Diagnosed With Gluten Intolerance (Non-Celiac)

[krishna]

Hi how's it going everyone?

I am a new member here, 29 years old male and have been diagnosed with gluten intolerance. For the last 5 months I've been really sick and have been to about 10 doctors. Finally I found someone who is a specialist in gluten (rheumatologist) and he diagnosed me by blood, saliva and stool tests (no endoscopy). According to him I am gluten intolerant and don't have Celiac (hence non-celiac). I do have the HLA-DQ2 gene as well and I did have IgA antibodies elevated even after being on a gluten free diet for about a month when I went for my test. Is there a chance I can develop Celiac in future even after being gluten free? I am trying my best to be gluten-free 100%.

Anyway, I'll share some of my symptoms:

1. Crazy panic attacks all the time after eating food, unrealistic fear

2. Abdominal distension, cramps, extreme constipation

3. Inflammation in the GI tract

4. Vitamin D deficiency and very low Vitamin B12, low thyroid numbers, low iron

5. Severe fatigue, headaches, pressure inside head and around face area

6. Chest pain, tightness around chest, throat, back and pelvic area

7. Back pain (severe) all the time

8. Weight loss - about 30 lbs in 6-7 months without even trying to loose weight

Now I'm feeling better, being gluten free for about 1.5 months, the doctors said he would like to repeat the tests after 3-4 months.. Lets see how it goes. According to him I should recover 100% as long as I avoid gluten.

How long does it take to feel 100% better? Just curios!

Thanks!

[krishna]

I also had and have sometimes:

-palpitations: pounding heart beats

-dizziness

Well, here are some really useful FAQs:

Open Original Shared Link

[Gfresh404]

Hi how's it going everyone?

I am a new member here, 29 years old male and have been diagnosed with gluten intolerance. For the last 5 months I've been really sick and have been to about 10 doctors. Finally I found someone who is a specialist in gluten (rheumatologist) and he diagnosed me by blood, saliva and stool tests (no endoscopy). According to him I am gluten intolerant and don't have Celiac (hence non-celiac). I do have the HLA-DQ2 gene as well and I did have IgA antibodies elevated even after being on a gluten free diet for about a month when I went for my test. Is there a chance I can develop Celiac in future even after being gluten free? I am trying my best to be gluten-free 100%.

Anyway, I'll share some of my symptoms:

1. Crazy panic attacks all the time after eating food, unrealistic fear

2. Abdominal distension, cramps, extreme constipation

3. Inflammation in the GI tract

4. Vitamin D deficiency and very low Vitamin B12, low thyroid numbers, low iron

5. Severe fatigue, headaches, pressure inside head and around face area

6. Chest pain, tightness around chest, throat, back and pelvic area

7. Back pain (severe) all the time

8. Weight loss - about 30 lbs in 6-7 months without even trying to loose weight

Now I'm feeling better, being gluten free for about 1.5 months, the doctors said he would like to repeat the tests after 3-4 months.. Lets see how it goes. According to him I should recover 100% as long as I avoid gluten.

How long does it take to feel 100% better? Just curios!

Thanks!

As far as I am concerned gluten sensitivity and Celiac Disease are virtually the exact same thing. In Celiac, the small intestine becomes damaged. In gluten sensitivity, a different organ may become damaged or simply not enough damage has yet been done to the small intestine in order for you to be diagnosed Celiac.

Healing times vary per individual depending on age and severity of damage. The healing time that I keep is hearing is around two years - for me, I'm 20, I'm thinking it's going to be about 3 to get to %100. Enzymes and Glutamine can help with energy and healing.

[krishna]

As far as I am concerned gluten sensitivity and Celiac Disease are virtually the exact same thing. In Celiac, the small intestine becomes damaged. In gluten sensitivity, a different organ may become damaged or simply not enough damage has yet been done to the small intestine in order for you to be diagnosed Celiac.

Healing times vary per individual depending on age and severity of damage. The healing time that I keep is hearing is around two years - for me, I'm 20, I'm thinking it's going to be about 3 to get to %100. Enzymes and Glutamine can help with energy and healing.

