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Not Celiac - So How Do I Know If I'm Still Gluten Sensitive?


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#16 GlutenDude

 
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Posted 07 October 2011 - 01:01 PM

A few thoughts...

- It took my almost two full years to begin to feel better so going off gluten short term might not give you the answers you are looking for. I would hit another doctor who specializes in Celiac if you can find one.

- I would not go off dairy and gluten at the same time. Eventually I would because most celiacs I've met also have dairy issues. I'm dairy and soy free as well (and still don't feel great...argh!!). But if you go off both at the same time and you feel better, you won't know which one is causing the issues.

- Based on your symptoms (explosive diarrhea, etc), I do wonder if you have something else going on inside.

I wish you the best and hope you find health and happiness.

The Gluten Dude
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#17 gailc

 
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Posted 07 October 2011 - 04:03 PM

I have been in misery the last month and a half, turned out to be canola. I've been gluten-free 7months and read labels. I knew maybe 4 years ago about canola and got rid of my bottle, but I didn't know it was in processed foods.
I read the ingredients very carefully for gluten and now I will go back a second time for canola and soy and olive oil. If its got it, I won't get it.

I have been canola free for 1 1/2 weeks and see improvements. When I discovered the problems years ago I thought it was only choking, but I have had 12 symptoms reappear and all are going away now. The last holdout is constipation, it won't budge.
Thankfully the lactose intolerance did not come back with this dosing.

If you are sensitive to several things and only eliminate one at a time you will not get the answer. Like my eliminating canola oil years ago, the only difference I could see was a decrease in choking, none of the other symptoms decreased. I now know it causes at least 12 symptoms while gluten-free, my intestines have not yet been damaged or there would be a dozen more. I'm not going to experiment.

Get it all out of you, my latest new symptom is hypoglecemia I think brought on by the canola oil. Also due partially to my loss of appetite :rolleyes: on the gluten-free diet.
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#18 DVjorge

 
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Posted 07 October 2011 - 05:18 PM

Hi,
I am in the same position that you. I was listening two interview with Dr. Fasano about this nightmare of Gluten sensitivity and Celiac. If I understood well, Dr. Fasano confirm that there are two different problems. People who really have Celiac and have positive antibodies, and people who have gluten sensitivity with negative blood antibodies.
If it is correct, villi damage only occur to those who have a positive antibodies (Celiac) .
So, people who are gluten intolerant, have Igg antibodies caused by leaky gut or any other allergic reaction but not villi damage.
The difference is Celiac = villi damage and gluten intolerance = no villi damage but allergic reaction.

Please, correct me if I am wrong but this is my understanding after reading the topic.
Thanks.
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#19 mushroom

 
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Posted 07 October 2011 - 06:44 PM

Hi,
I am in the same position that you. I was listening two interview with Dr. Fasano about this nightmare of Gluten sensitivity and Celiac. If I understood well, Dr. Fasano confirm that there are two different problems. People who really have Celiac and have positive antibodies, and people who have gluten sensitivity with negative blood antibodies.
If it is correct, villi damage only occur to those who have a positive antibodies (Celiac) .
So, people who are gluten intolerant, have Igg antibodies caused by leaky gut or any other allergic reaction but not villi damage.
The difference is Celiac = villi damage and gluten intolerance = no villi damage but allergic reaction.

Please, correct me if I am wrong but this is my understanding after reading the topic.
Thanks.


Just as celiac disease is not an allergy to gluten, neither is gluten intolerance. The following is taken from WebMD quoting Dr. Guandalini, one of the leading celiac experts:

"In a study published this year in BMC Medicine, researchers described gluten sensitivity as a disorder distinct from celiac disease, in part because the intestine doesn’t appear damaged. About 1% of the population has celiac disease, the authors wrote, but celiac might be the “tip of the iceberg” for an “emerging problem…of a group of gluten-reactive patients, accounting for roughly 10% of the general population.”

Still, doctors don’t have a generally accepted definition, nor do they fully understand its cause. “Gluten sensitivity is basically a bit unknown,” Guandalini says. “It’s everything that is not wheat allergy or celiac disease, and yet these individuals experience adverse events when they ingest gluten.”


