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Anybody Here Feel Worse On This Diet?


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#1 Guest_gillian502_*

 
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Posted 13 March 2004 - 07:11 PM

I've posted this question before, a long time ago, but since we have some new members with us now I'd like to ask again if anyone has had trouble feeling well since beginning the gluten-free diet. I started the gluten-free diet in Aug.2003, and have been 100% gluten-free since, with a couple of minor mistakes thrown in along the way. I've been dairy free since Dec.2003.

Ever since this diet began, I feel extremely, abnormally, hungry and must eat three times what I used to eat just to maintain the same weight, and to get full. My biggest problem is, I just don't feel right inside, like I am raw, inflamed, and achey in my stomach all the time. My abdomen also feels achey, as if I've been repeatedly kicked in the gut, or had a hard workout and that area hurts. I also notice my abdomen is a little swollen. I feel my best when I am very full, otherwise I feel the raw ache inside and it's really disturbing. All of these strange stomach sensations began when I went gluten-free.

It's been over 6 months, and though some of this pain and weirdness has let up, it still isn't normal. I have no allergies to foods, I've seen my doctors, and they are almost out of answers. Does everyone just feel better or is there anyone like me whose body feels terrible being gluten-free?
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#2 LisaP

 
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Posted 13 March 2004 - 07:52 PM

Unfortunately for you, as I have gone gluten-free, I have felt better. But when I was diagnosed, my gut was swollen.....and when we did a small bowel X-ray series as well as a CatScan, I showed an area of my gut that was thick and inflammed. This really concerned my doctor and we did go in and do a surgical small bowel biopsy to make sure there was no cancer or other ailment starting to develop there. Good news for me was that nothing other than celiac disease showed up.

Now after 2 months being gluten-free, my gut does not appear swollen from the outside, but I still have a long way to go for it to be repaired.

If you have not had some tests done that can show that state of your gut, you might run that by your doctor.

I am clueless, but this is my experience.

Best wishes to you. Wouldn't it be nice if medicine really was an exact science? It sure would make our lives alot easier.
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Lisa

#3 SteveW

 
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Posted 14 March 2004 - 04:43 AM

gillian502

Sorry you don't feel better yet. Iím still having reoccurring issues too. I feel better but I still haven't put together a full week without going back to square one.

Has your blood been retested? It should show if you still getting Gluten from something. I just got retested and my antibodies and they were better but still high. Iím clueless as far as where I'm getting it from.

I was eating some enriched rice that I think had gluten in it even though the company swears it doesn't. Blue Diamond Almonds(damn there good) maybe?

Have they investigated the possibility that you may have other medical issues?
I know that after my biopsy I have Sprue and possible the start of Crohns.
Right now I'm on a 3 week run of Prednisone to see if it kick starts my system since I've had this so long it may not be responding to the diet on its own.

Not trying to freak you out but there is a possibility that it's something else.
Did you get a biopsy?
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#4 flagbabyds

 
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Posted 14 March 2004 - 08:14 AM

Blue Diamond plane almonds are gluten-free not all the bbq flavors but the plane ones are completewly gluten-free
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Molly

#5 SteveW

 
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Posted 14 March 2004 - 08:18 AM

Blue Diamond plane almonds are gluten-free not all the bbq flavors but the plane ones are completewly gluten-free

I was eating the roasted and salted ones.
Maybe that's the issue?Or are those ok too? :unsure:
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#6 flagbabyds

 
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Posted 14 March 2004 - 09:04 AM

roasted and salted ones are gluten-free too just not the barbeque ones
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#7 Guest_gillian502_*

 
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Posted 14 March 2004 - 09:05 AM

Thanks everyone. Yes, I'm awaiting test results on my my latest Celiac panel. The blood I had taken after 3 months on the diet still showed me to be in the positive range, though better than when I was initially diagnosed. Now we'll see where I am at 6 months gluten-free.

I was biopsied by endoscopy, and that confirmed the Celiac diagnosis. On Apr.12th I will have a colonoscopy, which I'm scared to death about, but need to rule out other diseases. I've always wondered if maybe this isn't Celiac but something that looks like Celiac...but I guess that wouldn't be possible if my IgA and other blood tests were clearly positive, right?

Also...what does it feel like to be on Prednisone? That might be in my future, and I've been holding off on that, but would like to know what I'm in for if I ever do give in and take it.
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#8 SteveW

 
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Posted 14 March 2004 - 10:13 AM

I've only been taking the Prednisone for 3 days and I haven't notice much if any any difference in GI symptoms.But I know that I'm having a hell of a time sleeping.Up at 4 am every morning.Not somthing I want to be on because of all the long term side effects-I figured 3 weeks would be ok to see if it gives my insides a chance to heal.

