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

[AMaine]

I just got my test results back from my celiac testing, and they're negative. My doctor started me immediately on a gluten free diet anyway, in case I have non-celiac gluten sensitivity. I am almost disappointed to not have the celiac diagnosis because I want to know for SURE if gluten is a problem or not. I hate that I am now going to have to figure it out on my own through trial and error. I've been gluten-free for a couple of weeks now, and my symptoms HAVE been better. But then, sometimes my symptoms just happen to be better. How do I know if it's just a coincidence? And I've still had occasional symptoms - like plenty of gas, and I had a diarrhea-related incident just today. How do I know if that means the gluten-free diet isn't working, or if I accidentally ate something gluten-y? Any words of wisdom? I'm feeling frustrated - I would love for gluten to be the problem because then I have a solution that will work, but I don't know if it is or if it's wishful thinking.

[mushroom]

You will know when you clear the gluten from your system and your body stops reacting. It is generally recommended that you trial the diet for three months before you decide that it is not helping (or that there is something else at work at well). You should also eliminate lactose along with the dairy because you still could have damaged villi in your small intestine that would impair lactose digestion. Cut both gluten and lactose for three months and then see how you feel. I have often used the analogy that when you quit eating gluten it is NOT like turning off a faucet. It takes a while for everything to settle down and for healing to take place.

I hope that the diet works for you

[AMaine]

Is that also true for gluten sensitivity? I know that with celiac, there can be a lot of damage that takes time to repair, but would it really take that long for the diet to work if I'm a non-celiac?

[mushroom]

Is that also true for gluten sensitivity? I know that with celiac, there can be a lot of damage that takes time to repair, but would it really take that long for the diet to work if I'm a non-celiac?

In the first place the testing is not that accurate - there can be as much as a 20% false negative rate on the blood work. In the second, on the biopsy there has to be a considerable amount of damage done before you are called positive. There can be very microscopic changes that impair digestion that are not classified as celiac disease. Research is coming around to the belief that gluten sensitivity is part of the celiac disease spectrum, that gluten intolerants can go on to become celiacs if they keep eating gluten. Gluten sensitivity has so many things in common with celiac disease and it is my personal belief that it should be treated and handled in exactly the same way because so little is known about gluten intolerance -- these people have been told in the past that they had IBS and they could eat gluten, and they have not been studied.

So give it three months and then come back and tell us you feel no better

[Goof]

I am gluten sensitive (biopsy negative). Give it some time, and I can assure you that if it is gluten, you WILL know. For me, it was only a few weeks, but for others it can be longer. My energy level went through the roof, the "brain fog" went away, and I felt better than I had in years!

So be patient! And be as strict as you can about kicking the gluten out of your diet, as it will make your "results" that much more clear (yes or no). And if it is gluten, you will just feel that much better!

[pain*in*my*gut]

I am gluten sensitive (biopsy negative). Give it some time, and I can assure you that if it is gluten, you WILL know. For me, it was only a few weeks, but for others it can be longer. My energy level went through the roof, the "brain fog" went away, and I felt better than I had in years!

So be patient! And be as strict as you can about kicking the gluten out of your diet, as it will make your "results" that much more clear (yes or no). And if it is gluten, you will just feel that much better!

Yep, time will tell. And be very strict about hidden gluten, to make sure that there is none slipping into your diet under the radar.

[AMaine]

I guess I will just be patient, then. I just wanted to feel better NOW, or at least know that it was definitely coming. The biggest problem right now is the fatigue. I'm a music teacher and I keep getting home at the end of the day and being too tired to do anything else... and this is the EASY part of the year.

Anyway, I have been trying to be really good and not let any gluten slip in. I really don't mind the diet as much as I thought I would. I just want it to work!!! Incidentally, I am one of the people who was told I had IBS (after a negative blood test for celiac). My doctor just told me to "try to figure out what triggered it" and set me loose. It wasn't until I switched doctors very recently that I learned you can have a sensitivity without having celiac, and that I should have been tested again. I went straight for the biopsy this time to be sure. I'm frustrated that if this IS a gluten problem, I could have been feeling better for the last two years.

