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Ingesting Gluten

Bonnie

By Bonnie
in Coping with Celiac Disease

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Bonnie Explorer
Bonnie
Posted

Hi guys,

I was wondering if anyone else just knows while they are eating something thats it contains gluten. Before you have any symptoms I mean.

I went shopping on Sunday and was starving. I have to eat or I start feeling really weak. Went to a restaurant and could not find one thing on the menu I could have.

After about 20 minutes of searching I asked the waiter for some scrambled egg with avo and some french fries.

Well it looked ok but as soon as I started eating I just knew there was gluten somewhere in this meal. I couldn't taste anything, I can't explain, just a feeling. Within 10 minutes the headache started, heart was racing incredibly fast, nausea and sooo tired I could hardly drive home.

I questioned myself afterwards as to whether I "talked" myself into the symptoms and whether it was all in my head. Is this possible?

I learned a valuable lesson though! Its just so difficult when you are out and hungry, there is nothing to buy quickly to fill you up.

Does this happen to anyone else?

Yvonne

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Canadian Karen Community Regular
Canadian Karen
Posted

I usually know right away. I get this weird burning/choking/tickle kind of feeling in my throat...... immediately after ingesting.....

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

I feel it right away. I usually start feeling weird in the midst of eating it right before the symptoms set it. When that happens I stop eating because I know by that point I was glutened.

Bonnie Explorer
Bonnie
Posted
  • Author

Thats exactly like me Kaiti.

Its weird because you get all these emotions raging through you because you just know you are going to get sick and there is absolutely nothing you can do about it. I almost wish I could make myself throw up to get rid of it but of course that won't work! Its really unpleasant feeling out of control like that.

Guest kmmolina
Guest kmmolina
Posted

Bonnie...I know what you mean about feeling like you have talked yourself into getting sick. I don't know if I can tell right away..yet, but I will do things like all of a sudden feel really bloated. I swear I can gain 5 pounds within 4 hours, because of being glutenized...but it feels crazy making. Sometime I feel like a hypochondriac...it just feels crazy!!! :unsure:

nettiebeads Apprentice
nettiebeads
Posted

[i learned a valuable lesson though! Its just so difficult when you are out and hungry, there is nothing to buy quickly to fill you up.

Does this happen to anyone else?

Yvonne

<{POST_SNAPBACK}>

ianm Apprentice
ianm
Posted

My lips get a prickly, tingling sensation and I start to get a little brain fog. Fortunately I am not super sensitive and I can stop eating before it gets any worse.

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Bonnie Explorer
Bonnie
Posted
  • Author
My lips get a prickly, tingling sensation and I start to get a little brain fog. Fortunately I am not super sensitive and I can stop eating before it gets any worse.

<{POST_SNAPBACK}>

Ian have you found that the brain fog gets worse the longer you are gluten-free? I am noticing its got a lot worse for me but perhaps it will level out as its still relatively early days for me. Its a horrible feeling, like you're not really here, can't really take in what people are telling me, or promptly forget what they told me!

Bonnie Explorer
Bonnie
Posted
  • Author

[

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    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
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      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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