donnal
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My history includes having been tested for celiac with neg results (blood--had a scoping years before that and no abnorm cells were taken and tested). Well, I kept having gut issues as well as fatigue and a bad taste in my mouth and began reading about gluten-free diet so I went gluten-free back in April, then added corn-, soy-, dairy- and egg-free, adding back eggs which seemed OK. Each time I'd add back something, even gluten, I'd have mixed results (have been keeping a diary). So this past sund hubby and I went to Galveston for a couple of days and I ate everything wrong. On purpose. Well, the outcome was inconsistent. Some times I had pretty bad pain a/o bloating (up to 7 on scale of 0-10 once) but other times no problems. My main improvements, it seemed, on the diet were more energy, no bad taste in mouth, much less/very infreq gut issues (never D, always C has been the problem) but these didn't seem a problem on our time away (except, as stated above, sometimes gut issues). I have to factor in the point that there was no stress on this trip, whereas I have a fairly high level of stress normally. So, where does the diet fit in all this? Does the stress make the gut issues worse or is it possibly all stress related and not food issues at all, since I tested neg anyway (I know the tests aren't 100% reliable). My main concern is that if I have "borderline" gluten problems I don't want to make my body systems pay by eating it despite not having consistently evident "side effect". I am an RN so I know disease processes often don't manifest until damage is done and I don't particularly want that. On the other hand, there is no need to be trying to find appropriate foods if that is not really a problem. I thought maybe some of you out there might have some ideas of the directions I should head in now. Would it be "beneficial" to keep eating "wrong" until problems occur or should I just go back to G-, C-, S-, D- free limits? Thanks for any input!! DE
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the food journal idea is going to be a big help for you. I didn't do that for quite a while ("too much work" "I feel paranoid enough") but finally did and it helped me realize I also have dairy and corn sensitivity, it seems. I stay free of everything for several days, then do one day of "testing" whichever I'm not sure of, eating as much of it as I can, and then journal carefully for the next several days--everything from how clear is my vision to what is my fatigue level to how are my emotions. The sensitivies can show up in any/all of those areas, not just the gut! So hang in there!
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I always am on the low end of normal for glucose checks--have been as low as 64!
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Well, it's hard to describe the taste--I'd often say it was like a rat crawled up and died in my mouth (but can't speak from experience, having never had that happen
)--my husb said my breath didn't smell "that bad" but it was really nauseating to me. Like old food, or something. Not really a sour taste, more like spoiled. Does that ring a bell? -
I've been gluten-free since mid-april and have noticed that a taste in my mouth, which would always be there after I ate but much worse after breads or ice creams, has gone since I've been gluten-free! I would actually have to brush my teeth or chew mint gum (couldn't handle mint candies) to try to get rid of it. I had asked my GI doc a couple of times over the years as well as my GP and they had no answer (my lactose breath test came back OK as did my EGD--no biop--and blood work so they had no test results to go on).
Another interesting improvement has been my vision. For about 2 yrs it has been blurry to varying degrees and I even had my lenses changed twice, which didn't help a bit. I was starting to be concerned lest I has early-stage, mild MS (my mom had severe MS, ending up bedfast) but whenever I am strictly gluten-free (sometimes--not often!--I imbibe or have unknowns, since I seem to be sensitive and not "true" intolerant/celiac) it is amazingly better. So I was just wondering if anyone else has noticed that sort of thing. Incidentally, one of the things driving me to be gluten-free, along with the bowel issues (labeled by docs as IBS-C) was that my mom had that autoimmune disease and my dad is a heart patient (inflammatory process) so it seems prudent, since there are so many other good grains/legumes, to go gluten-free and maybe avoide those family "inheritences"?
By the way, my choesterol is high--will gluten-free eventually help with that? I am talking total being around 250 and HDL only 50--I am thin and quite active and overall try to eat healthily (am actually a cardiac rehab nurse, ironically). Thanks for any input. I'm almost 55 y/o if that has any bearing.
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I have been steering clear of Corn as well as gluten and have discovered Brown Rice Syrup. It can be used like a waffle syrup or with pnut butter in a sandwich. It is not quite as thick as honey and the jar tells how to substitute it for honey or sugar since it is a but "runnier". I love the taste just out of the jar. Just thought some others out there who are missing jelly or syrup might like to look for it.
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I seem to have two different reactions when glutened. Does anyone else react like this?
1) Cramps, diarrhea within a half hour of eating. Go a few times. Then 2 days later canker sores, very light brain brain and irritability. Lasts maybe 2-3 days
2) 2 days after-No D, canker sores, brain fog, feel like I have been beat up, flu-head (?) achy, 4th day boom-all of a sudden depression and anxiety. Don't want to be around people lots of noise all around me, joint pain and just plain miserable for about 2-2.5 weeks.
Then I get to the point I can say I really feel good today.
Usually closer to a weekend. Then we go out to eat and it starts over. I am giving up going out or to group events.
