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

H-e-l-p-!


Melzo

Recommended Posts

Melzo Rookie

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
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

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

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

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

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

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

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

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

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

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

Melzo Rookie

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Gluten is bad's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten Free ADHD medications

    2. - Wheatwacked replied to ABP's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      9 year old- questionable results

    3. - gregoryC replied to gregoryC's topic in Traveling with Celiac Disease
      7

      Celebrity Cruise for Gluten Free

    4. - trents replied to ABP's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      9 year old- questionable results

    5. - ABP posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      9 year old- questionable results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,882
    • Most Online (within 30 mins)
      7,748

    tina.walstad
    Newest Member
    tina.walstad
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      I take Clonidine for blood pressure control.  It is the only one that did not debiltate me.  It also helps with my ADD.  Doctors always turned me down when I requested Ritalin (I am an adult) so it turned out for the best that I reacted badly to all the different BP meds they tried. Originally Clonidine was developed for ADHD adolescents that could not tolerate Ritalin.  
    • Wheatwacked
      You should also have her checked for vitamin deficiencies.   "Iodine's presence in the diet can contribute positively to hair strength and elasticity by maintaining hair follicle cycling and supporting the synthesis of hair shaft components like keratin. Keratin is strong and won't dissolve in diluted acids, alkalines, solvents, or water" "Keratosis pilaris is a benign skin condition characterized by small bumps around hair follicles. It is caused by excess keratin, a protein that forms hair, nails, and skin. Iodine is not directly related to keratosis pilaris, but certain foods can help improve it" It could be deficiency in iodine may be causing the keratosis Polaris.  Insufficient iodine intake affects healing, intellegence skin and nails. The average intake of iodine fell 50% from 1970 to now.  A Medium Urinary Iodine Concentration test will indicate intake.  TSH and T4 will not show iodine intake deficiency until damage is being done. Most newly diagnosed Celiac Disease and other autoimmune diseases are deficient in vitamin D when diagnosed.  Other than bone growth, vitamin D is essential for mental health and the immune system.
    • gregoryC
      Just finished my second celebrity cruise. My first was on one of their oldest ships, it was awesome! Now we have sailed on the edge class. Wow! Not only do they have so many gluten-free options but the selection is mind blowing! Any given day you will have between 5 to 7 different gluten-free cakes to try. Yes that is right, one day at the coffee shop I had to choose between 5 gluten-free cakes not including the several puddings on display. So they gave me a small piece of each. 2 were great, 2 were just good, and 1 I did not enjoy. But never have I had the tough decision of which cake to eat?  These selections are from their normal options available for all guest. In the main dining room they always surprised me with some awesome desserts.  In my opinion the best pizza was on the Millennium class and best buffet on the Edge class. Although these two ship vary in size they are both consistent and serving high quality food from the main dinning room. The edge class gives you 4 “main” dining rooms (all included). I was unsure how this would work with my gluten-free diet? It worked great! I was able to order or see the next night’s menu for each of the four dinning venues finding that very little to no modifications needed to be made due to their extensive gluten free options.  The Millennium and Edge class ships provide the best gluten-free options from any of the cruise lines I have sailed with. You will find a larger selection and options on the edge class ships, however you will not be disappointed with the smaller Millennium class. Which is still my favorite cruise ship to date.   
    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
×
×
  • Create New...