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

H-e-l-p-!

Melzo

Recommended Posts

Melzo Rookie
Melzo
Posted

Hello everyone. I have, what I consider, a huge problem. I am not sure if it is related to celiac disease or not..but I am hoping that possibly someone on this site has experienced this or can lead me in the right direction.

Some background information...I am 28 yrs old, have a 9 month old daughter. I was diagnosed with celiac disease in 2005 and on the gluten free diet. I am currently living with my daughter, husband and his parents. For the last year, I have been experiencing memory loss. Mostly short term. I will meet someone and if they would walk back into the room, I wouldn't remember their name. I may remember their face. When someone speaks to me, I find it really hard to focus and usually forget what they say immediately. For example, my boss will tell me to do something...and I immediately forget to do it. Even forgetting to write it down! This has caused me some embarrassment when he asked if I had completed a task and I have to tell him I forgot about it.

I am constantly forgetting where I have placed items...keys, cell phone, papers...etc.... It even affects my ability to speak...words I once used constantly I can't remember or pronounce correctly. My spelling has not been up to par either. For me to write this email takes tremendous thought.

I am just at a loss as to who to call....a neurologist, gastro, family physician?? Plus, I have no idea what the heck is happening to me. I first chalked it up to having a baby...however, my baby has slept through the night since she was four months old and I am even worse!

Any thoughts? Advice??? Thanks so much!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Hello everyone. I have, what I consider, a huge problem. I am not sure if it is related to celiac disease or not..but I am hoping that possibly someone on this site has experienced this or can lead me in the right direction.

Some background information...I am 28 yrs old, have a 9 month old daughter. I was diagnosed with celiac disease in 2005 and on the gluten free diet. I am currently living with my daughter, husband and his parents. For the last year, I have been experiencing memory loss. Mostly short term. I will meet someone and if they would walk back into the room, I wouldn't remember their name. I may remember their face. When someone speaks to me, I find it really hard to focus and usually forget what they say immediately. For example, my boss will tell me to do something...and I immediately forget to do it. Even forgetting to write it down! This has caused me some embarrassment when he asked if I had completed a task and I have to tell him I forgot about it.

I am constantly forgetting where I have placed items...keys, cell phone, papers...etc.... It even affects my ability to speak...words I once used constantly I can't remember or pronounce correctly. My spelling has not been up to par either. For me to write this email takes tremendous thought.

I am just at a loss as to who to call....a neurologist, gastro, family physician?? Plus, I have no idea what the heck is happening to me. I first chalked it up to having a baby...however, my baby has slept through the night since she was four months old and I am even worse!

Any thoughts? Advice??? Thanks so much!

What described is very typical of "brain for". In the beginning I had symptoms such as that included some gait problems and speech problems.. B-12 injection helped a lot.

Perhaps some blood work might indicate some vitamin or mineral defences that attributes to your problem.

I also assume that you are not living in a totally free of gluten household. You could be experiencing some major cross-contamination issues, such as shared pots and pans, wooden spoons....

missy'smom Collaborator
missy'smom
Posted

I'm afraid that I can't offer any advice but I can relate. 2 years ago, before I was gluten-free, my son was being tested for ADHD and I thought is this what it feels like? ALL the things that you described happened to me and STILL do but it is better now, a year into the gluten-free diet. I'm still not as sharp as I was or would like to be-I'm an English major and was a spelling bee winner when I was a kid but I can't remember words or spelling either. I'm 37 but can't call it old age yet. I've at times chalked it up to "use it or lose it" from being a mom or spending too much time around non-native English speakers as an ESL teacher. But as you said, it extends into forgetting objects(I usually say this comes from being around an easily distractable kiddo) and things people say. It probably drives people crazy but I often repeat what they say or summarize aloud to help me remember. I think that I notice it more on a regular basis now that I haven't been glutened in a long time and don't have all those other symptoms in the way. There's got to be some logical explanation for it. I personally don't worry about it. If people think I'm ditzy, I know I'm not. I let my worry rest on other things. But I understand how nerve racking it is to be a working mom and have to battle health problems on top of it. I've been there.

CarlaB Enthusiast
CarlaB
Posted

I don't know if this is a help or not, but I get the exact same type symptoms from my Lyme Disease.

