Gluten Free And Still Sick

[Guest mvaught]

Hi everyone, I've went gluten-free before doing a gluten challenge and it worked great. Now since I have done that and gone back off gluten, I still feel crappy. Don't get me wrong, I DO feel better in many ways...no more D and nausea and horrible stomach pains (now I have C), no more brain fog. However, I am bloated at some point every day. I cut out all dairy which does seem to be a problem and I try to limit soy as well. I don't eat meat - only fish. I rarely eat an egg (very rare, since I don't like them much). Oh and I rarely eat nuts either. I try to change things up as far as what i eat goes, but no matter what, I am always boated!!! I'm also tired all of the time and still suffer from headaces often (though not like the ones I got from gluten - however, i have a jaw problem that also causes headaces, so I usually blame them on that). I'm very very careful about CC, so I don't think that that is it. Are there other intolerances that I am missing? Or is it just that my body got sent on a roller-coaster ride from the gluten challenge and still hasn't recovered? I'm so frustrated and depressed all of the time because of the constant bloating. I woke up this morning, and there was no bloating (it seems to usually go down at night - though usually not completely) and of course, right after lunch - pop....i look pregnant. Any one have any advice - I try to drink a lot of water/fluids. I just feel so sad and frustrated - i can't stand it. Help someone (ps -- no use telling me to see my doctor, I go to student health center at school and she is clueless, so no point there). Did anyone else go through something like this because of gluten challenge? Am I missing something?

-michelle

[paulasimone]

i'm sorry you're still sicky!

1. i would imagine going back on the gluten would definitely throw your body off for a good while.

2. are you doing probiotics? (acidopholus, etc, either through yogurt or supplements) i've heard it's important to replace those "good" bacteria when you're going gluten-free - they're part of what makes your digestion go right normally.

that's all i got - i hope you feel better!!!

paula

[DingoGirl]

Michelle - I wrote a week or two ago about how *fabulous* I was feeling just two weeks gluten-free......Oh, I feel your pain. This last week has not been good at all. STarting last Monday with *EXPLOSIVE* D and from what cause, I know not! I've carefully reviewed everything.....now there is bloating every day, brain fog, fatigue, and just a general sense of malaise. What are we doing wrong? I too am careful about cross-contamination......are we just more sensitive now that we're off gluten (as much as we know how to be)? I have stomach pains that I never had before when I was on a STEADY diet of continuous gluten!

But, here's the weirdest thing of all.....I am now a BINGE eater! I have always been really thin, cared nothing about food....and now I am, in these last two weeks, obsessed wtih it. I am ravenous all the time, have put on about 7 pounds and have to exercise some discipline now. Kind of panicked about food and thinking of it always - you know when you're running around town on various errands, you can't just zip through a drive-through and pick something up, you have to have PLANNED it or go all the way home - UGH! Makes me crazy!!

I have been excited about your book project but evidently am not out of the woods yet. But, we will press on.....

Blessings -

Susan

[GC1]

I notice you said you eat little meat, eggs, etc... maybe you're eating too much carbs, starch, etc, and you may be getting to much fiber. I had bloating all the time, but felt much better when cutting back on those foods... and I'm talking about the time before learning of Celiac. Part of the time, I had D, then followed by Constipation, then back to "hot 'n' mushy" or D. Most think fiber makes you always go, which is partly right; but this can often be followed by constipation, stomachaches, gas, bloating, etc.

You might also consider "food combining", smaller meals, drinking little or nothing with food, not mixing/eating raw fruit [or fruit juice] with other foods, checking out the 'blood type diet/food lists', etc.

Good luck, GC

[Guest mvaught]

Thanks everyone for your suggestions!!

paula - I have just started probiotics, but it has only been for a little while that I have been trying that (I've been drinking soy kefir) - so we'll see if that helps. hmmm, vinegar...i do sometimes eat stuff with that in it (Newman's own salad dressing being one - supposedly gluten-free), but i also get bloated when i don't - i'll try eliminating it and see what happens.

