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

Celiac Disease And The Brain

Bigpete757

Recommended Posts

Bigpete757 Rookie
Bigpete757
Posted

I am interested in learning more about the connection between celiac disease and the brain. I am waiting on test results, but think I had undiagnosed gluten problem for years and it has gotten so bad that it has affected my brain lately. One of the reasons probably has to due with the vitamin and minerals you need to support a healthy brain that I am lacking.

I am not sure of all of them or how much each one matters, but if you could help with with that information it would be great. This is a list that I have so far.

b-12

folate

b-6

Another reason for the brain issues could be coming from my anemia. I am taking iron pills, but think this is probably the only thing I can for this.

There are other factors I have been reading about such as glutmate playing a role. I just did a nutreval test and my glutamine/glutamate ratio was 37, which my doc thinks is very high. Do you know of any other important things I should consider between the celiac and the brain, that might help me.

Basically, I am trying to take whatever supplements I can and learn as much information I can about this subject because this could be a very serious situation for me. I am scheduled to see a neurologist soon to see check on a few things, but I think the issues I am having related to my brain are probably coming from the gluten problem.

I would appreciate any info you have on this subject. I was thinking of maybe getting a b-12 shot to see if that might help, or maybe mega doses of certain vitamins that I need for my brain to function properly. If you know anyone who knows alot about this issue, could you please point me in the right direction, or providing links to learn about this would be great as well.

And if I did see a specialist or doc on this subject, who would it be. I thought about a neurologist because they should know how various things affect the brain, but that could be hit or miss, and I thought about a nutritionist, but that could be hit or miss as well. Any thoughts?

Thank you.

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

Celiac.com Sponsor (A8-M):


nu-to-no-glu Apprentice
nu-to-no-glu
Posted

I'm not an expert, Iam just takingthe supplements my dr told me to, but the one he said would help with some of the "brain fog" is Acetyl-L-Carnitine. I haven't taken it yet as I am slowly introducing new vitamins. I would at least research it before adding anything myself, or ask a dr about it. Another idea, to find a specialist, would be to contact your local celiac sprue association chapter. Surely, they could help you find what or who you are looking for without attempting to visit many various drs.

Archived

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

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


  • Member Statistics

    • Total Members
      130,343
    • Most Online (within 30 mins)
      7,748
    Julie Ransom
    Newest Member
    Julie Ransom
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      This Roller Coaster Ride Needs to Stop

      By Ginger38 · Posted

      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      This Roller Coaster Ride Needs to Stop

      By Scott Adams · Posted

      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
×
×
  • Create New...