Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Must Be Gluten Intolerant?


Sparkle1988

Recommended Posts

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 ;)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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 :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to colinukcoeliac's topic in Gluten-Free Restaurants
      4

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    2. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      Pain in the right side of abdomen

    3. - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      4

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    4. - Scott Adams replied to colinukcoeliac's topic in Gluten-Free Restaurants
      4

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    5. - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      4

      Barilla gluten free pasta

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,480
    • Most Online (within 30 mins)
      7,748

    radster47
    Newest Member
    radster47
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      Hopefully @Cristiana will see this question, as she also lives in the UK.
    • knitty kitty
      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/
    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
    • Scott Adams
      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother at all? This is a good question, and if they can't actually deliver gluten-free food, should they even be legally allowed to make any claims around it?  Personally I view a gluten-free menu as a basic guide that can help me order, but I still explain that I really have celiac disease and need my food to be gluten-free. Then I take some AN-PEP enzymes when my food arrives just in case there may be contamination. So far this has worked for me, and for others here. It is frustrating that ordering off a gluten-free menu doesn't mean it's actually safe, however, I do feel somewhat thankful that it does at least signal an awareness on their part, and an attempt to provide safe food. For legal reasons they likely need to add the disclaimer, but it may also be necessary because on a busy night, who knows what could happen?
    • Scott Adams
      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease might have corn intolerance.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.