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

Help, Please

sputnik1

Recommended Posts

sputnik1 Newbie
sputnik1
Posted

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....

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

Celiac.com Sponsor (A8-M):


peanutbutterandjelly Newbie
peanutbutterandjelly
Posted

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!

mushroom Proficient
mushroom
Posted

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.

kareng Grand Master
kareng
Posted

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.

sputnik1 Newbie
sputnik1
Posted
  • Author

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

mushroom Proficient
mushroom
Posted

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.

sputnik1 Newbie
sputnik1
Posted
  • Author

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

https://www.celiac.com/forums/topic/57102-tiredfuzzy-swollenbloated-but-no-stomach-distress/

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

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 :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,961
    • Most Online (within 30 mins)
      7,748
    Noa
    Newest Member
    Noa
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.