GC - I don't think that it is that I am eating too much fiber - I do eat fish (probably 4-5 days a week or so) and I do eat soy (as well as goat cheese, which seems to bloat me more if i eat it too many times a week, but seems ok if i limit it), though I guess it is always possible. I don't eat much raw foods (only fruit and the occasionaly salad) I haven't tried food combining and am not that familiar with it (but i do always eat fruit apart from other foods - and don't really drink juice, too hard on my bladder). I already try to eat small meals (because of the hypoglyemia) but i'm not always good about it - so i will try harder with that. I haven't eaten meat (red and white) for 15 years, so my body no longer even produces the enzyme to digest it...can't really go back to that. Do you have a link to food combining and eating for blood type - worth a try.

Susan - wow, i know - this is soo frustrating. i did the super hunger thing too, but it calmed down, so maybe it will for you too. Hopefully we will get get better eventually.

thanks again everyone, i'll try just about anything at this point!!

Thanks everyone for your suggestions!!

paula - I have just started probiotics, but it has only been for a little while that I have been trying that (I've been drinking soy kefir) - so we'll see if that helps. hmmm, vinegar...i do sometimes eat stuff with that in it (Newman's own salad dressing being one - supposedly gluten-free), but i also get bloated when i don't - i'll try eliminating it and see what happens.

GC - I don't think that it is that I am eating too much fiber - I do eat fish (probably 4-5 days a week or so) and I do eat soy (as well as goat cheese, which seems to bloat me more if i eat it too many times a week, but seems ok if i limit it), though I guess it is always possible. I don't eat much raw foods (only fruit and the occasionaly salad) I haven't tried food combining and am not that familiar with it (but i do always eat fruit apart from other foods - and don't really drink juice, too hard on my bladder). I already try to eat small meals (because of the hypoglyemia) but i'm not always good about it - so i will try harder with that. I haven't eaten meat (red and white) for 15 years, so my body no longer even produces the enzyme to digest it...can't really go back to that. Do you have a link to food combining and eating for blood type - worth a try.

Susan - wow, i know - this is soo frustrating. i did the super hunger thing too, but it calmed down, so maybe it will for you too. Hopefully we will get get better eventually.

thanks again everyone, i'll try just about anything at this point!!

oh wait - it isn't the vinegar (and i have been staying away from liquors) beacuse the dressing i use has balsamic, so, hmmm - still will have to watch out for those grain vinegars (i wanted sushi the other day - but them say that the cucumbers are soaked in grain vinegar, so thankfully passed on that)

[aikiducky]

Hi everyone, I've went gluten-free before doing a gluten challenge and it worked great. Now since I have done that and gone back off gluten, I still feel crappy. Don't get me wrong, I DO feel better in many ways...no more D and nausea and horrible stomach pains (now I have C), no more brain fog. ....SNIP.... Did anyone else go through something like this because of gluten challenge? Am I missing something?

You know, this sounds EXACTLY like it was for me when I first went gluten free. I think you're on the right track, really. I think you can relax and just let time do it's job.

Also, any time I get glutened, I first get D, and then when I start to get over it, I have C for a good while, and then finally everything gets more normal. So that could well be a part of the healing process.

Pauliina

[Guest cassidy]

How long have you been gluten-free this second time? I know some people feel bad for days and even a week if they are glutened by a small amount. If you actually ate tons of gluten then I can see how it could take a while to recover. Also, it will take time to heal in general. You may feel better right away but some people say it takes 6 months to a year to really heal, so you may keep feeling better during that time.

The getting better process has definitely been a roller coaster for me. It is very frustrating, but when I feel bad I always try to remember that this is how I used to feel all the time, and now I only feel that way sometimes, and it is getting less frequent.

[ianm]

You may just need to give it more time. It has been two years for me and it has only been over the last three months that my health has remained on an even keel. There were plenty of ups and downs after I went completely gluten-free. You didn't get sick overnight and won't get better overnight either.

