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

Speech Problems - Following Through With Sentences

Lisa

By Lisa
in Related Issues & Disorders

Recommended Posts

Random-Guy Newbie
Random-Guy
Posted

I'm not sure if Lisa or anyone else on this thread still posts here since i don't post here or even lurk here often.

I have celiac, and have been gluten-free for almost 4 (or maybe 5) years. Over the last year and a half I started noticing that I was having trouble with word recall. Over the last few months I've noticed it's gotten really bad. I've also noticed memory problems, a few pronunciation problems, not being able to finish a sentence, and typing problems.

My GP has me doing b12 shots. I don't have much faith in my GP's diagnostic skills.

My endo, who i trust and respect, said i should see a neurologist to see why it's happening. He said it might be caused by celiac.

So i was wondering if anyone fro this thread had any updates for how they're doing with these types of 'brain fog' issues.

thanks

and happy gluten-free thanksgiving!

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

Celiac.com Sponsor (A8-M):


  • Replies 57
  • Created
  • Last Reply
Lisa Mentor
Lisa
Posted
  • Author
I'm not sure if Lisa or anyone else on this thread still posts here since i don't post here or even lurk here often.

I have celiac, and have been gluten-free for almost 4 (or maybe 5) years. Over the last year and a half I started noticing that I was having trouble with word recall. Over the last few months I've noticed it's gotten really bad. I've also noticed memory problems, a few pronunciation problems, not being able to finish a sentence, and typing problems.

My GP has me doing b12 shots. I don't have much faith in my GP's diagnostic skills.

My endo, who i trust and respect, said i should see a neurologist to see why it's happening. He said it might be caused by celiac.

So i was wondering if anyone fro this thread had any updates for how they're doing with these types of 'brain fog' issues.

thanks

and happy gluten-free thanksgiving!

Well yes, Lisa is still around :rolleyes: , after almost four years.

Ninety-nine percent of my issues, which began this thread are gone. I still have some memory issues, but I don't necessarily attribute that to Celiac.

I do keep up with several people in this tread, and some have ongoing, collateral issues and others are doing quite well.

Random-Guy Newbie
Random-Guy
Posted
I'm not sure if Lisa or anyone else on this thread still posts here since i don't post here or even lurk here often.

I have celiac, and have been gluten-free for almost 4 (or maybe 5) years. Over the last year and a half I started noticing that I was having trouble with word recall. Over the last few months I've noticed it's gotten really bad. I've also noticed memory problems, a few pronunciation problems, not being able to finish a sentence, and typing problems.

My GP has me doing b12 shots. I don't have much faith in my GP's diagnostic skills.

My endo, who i trust and respect, said i should see a neurologist to see why it's happening. He said it might be caused by celiac.

So i was wondering if anyone fro this thread had any updates for how they're doing with these types of 'brain fog' issues.

thanks

and happy gluten-free thanksgiving!

Lisa,

I'm so happy to hear that. Your symptoms sound exactly like mine. You've given me hope.

Any thoughts on what may have helped?

thanks

-RG

Lisa Mentor
Lisa
Posted
  • Author
Lisa,

I'm so happy to hear that. Your symptoms sound exactly like mine. You've given me hope.

Any thoughts on what may have helped?

thanks

-RG

In my case, it was the b12 shots that I had once a week for a month, then once a month for six, that stopped the brain fog and a good healthy diet.

I know that I have found myself, at times, being a little lax about the diet after five years, but I never cheat with intent. I do not get sick after cross contact or accidental ingestion. But, that's just me. My theory is that after years of healing, it would take repeated exposure, over an undisclosed time frame to reoccur the damage, where I would be symptomatic.

Are you careful about everything? I do know that long term use of antacids effects your B-12 levels. After four or five years gluten free, this might not be a gluten issue.

I would encourage you to continue to seek medical help.

Random-Guy Newbie
Random-Guy
Posted
In my case, it was the b12 shots that I had once a week for a month, then once a month for six, that stopped the brain fog and a good healthy diet.

I know that I have found myself, at times, being a little lax about the diet after five years, but I never cheat with intent. I do not get sick after cross contact or accidental ingestion. But, that's just me. My theory is that after years of healing, it would take repeated exposure, over an undisclosed time frame to reoccur the damage, where I would be symptomatic.

Are you careful about everything? I do know that long term use of antacids effects your B-12 levels. After four or five years gluten free, this might not be a gluten issue.

I would encourage you to continue to seek medical help.

I'm very careful about being gluten-free. I'm going to take the b12 weekly. I also got a prescription for fish oil and vitamin d and some other stuff I can't remember (of course).

So far I've been able to hide it at work, or at least hide the extent of it. If it gets worse, I won't be effective at my job. That's scary, especially in this economy.

I've got a first appointment with a neurologist in 3 weeks. Until then, I'm trying to not get too worked up - but it's not easy.

Korwyn Explorer
Korwyn
Posted
Well yes, Lisa is still around :rolleyes: , after almost four years.

Ninety-nine percent of my issues, which began this thread are gone. I still have some memory issues, but I don't necessarily attribute that to Celiac.

I do keep up with several people in this tread, and some have ongoing, collateral issues and others are doing quite well.

Wow....Lisa I'm glad. In the 7 months I've been on this forum and gluten-free I never saw this thread. It has given me great hope since I've actually gotten quite freaked out. The brainfog and speech and memory things that others have mentioned came for me after going gluten-free (like they have for a couple other people) and have been quite bad at times, then they get better, the foggy again and it has been actually quite scary. I'm quite relieved to know that I'm not the only one and that others have had the same thing happen and have gotten better over time.

I wonder if it is a long term withdrawal issue from the opioid effects some research has show that gluten has on some brains.

Lisa Mentor
Lisa
Posted
  • Author

They say that it can take up to two years (totally gluten free) for a full recovery. Nero symptoms seem to be the last to come around, after the digestive issues.... (When the bathroom was five seconds away and you needed to be there in four :unsure: )

Long after I began the diet, I had this really funky but very real, fear of bridges. I could only walk down a dock by holding someone's hand and I have been around boats, jumping on and off, all my life.

One day, I realized that those issues were gone. So there is hope and keep on doing what you're doing. I live a very normal life and do not feel deprived. Eating out can be a pain, but it's a small concession for feeling well. ;)

Good luck to you all.

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

Celiac.com Sponsor (A8-M):


MaryJones2 Enthusiast
MaryJones2
Posted
One day, I realized that those issues were gone. So there is hope and keep on doing what you're doing. I live a very normal life and do not feel deprived. Eating out can be a pain, but it's a small concession for feeling well. ;)

Good luck to you all.

I could not agree with you more Lisa.

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. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.