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

Could These Be Symptoms Too?


dfish

Recommended Posts

dfish Apprentice

Hi folks! I recently had my diagnosis of celiac confirmed through Enterolabs; prior to that, I was eating gluten for a gluten challenge that was scheduled with my doctor. Since getting the Enterolab results back, however, I have ceased the gluten challenge and stopped eating gluten. I have also stopped eating casein. However, I am having some major problems and am just wondering if this could be related to celiac. I have also been diagnosed with GERD in the past and believe some of this is GERD related, but not all of it. I have been feeling just downright horrible these last two to three weeks. I have a cough that will not go away, feel extremely fatigued (cannot seem to stay awake longer than two or three hours), a "foggy" feeling in my brain like I just can't concentrate and almost like I am perpetually dizzy, some anxiety where my heart starts racing and I get some pretty significant pains in my chest, a feeling like I can't swallow, and some water retention/swelling. I have been to the doctor and have had every heart/lung test imaginable, all are normal with the exception of a bit of a respiratory infection that I am taking antibiotics for. The worst part is the feeling that I am just "off", that my brain and body are in total shutdown mode. I've missed almost two weeks of work because I can't even hardly drag myself out of bed I'm so exhausted and foggy feeling. Can exposure to gluten and casein, like in a challenge, cause this over time? I've only been gluten free for a week or so and realize I wouldn't start feeling better that soon, but are these symptoms that could even possibly be caused by gluten exposure? I have to get out of this haze/fog/sick thing or else I'm going to lose my job and I'm not sure what to ask the doctor to look for any more since we've tested for pretty much everything already!

Thanks much!!


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Fatigue is THE most common symptom of celiac. Mental fogginess sort of goes along with the fatigue. Have you been tested for anemia? The dizziness also can be a celiac symptom, although there are many other causes. The anxiety and racing heart could be happening simply because you're worried about what's going on.

I was very ill and so fatigued I could barely walk by myself. I was so weak I ended up missing 10 weeks of work and even then couldn't work full days for a while.

richard

nikki-uk Enthusiast

My husband had all of your symptoms,in particular the difficulty swallowing/sore throat,and swelling/water retention in his feet & legs,extreme fatigue.

Hopefully,keep at it.It's probably gonna take more than a week to start undoing some of that damage.

I know once you get your diagnosis-and get your head round a gluten freediet it can be disappointing not to see immediate results-hang in there!

stef-the-kicking-cuty Enthusiast

In medicine school I learnt that swallowing problems and cough that won't stop could be one additional sign of a heart attack. But since you've had every test with your doctor, you should've ruled that out. It was just one thing I thought about firsthand, when I started to read your thread. But being dizzy, "foggy", fatitgued and having the GERD. I had that, too. It should get better after a while. If not, see your doctor again.

Stef

tarnalberry Community Regular

Gluten can definitely make you tired and brain foggy, but don't discount how much a respiratory infection can bring you down as well. If it's making it hard to breath, it can really smack your body down! :-)

I would encourage you to continue to be patient with the diet, and try to get _some_ exercise (even if it's just 15 minutes of walking before a nap) to help you feeling better sooner.

ianm Apprentice

I had all of the symptoms you've described and it will take some time. It does get better. The fatigue and brain fog are gone now but it took 3 months to start feeling better and a year before I was healthy. You didn't get this way overnight and your body won't heal overnight. We've all been there so keep at it because it is worth it.

Lesliean Apprentice

While it could always be something else and so its great that you have a good doctor, all your symptoms sound like those Celiacs have. I presented to my doctor with trouble swallowing (GERD), trouble breathing (vocal chord and throat swelling), coughing and clearing (increase in mucus produced by the throat as a result of the inflammation in the throat) constantly. I was diagnosed with laryngopharneal reflux but I diagnosed the Celiacs and was confirmed by Enterolab. After 92 days (Yepee) gluten-free the throat swelling coughing congestion clearing and trouble breathing is gone completely. I think my entire gastro lining from mouth to butt was inflammed by gluten.