Doing great today.
I'm pretty new to this gluten-free lifestyle also but have learned that I react sometimes almost before I'm done eating but at that point it is a full/bloated feeling. then it "grows" for almost 2 hrs at which time I am usually pretty miserable (about an 8 on a 0-10 scale)--pain, feeling "pregnant", visible bloating. This is usually around bedtime which makes trying to sleep a lot of fun! then by morning the bloating is down and I can usually have a bowel movement (I've been labeled IBS-C) and feel better. then if I am careful I can be at about a 2-4 on a 0-10 scale the rest of that day until about 24 hrs has passed. All this does make me feel tired, not so much brain foggy but tired and a bit "down"--maybe due to discouraged that I either tried to be careful and had some no-no anyway (maybe CC) or that sure enuf I have to eat this way "forever"). There are many people on this forum who have great guidance for us newbies and I have read several postings and reactions are, apparantly, as individual as each person. so I think the key is to know how you react so you can be aware that you had a no-no and not eat that particular thing again. Also be sure to accees the "Unsafe Foods" on this site's sidebar. Very helpful!!
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After reading many posts and also links on celiac.com I have realized that celiac has quite a number of potential adverse co-morbidities such as lymphoma, osteoporosisi, other inflammatory processes (RA, etc, seem to have links to celiac disease) so my question is: since I have had neg endoscopy and neg blood tests (IgA etc) but do seem to feel better (have been labeled IBS_C) when gluten-free, would I have a risk of these more seious diseases if I were to eat gluten once in a while. I know I'd most likely pay the piper stomach-pain wise but that would be OK if I knew I weren't doing "real" damage. I didn't know if there has been any research on gluten intolerant folks or just on certifiable celiacs. Thanks for any help. by the way, I do have osteopenia but I am small built (5'4" and 103 lb--having a bit of trouble keeping the weight on with gluten-free eating but will get better--am learning to eat more things with the flour mixes).
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I am (perhaps unfortunately!) a cardiac rehab RN so I have to "preach" high fiber, whole wheat, blah, blah. Well, since I have been doing gluten-free I have, by it's nature, cut back somewhat on the fiber intake. However, it is starting to occur to me that I get the "good ol" bloating whenever I eat berries or add quite a bit of flax or such to whatever I've made. Could I be dealing with cross contamination or just have become more sensitive to fiber? It does usually result in more active bowels (I have been labeld IBS-C). I also feel somewhat guilty as I'm not doing what I'm supposed to preach (whole wheats till they come out one's ears, for instance). I should add that I am presently on the elimination diet (no milk, eggs, corn, soy) and I don't think I had any of that except I did have about 1/8 tsp of Promise margarnine which also lists whey in the ingred (didn't look till after I ate--still learning!). Thanks for any help!
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yup, I found out the "hard" way, also, that Ketchup and Mustard (two of my favs) have vinegar in them. If you go to the Unsafe Foods like on this Celiac.com site you will see that vinegar, unless specifically listed as Apple, is usually of the distilled type (cheaper!) which comes from grains (often unstated sources). You will learn that even though a product states "gluten free" on it's label it may very well not be. Many have maltodextrin, which can be questionaable, or like the condiments, vinegar. So it is good to more or less memorize that unsafe list! Makes one feel neurotic but it is way better than feeling sick!! Keep truckin'--this is a great support-group community with a wealth of wisdom to share!
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Whey in margarine! I took the advice from several of you and went on a total (I thought!)elimination diet for wheat, eggs, dairy and corn. Well, I made some OK (I thought!) cookies last night and then, for some reason, read the Promise margarine lable and it has some whey!!! How much is that gping to skew my experiment for dairy free? I know, from reading lots of posts, that everyone reacts differently to different amounts and I'm thinking each cookie would only have about 2/3 tsp, if that much, of margarine in it, of which only a small amount of that would be whey (about the 5th ingred on the label). So do I need to avoid the cookies for a week (they sure got good, drat it!)? Thanks for any help.
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I've been, as far as I know, gluten-free for 2 1/2 wks--not very long--and I've had some good days but also some days like before. I've been labeled, of course, IBS but with constipation. Blood-tested negative for celiac (I know from this site that isn't reliable all the time). I'm 55 and have had gut problems most of my life. From a stressful time several years ago it seems to have gotten worse---very early satiety, upper abd pain and bloating, tenderness at times, etc. OK. Well, since being gluten-free there have been some returns of that so, my question is, how do I know that it's cc gluten (a possiblitiy since I'm an empty-nester and it's hubby and me and he's not gluten-free!) rather than that gluten isn't my problem and quit the lifestyle? Do I just need to stay the course a bit longer and try to be circumspect about cc? It's not an easy way to eat, as you all know, so it would be easier, cooking-wise, to not be gluten-free but the abd problem "ain't so fun" either!! I'm willing to learn a new way to eat if it would relieve my misery!! Thanks for any help.
