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

Hopeful but still anxious

KeriMary

Recommended Posts

KeriMary Newbie
KeriMary
Posted

Hi everyone! New to the forum. I was diagnosed in 2012, told to never eat gluten again, and never had a follow-up or anyone really care about the diagnosis. My Endo checked my vitamin D levels (the low level and genetic history lead to my diagnosis) bi-annually which have remained now in the normal range. This level is what I was always told determined if absorption was happening or not. I have never heard of the things everyone on here gets tested for :( I feel so cheated out of my health in a way.

anyways. I have severe, severe brain fog. I used to be so smart, sharp, witty, focused. I even have some personality changes and severe anxiety. I was put on Xanax after I was diagnosed but my tolerance to that medication is outrageous. I have to take three times the prescribed dose (my doctor knows this) in order to get any relief/clarity. I have a weight problem even though I work out four days a week (with a trainer), probably due to my flip floppy thyroid levels. Anyways, that’s my story! I have appointments with a new PCP, Endo, and GI doc in March! Just wanted to share with you all because you’re so kind and helpful. If anyone has any advice for this brain fog, I would be so appreciative. 

I should also mention that I was extremely smart and sharp before stopping gluten, ironic? Like the lack of gluten dumbed me down ? I never ever cheat. I know restaurants aren’t 100%, but I rarely chance that. There may be SOME cross contamination but I never feel repercussions. 

Thanks for reading ☺️

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted
1 hour ago, KeriMary said:

Hi everyone! New to the forum. I was diagnosed in 2012, told to never eat gluten again, and never had a follow-up or anyone really care about the diagnosis. My Endo checked my vitamin D levels (the low level and genetic history lead to my diagnosis) bi-annually which have remained now in the normal range. This level is what I was always told determined if absorption was happening or not. I have never heard of the things everyone on here gets tested for :( I feel so cheated out of my health in a way.

anyways. I have severe, severe brain fog. I used to be so smart, sharp, witty, focused. I even have some personality changes and severe anxiety. I was put on Xanax after I was diagnosed but my tolerance to that medication is outrageous. I have to take three times the prescribed dose (my doctor knows this) in order to get any relief/clarity. I have a weight problem even though I work out four days a week (with a trainer), probably due to my flip floppy thyroid levels. Anyways, that’s my story! I have appointments with a new PCP, Endo, and GI doc in March! Just wanted to share with you all because you’re so kind and helpful. If anyone has any advice for this brain fog, I would be so appreciative. 

I should also mention that I was extremely smart and sharp before stopping gluten, ironic? Like the lack of gluten dumbed me down ? I never ever cheat. I know restaurants aren’t 100%, but I rarely chance that. There may be SOME cross contamination but I never feel repercussions. 

Thanks for reading ☺️

Magnesium, B-vitamins, Vitamin D etc. Should probably be supplemented. For the fog, stress, brain issues I swear by my regime of Liquid Health Stress & Energy, and Liquid Health Neurlogical support 1tbsp each 3 times a day in a beverage before a meal. Works wonders, magnesium is also wonderful, you did not mention constipation or D so I do not know which is best for you. There is Doctors best and Natural Vitality, Doctors best works great for relaxing and is easy on the gut but Natural Vitality is easier absorbed but can be harsh on the gut, it also is great for constipation. Doctors you dose as it tells you, Natural Vitality, you start off at 1/4 tsp and up it slowly to full dose over 1-2 weeks.
Liquid Health also makes Vitamin D3 in a sublingual form. ALL of these can be found on Luckyvitamin.com and on Amazon.
These will help with you fog, and anxiety.

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

Get that follow-up testing.  At least help  confirm that you are compliant with the diet and that celiac disease is not the root cause of your brain fog and anxiety.  Once ruled out, your doctors can focus on other possible AI issues that are beyond your control (unlike celiac disease).  For now, you can focus on a good healthy diet.  Consider a modified AIP diet.  I just read a study involving this diet and IBD (autoimmune) done by Scripps in San Diego.  There was a 77% remissions rate.  Amazing!  This can (in theory)  be applied to other autoimmune issues.  It helps to validate that diet can heal.  

Open Original Shared Link

here are some follow-up guidelines:

Open Original Shared Link

Hang in there.  Consider Ennis’ tips too, but I prefer and do well without supplements.  My doctor has checked me for deficiencies and so should yours.  You need to really  figure out what is best for you (food, supplements, etc.) 

cristiana Veteran
cristiana
Posted

Hi there KeriMary

 

I think iron is something worth looking into on this one, too.

My teenage daughter has been looking pale recently and has started using the wrong words for things - something that I do when my iron is low.  It made life interesting when I used to have to give talks.  One evening the audience was joining in as I tried to find the right word for 'lantern'.   (I need to get my daughter's iron checked!)

 

Archived

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

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


  • Member Statistics

    • Total Members
      128,974
    • Most Online (within 30 mins)
      7,748
    Maura Gissen
    Newest Member
    Maura Gissen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi! I have been diagnosed with celiacs and hashimotos for about 1.5 years. I have been on a gluten-free diet since then, and was on a strictly AIP diet for about 6 months a while back. I'm now pregnant, making food eliminations really hard. However, even with cutting out gluten and cross-reactive foods like corn, dairy, oats and yeast, I'm still having flare ups and I cannot pinpoint the foods (some weeks I am fine, others not so much). My symptoms are less digestive and more dizziness, brain fog, and a general feeling of being "sick." Can anyone relate? Does anyone have guidance? I feel really stuck and frustrated. 
    • trents
      Worsening oral health with celiac

      By trents · Posted

      The form of the magnesium is important. Go for one that has high absorbability. Most of us opt for magnesium glycinate. Mag citrate is also good. Don't settle for the oxide forms. They aren't absorbed well and tend to have a laxative effect 'cause they just draw water into the colon a' la Milk of Magnesia. Costco is a good place to shop for things like that. Also, good bone and dental health involves vitamin D. Are you taking a dedicated D3 supplement? Have you had your D levels checked? In many ways, vitamin D is turning out to be a master vitamin of human metabolism and celiacs are often low on this one. What was the numerical score on your IGA along with the reference range? I can probably tell you whether it was TTG-IGA by the magnitude of the score. The only other likely option besides TTG-IGA would be Total IGA which usually has scores that range in the hundreds.  I do think it important for you to get a follow-up endoscopy/biopsy to check for healing of the villi. If that isn't happening like it should, you still are not absorbing nutrients well and that could easily explain your dental issues.
×
×
  • Create New...