Thanks for the responses!

[AVR1962]

Having a negative test doesn't mean you don't have celiac, tests for this are not reliable unfortunately. If I had tested 2 years ago I seriously doubt that tests would have came back postive and I am pretty sure I have this all my life.

My advise, as hard as this my sound, is go off gluten (read labels) and dairy for 2 months. I know that sounds like you would giving up alot but actually once we wrap our heads around the thoughts of other foods and other options we really are not depriving ourselves at all. This is actually something my gastro suggested to me and this is how I found out what was giving me issues. After the 2 months then put only one back in your diet for a few days. If you have no reaction then you should be good. Go off both again to make sure the system is clean and then test the other and see if you have a reaction to it. The reason I say dairy is dairy is the #1 allergin, gluten #2, high fructose #3 and many cannot have soy or other grains so there is a variety of foods you coudl be reacting to. Just from what I have read, it is not uncommon for a person with celiac to have more than one intolerance. I am dairy and high fructose intolerant.

[AMaine]

I was just out shopping, and my stomach just exploded in the most embarrassing and horrible way I've experienced yet. The worst part was that there was blood involved, and that's never happened before. I'm freaking out a little extra now.

[Goof]

You said they did a blood test. Have you had an upper endoscopy done, to rule out anything else?

I would give your doctor a call. Sometimes the blood can mean something like an ulcer, which is easily treatable.

[AMaine]

The test results I got this week were from an upper endoscopy. They were negative. I called the doctor, and I'm going to see her Monday as planned.

[Katrala]

There has also been research done that points to celiac and non-celiac gluten-intolerance being two different monsters.

The treatment for both, of course, is a gluten-free diet.

You're not going to hurt anything by trying it.

If it were me, I'd give it a shot while continuing to seek medical advice. Perhaps it is a gluten intolerance or perhaps another doctor will find something completely different.

Good luck!

[AMaine]

So I'm having more diarrhea today - went home sick with it, in fact - and I am still absolutely baffled. Does this mean the diet isn't working? Or that I accidentally ate gluten? I don't see when or how that could have happened... I've been very careful. How on earth am I supposed to know? These episodes are very different from before - I'm sorry for the details here but hopefully if I spell it out, someone will have had a similar experience and can explain. Before, I would feel fine, but then suddenly and abruptly have to go. It would often be loose but not completely liquid, and dark in color, and always ended with mucus. It would be very painful, causing me to sweat all over. Then it would be over and I would feel fine again. Now, my stomach is cramping up in advance. The diarrhea is lighter in color and is completely liquid. There is no mucus and it doesn't hurt while it's happening, just before, and now I feel tired and queasy.

So is this the difference between eating gluten all the time before and now being gluten-free and just accidentally having eaten some? Or is it just not working? I really appreciate all of your help!!

[carecare]

You have to give it time. It actually took my husband 5 to 6 months to recover...meaning he still got diarrhea for that long after eating gluten free. I believe your intestines still have to recover and it takes longer for some than others. He had dealt with D for 15-20 yrs and after 5-6 months gluten free it finally stopped and hasn't come back. He knew gluten free was helping other symptoms so he kept on plugging along and was happy to do so. He did wonder why he was still having D but it just must have taken that long for his intestines to heal up. Now, he absolutely knows when he ingests gluten as he will get D and it takes him a week or two to recover.

[pricklypear1971]

Just give it time.

I've been freaking out because I've had C for years, and now that I have more than one bm/day I think it must be D!

Of course, yesterday I DID have D, but that could have been from anything and I'm trying not to freak out about it.

I've been adding lots of supplements, and that has always "disagreed" with me. I am tolerating them better than ever, now, though.

Try a food diary, maybe that will help you pinpoint anything specific setting it off.

[GlutenDude]

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

[gailc]

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 on the gluten-free diet.

[DVjorge]

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.

[mushroom]

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

[DVjorge]

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

[mushroom]

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?

[DVjorge]

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.

[AMaine]

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?

[sb2178]

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...

[AMaine]

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!