Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Are These Celiac Symptoms?

Twitch

Recommended Posts

Twitch Newbie
Twitch
Posted

I joined the board hoping that someone could tell me if my symptoms are generally characteristic of Celiac. I am awaiting to get tested next week and am only looking for your own opinion and experience. If this is on the wrong forum, please direct me where to post this and I will delete it!

I have had stomach problems for years now, with chronic gastritis and constipation. I got to where this was manageable with the help of Nexium.

However, over the past number of months I started developing some serious (to me) neurological issues from aggravating sensory issues (bug crawling feeling, pins/needles, etc) to full blown full body/random twitching which is all day every day, primarily when I lie down or relax.

I also have bouts with Hypnic Jerks (ie sleep starts). Not the ones that wake you up once your asleep but the ones that cause you to jerk as you are falling asleep. When all of this started I went abour 4 nights without any sleep. They now wax and wane and are not as strong and constant.

I have now developed extreme fatigue. I wake up feeling as if I haven’t slept at all. I don’t know if this is from my body twitching throughout the night (which it does), or something else. My legs feel like jello most days. Also, I have what could be called brain fog and a feeling ‘spacy’ (for lack of better term) which is worse on some days than others but is just about every day now.

Also, around the time the twitching started I have dry mouth and chronic thrush which will not go away despite nyastin (sp?) and diflukin (sp?).

Other related symptoms are constant constipation, headaches, occasional rashes in same places (ie fingers, angles, toes).

Anyways, I had a nurse friend tell me of someone that come in with some of my problems and he ended up testing for Celiac.

Are you aware of neurological issues coming because of this? Also, what about the thrush?

BTW, an MRI w/o contrast didn't show anything. I had low vitamin D and slightly low iron. Also had blood traces in urine. Other than that, everything tested ok (Vit. b12, electrolytes, thyroid, lyme, etc.)

Thanks ahead of time for any help!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. You do sound like you are in the right place. Glad you are getting tested but be sure not to go gluten free until all celiac related testing is done. After your testing is finished you should go gluten free even if the tests results are negative. Give it at least a few months as healing can be up and down for the first couple of months. Ask any other questions you need to and I hope your feeling better soon.

Twitch Newbie
Twitch
Posted
  • Author

Thanks for your response.

Would it matter if I have only been gluten for four days before the test? This is about how many days it will be when I take the test.

Again, thanks.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for your response.

Would it matter if I have only been gluten for four days before the test? This is about how many days it will be when I take the test.

Again, thanks.

How long have you been gluten free? If it is more than a week then it may affect test results. If you have only been Gluten free for 4 days then just go back to it until the testing is finished including the endoscope if you are having one.

Twitch Newbie
Twitch
Posted
  • Author

How long have you been gluten free? If it is more than a week then it may affect test results. If you have only been Gluten free for 4 days then just go back to it until the testing is finished including the endoscope if you are having one.

I have been gluten free for only three days now. I should get a Doctors appointment Tuesday and thus test Tuesday. However, I started back eating regular tonight as you and others (as I have read) have suggested.

I would appreciate if others who are reading this would let me know if they have suffered from these neuro problems and if they ever went away (as I hope they will!).

Also, has anyone ever heard of oral thrush being related to Celiac?

Thanks.

Debbie48 Rookie
Debbie48
Posted

I have been gluten free for only three days now. I should get a Doctors appointment Tuesday and thus test Tuesday. However, I started back eating regular tonight as you and others (as I have read) have suggested.

I would appreciate if others who are reading this would let me know if they have suffered from these neuro problems and if they ever went away (as I hope they will!).

Also, has anyone ever heard of oral thrush being related to Celiac?

Thanks.

Neuro/muscular problems have been my main symptoms but some GI problems too. I tested positive on 1 out of 4 tests on blood work. Gene test came back with the celiac gene, category "high" risk for celiac. My biopsy was negative but it was done 3 months before celiac disease was suspected and only two biopsies were taken, so I don't put much stock in that.

I too am hopeful these horrible neuro/muscular symptoms will go away. I've only been gluten free for 3 weeks and so far no improvement. In fact, I feel a bit worse right now. Perhaps it gets worse before it gets better.

Hope you feel better soon!

What vitamins do you take?

