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How I Am Doing

w8in4dave

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w8in4dave Community Regular
w8in4dave
Posted

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!

 

 

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kareng Grand Master
kareng
Posted

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
GF Lover
Posted

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
nvsmom
Posted

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
cyclinglady
Posted

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
w8in4dave
Posted
  • Author

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
notme
Posted

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 ;)

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bartfull Rising Star
bartfull
Posted

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
w8in4dave
Posted
  • Author

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!! 

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

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    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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