Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Help, Please
0

8 posts in this topic

Hello. I know this discussion is over 3 years old, but I JUST found it and really need some help. I am a VERY active 30 year old. About 5 years ago I've started having these "episodes" of ridiculous fatigue, puffy face (under eyes), muscle cramps, distended stomach, gas and constipation. This coincided with me finding out I had HSV2 and I was blaming everything on that virus. I've now been on medication since forever and these fatigue episodes have continued. they come and go as they please, sometimes days, sometimes weeks and a few times as long as a month. If I try to push myself and workout while being derailed, I get acid reflex. I've been told it's depression, it's all in my head, i am overworked, over workedout.... but i know it to not be true. because after being ill for a week, i'll wake up one day and all will be normal and i'll be able to play soccer for 2 hours again - no problem. 

 

i've noticed that i get this when i stress or when i drink beer (even just A beer, i almost never drink) or eat some carbs or some sweet stuff. I've looked into cadida and been taking good probiotics to no avail.

 

I eat really healthy, no fast food, no carbs. but if i do eat something "off" or drink a beer.... ohhh here it comes, it's like i get hit by a truck and off i go, my brains fogs up and i lose any motivation for anything.

 

it appears that the posters here have similar problems, yet going gluten free hasn't really helped them. so what is the solution then ? it's been 7 years....

0

Share this post


Link to post
Share on other sites


Ads by Google:

Go and get bloods done, and go from there. While it might not help everyone, it might just help you :) Worth a shot to stop feeling this way, yeah? I know for me it is, just waiting on an endoscopy to officially diagnose/confirm, CAN NOT WAIT to start gluten-free!

0

Share this post


Link to post
Share on other sites

Have you ever been truly gluten free in 7 years?  It doesn't take much to keep the autoantibody factory in production, and one lapse (like a regular -- non gluten-free - beer) can start up a new, more active production line.  So before you say it is not gluten, you must be truly gluten free, OCD almost in being gluten free and avoiding cross-contamination (which comes from something as simple as taking croutons off the salad and then eating the salad!).  Give it a good strict trial, drink Redbridge or Bard's Ale or similar gluten free beer, and see how you feel when you are truly gluten free.

0

Share this post


Link to post
Share on other sites

Hello. I know this discussion is over 3 years old, but I JUST found it and really need some help. ....

I split this into its own topic as I felt that would be more helpful.

0

Share this post


Link to post
Share on other sites

One other "distinguishing" symptom is i get these tiny tiny bumps (sores ?!) on the inside of my bottom part of mouth not on lip, but from lip down. they come and go at times and only stay for a few hours, but i can't even see them in mirror they are so small, yet i feel them very much with my tongue. they are not 100% present for the time all the fatigue lasts, but they ONLY show up when i have this.

 

i'll do the gluten free, no doubt. However, what i was saying is that the member that had 100% of my symptoms also went gluten free and yet says his/her symptoms come out from time to time

0

Share this post


Link to post
Share on other sites




You mention posters having similar problems and gluten free not helping, but I can't find which posters you are referring to.  This must have come from the splitting of the topic, I guess.  So perhaps you can remind us.  Most people notice some difference when eating gluten free; very few have no changes unless they do not wait long enough for changes to occur.

0

Share this post


Link to post
Share on other sites

Hey Mushroom, yeah the topic was indeed split, sicne the original post was last update 3 years ago. but people there seem to share 100% of my symptoms. the damn CRAVING is my biggest downfall. I am not hungry and yet all i want is sugar and carbs. it's crazy. i fight and fight with myself and lose everytime to sweets. I'll go take out money from ATM just to go to vending machine and buy a King Size Snickers and this is coming from a guy that eats home made soup and buckwheat as 80% of the diet on normal days.

 

I doubt this gluten reaction because if something is BAD for you, why would the body keep craving it.

 

original post this way: yumummymy is the poster

http://www.celiac.com/gluten-free/topic/57102-tiredfuzzy-swollenbloated-but-no-stomach-distress/

0

Share this post


Link to post
Share on other sites

You think heroin is good for heroin addicts or alcohol is good for alcoholics? :ph34r:   Stuff becomes bad for you because you crave it and consume too darned much of it.  Sure sign of addiction.  We always become addicted to the stuff that's bad for us.  Lay off it :ph34r:   Go back to buckwheat and soup and feel better :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,551
  • Topics

  • Posts

    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
    • Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common. I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection.  It may provide some helpful info.  
    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined