 6-12 months - get your blood work re-done.  If the levels are in the "normal" range  - you have probably eliminated the gluten well.

 

Right--I do have follow-up appointment scheduled--but, if I am doing something wrong or something else is wrong that is causing my issues, that's a long time to wait to figure it out.....I have appointments in Dec.

 

I would suspect the coffee could still be making you "go." I'm not much of a coffee drinker, but when I'm constipated it usually does the trick.

 

Yes, there is some of that but this is different and doesn't only happen when I drink coffee.  At first I thought it was Rice Chex.  It seemed to start very soon after eating those.  They are gluten-free but another friend said that she had a bad reaction to Rice Chex around the same time--not Celiac but has wheat allergies..among other things.  I haven't had Rice Chex for weeks.  Then I though dairy, went a week with no dairy, nope.  Took corn out at the same time thinking maybe it was that, nope.  Maybe it's just taking longer to heal but given that I wasn't really symptomatic before, other than D, it's just really hard to know.

[bartfull]

You're impatient. We all were. We want to feel better right now. But it usually doesn't happen that way.

 

It takes a while to heal. And giving up dairy for one week probably isn't enough. Keep a food diary. Try to stick to whole foods only.

 

And give it time.

[nvsmom]

I would re-read labels too. When I was about 6 months gluten-free I bought a bag of french fries that I thought was gluten-free (I thought I'd bought it since going gluten-free) but it had wheat starch in it.  For weeks I was slowly feeling worse and symptoms were building and I couldn't figure it out. I think I was so slow to clue in because I was just eating a couple of fries off my kids' plates once or twice a week - it was a tiny amount of gluten.

 

When I finally found it I felt pretty dumb, but it was a good lesson to read labels unless it says gluten-free on the front. Perhaps you missed something?

 

I hope you feel well soon.

[icelandgirl]

Hi SMRI...I know that it's hard and frustrating.  (hugs).  How long have you been gluten free?

 

I was diagnosed in January...8 months ago...and I still have issues, although things have improved a lot.  

 

A few things that helped me:  1. eating only whole foods, 2, not eating out at all, keeping a food and symptom diary to look for patterns.  I've been dairy, soy and coffee free for over 2 months now...and I miss coffee the most.  

 

 

I also had to look into what I was eating in detail and realized that I was eating mostly whole foods, but my almond milk wasn't a whole food.  It's got lots of stuff besides almonds in it including an additive called carrageenan which apparently causes D and bloating for some.  Once I cut that out, 8 weeks ago, I've gone from having D 8 times a month to 4.  I know I still have something to figure out in there, but it has helped a lot.  I went out to eat on Monther's Day and then not again until 2 weeks ago.  And both times at the one dedicated gluten free restaurant in our town.

 

It certainly isn't very convenient and I get tired of the stuff I'm eating, but I like that I'm feeling better than I was.  Give yourself time and patience.  Maybe try the food diary or only whole foods or something...see if that helps.

 

I hope you feel better soon.

[SMRI]

I would re-read labels too. When I was about 6 months gluten-free I bought a bag of french fries that I thought was gluten-free (I thought I'd bought it since going gluten-free) but it had wheat starch in it.  For weeks I was slowly feeling worse and symptoms were building and I couldn't figure it out. I think I was so slow to clue in because I was just eating a couple of fries off my kids' plates once or twice a week - it was a tiny amount of gluten.

 

When I finally found it I felt pretty dumb, but it was a good lesson to read labels unless it says gluten-free on the front. Perhaps you missed something?

 

I hope you feel well soon.

 

I've been very careful about labels or checking company websites if I'm not sure.  For the most part, if it's not labeled gluten-free, I don't buy it--unless it's fresh fruit or something obviously gluten-free.  I might have to try cutting out coffee---but how do you get caffeine then .  I don't drink soda.  I do track my food and mostly eat whole food.  My non-dairy coffee creamer is about the only thing that isn't "whole"..well, bread isn't either I guess.  I guess it depends on what you consider "whole" foods.  I don't do frozen dinners or anything like that.  It's mostly a meat, a potato and a vege for dinner.  Salad with homemade dressing for lunch or something similar.  Breakfast is hard for me but usually toast with peanut butter or an apple with peanut butter now.  I did "splurge" and eat some Van's gluten-free waffles with Blackberry syrup on Saturday.  

 

Hi SMRI...I know that it's hard and frustrating.  (hugs).  How long have you been gluten free?

 

I was diagnosed in January...8 months ago...and I still have issues, although things have improved a lot.  

 

A few things that helped me:  1. eating only whole foods, 2, not eating out at all, keeping a food and symptom diary to look for patterns.  I've been dairy, soy and coffee free for over 2 months now...and I miss coffee the most.  

 

 

I also had to look into what I was eating in detail and realized that I was eating mostly whole foods, but my almond milk wasn't a whole food.  It's got lots of stuff besides almonds in it including an additive called carrageenan which apparently causes D and bloating for some.  Once I cut that out, 8 weeks ago, I've gone from having D 8 times a month to 4.  I know I still have something to figure out in there, but it has helped a lot.  I went out to eat on Monther's Day and then not again until 2 weeks ago.  And both times at the one dedicated gluten free restaurant in our town.

 

It certainly isn't very convenient and I get tired of the stuff I'm eating, but I like that I'm feeling better than I was.  Give yourself time and patience.  Maybe try the food diary or only whole foods or something...see if that helps.

 

I hope you feel better soon.

.

