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

Newly Daignosed


Guest katzmeow21

Recommended Posts

Guest katzmeow21

I don't seem to have the typical symptoms only. I usually suffer from pretty severe constipation, a toxic like feeling throughout my whole body, insomnia{not being able to stay asleep} and when I wake up a lot of times I feel anxious or depression in waves. Also have nights where I feel like my body is kind of buzzing or can't relax{not that my mind is feeling that way). Nausea, fatigue ,bloating after eating, brain fog have all been huge my whole life. Every once in a while I get diarhea or irritable bowel type cramping but this is more rare for me. Just recently I have been getting muscle twitches that are random and can occur anywhere but a lot more in the legs, a buzzing feeling in the legs, weakness in legs after slight exertion at times and yet other times I can work out normally and does not seem to bother me Achiness deep in the calf muscles and aching in the heels. My wrists will also feel this weak type achy feeling...

I am especially concerned about all this twitching stuff.....


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

These ARE very common symptoms. Fatigue is actually the most common symptom. There are over 200 symptoms with celiac and nobody is the same.

I had alot, but not all,of the same symptoms you do. Nausea was my #1 symptom along with anxiety but I did have some constipation, sleep problems, lack of energy-fatigue,etc.

When were you diagnosed? Are you gluten free yet?

This is definitely an awesome place to be for info and support. Welcome :D

Rachel--24 Collaborator

I have all the symptoms you mention but not the twitching. How long have you been on the diet? The first couple nights I could hardly sleep at all and I would wake up with waves of anxiety like you described. It was like I could feel it surge through my body or something. I don't get diarreah or cramps often either. I get that wierd buzzing once in a while too..its mostly in my hands.

Guest katzmeow21
These ARE very common symptoms. Fatigue is actually the most common symptom. There are over 200 symptoms with celiac and nobody is the same.

I had alot, but not all,of the same symptoms you do. Nausea was my #1 symptom along with anxiety but I did have some constipation, sleep problems, lack of energy-fatigue,etc.

When were you diagnosed? Are you gluten free yet?

This is definitely an awesome place to be for info and support. Welcome :D

<{POST_SNAPBACK}>

Thanks for your response. I know some of the symptoms but the one that's freaking me out is the muscle twitching. Is that one too?

Yes, I am gluten free as of one week ago.

MJ

nettiebeads Apprentice
Thanks for your response.  I know some of the symptoms but the one that's freaking me out is the muscle twitching.  Is that one too?

Yes, I am gluten free as of one week ago. 

MJ

<{POST_SNAPBACK}>

This is such a great forum. I mentioned it to my dr today (my yearly) and he was glad that I was here taking more control of my health. Anyhow, the celiac disease causes malabsorption, which means your body isn't getting enough nutrients. You could be very low in calcium and potassium. Every now and then I'll get those twitchings and up my potassium some until they go away. How long do you think you had celiac disease before it was diagnosed? You could have gone a very long time without getting the proper amount of nutrients into your body. It will take awhile before your body will act more normal, depending on the severity of damage to your small intestine. Read some more of the threads here to get an idea of where cross-contamination possibilities exist. I've lived with this for 9 years and just recently joined this forum. It's been very helpful in becoming more aware of my surroundings. My husband is nonCD, so I'm wiping down counters whether they need it or not and washing my hands much more frequently and keeping them away from my face. Give yourself time, your body has a lot of healing to do.

deb.h. Rookie

the twitching that I get is mainly in my legs and it is tiny little fibers and feels like popcorn popping all over my legs. A little like when your leg falls asleep andit starts to wake up and youget all the tingling. i can get it mildly when I am inactive but it really comes on after I have worked out and after I have gone for a good long walk. It really bums me out because when I went gluten free it disappeared but actually I stopped working out for a year and a half so I know the gluten helped tremendously but not sure if it took it away completely. i haven't asked my doctor about it yet but I know three years ago when it was bad he tested alll my potassuim magnesium, calcium and sodium blood levels and they were all normal.

I used to also get this weird feeling in the back of my legs like if you were sitting out on a plastic chair in the summer andyou tried to get up and the chair would stick to you andyo had to peel your legs off of it. It was the weird feeling the would ocure for a few minutes after that.Tingling of some sort. I would cI used to have terrible times of exhaustionand muscle weakness. I was constantly be touching the back of my ldgs to make it go away. i couldn't wear anything that was remotely tight in pants or it was worse or definitley more noticible.

I used to have terrible times of exhaustionand muscle weakness. i am telling you all this because i wantd to let you knw that your symtoms are not unusual for celiac disease or Gluten Intolerance which is what I have.

i was glutenized last night and had the insomnia and buzzing in my body that you describe.

I am beginning to figure out that that I think there is more gluten getting into my diet that I thought. last night my whole body ached liked i had a flu. i had a few bites of a date square!!!! i don't know what I was thinking. Sometimes I can't beleive I can be so thoughtless. i really wasn't thinking that this is gluten I am eating. all I thought was OH ILOVE DATE SQUARES. a few bites later it clued in but it was two late and i have been on the diet for almost three years!!

anyway the point is these symptoms will subside with a gluten free diet and supplementation. it took about 8 or 9 months to be gone but I saw improvements immediatley!!

misskris Apprentice

...I used to get twitching in my eyes. Weird. But it passed after being completely gluten-free for a few months.