If you're sure you are gluten-free and have been since 2005, then it may be from another condition.

kevieb Newbie
kevieb
Posted

i have these same problems and they seem to get worse with time. are you taking any meds? how do you feel in the mornings? you could be sleeping, but it might not be the right kind of sleep.

have you had follow up blood work to be sure your diet is gluten free?

darkangel Rookie
darkangel
Posted

Brain fog, short-term memory loss, inability to concentrate are all also symptoms of candidiasis - an overgrowth of bad bacteria in the gut... a very common state for those of us struggling with various digestive problems. It's not limited to celiac disease. You might want to take this online quiz to see how many symptoms match the candidiasis profile:

Open Original Shared Link

AndreaB Contributor
AndreaB
Posted

Love your picture of baby Samantha. She's a cutie. :D

I would recommend further testing with an alternative doctor who is familiar with lyme, metals, vitamins/mineral levels, and candida.

If you have metals then the candida would overgrow to protect you.

Other than the possible cc issues of where you are currently living, that's what I would suggest.

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

I agree with all the other suggestions.

You definitely should get this checked out.

The only other thing that I would say is to start taking B12 (gluten-free of course) right away, while you are doing all the other stuff. B12 will not harm you & if you need it - could be a life saver...

loraleena Contributor
loraleena
Posted

B-12 is a good idea. Make sure you use a sublingual brand that disolves under the tongue. Otherwise it is not absorbed well.

missy'smom Collaborator
missy'smom
Posted

THANK YOU Melzo for bringing this subject up, and others for your responses. I've been thinking this over and have come to the conclusion that mine is most likely a B12 problem based on info here, other places, and my response to vitamins and my diet. I'm going to try the sublingual B12. After a year gluten-free and some other changes in my life, I had found a certain amount of peace and health and comfort that I hadn't had in a long time and I had just accepted this and didn't want to take on another challenge but this has made me realize that I shouldn't just accept it and should work on making it better.

submarinerwife Newbie
submarinerwife
Posted

If those other possibilities don't work out for you (all of them good ideas) please also look into a CT scan.

Melzo Rookie
Melzo
Posted
  • Author

THANK YOU everyone who posted! You have been a huge help. I think I will first try the B-12 as it seems to be the easiest fix. But the yeast post (AndreaB and darkangel) did make me think a bit. Several months ago I had contracted thrush (yeast infection) from my daughter (who initially contracted it from me I guess) while breastfeeding. I guess it is a huge possibility that I never fully recovered and that could be my problem. Very interesting. If the B-12 doesn't work...I will have to start eliminating the sugary foods, etc....see if that helps the yeast issue. I am also going to make an appt. with the gastro doc as I am in need of a blood test. That will tell me if I'm having CC issues. It sounds like I am covering all possibilities.....hopefully.

Thank you all again for everything!

Best to all of you!

  • 1 month later...
JEM123 Newbie
JEM123
Posted

Hi,

I have been experiencing the same EXACT symptoms you listed. Did you ever find out what was wrong? I have been gluten-free for 8 months and this just started. My doctors cannot find any anwers..it is quite frustrating. Any feedback will be greatly appreciated. Thank you very much.

Jem

THANK YOU everyone who posted! You have been a huge help. I think I will first try the B-12 as it seems to be the easiest fix. But the yeast post (AndreaB and darkangel) did make me think a bit. Several months ago I had contracted thrush (yeast infection) from my daughter (who initially contracted it from me I guess) while breastfeeding. I guess it is a huge possibility that I never fully recovered and that could be my problem. Very interesting. If the B-12 doesn't work...I will have to start eliminating the sugary foods, etc....see if that helps the yeast issue. I am also going to make an appt. with the gastro doc as I am in need of a blood test. That will tell me if I'm having CC issues. It sounds like I am covering all possibilities.....hopefully.

Thank you all again for everything!

Best to all of you!

nora-n Rookie
nora-n
Posted

Brain fog is also a very common symptom of hypothyroidism, and even those taking thyroxine can have brain fog due to low t3 because they are taking only t4.

Be sure to get thyroid tests done too.

nora

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,870
    • Most Online (within 30 mins)
      7,748
    KRISTENE
    Newest Member
    KRISTENE
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. 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/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.