Non-celiac Gluten Sensitivity/intolerance

[Chrisser]

OK, so my genetic test for Celiac was negative. But when I started eating gluten again my digestive system changed again...constipation, stomach cramps, etc. I've also noticed that my mood has changed...more irritable and depressed (but also keep in mind that I've been sick now for 5 months and doctors don't know what's wrong with me...now living back with my mother and paying for my apt halfway across the country...so I don't know if it's pure frustration and misery or gluten contributing to it). So anyway, someone mentioned to me on here before that I could be non-Celiac gluten sensitive or intolerant. I asked my gastro about it, but he said he's confidant that I don't have anything related to gluten. But nothing else really makes sense. So, to those that are non-Celiac gluten sens/intol, I have questions...

Is having NCGS/I just having the symptoms and not the intestinal damage? Or can there still be problems with the intestines (funcion, malabsorption, etc.). I've been noticing some undigested food, I guess, in my stools lately...bits of carrot, piece of lettuce.

I'm thinking about going back on the gluten-free diet to really test it out, but I also have an appt with my GP this coming week and will definitely ask her questions. I'm just so lost and confused right now that I don't know what to eat and what to do with my diet. Doctors don't know what's wrong. There are more tests. I'm just under so much stress. My blood sugar is so low. I'm eating about 7 meals a day and have gained 25 pounds in the last 3 months or so because I get ravenously hungry and dizzy even if my blood sugar levels are normal. And if I gain about 8-9 more pounds, I will be "overweight" according to BMI scales. I used to be super athlete...now I'm completely housebound and controlled by food.

Ugh, anyone have info for me on this stuff? I'm hoping to avoid a trip to NYC to see Dr. Green.

[Guest cassidy]

This is so frustrating! You certainly can have a problem with gluten even if you don't have celiac. If you forget what your doctor is telling you and just look at what your body is telling you, then you will have your answer. Your body doesn't like gluten and you shouldn't be eating it if you have digestive and mood issues when you eat it.

Most of us have had a tough time with doctors. Unfortunately, most of them don't understand. I was about to have surgery for reflux last February. 3 top gi docs laughed at me when I told them I was going gluten-free (I had 2 endoscopies with no damage) and told me that wasn't my problem. I went gluten-free and cancelled my surgery 3 days before I was supposed to have it. I only get reflux as a symptom of being glutened. I already have a 8" scar from the first surgery they did when I was 10 - funny, it didn't help. I have been to so many doctors, told it was all in my head (given antidepressants that didn't help), misdiagnosed many, many times, it took 29 years for Me, not the doctors, to figure this out. My story isn't rare, there are plenty of people who have been misdiagnosed and would still be in pain if they didn't give the diet a try.

I struggled a bit with not having an official diagnosis. I wanted someone to finally tell me that I wasn't crazy and to officially put a name on what has been plaguing me for my entire life. I eventually got over that because I really feel like a new person on this diet. I have my life back, I was finally able to get pregnant and I feel wonderful.

Gluten intolerance isn't something to take lightly. It still causes major problems for your body and you will have to experiment with the diet to see how careful you need to be. It only takes a crumb to set me off and I can't tolerate anything produced on the same lines as gluten - cc is always an issue. Some people aren't that sensitive, you just have to figure that out for yourself. When I eat gluten I get anxiety, reflux, brain fog, frequent urination, migraines, stomach & intestinal issues so it something that I avoid at all costs!

I hope you will trust your body, go back on the diet and not let a doctor who learned about celiac 30 years ago for 1 hour in med school tell you that this isn't what is wrong with you. The diet is free, it is something you can do yourself without needing to be monitored, and if it makes you feel better, then isn't that all that matters? I hope this helps you and you can get your life back. There is a lot of great help here.

[lonewolf]

I also had genetic testing that shows I don't have either of the main Celiac genes. And I DO have major problems with gluten. I was diagnosed with Colitis and then IBS when I was in college, so I'm sure that non-celiac gluten sensitivity can cause trouble in the intestines. I had horrible problems with hypoglycemia for years also. And I gained weight when I had been a good athlete for my whole life. I can relate to where you are and what you're feeling.

The doctor is wrong - you CAN have problems with gluten even if you don't have Celiac disease. Try the diet for a couple of months and see how you feel when you are very strictly gluten-free. This will be a better test than anything the doctor can do to you.

You're at the point where you need to be your own best advocate. No doctor is going to care about your health as much as you do. Listen to your body!

