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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. ;)

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.

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 :)

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.

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.

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.

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.

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
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
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    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
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