Gluten intolerance and Celiac disease is not the same thing, fundamentally speaking. They may have the same symptoms and recovery times though. Celiac disease is an auto-immune disorder where gluten intolerance is a food intolerance that causes this auto-immune disorder. Gluten intolerance can also cause arthritis, diabetes type I, lupus etc... So you could just be gluten intolerant and not have auto-immune disorders (like Celiac etc).. Or you could have them, the most common being Celiac.

You can find more info here:

Open Original Shared Link

Open Original Shared Link

[cassP]

Krishna- you COULD have Celiac. your Rheumatologist may not feel he can diagnose you without the Small Intestine Biopsies- but that doesnt mean that you do not have Celiac. your DQ2 is a Celiac specific gene which means its certainly possible that u may be positive for the disease as well. im confused that he would specifically label u NONCeliac Gluten Intolerant when your blood tests were positive & you've responded to the diet.

and maybe the other poster didnt mean what they said on a "technical" level... but just in a philosophical kind of way- because i think i understand what they meant- because it is my feeling that YES- Celiac is a specific Autoimmune Disorder in the Small Intestine to Gluten... HOWEVER.. gluten can also cause Crohns, or Hashimotos Thyroiditis, or Barret's Esophagus, or Ulcers.. there's also been studies that show that people with RA, Ms, & Autism test positive for gluten antibodies more than the general population.. studies also suggest it can trigger Lupus, or cause Neurological Disorders... i guess i just understand that you dont have to have Celiac to be in need of a Gluten free life.

[krishna]

Krishna- you COULD have Celiac. your Rheumatologist may not feel he can diagnose you without the Small Intestine Biopsies- but that doesnt mean that you do not have Celiac. your DQ2 is a Celiac specific gene which means its certainly possible that u may be positive for the disease as well. im confused that he would specifically label u NONCeliac Gluten Intolerant when your blood tests were positive & you've responded to the diet.

and maybe the other poster didnt mean what they said on a "technical" level... but just in a philosophical kind of way- because i think i understand what they meant- because it is my feeling that YES- Celiac is a specific Autoimmune Disorder in the Small Intestine to Gluten... HOWEVER.. gluten can also cause Crohns, or Hashimotos Thyroiditis, or Barret's Esophagus, or Ulcers.. there's also been studies that show that people with RA, Ms, & Autism test positive for gluten antibodies more than the general population.. studies also suggest it can trigger Lupus, or cause Neurological Disorders... i guess i just understand that you dont have to have Celiac to be in need of a Gluten free life.

Thanks for your reply. My doctor says all my blood, saliva and stool tests came back negative for Celiac but positive for gluten intolerance. He tested me for EMA, TTG etc and all are negative (through saliva/blood both).. He's also a renowned gluten intolerance specialist and has written books and published papers so its hard not to trust him but he thinks I don't need a biopsy. I don't know if I should go and get a second opinion now from a GI? But a GI will most definitely ask for a endoscopy, I'm sure! But again, I went to a very famous gluten doctor so it is hard for me to trust anyone but him when it comes to gluten intolerance!

[cassP]

Thanks for your reply. My doctor says all my blood, saliva and stool tests came back negative for Celiac but positive for gluten intolerance. He tested me for EMA, TTG etc and all are negative (through saliva/blood both).. He's also a renowned gluten intolerance specialist and has written books and published papers so its hard not to trust him but he thinks I don't need a biopsy. I don't know if I should go and get a second opinion now from a GI? But a GI will most definitely ask for a endoscopy, I'm sure! But again, I went to a very famous gluten doctor so it is hard for me to trust anyone but him when it comes to gluten intolerance!

so what was your "elevated Iga" ?? was that your Anti-gliadin???

i definitely believe that you can be gluten sensitive or gluten intolerant... but your DQ2 + your symptoms just makes me too suspicious.

