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

are these possible symptoms? (persistent brain fog, headaches, etc.)


Triad

Recommended Posts

Triad Newbie

Five months ago I developed symptoms. I felt a tired, low energy, and in the head not feeling all there. A slight sore throat coming on, the feeling you get when you're *about* to get sick. Problem was, I never really got sick (no cough, no runny nose, no fever) and this "almost sickly / tired / foggy feeling continued." For days. Weeks. Months.

I went to the doctor. Tests came back normal for things like thyroid checks, vitamin B12, mono, Epstein-Barr, etc. The only thing was my Vitamin D that was insufficient at 23 (30 is normal). I took Vitamin D pills and now my level is 36. The symptoms continue. Some are less and others are more, but the overall feeling is definitely still there. Over the weeks of taking the pills, I'd feel better for a few days, then worse for a few days. Rinse, repeat.

The primary symptom during this whole time is what I call brain fog. I see the term thrown around and I don't know if it's the same as what other people say it is but generally I use brain fog because it feels like my experience is clouded in my head. Like having a layer of cloud in your brain fogging things up. Physically it feels almost like a headache, but not quite. It feels almost like being dizzy, but not quite. It feels like tiredness and extreme exhaustion, but that has lessened in recent months and it feels more like a headache. Sleep doesn't change it. There are no noticeable patterns. Even when it's not severe, I feel like it's "always there," my head never feels fully clear. Seems to come in waves. I might go 3-5 days without a severe episode, then it is severe for 3-5 days. Or it might show up in the middle of a day and continue for the rest of that day.

Some symptoms came and went: most notably temperature extremes: night sweats, or feeling very cold and shivering. These were quick episodes and stopped after the first month. They happened maybe less than 5 or 8 times. Maybe it's unrelated. The sore throat died down in recent weeks. But I do consistently get cold extremities, which I never used to get. And dry lips, which I also rarely got and only in the winter.

And new symptoms appeared in the first month: weakness / feeling of internal 'wobbliness' in my muscles, particularly in my thighs. Not 24/7 but sometimes, kind of like the cycles from before. It wasn't involuntary movement. But I definitely could feel weakness / wobbliness. This has died down in recent weeks. One night I felt tingling on my hands, but that symptom never returned. 

MRI results are normal. With the exception of something my neurologist described as something about the white matter that is part of normal aging (I'm in my mid-30s), but can appear in people with migraine headaches. I think I will talk with him again to discuss this further because I do not really understand it, but he assured me the MRI was normal. I felt the 'brain fog' prior to and while getting the MRI (symptoms at medium severity).

So here I am today, feeling about the same with brain fog / headaches and pretty much always feeling like something's a bit off, like feeling cloudy.

I can still do things, exercise, run, go out with friends. But the brain fog / headaches sometimes really kick in sometimes, it seems like in phases.

Then I read about gluten sensitivity. I see symptoms like 'brain fog' and headaches and wonder if it might be related. I do think at times after eating heavy meals the fogginess / extreme tiredness came on. But there are days where I eat gluten in cereal and I don't notice an increase in symptoms. Like I said before it comes in waves. 3 days at a time or half a day or 2 days. It's not like after every meal 30 minutes later I feel it then it goes away. But perhaps it's related to *how much* gluten I eat.. My doctor said he does not think it is a gluten issue, but that I can try going gluten free for a few weeks to see if symptoms improve. I'm currently tracking my symptoms and food intake to see if there's a pattern.

So I'm just wondering if anyone else here experiences these symptoms and if you think it might be a gluten issue.

Thank you for reading.

 


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



Celiac.com Sponsor (A8-M):



Skiangel Newbie

Yes. I had most of the symptoms you spoke of. 15 months of tests after test.  No one could figure it out. Then A naturalpath tested me for celiacs and then tested my iron/ferritin. Came back with celiacs. My initial blood panels all came back ok (regs blood testing, not celiac specific) so docs never looked at my iron or ferritin. My ferritin came back at a 6 which is really low.  Most of my symptoms were actually from severe iron deficiency. Five weeks into taking iron and I am finally starting to feel better. I am also now gluten, dairy, soy, egg and peanut free at the moment. 

bread or alive Newbie

Hi Triad,

I have been suffering from brain fog for nearly a decade.  I was diagnosed with systemic lupus almost twenty years ago and that is a fairly common symptom of lupus, according to my rheumatologist.  It got so bad that I had to retire from teaching high-school English.  First, I had difficulty remembering names but seating charts helped a lot.  Then, I would have a word "on the tip of my tongue" but couldn't access it.  It was more than embarrassing - I felt completely incompetent and humiliated.  The brain fog plus the physical symptoms were just too much to deal with so I retired early.  I suspect that when gluten triggers my immune response, the fog becomes thicker.  For example, I ingested gluten at Thanksgiving (from cross-contamination) and for a week I was calling my only child by the dog's name.  Or my sister's name.  Or "Ummmm...kid!"  It helps when you and your family can have a sense of humor about it - but when it affects your career, it's hard to find the humor.  

You mentioned night sweats and that was one of the symptoms I had that led my GP doc to test for lupus antibodies. You also mentioned "cold extremities."  Reynaud's Syndrome is when your fingers and toes get cold/go numb/tingle essentially because of lack of circulation.  Look at your fingernails: do they have lines or ridges going lengthwise?  That's a sign.  My GI doc told me that his celiac patients often have Reynaud's (I do) and so do lupus patients.

 You know your own body and your family history (because autoimmune diseases tend to run in families) and, if you believe that there is something the doctor is missing, then keep pushing to get a proper diagnosis.  All autoimmune diseases are tricky; it usually take a few years to put a label on what you are dealing with (on the flip side of this, if you want to purchase life and/or disability insurance, do it before your medical records show that you have a chronic condition). 

Try keeping a log of the foods you eat, your activity and stress levels, your symptoms.  Sometimes seeing it in writing can help you and your doctor clarify exactly what is going on and when and how severe.  Good luck and God bless.  Hang in there.

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. - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Test interpretations

    2. - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Test interpretations

    3. - Aretaeus Cappadocia commented on Scott Adams's article in Spring 2026 Issue
      1

      How Social Media Algorithms Are Fueling Gluten Anxiety: TikTok, Reddit, and Instagram Trends

    4. - Aretaeus Cappadocia commented on Scott Adams's article in Spring 2026 Issue
      4

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    5. - Scott Adams replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Test interpretations

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

    • Total Members
      133,659
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Dr. Gunn
      Please review and approve. Thanks! Shelly Gunn MD
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
×
×
  • 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.