Negative, But I Say Positive!

[LaMich]

My blood test came back negative, but I know I positively have Celiac's disease. I've been envying some of you who have instant feedback from your bodies when you've been glutened. I thought this sounded like such a perfect way to know for sure if something is safe and whether to avoid it. But now I'm realizing my body gives me farely instant feedback too. Not as dramatic as those of you who break out, vomit or have the D word immediatly after, but my stomach bloats out to about 5/6 months pregnant looking, my muscles ache and I feel fatigued. I look marshmellowy plump all over for about a week after.

This weekend I knew I had been glutened but just couldn't get to the bottom of it and figure out how and when?!?! I checked the chocolate chips, the coffee creamer, the trident gum. Everything I could think of. Three days later, I finally figured it out! Soy Sauce! I had no clue! Second ingredient after water: Wheat! Arg. Well, I'm glad to know now. I just popped a Tums into my mouth and crunched down. Then I froze and grabbed the bottle to read the label. I'm so glad I did. Maltodextrin: Gluten. What a bummer. I didn't swallow, brushed my teeth and washed my mouth out as good as possible. I even scraped my tongue with a tongue scraper, lol. If it was just one day of repercussions for messing up, it would be no big deal, but it takes nearly two weeks every single time!! Sheesh, I wish manufacturers would get a clue and have a heart!

Thanks for lending your ear!

Hugs,

Michele

[Roda]

I just popped a Tums into my mouth and crunched down. Then I froze and grabbed the bottle to read the label. I'm so glad I did. Maltodextrin: Gluten. What a bummer. I didn't swallow, brushed my teeth and washed my mouth out as good as possible. I even scraped my tongue with a tongue scraper, lol. If it was just one day of repercussions for messing up, it would be no big deal, but it takes nearly two weeks every single time!! Sheesh, I wish manufacturers would get a clue and have a heart!

Thanks for lending your ear!

Hugs,

Michele

Here are some links to maltodextrin and tums. Maltodextrin in the US should be gluten free and Tums states that all but two of their products are gluten free. Of course you personally could still be sensitive. Hope this helps! It does get easier, but even 8 months into it I'm still making mistakes.

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

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[Diva1]

My blood test came back negative, but I know I positively have Celiac's disease. I've been envying some of you who have instant feedback from your bodies when you've been glutened. I thought this sounded like such a perfect way to know for sure if something is safe and whether to avoid it. But now I'm realizing my body gives me farely instant feedback too. Not as dramatic as those of you who break out, vomit or have the D word immediatly after, but my stomach bloats out to about 5/6 months pregnant looking, my muscles ache and I feel fatigued. I look marshmellowy plump all over for about a week after.

This weekend I knew I had been glutened but just couldn't get to the bottom of it and figure out how and when?!?! I checked the chocolate chips, the coffee creamer, the trident gum. Everything I could think of. Three days later, I finally figured it out! Soy Sauce! I had no clue! Second ingredient after water: Wheat! Arg. Well, I'm glad to know now. I just popped a Tums into my mouth and crunched down. Then I froze and grabbed the bottle to read the label. I'm so glad I did. Maltodextrin: Gluten. What a bummer. I didn't swallow, brushed my teeth and washed my mouth out as good as possible. I even scraped my tongue with a tongue scraper, lol. If it was just one day of repercussions for messing up, it would be no big deal, but it takes nearly two weeks every single time!! Sheesh, I wish manufacturers would get a clue and have a heart!

Thanks for lending your ear!

Hugs,

Michele

Hi

I'm one of those to...celiac test negative but all the symptoms are there and are they ever. I've been on the gluten diet for 2 months now still have a bit of symptoms from cramps (until my bowels are back to normal) Yesterday I glutened myself by mistake, had lemonade made in canada where flavoring is wheat base....in the US the flavor are gluten free unless otherwise indicated with the word weat....canada needs to get there act together on labelling.

I too wish that my test were positive, were we can say yes we are celiac and dont have lingering thoughs of other deseases wondering in our brains....

[leadmeastray88]

Yesterday I glutened myself by mistake, had lemonade made in canada where flavoring is wheat base....in the US the flavor are gluten free unless otherwise indicated with the word weat....canada needs to get there act together on labelling.

I'm from Canada and flavoring does not necessarily mean it has gluten in it. I always call to double check, and I have to say that 99% of the time, it's safe.

No, labeling is not where it should be. That is not exclusive to Canada, however.

At this time, it is the responsibility of the person consuming it to make sure it is safe.

[OptimisticMom42]

My son's blood test was negative. But the Dr prescribed a gluten free diet anyways based on family history and symptoms. He's not taking it very seriously and his body is punishing him for it. He's 18 so I can only point him in the right direction and hope for the best.

I thought maltodextrin was safe here in the U.S. But like soy lecithin some people react to it and some don't.

[LaMich]

My son's blood test was negative. But the Dr prescribed a gluten free diet anyways based on family history and symptoms. He's not taking it very seriously and his body is punishing him for it. He's 18 so I can only point him in the right direction and hope for the best.

I thought maltodextrin was safe here in the U.S. But like soy lecithin some people react to it and some don't.

I wouldn't know personally about the maltodextrin. I just came to the computer and googled Tums after seeing that word and a lot of responses came up that Tums contained gluten. So I assumed it was the maltodextrin, since malt is a barley ingredient and contains gluten in Rice Krispies... Again, I don't know personally, I've just already made too many mistakes to chance it again.

I'm sorry about your son. You could tell him that eating gluten will cause early baldness from malnutrion...lol. ;^) Who knows, there could be a link? It makes sense. My own hair has thinned a lot more than I ever thought it would. Hopefully that will stop now that I'm avoiding gluten. Good luck to you.

[leadmeastray88]

I wouldn't know personally about the maltodextrin. I just came to the computer and google Tums after seeing that word and a lot of responses came up that Tums contained gluten. So I assumed it was the maltodextrin, since malt is a barley ingredient and contains gluten in Rice Krispies... Again, I don't know personally, I've just already made too many mistakes to chance it again.

Maltodextrin doesn't have malt in it:

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

8) Maltodextrin is prepared as a white powder or concentrated solution by partial hydrolysis of corn starch or potato starch with safe and suitable acids and enzymes. (1) Maltodextrin, when listed on food sold in the USA, must be (per FDA regulation) made from corn or potato. This rule does NOT apply to vitamin or mineral supplements and medications. (2) Donald Kasarda Ph.D., a research chemist specializing on grain proteins, of the United States Department of Agriculture, found that all maltodextrins in the USA are made from corn starch, using enzymes that are NOT derived from wheat, rye, barley, or oats. On that basis he believes that celiacs need not be too concerned about maltodextrins, though he cautions that there is no guarantee that a manufacturer wont change their process to use wheat starch or a gluten-based enzyme in the future.

That being said, it is always best to call the manufacturer.

[Nancym]

The safe and forbidden list on celiac.com is really good. You should read it over and consult it frequently until you get a feel for things.