Regardless of whatever i think- you feel better gluten free- and if you're not like me in feeling like you need a diagnosis to get motivated- then that's great- you should just remain gluten free.. i have no doubt that it's the right thing for u

[GlutenFreeManna]

Thanks for your reply. My doctor says all my blood, saliva and stool tests came back negative for Celiac but positive for gluten intolerance. He tested me for EMA, TTG etc and all are negative (through saliva/blood both).. He's also a renowned gluten intolerance specialist and has written books and published papers so its hard not to trust him but he thinks I don't need a biopsy. I don't know if I should go and get a second opinion now from a GI? But a GI will most definitely ask for a endoscopy, I'm sure! But again, I went to a very famous gluten doctor so it is hard for me to trust anyone but him when it comes to gluten intolerance!

I'm not an expert on the tests, but I have never heard anything like this before in all the posts I have read here. I'm really curious what his basis is for labeling you gluten intolerant versus celiac. You really should get a copy of your test results to read for yourself. Regardless of the label, however, the same strict gluten free diet needs to be observed to stay healthy. Welcome to the gluten free world!

[krishna]

I'm not an expert on the tests, but I have never heard anything like this before in all the posts I have read here. I'm really curious what his basis is for labeling you gluten intolerant versus celiac. You really should get a copy of your test results to read for yourself. Regardless of the label, however, the same strict gluten free diet needs to be observed to stay healthy. Welcome to the gluten free world!

Yes there is a difference between gluten intolerance vs Celiac..

Here is another post that talks about this topic:

And I've posted some links above too!

Thanks!

[krishna]

so what was your "elevated Iga" ?? was that your Anti-gliadin???

i definitely believe that you can be gluten sensitive or gluten intolerant... but your DQ2 + your symptoms just makes me too suspicious.

Regardless of whatever i think- you feel better gluten free- and if you're not like me in feeling like you need a diagnosis to get motivated- then that's great- you should just remain gluten free.. i have no doubt that it's the right thing for u

Thanks for your response, I will get a copy of my result and post them soon!

[mushroom]

From all that I have read so far about celiac and gluten intolerance, there are tests that will measure celiac disease, but no tests that will measure gluten intolerance.

Hashimoto's thyroiditis, rheumatoid arthritis, type 1 diabetes, lupus, are all auto-immune diseases, just as celiac is. I am not sure the distinction you are trying to make.

[ravenwoodglass]

Thanks for your reply. My doctor says all my blood, saliva and stool tests came back negative for Celiac but positive for gluten intolerance. He tested me for EMA, TTG etc and all are negative (through saliva/blood both)..

I also would like to see which tests were done and the results. I don't understand how the doctor can tell you that they were postive for GI but negative for celiac. There are a lot of false negatives in blood testing so if those were negative it doesn't mean you are not celiac. In the end it doesn't matter which label you use for yourself as both conditions, if indeed they are seperate conditions and not different manifestations of the same one, require you to be strictly gluten free.

I myself consider them to be the same. Both cause autoimmune impact when gluten is in the system and the treatment is the same whether you call it GI or celiac.

[krishna]

I also would like to see which tests were done and the results. I don't understand how the doctor can tell you that they were postive for GI but negative for celiac. There are a lot of false negatives in blood testing so if those were negative it doesn't mean you are not celiac. In the end it doesn't matter which label you use for yourself as both conditions, if indeed they are seperate conditions and not different manifestations of the same one, require you to be strictly gluten free.

I myself consider them to be the same. Both cause autoimmune impact when gluten is in the system and the treatment is the same whether you call it GI or celiac.

I didn't have elevated anti bodies for Celiac but had for gluten/wheat. I had only stopped eating for about 3 weeks when I got tested and right 2-3 days before the test I had gotten some cross contamination and consumed some gluten.

Conceptually they may be the same thing but fundamentally they are different. Celiac is the extreme form of gluten intolerance.