When I had a colonoscopy I was very uneasy at what they would find. But you mine as well know so they can treat you if it's somthing else.I'm still unclear about the crohns I may have but I won't know until I get my blood tests down.
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#9 LindaB

 
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Posted 14 March 2004 - 05:25 PM

Gillian,

Since being on this gluten free diet for over a year now I have the same feelings you do in the stomach and get very, very hungry and feel that I have to eat right now in order to feel better. My stomach will feel raw which I never had before. After eating I will start to feel better. I had my tests done after six months and was down to negative in all but one which unequivocal, so I know I am eating gluten free. However, I feel weird most of the time and my small intestine will feel different even now, especially when I am sitting after eating. I tend to lean to one side or the other to be more comfortable and am not able to eat all foods even though they are gluten free. The doctors don't seem worried about it though and sometimes I feel ok. I have found some things I used to eat bother me now, like corn which I love. I also eat more than I ever did before just to maintain my weight so I guess I am not absorbing everything even now. Just recently, however, I gain about four pounds so that was encouraging. I also cannot eat any rich foods or I have problems.

Linda B.
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#10 Guest_gillian502_*

 
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Posted 15 March 2004 - 11:41 AM

Linda,
Thanks for answering. It makes me feel a little better knowing I'm not totally alone in feeling strange on this new diet. It's been 6 months for me and I thought my body would've adjusted by now, but unless I'm full I'm just not comfortable. I feel like I have a completely different stomach since beginning this diet!
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#11 seeking_wholeness

 
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Posted 15 March 2004 - 11:55 AM

Gillian,

I remember the hunger and weird stomach sensations I used to have, and I think they took the better part of a year to dissipate. It's not quite the same as your situation, though, because 1.) I wasn't quite gluten-free at the time, and 2.) I was exclusively breastfeeding a young baby. I, too, used to have to eat enough for three, and feeling anything less than overstuffed was my cue to get up and get a snack. Seriously, fifteen minutes after I felt "normal," I would be hypoglycemic--I timed it a few times!

I don't really know what to suggest, although I wish I did! I pretty much just waited it out--although I did start seeing a naturopath, who put me on some nutritional supplements that may have been instrumental in normalizing my digestion. Might that be an option for you? I can certainly understand it if you are reluctant to trust an alternative practitioner; I was, too (and I'm still not indiscriminate with my trust), but circumstances conspired to lead me to this doctor, and I'm glad they did! :)

At any rate, I hope you start feeling better soon!
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Sarah
gluten-free since November 1, 2003

#12 cmm

 
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Posted 17 March 2004 - 09:43 AM

Hi all,

I am a very recent member of this forum but I've been reading your exchanges since january. It's so comforting! Many times I felt like participating, but since english is not my first langage (I'm french Canadian), I've been shy to do so. But the genuine sens of mutual aid in a nonjudgmental way that caracterise these exchanges did the trick to convince me to add my word, even if that implied that I will make many mistakes writing in english...

So, to make it brief, I would summarize my small history to say that after beeing sick for at least twenty years (I'm now 35), I've been gluten-free for two years and feeling much better. I've not been officially diagnosed with celiac's disease since my IgA blood test was negative but both my doctor and I agreed that since I cannot eat a bit of gluten without being sick for days, this was enough for us to be convinced of the need to follow the gluten-free diet.

In response to the initial question of gillian502, I would add that adjusting to this new diet takes time, but psychologically and physically. In my experience, I'd say that to avoid gluten, I initially had the tendancy to restrict my meals to meat, vegetables and fruits since the rest of my family (husband and three young kids) would eat their pasta or else while I simply cut that item out of my diet. The sensation of emptyness (weird hunger and even nausea) I felt not long after the meal was unbearable. The trick for me was to start cooking a lot of gluten-free specific recipe with carbs (muffins, cookies, squares, pasta, bread, pancakes, etc.), freeze them, and eat every two hours or so something that includes some carbs. Freezing them allows to have them handy whenever I crave for it (I don't leave home without some food in my bag!). I always eat thirty minutes before going to bed at night (ex.: a bowl of gluten-free cereal with fruits and soy milk) otherwise I'm nauseous around 5 in the morning. We can call it the pregnant wowen way of eating! With reasonnable portions, my weight is very stable.

I hope my experience with the gluten-free diet can be of any help.

cmm
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#13 Guest_jhmom_*

 
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Posted 17 March 2004 - 10:12 AM

Hi CMM, welcome to the board! Just jump in any time and make yourself at home here :rolleyes:
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#14 Guest_gillian502_*

 
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Posted 17 March 2004 - 11:31 AM

Well It's good knowing I'm not the only one with weird hunger pains around here! I'm going to see a naturopath in April, it was suggested to me by my mother and I think I'll try it now that I'm hearing it really puts people on the right path to good health. Anything that would aid in the digestion of my food would be a much-needed good thing.
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#15 zippyten

 
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Posted 17 March 2004 - 11:43 AM

It's interesting to read about these stomach symptoms because they are very similar to my trouble. I've had lots of nausea and stomach ache for years, sometimes a burning kind of pain, even before I went on the gluten-free diet, and it's continued infrequently even now I'm on the gluten-free diet (one of the reasons the doctor is doing an endoscopy soon). That weird hungry feeling describes it very well! Sometimes I have a type of nausea that seems to veer into hunger, and after feeling like I might throw up for a few hours, I start to feel like if I can just eat I'll feel better. And then eventually I eat and I do feel better. The pain is pretty centrally located, in the middle around the navel. I'm amazed that other people have experienced a similar symptom and feel it must be somehow connected to celiac. I described it to my doctor and he thinks it sounds acid related, which is why he's checking for peptic and duodenal ulcers as well as acid reflux, so maybe that's it...
Ellen
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