Debbie

Aly1 Contributor
Aly1
Posted

I have had severe neuro problems - I've ended up in a wheelchair due to them - and yes, gluten intolerance and celiac can cause them. I can't comment on how long it takes to recover as I e only been gluten free for 3 months. What I can say is that this month I inadvertently glutened my self every day for 2 weeks (ugh!!!) and my neuro symptoms skyrocketed. I won't vote you with the details too much but will say they range from bone and skin pain, numbness, tingling, weakness, a "rubbery" feeling in my leg muscles, night-time spasms from my back down into my leg, foggy brain... Ok I'm starting to go on here. So absolutely, neuro symptoms are part of the picture. Just raise that for each of us it manifests in its own way.

As for oral thrush, I'm not sure, but I've spent a year and a half with a nearly constant vaginal yeast infection (candida) which interestingly began to resolve within the past month. Now that I glutened myself again, it's returned. So maybe there's a connection. I know that yeast infections occur frequently when the immune system is suppressed; being on gluten if you shouldn't be definitely stresses your immune system. So that might be the link...

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

Celiac.com Sponsor (A8-M):


Aly1 Contributor
Aly1
Posted

Ps. Sorry here's a lot of typo's in my post - it's the auto-correct on my iPhone! :/

pricklypear1971 Community Regular
pricklypear1971
Posted

I think quite a few posters here have had (or still do) have yeast issues. For some, the gluten-free diet is all that's needed to clear it up, others need a strict yeast/sugar reducing diet.

In my case, I was told I had a yeast infection under my arms/chest and it wasn't...it was Dermatitis Herpetiformis - the skin form of Celiac.

Get your testing done, then try a gluten-free diet. Won't hurt and just just may help tremendously.

cbonner Newbie
cbonner
Posted

Twitch: Some of the symptoms you list sound very much like sleep apnea.You might try to get a sleep study to see if you are a candidate for c-pap therapy.Sometimes we are dealing with multiple issues that make it more difficult to find a solution and sometimes doctors can't see or don't want to see the solution.Good Luck and take control of your own search!

  • 2 weeks later...
Twitch Newbie
Twitch
Posted
  • Author

Thank you all for your responses. I do not have time to answer all the questions or comment on your helpful advice but did want to give an update on my situation.

As noted above, I went Gluten free before my blood tests (no biopsy yet) and they come back negative (don't have numbers yet). I am not saying it is because I went gluten free but maybe that is not my problem. How common is a false negative? Could simply being gluten free for four or so days matter on a blood test?

However, I am on my second week (maybe third) of gluten free and my tongue may be getting better, I'll come back and let you know.

Also, I got a stomach virus and my neuro problems increased drastically. Have any of you experienced an increase in your symptoms due to sickness? This is strange if it is celiac related.

maximoo Enthusiast
maximoo
Posted

Aly1 yeast infections occur when there is an overgrowth of yeast therefore disturbing the balance. Years ago I was getting them every 2 mths or so until my dr treated my husband too. So yeast problems can be passed from partner to partner. She gave him miconozole oinment (longer lasting than the cream) & voila the problem resolved itself. Also eating too much sugar contributes to the overgrowth of yeast. Even tho celiac may seem like it could be a culprit (and perhaps it is in some cases) there are too many cases where no correlation exists.

ravenwoodglass Mentor
ravenwoodglass
Posted

However, I am on my second week (maybe third) of gluten free and my tongue may be getting better, I'll come back and let you know.

Also, I got a stomach virus and my neuro problems increased drastically. Have any of you experienced an increase in your symptoms due to sickness? This is strange if it is celiac related.

Are you sure it was a virus and not a glutening? After we go gluten free and accidently get gluten our reactions can become stronger. That would also account for the increase in neuro symptoms.

Twitch Newbie
Twitch
Posted
  • Author

Are you sure it was a virus and not a glutening? After we go gluten free and accidently get gluten our reactions can become stronger. That would also account for the increase in neuro symptoms.

Well I had a CBC done today and the Dr said it looked like I was fighting off a virus. Plus my wife had the stomach virus.

However, I had never thought of that before. Thanks for the info as I did not know that.

Also, I would appreciate if someone would comment and let me know if going gluten free about 3-4 days before a blood test could result in a 2 point something (which mine was) on the gluten blood test and yet me still be positive.

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,365
    • Most Online (within 30 mins)
      7,748
    NAC
    Newest Member
    NAC
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...