[Chrisser]

Thanks for the response. I was actually on the gluten-free diet for about 3 months before they finally did the genetic test, and my digestive system was much happier. That's enough proof for me, but for some reason I'm having trouble coming to terms with it and making the decision to go back on the diet. I think part of it is emotional because I'm in such a limbo period with all my doctors and testing and am still eating like a horse...and because living with my mother has been so stressful lately and I don't feel comfortable here.

I don't even know what's wrong with my blood sugar...that's the biggest limbo I'm in right now. I have to be admitted into the hospital to do a 72-hour fast to find out whether or not I have a tumor in my pancreas. I eat about 7 meals a day with carbs and protein, but my blood sugar still crashes within 30-45 minutes after eating. The other day I had my usual pork chop, rice, and salad, and my blood sugar went down to 68 about 30-40 after I finished eating. UGH.

I also had genetic testing that shows I don't have either of the main Celiac genes. And I DO have major problems with gluten. I was diagnosed with Colitis and then IBS when I was in college, so I'm sure that non-celiac gluten sensitivity can cause trouble in the intestines. I had horrible problems with hypoglycemia for years also. And I gained weight when I had been a good athlete for my whole life. I can relate to where you are and what you're feeling.

The doctor is wrong - you CAN have problems with gluten even if you don't have Celiac disease. Try the diet for a couple of months and see how you feel when you are very strictly gluten-free. This will be a better test than anything the doctor can do to you.

You're at the point where you need to be your own best advocate. No doctor is going to care about your health as much as you do. Listen to your body!

[Chrisser]

Yeah, I think I have to just bite the bullet and go back on the gluten-free diet. I have reflux, too, but the weird thing is that I didn't get it until AFTER I went gluten-free. I take Nexium every day, and I still have problems with it. Upper GI came back normal, though.

This is so frustrating! You certainly can have a problem with gluten even if you don't have celiac. If you forget what your doctor is telling you and just look at what your body is telling you, then you will have your answer. Your body doesn't like gluten and you shouldn't be eating it if you have digestive and mood issues when you eat it.

Most of us have had a tough time with doctors. Unfortunately, most of them don't understand. I was about to have surgery for reflux last February. 3 top gi docs laughed at me when I told them I was going gluten-free (I had 2 endoscopies with no damage) and told me that wasn't my problem. I went gluten-free and cancelled my surgery 3 days before I was supposed to have it. I only get reflux as a symptom of being glutened. I already have a 8" scar from the first surgery they did when I was 10 - funny, it didn't help. I have been to so many doctors, told it was all in my head (given antidepressants that didn't help), misdiagnosed many, many times, it took 29 years for Me, not the doctors, to figure this out. My story isn't rare, there are plenty of people who have been misdiagnosed and would still be in pain if they didn't give the diet a try.

I struggled a bit with not having an official diagnosis. I wanted someone to finally tell me that I wasn't crazy and to officially put a name on what has been plaguing me for my entire life. I eventually got over that because I really feel like a new person on this diet. I have my life back, I was finally able to get pregnant and I feel wonderful.

Gluten intolerance isn't something to take lightly. It still causes major problems for your body and you will have to experiment with the diet to see how careful you need to be. It only takes a crumb to set me off and I can't tolerate anything produced on the same lines as gluten - cc is always an issue. Some people aren't that sensitive, you just have to figure that out for yourself. When I eat gluten I get anxiety, reflux, brain fog, frequent urination, migraines, stomach & intestinal issues so it something that I avoid at all costs!

I hope you will trust your body, go back on the diet and not let a doctor who learned about celiac 30 years ago for 1 hour in med school tell you that this isn't what is wrong with you. The diet is free, it is something you can do yourself without needing to be monitored, and if it makes you feel better, then isn't that all that matters? I hope this helps you and you can get your life back. There is a lot of great help here.

[CarlaB]

I do not have the genes for celiac, I had a negative biopsy and blood test, yet if I eat gluten I get just as sick as any celiac. I also had the weight loss and malabsorption like a celiac. Enterolab showed I was having an autoimmune reaction as well.

So, you can have all kinds of problems and not actually have celiac disease. I haven't heard of too many medical docs that will diagnose gluten intolerance, though I know they exist. The problem is, it's a sub-clinical condition according to the currently accepted medical tests. So, even if you go to Dr. Greene, if your blood work and biopsy are negative, I believe he will tell you that you don't have it.