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Hey, everyone! I used to get satellite and loved the cooking channel. Why don't the gluten-free flour companies or such sponsor a gluten-free cooking show?! I think one would very very much appreciated and welcomed! I know I'd feel that way--to have it "legitimatized" and out in the open (so non-gluten-free folks don't think it's just "health kick" thing!!) Has it been tried already or is there one and I don't know about it (we are thinking about getting satellite again). thanks!!
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Well, my doctor wants to send me for the blood test. The biopsy of my small intestine showed that I have a gluten intolerance. I've read that when you go gluten-free the tests will be negative. Also, a friend of my mom's said the biopsy is pretty much dead on, that there shouldn't have to be any other testing. Is this right?
Also, I was wondering what people could tell me if whey is included in all of this. I've had mixed answers from people I've talked to and read things. I think my brain is just on overload and can't process all of this information. I'm having a very very hard time with this. I'd just hired a personal trainer and seriously been losing the rest of my weight from over the years. I've lost 92 pounds mostly from the GASTLY "D" word I'm assuming. Now, they say don't eat oatmeal for a while because it could be CC, no dairy products for 3 months as it could also bother my stomach. So, yogurt is out? Is yogurt a no no as well? I've been told yes and no. As yogurt plays a part in my diet. I was eating 5-6 times a day for my workout plan. Now I find it very hard to figure out what to eat for snacks and for breakfast. Egg whites...but who can eat egg whites everyday.
I really need some suggestions, I feel so overwhelmed and I don't know the hidden gluten, etc etc. It's very frustrating.
I can say that the last couple days I haven't gone to the bathroom 9 or 10 times. My stomach isn't hurting after I eat every meal. Where as before it hurt everytime I ate and I have diarrhea all the time. So, I can tell a difference in only a couple days where that is concerned.
I am pretty new to this lifestyle also but found out, the "wrong way" (stomach pain, intense fatigue) that light sour cream, in order for it to have the "normal" consistency has added products, one of which is dextrin! ARGH!!
Be sure to print out this list https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html as it will help you avoid thise miserable mishaps! I'm thinking it's safest to skip "healthy" (low-fat, low-sodium) stuff in favor of the "real" thing as the added ingredients increase the risk factor for us. However, along those lines, I am interested how this lifestyle affects one's cholesterol levels as most of the baked mixes require a number of eggs (avoid egg-beater type stuff as it has added ingredients!) and shortening. Anyway have a report on that aspect? -
I so much appreciated everyone's input. Because I was blood-tested for celiac over 2 yrs ago and all came back neg, I feel I have to "defend" this "nutty diet" I am doing. People say, well, folks have eaten wheat for centuries--why all of a sudden all this problem. Makes me feel like a hypochondriac! I've been helped by reading the long research article on this site but it is still hard to "defend". I do know that if the misery I had a few days ago was from cc gluten I dont' want to go there again! I will try the food diary thing. Keep up the needed work of encouraging us newbies!!
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I have a question. I have been gluten free for about 5 months now, but I still find myself sick about 2 or 3 days out of each week. Most of the time it will happen after I know I didn't eat anything different, and sometimes I just wake up nad am sick that day (and it usually lasts 2-3 days).
I am wondering. How soon after someone with Celiac Disease is exposed to Gluten do they get the symptoms? If I don't get sick within an hour of eating something should I consider it safe? Can it take as long as a day to kick in?
Any info on this would be so appreciated.
A lot of times I just end up suspecting that I am sick just from the anxiety that is created by worrying about getting sick.....
-Melanie
Such an appropriate question to which I can say I"d like an answer too!! I have just been gluten-free (or trying to be) for about 13 days now and was feeling ever so much better for the first 8--not nearly so tired, still feel full quickly after a meal but not "pregnant" or in pain and having better bowel function (have been diagnosed as IBS constipation-predominant) and then two days ago I felt like crud again--like I'd been hit by a truck (extreme fatigue) and pretty severy abd pain again. But I got to thinking about things I'd read and the list on celiac.com of unsafe additives in food. so I went and looked at things I'd thot were OK and lo and behold in my low-fat sour cream is dextrin, which can be wheat derived!! I don't know if that's it and I would like to know, like you, if there is some time frame during which we can anticipate a reaction (would help in knowing how far back to check what we'd eaten) and how long a reaction can linger (I am feeling probalby 50-75% better today, about 36 hrs after initially feeling horrible). Feeling that bad, tho', did make me want to stick with this longer and see if it is, indeed, the problem. I have felt so bad for so long and it was so great to even feel somewhat better. I think I would have a hard time, though, being off dairy in additon to gluten!! Thanks for posting your question--let's see what help we can get from those have blazed the way for us!! donnal
Puzzled
in Coping with Celiac Disease
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Thanks for the link!!! I went to it and found the Tyler group's email--I had heard there was a Tyler group (I live in East Texas) but didn't know how to find out about it!