[Celia the Celiac]

Well...I've now been gluten free for four weeks. I felt the way you did last week. Here I've been trying so hard and still feel like crap. But I also deal with other "digestive" related problems in that I've had my stomache stapled and banded 4 years ago. I lost 172 pounds then after that I found out thru tests that I have Celiac. I can't eat like 5 servings of veggies and fruits a day like most people do. People often frown on supplements but I have to have them because of my tiny stomache. Right now I'm taking Collogen, Probiotics, Fish Oil and Coral Calcium. What's given me so much more energy is the Collogen. Some might think it's gross but it really helps my energy level. Hang in there girl!

I'm sooooooo excited about the website! It's really good to know that there are so many other people with this problem. The information on here has been such an asset and learning tool for me.

Tomorrow, my boyfriend is driving to Houston Texas to a huge grocery store called "Whole Foods"

I now have so much fun finding good tasty food just for me. That's how I look at it.

You have to keep your mind set right about all of this. If I don't watch it, I get real down about my illness. When I get to feeling really weak, I'll utilize that time in thinking of all things that I can be thankful for. Staying happy and positive does wonders for our health. Don't yall think?

[jerseyangel]

Hi Michelle--Sorry to hear you're having a hard time . I think what is happening now is part of the healing process. I have been gluten-free for a little over 8 months now--I was not one of the people who felt better right away. The D subsided rather quickly, but overall, I felt pretty bad for the first 3 months. I had fatigue (felt like I could not ever get enough sleep, no matter how long I slept), brain fog, muscle aches, lightheadedness, headache and lingering digestive upsets. Around 4 months along, I began to feel better and was fine for the most part until mid December. At that point, the digestive stuff (nausea, stomach pain, cramping) came back along with reflux that I'm still dealing with. Something to consider--I am pretty sure that I am intolerant to all grains--when I added rice back in, I got very bloated. Since I'm in the middle of all this, myself, I would say to give it more time and also keep an eye out for any other foods that may be a problem. I have found that foods that I did not appear to have a problem with before are causing symptoms now.

[slpinsd]

Michelle,

I feel your pain. Sometimes this really sucks. I am kind of going through the same thing- I've been gluten-free for a month now, saw immediate improvement in symptoms after about a week, but had increased fatigue and weight loss. However, the D part is activated by even more food intolerances, the one I suspect is a fructose malabsorption problem. It seems even more pronounced as before going gluten-free-- and my previous "gluten" symptoms DO rear their ugly head a few times a week again.......so it makes me wonder if it was gluten afterall......

[Guest mvaught]

Thanks everone!! I feel better knowing that you all went through/are currently going through the same thing. It has only been a month since I have been gluten-free for this second time (and I totally went full force on the gltuen for the challenge - which is why i could only stand it for a few weeks). I guess that I need to hang in there and like you all said, be patient. Ir is so frustating to have to wear bloat clothes or hide the bloat belly, but again, hearing y'all's experiences makes me feel loads better - just what i needed.

Ian, you are totally right, it took a long time to get sick and I suppose it will be a while to get better.

Celia - Whole Foods is sooo great! It really helps with the options - they have a website that has a link to all of their gluten-free products (so avoid the hidden stuff - and be careful about cross contamnated stuff - be sure things are made in a gluten-free dedicated factory, lots of the products will tell you if they are...for example some of the Amy's products are gluten-free, but the factory isn't and i find that I have problems with them). At the Whole Foods in my area with the frozen pizzas, there is a frozen rice pizza crust (comes in boxes of two small sized crusts) that is made in a dedicated factory (ingredients are brown rice and potato) - the brand is Nature's Hilights. Anyway, you just top it yourself. I love them - put gluten-free veggie cheese (i can't have dairy and some of the soys have gluten) and stuff like mushrooms, spinach, etc - they are fun to make and sooo good for the pizza craving. Anyway, have fun at Whole Foods - it is pricey but worth it!

