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Must Be Gluten Intolerant?


Sparkle1988

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Sparkle1988 Rookie

Hi,

I don't know if any of you will remember my previous posts but I have been suffering with a lot of symptoms for the last good few years - typical celiac symptoms. I had a blood test and endoscopy for celiac and both tests were negative, so my guess was that I am gluten intolerant. I went gluten free on tuesday just past and I feel a lot better already - no cramps and no pains in stomach, and even better...... no diarrhea!! I am just wondering if those of you with gluten intolerance still felt tired and had a few symptoms after the first few days of a gluten free diet? I know that all my symptoms won't disappear all at once. How long did it take for you to not feel as tired? I also have to urinate frequently, is this a symptom of gluten intolerance that could adventually go away? How long did it take you to feel completely better?

Thanks in advance ;)

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darlindeb25 Collaborator

We are all individuals, and can't judge how quickly we will feel better by someone else. Feeling much better in one week is great. The tireness may not pass until you build up your vitamin loss caused by the gluten. My tireness didn't go away, several years later I was diagnosed with sleep apnea, and now have a CPAP machine to sleep with every night. Give yourself time, and try to concentrate on the things that are better...keep up the good work. ;)

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Sparkle1988 Rookie

Hi,

Thanks for your reply :) Yeah I am sure my other symptoms will get better with time. I am just a bit worried in case I have a UTI infection or something, or if frequent urination is just a symptom of gluten intolerance that will adventually go away. Maybe I should go to the docs to check for UTI to be on the safe side.

Thanks again for your reply.

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nu-to-no-glu Apprentice

I think I read somewhere that frequent urination can be a symptom of gluten intolerance,but I'm not sure where I read it (sorry, I've done soooo much research)! Whenever I've had a UTI, it's typically painful and I feel urgency with only a little pee coming out. So, maybe it is just the way your body responds to gluten. Have you had bloodwork to check for diabetes? Anyway, I've only been gluten-free for about 3 weeks and feel slightly more energetic for the 1st time today, but not completely...my B vitamins are waaaaay low, so this is probably the reason. You might convince your dr to test those vitamins, and maybe you can get a good quality multivitamin to help you in the meantime. Hope you start to feel better, I completely know what you've been feeling :)

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Gfresh404 Enthusiast
Hi,

I don't know if any of you will remember my previous posts but I have been suffering with a lot of symptoms for the last good few years - typical celiac symptoms. I had a blood test and endoscopy for celiac and both tests were negative, so my guess was that I am gluten intolerant. I went gluten free on tuesday just past and I feel a lot better already - no cramps and no pains in stomach, and even better...... no diarrhea!! I am just wondering if those of you with gluten intolerance still felt tired and had a few symptoms after the first few days of a gluten free diet? I know that all my symptoms won't disappear all at once. How long did it take for you to not feel as tired? I also have to urinate frequently, is this a symptom of gluten intolerance that could adventually go away? How long did it take you to feel completely better?

Thanks in advance ;)

When I went gluten-free at first I was tired all the time, I slept so much and yet at the same time, I felt sooo good. It will take a while for you to get your energy levels back to normal, so you're not alone there.

I would say my energy levels now are almost back to normal and I have been gluten free for almost ten months.

Frequent urination can be a sign of diabetes so I would get yourself checked. I did not really experience this when I first when gluten-free.

At this rate, I'm guessing it's going to take me another six months to feel completely better.

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Sparkle1988 Rookie

Thanks for your replies ;)

I have been tested a couple of times for diabetes but tests came back negative.

I am actually really confused right now, when I first realised it may be a food intolerance, I immediately gave up lactose. On the lactose free diet I felt great for the first few days but had diarrhea on the fourth day and the fifth (I am thinking now that I may have actually taken in some lactose by accident). I gave up the lactose free diet to then try the gluten free diet, so far I have felt great on the gluten free diet and have not drank as much milk as usual. Today I have ate hardly anything, but had a big glass of milk a couple of hours ago. 10mins after the milk I began having heart palpitations and cramps in my stomach. Then it developed into breathlessness which I am still feeling at the moment, and I now have a headache and a bit of acid reflux. I am starting to think that maybe it isn't gluten? Or maybe it is both. What is the best way to figure out which ones I am intolerant to? I have noticed that many foods that contain gluten also contain lactose, and vice versa. So I am not sure where to start with finding out which is the bad food.

Any help would be appreciated.

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nu-to-no-glu Apprentice

I would give up both. Gluten and Dairy. Milk intolerance is considered different from lactose intolerance, at least, according to my dr. (I think all of these terms are used interchangeably i.e. intolerance vs allergy, etc.) which makes it extremely confusing :( Anyway, I would stay gluten free and eliminate the dairy as well and see how you feel. From what I have read, most people with gluten intolerance can start to tolerate milk products again around 2-6 months...maybe you could give it up for a couple of months and then start to slowly re-introduce it? See how you do. It sounds like you had a pretty strong reaction to the milk this morning. I hope you get it figured out soon.

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Gfresh404 Enthusiast

"Casein has a molecular structure that is quite similar to that of gluten. Thus, some gluten-free diets are combined with casein-free diets and referred to as a gluten-free, casein-free diet. Casein is often listed as sodium caseinate, calcium caseinate or milk protein. These are often found in energy bars, drinks as well as packaged goods. A small fraction of the population is allergic to casein, a cow milk protein that can sometimes have allergenic properties." - Wikipedia

This is why most people have issues with both gluten and dairy, lactose is not always the reason to blame. I experienced a lot of the same issues you just described when I would consume milk and not gluten! I fell like a was going to pass out a couple times, had heart pulpitations, I felt so bad I almost started to think it was a milk allergy. But now I am thinking it was just severe lactose and/or casein intolerance. Nearly ten months later, I do fine with milk protein but still have some issues with lactose.

So, I am sorry to say but it sounds like you're going to have to try and give both of them up. It is really not that bad once you find alternatives.

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ironspider33 Rookie

I initially thought i was just dairy intolerant. Lost some weight real quick and felt better, but still felt like crap a lot. my understanding now is, that the celiac derstroyed any ability my body had to digest milk or dairy. it may come back depending ont he damage.

Howev er, i use goat's milk now. it's awesome. i can't tell the difference, but apparently my wife thinks its horrible smellign and tasting. soy makes me sick. regardless, give it a shot. same with the marble goat cheese you can get.frikkin pricy but no wi eat more frutis and vegtables than ever before and feel FANTASTIC. My doctor wants be to go fer the scope, but i have decided that i can't stomach (haha) any gluten anymore. regardless fo what teh scope may tell. THere is no cure, only lifestyle of gluten free food. Thats the way i see it.

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Sparkle1988 Rookie

Hey guys,

Sorry for taking so long to reply. Okay so I've done some more experimenting.... I tried gluten again and that was definately a bad idea!!! All my symptoms came rushing back around one hour after eating it. Anyway I went to the doctor today for a lactose intolerance test (I need to go back with a stool sample :huh: ), but what I am wondering is, should I be back on lactose for a few days before I take a stool sample to the doc? If so is two days enough time? I have been off lactose for around one to two weeks so far. They also took blood to test me for cows milk allergy.

Thanks for your help :)

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    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
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      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
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