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#20 DVjorge

 
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Posted 08 October 2011 - 08:54 AM

Just as celiac disease is not an allergy to gluten, neither is gluten intolerance. The following is taken from WebMD quoting Dr. Guandalini, one of the leading celiac experts:

"In a study published this year in BMC Medicine, researchers described gluten sensitivity as a disorder distinct from celiac disease, in part because the intestine doesn’t appear damaged. About 1% of the population has celiac disease, the authors wrote, but celiac might be the “tip of the iceberg” for an “emerging problem…of a group of gluten-reactive patients, accounting for roughly 10% of the general population.”

Still, doctors don’t have a generally accepted definition, nor do they fully understand its cause. “Gluten sensitivity is basically a bit unknown,” Guandalini says. “It’s everything that is not wheat allergy or celiac disease, and yet these individuals experience adverse events when they ingest gluten.”


Yes, that is correct. But, still if I eat gluten by accident, I know my villi isn't suffering any damage but only have to deal with the symptoms. My blood work was negative and my biopsy too. Sometimes, I eat gluten and I can not track any symptom. So, in this way, it is really hard to know what to do. For now, I am gluten free because I have a confirmed leaky gut. Until this don't resolve, I can react to gluten or any other food. It doesn't mean I have Celiac disease.
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#21 mushroom

 
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Posted 08 October 2011 - 12:53 PM

Yes, that is correct. But, still if I eat gluten by accident, I know my villi isn't suffering any damage but only have to deal with the symptoms. My blood work was negative and my biopsy too. Sometimes, I eat gluten and I can not track any symptom. So, in this way, it is really hard to know what to do. For now, I am gluten free because I have a confirmed leaky gut. Until this don't resolve, I can react to gluten or any other food. It doesn't mean I have Celiac disease.


You are in a bit of a dilemma, because while it does not mean that you have active celiac disease, neither does it mean that you do not have latent celiac disease. And you are correct that until your leaky gut is healed you can become intolerant of many different foods. I believe you said you are taking L-glutamine. Are you also taking probiotics?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#22 DVjorge

 
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Posted 08 October 2011 - 01:10 PM

You are in a bit of a dilemma, because while it does not mean that you have active celiac disease, neither does it mean that you do not have latent celiac disease. And you are correct that until your leaky gut is healed you can become intolerant of many different foods. I believe you said you are taking L-glutamine. Are you also taking probiotics?


I am doing many things because all my problems begun after a long antibiotic intake that caused intestinal fungal overgrowth. It was too big, that still I am battling it with diet, antifungals, etc.
I think candida is which has caused my leaky gut and the reaction to gluten and more things.
Thanks.
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#23 AMaine

 
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Posted 11 October 2011 - 05:07 PM

They're sending me for a colonoscopy on Monday. This is obviously because they're concerned about the fact that I've still been having issues despite being on the gluten-free diet for a month now. I'm wondering if I should go ahead and eat gluten so my diet will be close to what it usually is before they do the colonoscopy. or if I should wait since they want to see what's going on despite the gluten free diet? Thoughts?
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#24 sb2178

 
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Posted 11 October 2011 - 05:29 PM

They're sending me for a colonoscopy on Monday. This is obviously because they're concerned about the fact that I've still been having issues despite being on the gluten-free diet for a month now. I'm wondering if I should go ahead and eat gluten so my diet will be close to what it usually is before they do the colonoscopy. or if I should wait since they want to see what's going on despite the gluten free diet? Thoughts?


I'd stay gluten-free until you have a diagnosis indicating otherwise. If, for example, you come back with a Crohn's diagnosis, you'll know that you need to go on the refined grains, no beans, and cooked fruit/veg regime for a few weeks to see if that helps. It's the "whole" wheat that's getting you more than the "wheat."

If you don't get any findings from the colonoscopy, go through any potential sources of contamination again. I kept finding them for a while... none of which made huge differences individually but cleared up random questionable issues.