My daughter was gluten-free for six months and we challenged it right after Christmas just to be sure she had a problem with it (her symptoms never got better going gluten-free). She is 13 and told me today that she doesn't want to eat gluten anymore. She wakes up in the middle of the night with belly aches. She wouldn't do this if she didn't feel much, much better as being gluten-free means no pizza parties at school (she brings her own treats), she has to pack her lunch every day, every party she goes to is a hassle, etc. She is not celiac either.

My 18 year old daughter also went gluten-free ... when I went gluten-free, my seasonal allergies disappeared completely, she thought that was a good enough reason, and sure enough, her allergies went away.

If you feel better gluten-free, you don't need a doc to diagnose you, just do it. Also, remember, NOT all celiacs have celiac genes!! You could have just caught it before the damage was done.

[CarlaB]

Yeah, I think I have to just bite the bullet and go back on the gluten-free diet. I have reflux, too, but the weird thing is that I didn't get it until AFTER I went gluten-free. I take Nexium every day, and I still have problems with it. Upper GI came back normal, though.

I don't know why it posted the following post twice ...

[CarlaB]

Yeah, I think I have to just bite the bullet and go back on the gluten-free diet. I have reflux, too, but the weird thing is that I didn't get it until AFTER I went gluten-free. I take Nexium every day, and I still have problems with it. Upper GI came back normal, though.

I find that apple cider vinegar helps with this. One teaspoon in a glass of water. I take it twice daily, but I'll take an extra glass if I get reflux. I use Bragg's ... be sure it's REAL apple cider vinegar.

[happygirl]

Chrisser,

Just wanted to say good luck! I know this is frustrating, not *knowing* exactly what the problem is. I think that non-Celiac gluten intolerance can cause just as many problems, but unfortunately, doctors know even less about it than Celiac. Have you been tested for other food intolerances/allergies? If you are interested in that, an allergist/immunologist will be more helpful than a GI. I have had lots of problems post-Celiac dx and have had my problems with gluten questioned by every single doctor...it is unbelievable. I have been told I don't have a problem with gluten. Go with what is best for you. It might be gluten + another problem. Have you been tested for other things? parasites, h.pylori, other foods, etc?

You mentioned Dr. Green---from what I know, he focuses exclusively on Celiac, not non-Celiac gluten sensitivity---his book barely even addresses NCGS.

Hope that you find some answers.

[ngh]

OK, so my genetic test for Celiac was negative. But when I started eating gluten again my digestive system changed again...constipation, stomach cramps, etc. I've also noticed that my mood has changed...more irritable and depressed (but also keep in mind that I've been sick now for 5 months and doctors don't know what's wrong with me...now living back with my mother and paying for my apt halfway across the country...so I don't know if it's pure frustration and misery or gluten contributing to it). So anyway, someone mentioned to me on here before that I could be non-Celiac gluten sensitive or intolerant. I asked my gastro about it, but he said he's confidant that I don't have anything related to gluten. But nothing else really makes sense. So, to those that are non-Celiac gluten sens/intol, I have questions...

Is having NCGS/I just having the symptoms and not the intestinal damage? Or can there still be problems with the intestines (funcion, malabsorption, etc.). I've been noticing some undigested food, I guess, in my stools lately...bits of carrot, piece of lettuce.

I'm thinking about going back on the gluten-free diet to really test it out, but I also have an appt with my GP this coming week and will definitely ask her questions. I'm just so lost and confused right now that I don't know what to eat and what to do with my diet. Doctors don't know what's wrong. There are more tests. I'm just under so much stress. My blood sugar is so low. I'm eating about 7 meals a day and have gained 25 pounds in the last 3 months or so because I get ravenously hungry and dizzy even if my blood sugar levels are normal. And if I gain about 8-9 more pounds, I will be "overweight" according to BMI scales. I used to be super athlete...now I'm completely housebound and controlled by food.

Ugh, anyone have info for me on this stuff? I'm hoping to avoid a trip to NYC to see Dr. Green.

[ngh]

oops,

for undigested food - hydrocloric acid, read Open Original Shared Link

Here's info about intestinal issues, read Open Original Shared Link

consider L-glutamine very helpful for intestines, read Open Original Shared Link

I've also suffered from gluten issues for a long time and found this info with much searching and have since healed the issue and can now eat gluten foods again.

Best wishes.

