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

How I Am Doing


w8in4dave

Recommended Posts

w8in4dave Community Regular

Well its been two years since I was DX'd its going pretty good. I was still having problems with energy levels. I finally went to the Dr. and said you have got to do something about this, he did blood work,  found out it was folic acid I was lacking. So I did a search and found I can be low on other stuff also. So tomorrow I have an appointment with my Dr. I am going to ask him if I can see a nutritionist. He asked me a long time ago if I wanted to see one and I was a lil hard headed about it. But then I found I was , corn, and soy intolerant and Lactose intolerant , I think I should go see one. Hopefully he will send me to a good one!  I did find out the folate is the cause of my hair graying, my hair falling out, my toenails falling off, sores in my mouth, I was kinda ticked with all the missed diagnoses. But it is what it is and what can ya do? Most of my friends are pretty supportive, my problem mostly is eating out. I prefer not to. I am going to travel to Mackanaw the end of the month I am going to find a small microwave and bring my own toaster and bread. Aldies has a nice bread that I love and is cheaper :) .... If we go to a restaurant I ask that they change gloves, Talk to the chef and they usually are very good. Sometimes they will lay a piece of foil down to cook your steak. And change to a clean utensil. But I am kinda cringing. Might take some cold meats and just live on sandwiches. Not sure yet.Have a nice day everyone!

 

 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

It is frustrating how doctors skip things - like your folic acid levels. Glad you are doing better.

When traveling or going out with others, sometimes I find its just easier and less stressful to bring my own! I try to bring a treat, too. Makes me feel less sad/ left out/hungry. Lol

GF Lover Rising Star

Hi There, good to see you around.  It's a process getting back your health.  Very discouraging at times.  Keep moving forward.

 

Colleen

nvsmom Community Regular

I'm glad you figured it out!  It's frustrating when recovery takes longer than it could have.  I hope this turns things around for you, quickly.

cyclinglady Grand Master

Good to hear from you! Start sautéing those greens with some bacon (good source of folate)! I eat them for breakfast. Plus, they can often be absorbed better by the body than supplements (my opinion!)

w8in4dave Community Regular

Because I have a corn intolerance I have a problem with bacon. Not sure it is corn or nitrates or what. I have only found one kind of bacon I can eat and it's up north. I eat alot of greens! Love to put them in eggs. I don't know why I am low on FA. Maby a part of my Villi not healed??I read that alot of the grains have Folate. I am going to Macinaw Island in about a week and yes I am taking my own toaster and looking for a small toaster oven I can take so I can cook a few things. Funny I first think of Garage sales LOL Nope need a new one! Silly me! I have decided to ban restaurants. I just think I am getting Gutened or some sneaky form of corn .I usually will drink hot tea. Find that some order their Iced tea from sources that put Corn in it. Sometimes maby a salad with no dressing.Some one just asked me how long I have to be on this diet. I said forever! I tell them it is truly a life style change for me.  Thank you for the support

notme Experienced

if you have a brand of hot tea that you like <and it likes you back!  :D ), you can make your own iced tea (or "sweet tea" as it is known as down here, lolz)  just brew a pot of tea and mix it with simple syrup (3/4 c. sugar, 1 c. water, heat it until sugar is dissolved)  i like to put lemon in mine :)  sometimes ;)


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Hey W8in, it's good to see you! Hang in there. You've been on the diet for two years. It took me over three years to eventually get corn back so here's hoping it happens for you too.

w8in4dave Community Regular

notme, and Bartful, I make my own tea all the time!! My latest thing is making flavored water with either lemon and lime or cucumber. Cut it up, put it in water and let it set a day or two. Wow!! Very good!! Bartfull, I hope I can get corn back!! Sooner or later.. It makes eating a lil simpler!! 

Archived

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

  • 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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,030
    • Most Online (within 30 mins)
      7,748

    Virgini Brewsaugh
    Newest Member
    Virgini Brewsaugh
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.