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Making Progress


pixespirit

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pixespirit Rookie

Hello fellow Celiacs,

I was diagnosed in January and have led a gluten free diet since. I saw a dietitian and met with 2 GI doctors, found a new allergist, and continue to take steps to be healthy.

Through my short journey, I've realized that there have been signs of the disease for years. It took chronic diarrhea to finally realize it. Going on a gluten-free diet wasn't difficult. It was an immediate lifestyle change. However, it wasn't until seeing my second GI doctor for a second opinion that I found that I needed to go Dairy Free for 6 months (to let my gut heal), and that there are more things that have gluten then we know---such as salad dressings; vinegar; marinates, sauces, etc. I've also found that places that claim to have a gluten-free menu don't necessarily have a gluten-free menu. Shanes Rib Shack claims to have a gluten-free menu; however, their BBQ sauce has high fructose corn syrup. HFCS has properties of gluten. HFCS is in a LOT of foods.

I've done a great deal of traveling this summer and found that I would get contaminated constantly. Just when I start to feel better, I get contaminated and would be down and out for several days. To truly heal, I needed to be home where I could cook organically. Now three weeks after being back from my last trip, I am finally starting to feel better.

I know I've been contaminated when I have loose BM's; feel lethargic and tired; and agitated.

Right now, I'm doing a body cleanse that is gentle. I'm also forcing myself to get on a regimented diet with taking probiotics and calcium on a daily basis. I'm looking for a gluten-free vitamin if anyone has any recommendations.

A problem I have is that while I eat healthy, I am holding onto extra weight. I would like to hear what others have to say about weight issues. I've cut back on potatoes and avocado. My problem is that I sometimes forget to eat, and wind up eating later then I should. I am also working on daily exercise which has been difficult to implement due to the lethargy.

I am making progress! Feedback welcome.


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looking4help Apprentice

Shanes Rib Shack claims to have a gluten-free menu; however, their BBQ sauce has high fructose corn syrup. HFCS has properties of gluten. HFCS is in a LOT of foods.

Can you explain this a bit further for me? HFCS has properties of gluten? I am still working on getting my diet correct and eliminating all pain/symptoms etc. Everything I have read lead me to believe it was gluten free.

Good for you! It really sounds like you have done a lot of work on your new way of life. I have been gluten-free since April of this year with many ups and downs but overall I can see a GREAT improvement.

I too find travel to be the worst for me at this point. I am so new into this that I don't have much feedback to give but I can give you support and some encouragement. You are your best advocate!

kayo Explorer

You're doing great. The diet changes take time and sometimes healing can be slow but if you stick with it you'll be ok.

Just an FYI, HFCS does not contain wheat gluten which is called gliadin. This is what we need to avoid. Gliadin is found in wheat, barley and rye. I believe you may be confusing this with corn gluten which is entirely different and not something that has to be avoided unless you have a corn intolerance. Though HFCS is evil in it's own right. :P

I like PB8 as a probiotic and I buy the Trader Joe's chewable multi-vitamin (like a gummy bear). Whole Foods is a great place to go for vitamins. The staff is very knowledgeable and can point you to the vitamins that are gluten free.

I'm one of those with extra weight and have found it difficult to lose. Turns out I have SIBO which may be the reason I can't lose the pounds.

Good luck!

psawyer Proficient

High fructose corn syrup (HFCS) is gluten-free, however some people have fructose intolerance and react to it. You could also react if you are intolerant to corn.

tooney Newbie

Hello fellow Celiacs,

I was diagnosed in January and have led a gluten free diet since. I saw a dietitian and met with 2 GI doctors, found a new allergist, and continue to take steps to be healthy.

Through my short journey, I've realized that there have been signs of the disease for years. It took chronic diarrhea to finally realize it. Going on a gluten-free diet wasn't difficult. It was an immediate lifestyle change. However, it wasn't until seeing my second GI doctor for a second opinion that I found that I needed to go Dairy Free for 6 months (to let my gut heal), and that there are more things that have gluten then we know---such as salad dressings; vinegar; marinates, sauces, etc. I've also found that places that claim to have a gluten-free menu don't necessarily have a gluten-free menu. Shanes Rib Shack claims to have a gluten-free menu; however, their BBQ sauce has high fructose corn syrup. HFCS has properties of gluten. HFCS is in a LOT of foods.

I've done a great deal of traveling this summer and found that I would get contaminated constantly. Just when I start to feel better, I get contaminated and would be down and out for several days. To truly heal, I needed to be home where I could cook organically. Now three weeks after being back from my last trip, I am finally starting to feel better.

I know I've been contaminated when I have loose BM's; feel lethargic and tired; and agitated.

Right now, I'm doing a body cleanse that is gentle. I'm also forcing myself to get on a regimented diet with taking probiotics and calcium on a daily basis. I'm looking for a gluten-free vitamin if anyone has any recommendations.

A problem I have is that while I eat healthy, I am holding onto extra weight. I would like to hear what others have to say about weight issues. I've cut back on potatoes and avocado. My problem is that I sometimes forget to eat, and wind up eating later then I should. I am also working on daily exercise which has been difficult to implement due to the lethargy.