OK, so my genetic test for Celiac was negative. But when I started eating gluten again my digestive system changed again...constipation, stomach cramps, etc. I've also noticed that my mood has changed...more irritable and depressed (but also keep in mind that I've been sick now for 5 months and doctors don't know what's wrong with me...now living back with my mother and paying for my apt halfway across the country...so I don't know if it's pure frustration and misery or gluten contributing to it). So anyway, someone mentioned to me on here before that I could be non-Celiac gluten sensitive or intolerant. I asked my gastro about it, but he said he's confidant that I don't have anything related to gluten. But nothing else really makes sense. So, to those that are non-Celiac gluten sens/intol, I have questions...

Is having NCGS/I just having the symptoms and not the intestinal damage? Or can there still be problems with the intestines (funcion, malabsorption, etc.). I've been noticing some undigested food, I guess, in my stools lately...bits of carrot, piece of lettuce.

I'm thinking about going back on the gluten-free diet to really test it out, but I also have an appt with my GP this coming week and will definitely ask her questions. I'm just so lost and confused right now that I don't know what to eat and what to do with my diet. Doctors don't know what's wrong. There are more tests. I'm just under so much stress. My blood sugar is so low. I'm eating about 7 meals a day and have gained 25 pounds in the last 3 months or so because I get ravenously hungry and dizzy even if my blood sugar levels are normal. And if I gain about 8-9 more pounds, I will be "overweight" according to BMI scales. I used to be super athlete...now I'm completely housebound and controlled by food.

Ugh, anyone have info for me on this stuff? I'm hoping to avoid a trip to NYC to see Dr. Green.

[ravenwoodglass]

I've also suffered from gluten issues for a long time and found this info with much searching and have since healed the issue and can now eat gluten foods again.

Best wishes.

Or you think you can. Gluten Intolerance does not go away. If you have gluten intolerance you may heal to the point where you think gluten is safe, it is not. You have simply gone into a 'silent celiac' phase, how long it will take before the antibodies build up enough to damage your organs I can not of course say. But damage is going on. It is attacking your brain, your pancreas, your liver, your lymph system, every system in your body. If your lucky you will realize this before permenent damage or lymphatic or colon cancer shows up.

[Fiddle-Faddle]

Chrisser, there are people on this board who have been diagnosed as celiac by biopsy--yet they did not have either of the "celiac genes!"

Based on that, I suspect that either there are more celiac genes than the scientists yet know, or (more likely) that celiac is not dependent on genetics. Personally, I believe that celiac (as defined by villi damage) is what happens when a gluten-intolerant person continues to ingest gluten.

Waiting to diagnose celiac disease until there is intestinal damage visible to the naked eye is rather like waiting to diagnose a peanut or shellfish allergy until the intolerant person has an anaphylactic reaction. (Sorry to be repetitive, I know I've posted that before!)

[ravenwoodglass]

Waiting to diagnose celiac disease until there is intestinal damage visible to the naked eye is rather like waiting to diagnose a peanut or shellfish allergy until the intolerant person has an anaphylactic reaction. (Sorry to be repetitive, I know I've posted that before!)

Oh but that is so true it bears repeating often.

[confused]

Chrisser, there are people on this board who have been diagnosed as celiac by biopsy--yet they did not have either of the "celiac genes!"

Based on that, I suspect that either there are more celiac genes than the scientists yet know, or (more likely) that celiac is not dependent on genetics. Personally, I believe that celiac (as defined by villi damage) is what happens when a gluten-intolerant person continues to ingest gluten.

Waiting to diagnose celiac disease until there is intestinal damage visible to the naked eye is rather like waiting to diagnose a peanut or shellfish allergy until the intolerant person has an anaphylactic reaction. (Sorry to be repetitive, I know I've posted that before!)

I dont have celiac genes and tested postiive threw blood work. I refused the biopsy and my dr was fine with that.

paula

[lonewolf]

I actually met Dr. Fine on Saturday and asked him about this. He said that if you don't have the Celiac genes you pretty much can't get the total villous atrophy that truly defines Celiac. (There are always exceptions.) BUT, he said that it didn't matter - because if you are gluten sensitive you are doing damage to your body and you might be damaging a different part just as badly. He compared the biopsy as a way to diagnose Celiac to waiting until someone had a heart attack to diagnose them with heart disease.

I have come to believe that the autoimmune kidney disease I have, which has been in remission since going totally gluten-free, is one of the ways my body manifests gluten sensitivity. Dr. Fine agreed.

I think that Celiacs and those with Gluten Sensitivity share most of the same symptoms. The only difference is which body part the gluten ends up destroying. We just happen to only have tests that test for villous atrophy that can be linked to gluten.