Here is some info:

Open Original Shared Link

Well my doctor is an expert in this field, has written books and published papers on gluten intolerance and he did a bunch of tests on me (blood, stool, saliva etc) and he confirmed that I am a non-celiac gluten intolerant. It is hard for me to trust anyone but him because of his expertise.

His name is Alexander Shikhman, MD, PhD, this is one of his books:

Open Original Shared Link

Open Original Shared Link

(If the link doesn't get displayed, the name of the book is "Gluten Nation" and is available on Amazon)

[krishna]

I also would like to see which tests were done and the results. I don't understand how the doctor can tell you that they were postive for GI but negative for celiac. There are a lot of false negatives in blood testing so if those were negative it doesn't mean you are not celiac. In the end it doesn't matter which label you use for yourself as both conditions, if indeed they are seperate conditions and not different manifestations of the same one, require you to be strictly gluten free.

I myself consider them to be the same. Both cause autoimmune impact when gluten is in the system and the treatment is the same whether you call it GI or celiac.

I was also told that there are tons of people out there who are labeled "Celiacs" but are in fact only intolerant to Gluten (or non-celiac GI). So at the end of the day you really need a great doctor for an accurate diagnosis. Yeah I agree that the treatment is the same but to get a 100% accurate diagnosis, a great doctor is needed.

[ravenwoodglass]

I was also told that there are tons of people out there who are labeled "Celiacs" but are in fact only intolerant to Gluten (or non-celiac GI). So at the end of the day you really need a great doctor for an accurate diagnosis. Yeah I agree that the treatment is the same but to get a 100% accurate diagnosis, a great doctor is needed.

Some doctors would label me 'only' gluten intolerant because I don't show up in the blood work they did. If you read my signature you can see what being 'only' gluten intolerant can do to someone.

I am glad you feel you have a good doctor that you can trust and who has told you to be strictly gluten free no matter what label you go under.

[crampy girl]

Hi there, my name is Anita. I am an MD, and have suffered "IBS" symptoms for many years before deciding to Do something about it upon worsening of my symptoms. I too had neg celiac blood work and was told gluten was not my problem. Well, when I eliminated most obvious gluten, I got better! I decided to use enterolab and I had elev IgA anti-giadin (24, normal less than 10) and mild fat malabsorption. Also had low vit D despite several serving of dairy per day. I also had elev anti caisen ab. ( milk protein) and the HLA DQ- 2,1 genes. So, I have been all over index medic us, GI journal,spoken with a friend who is in her GI fellowship training at MAYO on the subject of gluten non celiac intolerance. To my knowledge, they seem to be 2 separate entities but part of a spectrum. There is ongoing research on this hot topic, and no one knows if gluten intolerance leads to celiac. Your body( and mine) is actively reacting to gluten as if it were an infection and making antibodies against it. When this happens, t cells and a whole complement cascade gets activated. The t cell response seems to vary in different people and is the subject of a current research topic at mayo clinic. Hope this helps. Nice to know someone else out there and to hear about non celiac gluten intolerance getting diagnosed more!

[drued]

I was also told that there are tons of people out there who are labeled "Celiacs" but are in fact only intolerant to Gluten (or non-celiac GI). So at the end of the day you really need a great doctor for an accurate diagnosis. Yeah I agree that the treatment is the same but to get a 100% accurate diagnosis, a great doctor is needed.

An elevated tTg or EMA (anti-self antibodies) indicates damage to the intestinal wall. Your antibodies were positive directly to gliadin, which in themselves do not prove intestinal damage, but would prove gluten intolerance. However, your symptoms are very suspicious for celiac disease - in particular the low B12 and the rapid weight loss. If your doctor did not run a total IGA antibody test, then he should have. If you are deficient in the IGA antibody your tTg and EMA test will be falsely negative. Celiac disease is not the worst form of gluten intolerance, considering all the conditions which can result from gluten intolerance. (See Healthier Without Wheat/Stephen Wangen). If you are a person who is obssessed with knowing for sure whether you actually have celiac disease, which must be diagnosed with a biopsy (although false positives are not uncommon), then you will need to get back on a gluten diet for at least 6 weeks before having the biopsy. Some doctors ask for 3 months. Do you really want to do that to your body? But if you don't think you can be motivated to follow a gluten-free diet without the positive diagnosis of celiac disease, then by all means go back on gluten and get the biopsy.