I hear on the boards racing heart beat a lot and while it could have to do with thyroid function, I also think it is an independent symptom to the gluten. My heart beat irregularly (I thought I was going to die) and now it beats regularly again solely becuase of living gluten-free.

The brain fog and fatigue are also common symptoms. I hope your symptoms go away with the GFD soon. They really don't sound like any fun at all. :o

Leslie


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



Celiac.com Sponsor (A8-M):



rmmadden Contributor

I get the fatigue, dizzyness and heart racing sometimes too. I haven't quite figured out what causes the symptoms but it is usually in response to something I've eaten. I took the York Lab FoodScan test and am awaiting the results (They are very slow!) to see if I am alergic to anything else beside gluten/wheat.

It's real easy to think positive when you are feeling well but, try and keep your chin up when times are tough. Try and keep your focus on the ultimate goal of healing your intestine's and hopefully in time you will see improvement and feel better.

Best Of Luck!

Cleveland Bob B)

debm5 Newbie

Hello,

O.K. I'll try to keep this short. 3-19-04 I had a spell to where I could not talk,stand, focus. Body movement same as a seizure.

ER stated psuedo seizure(fake). I was treated awful by the er doctors. They told me I could control this. I was given a relaxer and sent on my way. After being through the spell, and medicated, they offered no wheelchair or their arm to hold onto. I met my hubby in the lobby from there. I am still on doctors orders not to drive, or go back to work by my primary doc. I'm to unpredictable

I am still having many spells. hospitalized twice, er twice. test came back neg for epi, m/s, lupus etc.One doc told me it was due to mental stress,anxiety. Like we all do I do have my share of stress. I have read on this site on side effects.

Seizures & anemia can be an issue. Has anyone else been through something like this. PLEASE let me know!!

Debbie

foodphobic Newbie

I am still fairly new at this. My record for staying gluten-free is 13 days in a row without being sick. When I eat the wrong thing, I have all the symptoms you listed. I have trouble waking up, staying awake, functioning mentally, heart palpitations (especially when I am lying down), and I turn into an absolute beast for about 24-36 hours. I got very concerned, because I thought I was getting worse instead of better. But one kind person responded that the reaction is worse when you start to heal, so I'm hanging in there.

As I continue to get better at this, I have lost the reflux (GERD) altogether. I haven't had the palpitations as much. I sleep better. I still get tired easily even though my iron is fine, but I hope that will go away eventually as well. But when I eat the wrong thing, for at least 24 hours, I am a mental, physical and emotional train wreck. I have muscle cramps, joint pain, headaches, dizziness, and I suffer from stupidity. I lock myself out of places, pay for my groceries and start to walk away without them, etc. It's embarrassing and very frustrating. But, then I will be chipper and happy the next day and every day until I slip up again.

The sore throat might be the result of allergies. I started having lots of allergies for several months before I was diagnosed which I never had before. I have 2 long-haired indoor cats and a horse that I ride through fields of weeds, so allergies were never a problem before. Suddenly, my head was always stuffy, I got ear infections (which I never had before) which often resulted in temporary vertigo and earaches, sore throats, itchy eyes and ears, sneezing. The whole allergy thing. I still have those symptoms, but not as often or as severe. My immune system is working overtime, so all sorts of other things are slipping in and taking hold. I am hoping some of this will clear up as I stop providing gluten to my immune-system. I'm on day 6 of meeting and, hopefully, beating my 13-day record. I was just thinking how wonderful it is to go to bed without any strange abdominal activity or pain, and waking up not feeling like I want to punch someone (anyone) in the nose.

My newest thing is my hands. I have developed dry flaky skin between my fingers, and my rings create red bands of tender, flaky skin around my fingers. Abandoned the rings, and now I'm thinking I need to try a different hand lotion. Every day is a new adventure. : )

Wendy (aka foodphobic)

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   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.