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



Celiac.com Sponsor (A8-M):



Guest katzmeow21
the twitching that I get is mainly in my legs and it is tiny little fibers and feels like popcorn popping all over my legs. A little like when your leg falls asleep andit starts to wake up and youget all the tingling. i can get it mildly when I am inactive but it really comes on after I have worked out and after I have gone for a good long walk. It really bums me out because when I went gluten free it disappeared but actually I stopped working out for a year and a half so I know the gluten helped tremendously but not sure if it took it away completely. i haven't asked my doctor about it yet but I know three years ago when it was bad he tested alll my potassuim magnesium, calcium and sodium blood levels and they were all normal.

I used to also get this weird feeling in the back of my legs like if you were sitting out on a plastic chair in the summer andyou tried to get up and the chair would stick to you andyo had to peel your legs off of it. It was the weird feeling the would ocure for a few minutes after that.Tingling of some sort. I would cI used to have terrible times of exhaustionand muscle weakness. I was constantly be touching the back of my ldgs to make it go away. i couldn't wear anything that was remotely tight in pants or it was worse or definitley more noticible.

I used to have terrible times of exhaustionand muscle weakness. i am telling you all this because i wantd to let you knw that your symtoms are not unusual for celiac disease or Gluten Intolerance which is what I have.

i was glutenized last night and had the insomnia and buzzing in my body that you describe.

I am beginning to figure out that that I think there is more gluten getting into my diet that I thought. last night my whole body ached liked i had a flu. i had a few bites of a date square!!!! i don't know what I was thinking. Sometimes I can't beleive I can be so thoughtless. i really wasn't thinking that this is gluten I am eating. all I thought was OH ILOVE DATE SQUARES. a few bites later it clued in but it was two late and i have been on the diet for almost three years!!

anyway the point is these symptoms will subside with a gluten free diet and supplementation. it took about 8 or 9 months to be gone but I saw improvements immediatley!!

<{POST_SNAPBACK}>

Thanks so much for your reply. Yes, like popcorn popping. What a great explanation. My twitching seems to be worse upon resting. And yes , especially after exercise but even then it still happens more when in bed at night....

The buzzing stuff too was freaking me out. I have only been gluten free one week and have probably had symptoms for the past 15 years.....mnnn... But the twitching just the past few months but it is progressive thus far.

I started the insomnia stuff with a low body buzz a long time ago and it would come and go. I used to try and attribute to something I had eaten but could not make a good connection as I never considered gluten :unsure:

I was really concerned as my dad got MS around my age and I now really consider that he was probably gluten intolerant and never diagnosed and it became something worse over a long period of time. He still lived to the ripe old age of 83 but did suffer from his 50's.

Anyway I feel more positive now :)

I am starting to also do EFT which is a kind of energy working technique that works with all kinds of emotional and physical issues.

Have already felt some benefits from that as well.

Again thanks and lets keep in touch :)

a

  • 5 years later...
ocean girl Newbie

I am new here too. I am self diagnosing myself, but did get the blood panel....and waiting on the results.

My symptoms are: some gastro...right flank pain

anxiety/dizziness was the beginning

and one nice panic attack which turned

into depression

muscle twitching mainly in my legs

small facial acne

I sort of went gluten free this fall..when the gastro problems worsened. Little did I know I was doing my body partial good...having no idea about celiac/gluten intolerance. Was actually thinking I had an over growth of yeast in my stomach and was eating the anti-yeast diet. I lost 15lbs. from Oct. to Dec. the anxiety turned from that to depression by Dec. In Jan. it had lessened as I started a mild antidepressant. My doctor was not putting any of the stomach issues with the anxiety/depression even though they started at the same time. I began having some muscle twitching in Jan. in my legs...it did not last long. In Jan. my ob/gyn said I should start eating more normal..I had been having some issues there as well..but was better. I started bread and cereal in Feb. for 5 days...my right flank pain came back, I became constipated, my face broke out again and my dizziness came back 2 weeks after that 5-7 day binge. I had the blood panel test run that Wed. and have been gluten free since. The dizziness came back and muscle twitching right after that point. On day 4 of no gluten my face began to clear up again...really going heavy with it this time. I now know I was consuming gluten when going out to eat and some in my house. The dizziness is just lessening now again after day 6, but I still am having some muscle twitching...like maybe 1 every hour...vs. almost constantly after reglutening.

I told my doctor that I am curious to see the results of the blood panel test....but regardless I have made up my mind and know it is the gluten. I also was tested for vitamin deficiences as I tested positive with my ob/gyn for Vitamin D deficiency. I do want to make a gastro appt. that has a nutritionist with them to make sure I am taking the right amount of vitamins to continue my healing.

This has all been very overwhelming to me and exciting at the same time that I am piecing it together after a very difficult 6 months.

happybfree Rookie

Thanks for your response. I know some of the symptoms but the one that's freaking me out is the muscle twitching. Is that one too?

Yes, I am gluten free as of one week ago.

MJ

That's funny. I used to also have muscle twitching, mainly in my eyes. I never thought too deeply about it because it would come and go and I thought it was normal. But now that I think about it, it hasn't happened to me since I went off gluten! Cool!

I think I've had all the symptoms you mentioned. The biggest killer was the nausea.

Good luck with the diet! The new life is amazing!

Fire Fairy Enthusiast

I too had several of the same symptoms. My legs twitched at night but in my case they actually jerked. I actually kicked my poor cat off the bed one night. :( Thankfully it's stopped completely since going gluten free November 2nd last year.

glutenfr3309 Rookie

i definitely had majority of those symptoms you described, except for the twitching. the fatigue was one of the first things that went away for me- i am now almost 10 months gluten-free. i sometimes will still get restless at night as if my legs/body won't relax. for some reason when i drink water it helps- not sure why though.

good luck! in time things will get better!

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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,422
    • Most Online (within 30 mins)
      7,748

    HAUS
    Newest Member
    HAUS
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.