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Can I Still Be Glutened ...

AlysounRI

By AlysounRI
in Coping with Celiac Disease

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AlysounRI Contributor
AlysounRI
Posted

Hi All:

I went through testing and was not diagnosed celiac.

I have been off the poison for about 3 weeks now.

Yesterday I had some IBS flare-ups and felt like crap.

Today I am dizzy and achy all over (esp. in my arms and legs) and I am slightly nauseous and just plain exhausted!!

If you don't have the proper diagnosis of celiac, can you still be glutened?

Because this sure feels like I have been - even though I can't think of what I ate to make me feel like this!!

Thanks for your comments,

~Allison

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K8ling Enthusiast
K8ling
Posted

YOu can be if you have a gluten allergy! I am not celiac, just Gluten-intollerant and I got Glutened yesterday. It is certainly possible!

AlysounRI Contributor
AlysounRI
Posted
  • Author

YOu can be if you have a gluten allergy! I am not celiac, just Gluten-intollerant and I got Glutened yesterday. It is certainly possible!

Sorry you feel crappy too!!

This just sucks.

I'm fighting to get any work done today.

I'm so foggy and slow.

My arms feel like lead.

I hope YOU feel better soon!!

~Allison

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Just because your tests come back negative does not mean you do not have celiac disease. Celiac disease, gluten intolerant, wheat allergy, the best test is to eat some gluten. Get sick? Consider it the best positive results for the test.

Remember to try this several times. Cross check what other ingredients were in what you ate. You could have problems with soy, dairy, corn or another food items.

You sound like you already can tell that you are testing positive. This is something you know in your heart and soul by the sounds of what you wrote. Consider yourself smarter than most doctors.

Think of it this way. Some people take a pregnancy test that says negative but they really are pregnant. Not everyone has "within normal" limits on their tests.

K8ling Enthusiast
K8ling
Posted

Sorry you feel crappy too!!

This just sucks.

I'm fighting to get any work done today.

I'm so foggy and slow.

My arms feel like lead.

I hope YOU feel better soon!!

~Allison

LOL THanks for the love, I feel WAY better today. Husband called it a "Drive By Flouring" because it was a relatively mild reaction.

AlysounRI Contributor
AlysounRI
Posted
  • Author

Just because your tests come back negative does not mean you do not have celiac disease. Celiac disease, gluten intolerant, wheat allergy, the best test is to eat some gluten. Get sick? Consider it the best positive results for the test.

Remember to try this several times. Cross check what other ingredients were in what you ate. You could have problems with soy, dairy, corn or another food items.

I already know that I have problems with dairy and I've avoided it as much as possible for most of my life. The only dairy I can really manage is yoghurt and some hard cheeses like parmesan and romano and the occasional piece of swiss cheese. Other than that I tend to stay away from it. I just can't think of what I had on Monday night (other than a nice spinach salad with tomatoes, an avocado, and some sunflower seeds. The Boathouse Farms dressing never hurt me before.

Yesterday I had some sausage, it was good sausage but my stomach might not have been ready for it. And I did read the label. Unless it had MSG in it (and it had another name) it seemed safe, you know!! MSG makes me ill too. I think that MSG makes most people ill.

You sound like you already can tell that you are testing positive. This is something you know in your heart and soul by the sounds of what you wrote. Consider yourself smarter than most doctors.

Think of it this way. Some people take a pregnancy test that says negative but they really are pregnant. Not everyone has "within normal" limits on their tests.

Thanks, Ahorsesoul, I already know that I am smarter than most docs. If I am not celiac, I know that I have a major problem with gluten and it's why I am not willing to go back on it to "fight" the test results. But I was feeling sooooo good, esp. this past week.

Things like this are bound to happen, so I hope that they don't happen to often.

Thanks for your comment. I am being super careful with stuff and it works, for the most part, until it doesn't work. And when it doesn't I guess I have to expect it to be an incrementally harsh reaction from now on.

I'm here at work and I will carry on as best I am able to. And then I will call tonight an early night and hope it passes tomorrow. It will pass, I know that.

Thanks guys, for your help,

~Allison

AlysounRI Contributor
AlysounRI
Posted
  • Author

Husband called it a "Drive By Flouring" because it was a relatively mild reaction.

God, I love that, A "Drive By Flouring".

Brilliant.

Hubby is very clever :)

~Allison

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YoloGx Rookie
YoloGx
Posted

God, I love that, A "Drive By Flouring".

Brilliant.

Hubby is very clever :)

~Allison

Reminds me--I was thinking how much stronger and more resiliant we actually are against colds and flue and have a tendency to look younger etc. if we stay off the gluten--so we really are in many ways much stronger than most folks. But all it takes to get us is if someone throws glutenous flour at us!! Unfortunately it is much more prevalent than superman's Kryptonite!! One could make a Broadway play about it, it could be both funny and dark at the same time...

One has to be a sleuth and develop awareness and strategies to avoid CC...and then other ones to more quickly overcome it...

Bea

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
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      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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