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Quick Vs. Slower Reaction


CMCM

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CMCM Rising Star

Does the speed of reaction indicate anything, i.e. reacting within an hour or two vs. reacting maybe as mucha s 6 or 7 hours later? Or even the next day?

For example, would a person with a lesser degree of celiac disease react more slowly perhaps? Just wondering...


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RiceGuy Collaborator

Well, it seems everyone reacts differently, so I doubt there will be a general rule. However, I don't think it matters much since the intolerance means being gluten-free for life.

celiac disease (the actual damage) is the result of the intolerance, so it depends on how long the problem went unchecked. If the intolerance is discovered early in life, the damage would be that much less. The degree of damage also depends on how much gluten has been in the diet.

I don't care how I react now that I know I do. The solution is the same.

KaitiUSA Enthusiast

There are no "lesser" degrees of celiac. You have celiac or you don't. Everyone with celiac has to follow the gluten free diet 100%.

The only things that vary with celiac are symptoms and damage.

Some people even with really bad damage get no symptoms so you can't really tell from reactions.

The damage may vary depending how long it has gone undiagnosed.

But everyone gets damage from celiac just some people don't get reactions.

jenvan Collaborator

As Kaiti said...no real degrees to Celiac. However, based on how long someone has had the disease, their levels on intestinal damage can vary. People with celiac disease have a range of symptoms and noticeable "reaction times", so to speak. Some have quick, violent reactions. And others, such as myself, have slower, lingering reactions.

CMCM Rising Star

So you all feel that the degree of severity of the reaction doesn't necessarily have a correlation to the severity of the diease....and likewise, may not indicate how much damage is being done??? I guess I've been thinking about allergies, which I know are an entirely different animal, but with allergies one person can sneeze a bit, another might get a rash, and a third might have a more severe reaction. So I've been wondering if celiac could be similar.....some people get violently ill from just a smidgen of gluten somewhere, and others just get gas or some sort of mild abdominal discomfort. I guess the curious thing is why the reactions vary so much.

Rachel--24 Collaborator

The reactions really don't tell anything (except that you've been glutened). There are people with total destruction of their villi (seen in biopsy) and they have no symptoms whatsoever. There are others who have severe reactions and no damage seen in biopsy.

Lisa Mentor

I'm still trying to figure that out. Gluten free (as best I am able) since late August. I am still healing so it is hard to figure out the healing or glutened.

I also do not know now what my sensitivity is. Time will tell. I was glutened either yesterday or today and I can't figure the source. (As posted on today's post)

Time and patience and a food journal would work. I have not done that but it is wise to do.

Don't know whether I am much of a help but maybe for someone.


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cornbread Explorer

What confuses (and worries) me is those of us whose reactions last longer each time. When I first went gluten-free and got 'glutened' the first few times, I would have symtoms for 48 hours. I thought that sucked. Little did I know that the *next* time, it would be 3 days... Then 4 days, then 5. I seem skipped 6 and went straight to 7, and then this last time it was 8! Will it never end?! :(

traveljunkie Rookie

Hi, new to the forum. My 16 year old son and I are gluten sensitive. Haven't been diagnosed celiac, but have sent for Enterolab test. I usually have a burning feeling in my lower abdomen after I've accidentally ingested gluten. I will then have diarrhea for the day and have to take immodium to get back on track. My symptoms usually last a day but can be longer...depends on the amount ingested. My son on the other hand will have diarrhea with no pains and feel irritable. I'm so glad I have found this forum and have learned a lot on how to cope with this.

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    • trents
      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.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      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
      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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