Anyway, again - thanks everyone...i feel so much better knowing that all i have to do is be a little patient. I suppose that I should be proud of the bloat if it means that my body is trying to heal itself - I guess it means I am doing a good job and the gluten-free is working. I will also keep watching out for other intolerences (I've already sidcovered dairy is a no-no, at least for now). Time will tell...hopefully in a few more months I'll just be dealing with "bad days" and not bad everydays.

heart,

michelle

[Mr J]

hello m, i'm still very underweight after 6 months of gluten-free - stomach still a bit semi-paralysed thru nerve damage, although i don't for the most part have the bloating i used to suffer from. Nor do i get the 2 or more days of nausea and being unable to eat hardly anything either. this is coz i take GC1's approach of modifiying the diet food combining plus adjusting carb to protein ratio and also fibre content.

i've learned not to trust my body's cravings and instead use reasoning and experimentation to improve my digestive happiness. Like yourself i avoided red meat for years. As my stomach continued to fail i was eating more and more carbs (frequently wheat based coz i didn't know any better), i could actually digest the stuff that was killing me more easily than say a standard euro style meal of steak and starchy veg.

i have since learned that i can digest meat fine provided a) I food combine ie don't eat it with carbs - eg. no root veg such as potatoes or carrots. the meat is not tough and rubbery - all white meat ok, but avoid steaks. surprisingly ground beef eg. hamburgers or sausages are fine c) i don't overdo the quantity.

i understand that after many yrs of meat abstention you would be nervous about introducing it. However steps can be taken to ensure a successful stomach day. Can even take things a step further with 'sequential eating' and adding veg based digestive enzymes to help things along if you are worried about your pancreas forgetting to produce the meat specific enzymes after all those yrs.

a practical example of this is my lunch yesterday.

start off with mashed cabbage and some raw spinach leaves. Into this is mixed mayo and powdered fiber digesting enzymes (houston No Phenol brand, and Garden of Life) both powder the tablet G of L has some dodgy barley juice in it so avoid them. when i've finished with the veg i then ate a couple of beef sausages - with protein enzymes this time - (Houston peptizyde and GNC papain and bromelein tablets). I mix the powdered peptizyde with a little honey or maple syrup - not food combining but it works :-) for some reason a little of the simple sugars go down ok with protein - i think coz it digests in the small intestine and doesn't get caught up in a gas producing situation in the stomach like starch - i use only enough to make the powdered enzyme easier to deal with and stick to the meat anyway. to avoid my fear of overdoing the quantity - i either use the packet as a guide if its something like sausages or weigh on electronic scales if its something like chicken or fish i prepared myself. i aim for just 20g of protein - typically thats 3oz of cooked weight meat/fish. if i do all these things i don't get bloated. since increasing my meat intake i don't get so much peripheral neuropathy (numb hands).

on the subject of fiber, when i was at my worst i had to eat the meat first and then slowly sip some vege juice from my juice machine afterwards or get my digestion delayed too much. now that i am a bit better and my stomach is not as paralysed as it used to be i find digestion is improved with a bit of fiber and don't put my veggies thru the juice machine - except if i'm making my special "american congee" - rice porridge with carrot or celery juice brekky.

i've found patience is needed, but not just the passively wait to get better patience, but rather the discipline needed to re-arrange my eating and figure out the food combining schedule, it takes a bit of time with some online research, trial and error and a little book which gives the protein/carb/fat contents of all the foods out there.

i know i said i was still very underweight so you might wonder why i bother, but i really would be a lot worse without it. As a result of the gluten-free/food combining diet i have been able to get rid of the stomach motility drug which i used for the 6 months prior to going gluten-free. this motility medicine really messed my mind up and i even got called into my managers office to explain my poor work performance during that time. so although i'd prolly be at my strongest with the new diet plus medicine i'd rather keep my job, which pays for my healthcare and the other more fun things in life.

cheers,

Mr J

PS food combining is good for me coz i struggle to achieve a decent volume of thru-put. those who have the opposite problem - big appetite, might find it has too much glycaemic index bounce.