...since July   ...the end of July-so it's only been 2 months.  I have noticed improvements, especially with brain fog, less gas and no heartburn.  I've only taken some Tums once in the past 2 months and that was after I had a very spicy sausage.  I was eating Tums a few times a week before bed before July.  I guess I didn't really notice those symptoms, other than the brain fog, which was HORRIBLE, before diagnosis.  I'm probably being paranoid but when I have a day of real poop and then 4 days of D....it's frustrating.  I can't believe I am typing about poop on a website LOL.

[icelandgirl]

I completely understand...I get scared when that happens too...I imagine the worst. It's not good.

2 months really isn't very long, although it may feel like forever when all you want to do is feel good. Give it to at least 6 months and see where you are then. Try a food and symptoms diary, maybe all whole foods. At 6 months go get all your blood work done and see how things are. Also...I've only recently been able to tolerate raw veggies. Until then I could only do really well cooked ones. Now I can do a small bit of salad, squash, zucchini or cucumber and feel good. As you are healing you could possibly have a hard time with digesting raw veggies. Just a thought.

Be good to yourself...you will continue to get better.

[nvsmom]

Icelandgirl is right, two months is not very long to be gluten-free - even though we feel like it is.  At two months gluten-free I felt worse than I did at 1 month gluten-free.  A bunch of my symptoms came roaring back in and it took me a couple of months  to get back to where I was.  I had a few more (more minor) dips in the road but I was feeling quite a bit better, and consistently better, by 18 months gluten-free.

 

I know it is awful to hear (I didn't like hearing it) but you may just need more time. 

[SMRI]

Icelandgirl is right, two months is not very long to be gluten-free - even though we feel like it is.  At two months gluten-free I felt worse than I did at 1 month gluten-free.  A bunch of my symptoms came roaring back in and it took me a couple of months  to get back to where I was.  I had a few more (more minor) dips in the road but I was feeling quite a bit better, and consistently better, by 18 months gluten-free.

 

I know it is awful to hear (I didn't like hearing it) but you may just need more time. 

 

Actually it is helpful to hear.  Today was a good day...we will see what happens tomorrow .  Knowing that it's not out of the ordinary to appear to be doing well and then have a few weeks of "what in the heck is going on" helps.

[Pollymo]

I had a similar situation and have discovered peanut butter causes me stomach troubles.  I thought it was just the cheap stuff so I moved on to a natural version and that seems to have helped (maybe it was too much sugar in the less expensive one?  Too much fat?)  It also could be that time just healed me too!  Good luck!  I feel like it is still a mystery every day and I'm 14 months into the process!!

[beth01]

I had the same problem SMRI, I felt good off the bat and then bam, back to square one. I am just a week shy of six months. I still have more bad days than good, and I am 100% gluten free both at home and out and about, I gave up trying to eat outside of my home. I only eat whole foods. It just takes our bodies a long time to get over gluten.

My big whoops was not knowing there is wheat paste in drywall and tackling a home improvement project. Has kept me sick for weeks, but there is nothing I can do until the remodel is done.

[cap6]

Often times it is not that there is gluten in the food you are eating but rather it is all of the chemicals/food additives that are in the processed foods that you eat that are causing the problems.  Someone mentioned Carrageenan which is used in many foods.  It is extracted from red seaweed by using a powerful chemical.  Sounds ok, but not when you know that it is also used as an airplane de-icer!  It's also used in cosmetics and pesticides!   So, that being said....it's safest to eat only whole natural foods./

[Needleup]

I got a gift card from my neighbor for the Red Lobster. What can I order? Or do I have to re-gift it.

[bartfull]

I just looked at their website. They claim to have "allergen free" stuff on their menu but then they say this: "Since all of our dishes are prepared-to-order at Red Lobster, our normal kitchen operations may involve shared cooking and preparation areas. Therefore, we cannot guarantee that any menu item can be completely free of allergens."

 

I would re-gift it. Besides, I have tried their food before going gluten-free, and it really wasn't very good.

[Waitingindreams]

Just a few things, really just reiterating points others have said:

 

 

- It could be the coffee, regardless of if it is gluten free or not. I can't drink coffee anymore either :'( every time I go I have to run to the bathroom. I'm not entirely sure why...I don't know if it's related to the candida overgrowth or what, but no coffee for me.

 

- Could it be the beans? Some people have issues tolerating beans/other legumes. I gave beans up for about five months, and then my mom offered to make black bean soup (it's soo good) so I made sure she used gluten-free vegetable broth and fresh salsa (instead of jarred, it has more preservatives) and I made sure she used gluten-free black beans. The reaction wasn't horrible, but I am still going back to excluding beans from my diet. Gave me a small amount of GI trouble. 

 

- I have been gluten free since July of 2013 and now my diet is so super strict, and I am still not 100%. I guess it just takes time, and sometimes it's longer for others. I do feel a lot better since starting this strict diet, but I also have a lot of issues to fix.

 

You'll find what works best for you! I did a lot of elimination diets to pinpoint foods that were bothering me.

[Nikki2777]

You didn't mention whether you were getting the Dunkin Donuts coffee at home (from packaged grounds) or at a DD store.  While I go to many Dunkin Donuts safely, there's one near here that I don't trust -- just seems like the place is dusted in doughnut flour.  Is that a possibility?

[SMRI]

Things have gotten better since I first posted this .  I got the DD coffee pre-ground at the grocery store.  I think it was just a temporary thing or a no, you are not healed yet thing.