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bluonblack1

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bluonblack1 Newbie
bluonblack1
Posted

Hi all, I'm new to the board, and new to the gluten free stuff. I'm getting tested for Celiac disease in a couple of weeks but am 99% sure that's what I have. Any guidance on diet or anything else would be appreciated!

:D

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Canadian Karen Community Regular
Canadian Karen
Posted

Hi! Welcome to the board!!!

Any questions you need to ask, go right ahead, there's a bunch of really helpful and knowledgeable people on this board.

You say that you haven't been tested yet. If this means you haven't had the bloodwork done yet, make sure you continue eating gluten until the testing is done or else your results will not reflect the true numbers......

If the tests come back that indeed it is celiac disease or gluten intolerance, well, BOY ARE YOU IN THE RIGHT PLACE!!!! This is a great source of info and our motto is there is no question too stupid to ask because we have all been there, just starting out and feeling totally overwhelmed by it all. Trust me, it will get easier to the point that the diet is just second nature.

Again, welcome!

Karen

bluonblack1 Newbie
bluonblack1
Posted
  • Author

HOw long does it take for the intestines to heal normally???

Hi! Welcome to the board!!!

Any questions you need to ask, go right ahead, there's a bunch of really helpful and knowledgeable people on this board.

You say that you haven't been tested yet. If this means you haven't had the bloodwork done yet, make sure you continue eating gluten until the testing is done or else your results will not reflect the true numbers......

If the tests come back that indeed it is celiac disease or gluten intolerance, well, BOY ARE YOU IN THE RIGHT PLACE!!!! This is a great source of info and our motto is there is no question too stupid to ask because we have all been there, just starting out and feeling totally overwhelmed by it all. Trust me, it will get easier to the point that the diet is just second nature.

Again, welcome!

Karen

<{POST_SNAPBACK}>

[/quot

HOw long does

Jnkmnky Collaborator
Jnkmnky
Posted

My son was three when dx. He healed in about 9 months. Couldn't handle dairy at 6 months...waited till 9, gave him milk, was all good. That's how I figure it was 9 months.

Canadian Karen Community Regular
Canadian Karen
Posted

Everyone responds differently to the diet at first. Some report MAJOR improvements within a couple of weeks (sometimes even days!!), others take months. It all depends and on the amount of damage done (in other words, how many years did your celiac go undiagnosed and the damage was piling up.....) and also depends on how vigilant you are with the gluten free diet. Personally, after a year on the diet without any improvements whatsoever, I found out quite a few sources of gluten that I wasn't previously aware of that I was getting on an almost daily basis (just an example, I used to eat the Gax-X chewable tablets like candy for the severe gas pains that I got, and after some sleuthing with the help of the people here on the board, I found out they contained gluten!!!!). Also, the specialists did further testing and found out that I also had collagenous colitis, so the chronic diarrhea that I have had for years is also something else other than JUST celiac disease......

Another factor is cross contamination. Before I smartened up and started really taking this disease seriously, I wasn't very careful at all. I would use the same toaster as the rest of my family, same utensils, pots, margarine, jams, peanut butter, etc. etc. Now I am very strict about having my own "gluten free" items, condiments, section of counter space/cupboards, etc..... Even just a crumb can set off a reaction..........

You also have to take a look at ALL your toiletries. Shampoos, cosmetics, toothpaste, mouthwash. Also, medications and vitamins, supplements.

It all seems so overwhelming at first, but trust me, we have all been there so we know what you are feeling now. Believe us when we say it will get easier!!!

Karen

bluonblack1 Newbie
bluonblack1
Posted
  • Author

Cool, thank you all so much!!! I know I'll have lots more questions. But thank you all in advance!!! :)

CDMOMPA Newbie
CDMOMPA
Posted
Hi!  Welcome to the board!!!

Any questions you need to ask, go right ahead, there's a bunch of really helpful and knowledgeable people on this board. 

You say that you haven't been tested yet.  If this means you haven't had the bloodwork done yet, make sure you continue eating gluten until the testing is done or else your results will not reflect the true numbers......

If the tests come back that indeed it is celiac disease or gluten intolerance, well, BOY ARE YOU IN THE RIGHT PLACE!!!!  This is a great source of info and our motto is there is no question too stupid to ask because we have all been there, just starting out and feeling totally overwhelmed by it all.  Trust me, it will get easier to the point that the diet is just second nature.

Again, welcome!

Karen

<{POST_SNAPBACK}>

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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