[ravenwoodglass]

If you are a person who is obssessed with knowing for sure whether you actually have celiac disease, which must be diagnosed with a biopsy (although false positives are not uncommon), then you will need to get back on a gluten diet for at least 6 weeks before having the biopsy.

I think the 'false negatives' not being uncommon is what was meant to be written.

[cassP]

i am NOT a doctor or a scientist- but i have a theory ( and funny enough, the last time i saw my GI- he actually sounded like he had a similar one)... I THINK (and just humor me as having an active imagination).. i think that those with DQ2 & DQ8s may only need 1 or 2 simple triggers to start down the path of Celiac... and then all the other DQ genes maybe need more triggers, but also have the possibility..

and look at our world & lifestyle... our GMO food... our wheat alone has been genetically modified and is more glutinous than in the past... our stress, the environment.. and many other triggers that i wont even go into (dont want to start an arguement)- but ya, there just seems to be more and more environmental triggers as time goes on.

my GI theorized that 30% of the population has some type of DQ gene... and that technically there was a possibility that one day this could reach 30%.. and that the drug companies most likely WILL succeed at creating some type of vaccine- cause 30% means a lot of money

anyways... that's just a thought

[mushroom]

Dr. Rodney Ford says 30% of the population has some form of gluten intolerance, by symptoms although not by testing, and that also gives you the 30% potential celiacs. But the drug companies will have to work faster than the chemical companies and the scientists if they want to keep our foods edible because at the current rate of modification everyone is going to become intolerant to something pretty soon Just a Domesday proposition - let all the other shovel-it-in fools live in their little paradise.

[crampy girl]

An elevated tTg or EMA (anti-self antibodies) indicates damage to the intestinal wall. Your antibodies were positive directly to gliadin, which in themselves do not prove intestinal damage, but would prove gluten intolerance. However, your symptoms are very suspicious for celiac disease - in particular the low B12 and the rapid weight loss. If your doctor did not run a total IGA antibody test, then he should have. If you are deficient in the IGA antibody your tTg and EMA test will be falsely negative.

I agree with Drued, Also, there is a lab in Dallas, Enterolab that will run fecal tTg, which will show up before blood work becomes positive. They say you can be gluten free and the test will still be sensitive( not sure if they mean sensitive to tTg or anti gluten ab) but they also do a fecal fat malabsorption test which indicates how your sm intestines are working. Vit D and also A,E, and K are all fat soluble and the ones that are pooped out if you have malabsorption, common in both Celiac and non Celiac gluten intolerance (NCGI), to my understanding. b-12 is water soluble, and so is iron, which are more likely to be related tp Celiac than NCGI.

It may take 3-6 mo for the damage to start to heal up, but your neurologic symptoms (panic attacks, anxiety) should get better right away.

[hazelbrown10]

I'm confused - so a gluten intolerance causes "inflammation" and celiac causes the villi to get worn down? Does gluten intolerance eventually lead to celiac for everyone, or can it stay at the inflammation level not the vill-worn-down level? It seems like a constant state of inflammation is pretty bad too. I don't think my doctor thinks gluten intolerance is that dire - she just said don't eat gluten if it makes me feel bad.

[cassP]

I'm confused - so a gluten intolerance causes "inflammation" and celiac causes the villi to get worn down? Does gluten intolerance eventually lead to celiac for everyone, or can it stay at the inflammation level not the vill-worn-down level? It seems like a constant state of inflammation is pretty bad too. I don't think my doctor thinks gluten intolerance is that dire - she just said don't eat gluten if it makes me feel bad.