P.S. It's possible to have celiac + IBD. I think you don't need to go there quite yet...
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#25 AMaine

 
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Posted 12 October 2011 - 11:59 AM

Thank you! I am definitely a bit nervous about the test... I've heard horror stories about the prep. I hope it tells me something, because I don't want to feel like I went through all that for nothing!
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#26 GFinDC

 
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Posted 12 October 2011 - 02:22 PM

I think the goop they give you to drink before a colonoscopy is called Movi-prep or some such. Basically cleans your insides out clean as a whistle. Thee are threads on here where people talk their experiences with the prep and such. Don't plan to go anywhere the day before the test but the bathroom.

I used to have green stool which later became black stool. They say the black indicates bleeding, usually not in the colon though, but higher up. Red blood is supposed to come from the colon. I think the idea on that is if the blood come from higher up it gets digested or broken down so it isn't red any more. I think that is kind of a general thing though, not true in every case.

All that just to say that it is possible to have bleeding and not have Chrohn's. Because I don't have Chrohn's.

Also, you should not expect all your symptoms to clear up in a month. Some people have symptoms continue for years. Not saying at all you shouldn't be checked here, just that still having symptoms doesn't mean their is a more serious problem. If you read my signature or others you can see lists of some other foods that can be problems. Also, eating a whole foods diet is going to get you better faster than eating a lot of gluten-free processed foods. A simple diet works well for us.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#27 AMaine

 
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Posted 12 October 2011 - 05:20 PM

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.
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#28 Jessica N.

 
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Posted 12 October 2011 - 08:23 PM

Hahaha I actually have to play piano (and sing) for my church the morning before. I figure I'll start the delicious meds immediately after. My directions sheet says to start at 10 but I'm hoping starting at 12 won't make too much difference - I can't get a replacement and I don't fancy running for the bathroom in the middle of the service. I'm not scheduled until noon the next day so I think that should give me plenty of time.

I really doubt I have Crohn's - my best friend from college has it, so I am VERY familiar with the symptoms of the disease and I have nothing like what she went through.

I think I've gotten it through my head that my symptoms may not all clear up in the first month - but I still hate being even a tiny bit uncertain. I honestly think that if I'm not 100% convinced in the next month or so, I will just go ahead and eat some gluten and see what happens. If what I think will happen happens... then I'll know. This will make me feel better.


I can relate to a lot of what you are going through. I am on week 4 of gluten free (week 2 was BAD, I ate lots of processed gluten-free foods and I'm not use to processed so my stomach and intestines were waaayyyy off track). I THINK I am feeling better, bloating is no longer my biggest complaint as it was in the past, but I still get bloated. I feel so discouraged bc like you I want to know if this is it. How long will I have to eat this way to be sure if I am having issues with gluten? It seems so frustrating! I thought I was having issues with dairy the past 3 weeks, but this week I haven't noticed any relation...I feel like I am all over the place. I have C and don't usually get a relieved feeling after BMs, so my doctor wants a colonscopy and also prescribed me an anti-spasmodic to help relax me so I can have more frequent BMs. He said the non-relived feeling could be IBS, can you have IBS and celiac or gluten issues?
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#29 AMaine

 
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Posted 18 October 2011 - 04:42 PM

The colonoscopy was AWFUL. The prep, which everyone told me was the worst part, was only mildly irritating. The worst part was the IV. It turns out that colonoscopy prep (which leaves you dehydrated) + Raynaud's disease (which makes your blood vessels contract) is a seriously bad combination. About 5 or 6 different people tried to give me an IV, for a grand total of TWELVE jabs. I am bruised from the elbows down - and I'm a choir teacher so I have to play piano. I am sore and miserable. Fortunately they finally got it, or I was about to have an unsedated colonoscopy. I know people have done it but I did NOT want to.

If I don't actually learn something from this, I am going to be seriously annoyed.
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#30 AMaine

 
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Posted 22 October 2011 - 01:40 PM

So the colonoscopy results showed nothing, and I still don't feel right, so I give up. I just ate a full meal of gluten and I'm not feeling any different yet. How soon until I should notice something if I am going to have effects at all?
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