I am making progress! Feedback welcome.

Hello! I was told that I have celiac disease by a specialist on June 3rd! Wonderful news - but, I have been up to this point in deep denial! I also have been suffering from chronic diarrhea (for 4 weeks, now, how long can one have this condition & function??) I was so getting so close to dehydration that my kidneys were trying to shut-down!!Just so there is no shadow of a doubt & my peace of mind?, I am getting a second opinion from my doctor on Tuesday. I have really enjoyed reading the various emails from ones with this disease. I need all the information I can get to become gluten-free but there seems to be so many differing views - some places say that white vinegar is not OK other lists say it is OK but not Malted, 100% coffee is OK,etc....Also, I checked into some restaurants for gluten-free menu's but failed to realize that the grill or stoves cook on may be gluten contaminated?? Just cannot win with celiac disease??

So many things to watch for & very confusing - would trace of glutens slow healing process?? I cannot afford to go to special doctors (had to leave my wonderful job due to my health condition)& even the co-op I have to shop at now is not in-expensive!!

Woe is me but I guess I just have to keep my spirits up (been trying real hard to fight deep depression - at first, I wanted to just walk in front of an oncoming truck!!!

Like someone said in their email back in 08 - it has taken many years to put toxins into my body & it will take many years (yikes!) to get my body cleaned out (being older, 62y, will it be a hindrance or ??). Also, have type 2 Diabetes which loads a whole new set of problems along with having celiac disease.

I am glad that there is a support group here in Bellingham, WA. & when I feel better will take full advantage of that.

slow healing process

smp

pixespirit Rookie

High fructose corn syrup (HFCS) is gluten-free, however some people have fructose intolerance and react to it. You could also react if you are intolerant to corn.

Open Original Shared Link

The article above explains that HFCS is derived from corn starch which may or may not have gluten in it. That is why I have been advised to stay away all together. I miss Heinz ketchup and candy....but,it's not worth it for me. This is a good topic. Thank you for your comments.

pixespirit Rookie

Can you explain this a bit further for me? HFCS has properties of gluten? I am still working on getting my diet correct and eliminating all pain/symptoms etc. Everything I have read lead me to believe it was gluten free.

Good for you! It really sounds like you have done a lot of work on your new way of life. I have been gluten-free since April of this year with many ups and downs but overall I can see a GREAT improvement.

I too find travel to be the worst for me at this point. I am so new into this that I don't have much feedback to give but I can give you support and some encouragement. You are your best advocate!

See the article I posted below regarding HFCS. It's the devil sadly...and I miss it terribly!

Thanks for your encouraging words. It's nice to have my feelings validated.


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Skylark Collaborator

Open Original Shared Link

The article above explains that HFCS is derived from corn starch which may or may not have gluten in it. That is why I have been advised to stay away all together. I miss Heinz ketchup and candy....but,it's not worth it for me. This is a good topic. Thank you for your comments.

I believe you misread it. The writing in that article is terrible. It says that HFCS is a problem for corn sensitive people. The second half of that confusing sentence says modified food starch is the ingredient that can be made from different grains.

Modified food starch can be made from wheat, but in the US if it's made from wheat the product must explicitly say it contains wheat on the label. Almost all modified food starch in the US is made from corn and is safe for celiacs.

(Not that you want to be eating a lot of HFCS anyway. :lol: )

psawyer Proficient

The word "gluten" is used in two different senses, and that can cause confusion.

To an organic chemist, "gluten" is the protein in a grain--any grain. In that sense it includes the protein in corn (maize) and rice. "Corn gluten" is the protein in corn, in this usage.

To a dietitian, a celiac, or anybody else with an intolerance, "gluten" is the protein (actually the prolamine) found in wheat, barley and rye. Whether oat protein belongs in the definition is a matter of current debate. The three (or four) specific prolamines are the ones that we need to be concerned about. In this sense of the word, corn products, including HFCS, are gluten-free.

lucia Enthusiast

I had a reaction to your comment about finding it hard to lose weight, knowing that as a culture we're not very accepting of natural human forms. Of course, as a caveat, I don't know anything about your weight or your history with it, but I do get concerned when people start giving up avocados.

I've seen too many women and men do very bad things to themselves to try to lose weight when they're perfectly healthy. If you're eating healthy, well-balanced meals and getting a moderate amount of exercise, then your body should settle into its set point weight (unless something is wrong). When I was 19, I thought my set point weight should be 10 pounds less than it was, and I was frustrated by my inability to lose weight even while skipping breakfast and running miles at a time in 90 degree heat. But now I know that I was at the right weight for carrying groceries home, biking to the lake to swim, and hiking in Vermont on weekends, even if I didn't look like Kate Moss while doing those things.

Are you able to exercise at all? If you are overweight, even adding 15 minutes of brisk walking a day will drop pounds, slowly but surely - and (most importantly) permanently.

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    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
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    • KDeL
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