ANYONE that has issues with Gluten (rather Gluten Intolerant or Celiac or not sure) & continues to eat Gluten will all suffer from some kind of Inflammation.

im not sure how to answer all your questions- but Gluten Intolerance can definitely be dire! Gluten has been linked to many many many additional diseases & conditions besides Celiac

[crampy girl]

I'm confused - so a gluten intolerance causes "inflammation" and celiac causes the villi to get worn down? Does gluten intolerance eventually lead to celiac for everyone, or can it stay at the inflammation level not the vill-worn-down level? It seems like a constant state of inflammation is pretty bad too. I don't think my doctor thinks gluten intolerance is that dire - she just said don't eat gluten if it makes me feel bad.

I am not sure, I have been all over the Internet and consulted a fellowship trainee(md with 6 years of additional training) to answer that question for myself. She said they don't even test for gliadin ab to detect celiacs because it was not sensitive enough, meaning that asymptomatic healthy subjects also had these ab. But..... The key is to check for damage to the small bowel, which would give you a diagnoses of celiac, even if you didn't have the elev anti tissue ab......so.....the way I understand it is if you have malabsorption( meaning you are pooping out more fat than you should...which leads to vit A,D,E And K deficiencies and possibly if you are lactose intolerant from damage to the superficial villi,and/ or you have loss of water soluble vitamins and minerals(vitamin B 12 being the most easily measured and the most common)....then you most likely Have Celiac. I've read some articles saying that they are two separate entities and spoken to several GI docs who say they are one and the same. But, I do not agree with the latter. I believe that NCGI can lead to Celiac, and that you should be careful to eliminate gluten. Again, the issue being how much of an inflammatory reaction your body mounts, everyone is different. Some have so much of a reaction and keep eating gluten that eventually something turns on and activates the gene that expresses the anti self (tTg ab).

The main issue is that yes you need to eliminate ALL gluten, because you don't want that DQ 2 gene to "turn on" and start expressing ab that attack your tissues.

Does that make sense? There is ongoing research in this area and it is poorly understood, even by trained GI docs.

I hope this explanation helps. BTW, what fecal test did he do?

Also, many celiacs seem to have several food intolerances- something I did not believe at first until I got tested and found out I was also making IgA against milk proteins. And I also can't drink too much wine as I prob am sensitive to the sulfites which gives me the crampy D the next morning.

- Anita

[krishna]

I am not sure, I have been all over the Internet and consulted a fellowship trainee(md with 6 years of additional training) to answer that question for myself. She said they don't even test for gliadin ab to detect celiacs because it was not sensitive enough, meaning that asymptomatic healthy subjects also had these ab. But..... The key is to check for damage to the small bowel, which would give you a diagnoses of celiac, even if you didn't have the elev anti tissue ab......so.....the way I understand it is if you have malabsorption( meaning you are pooping out more fat than you should...which leads to vit A,D,E And K deficiencies and possibly if you are lactose intolerant from damage to the superficial villi,and/ or you have loss of water soluble vitamins and minerals(vitamin B 12 being the most easily measured and the most common)....then you most likely Have Celiac. I've read some articles saying that they are two separate entities and spoken to several GI docs who say they are one and the same. But, I do not agree with the latter. I believe that NCGI can lead to Celiac, and that you should be careful to eliminate gluten. Again, the issue being how much of an inflammatory reaction your body mounts, everyone is different. Some have so much of a reaction and keep eating gluten that eventually something turns on and activates the gene that expresses the anti self (tTg ab).

The main issue is that yes you need to eliminate ALL gluten, because you don't want that DQ 2 gene to "turn on" and start expressing ab that attack your tissues.

Does that make sense? There is ongoing research in this area and it is poorly understood, even by trained GI docs.

I hope this explanation helps. BTW, what fecal test did he do?

Also, many celiacs seem to have several food intolerances- something I did not believe at first until I got tested and found out I was also making IgA against milk proteins. And I also can't drink too much wine as I prob am sensitive to the sulfites which gives me the crampy D the next morning.

- Anita

You can have B12 low even with non celiac gluten intolerance... I've checked all these with my doctor.. I trust him given his track record and publications (books/papers) on this topic..