[Guest mvaught]

Thanks Mr J - I will try the food combining. Although I still am not going to eat meat (I have not only not eaten red meat - but no foul nor pork as well - i just don't like them, not only because they never sat well, i also just don't enjoy eating them, only fish/seafood, beans, eggs)- eggs and fish is good enough for me in that sense (and goat cheese seems ok if i space it out and don't have too much) - but i will try increasing the intake of those, especially the fish/other seafood to be sure that i have the 20g protein. anyway, thanks for the sample diet - that is helpful as reference.

michelle

[Claire]

I posted these two URLs in different threads but think they might be of interest to the person who started this topic.

Open Original Shared Link

Open Original Shared Link

The second URL posted above is not currently working. Sorry about that. Claire

[Celia the Celiac]

Michelle,

What a blast I had today at whole foods. I just went crazy! We only have one Organic and Unique Market in our area. This was wonderful. I actually bought a gluten free cherry pie! Yummy!!!!!!!!!

I may have to do a once a month trip to this place. Its only an hour and a half a way. I just loved all their stuff. I wish I could go by myself. That way I could take my time and read without my "non gluten fee boyfriend" at my side trying to act as of he's interested. lol

Hope you feel better and thanks for your advice. It helps and I need a lot of that right now.

Celia

Celia - Whole Foods is sooo great! It really helps with the options - they have a website that has a link to all of their gluten-free products (so avoid the hidden stuff - and be careful about cross contamnated stuff - be sure things are made in a gluten-free dedicated factory, lots of the products will tell you if they are...for example some of the Amy's products are gluten-free, but the factory isn't and i find that I have problems with them). At the Whole Foods in my area with the frozen pizzas, there is a frozen rice pizza crust (comes in boxes of two small sized crusts) that is made in a dedicated factory (ingredients are brown rice and potato) - the brand is Nature's Hilights. Anyway, you just top it yourself. I love them - put gluten-free veggie cheese (i can't have dairy and some of the soys have gluten) and stuff like mushrooms, spinach, etc - they are fun to make and sooo good for the pizza craving. Anyway, have fun at Whole Foods - it is pricey but worth it!

Anyway, again - thanks everyone...i feel so much better knowing that all i have to do is be a little patient. I suppose that I should be proud of the bloat if it means that my body is trying to heal itself - I guess it means I am doing a good job and the gluten-free is working. I will also keep watching out for other intolerences (I've already sidcovered dairy is a no-no, at least for now). Time will tell...hopefully in a few more months I'll just be dealing with "bad days" and not bad everydays.

heart,

michelle

[Guest mvaught]

Michelle,

What a blast I had today at whole foods. I just went crazy! We only have one Organic and Unique Market in our area. This was wonderful. I actually bought a gluten free cherry pie! Yummy!!!!!!!!!

I may have to do a once a month trip to this place. Its only an hour and a half a way. I just loved all their stuff. I wish I could go by myself. That way I could take my time and read without my "non gluten fee boyfriend" at my side trying to act as of he's interested. lol

Hope you feel better and thanks for your advice. It helps and I need a lot of that right now.

Celia

Celia - I'm so glad that you had a blast - funny when i went, i got a gluten-free apple pie and it was awesome! haven't tried the cherry yet. for some sweets - i also got gluten-free, dairy free "chocolate" (actually carob) chip cookie made of potato flour. anyway, the best ting they have there is choices of bread (and the veggie cheese - since i don't eat dairy either) - so grilled cheese for comfort food rocks! anyway, some of ther regualr grocery stores also have gluten-free stuff in their health food section - i found gluten-free breadcrumbs which i bought thinking - hmmm i have no idea what to do with these, but i will buy them anyway - and then (like you said - it lets you be creative) it clicked - stuffed mushrooms - yummie (i just saute mushroom caps and then make a mix in a separate saute pan with the breadcrumbs and some oil, plus i add spinach sometimes...then just mound the breadcrumb mix into the mushrooms and top with cheese/cheese-like product and put in oven basically until cheese melts - sooo good).

okay - good luck - thanks for the well wishes!

-michelle