Questions

[AlanM]

Hi,

I recently had a blood test for Celiac disease that came back positive. On my doctor's advice I have been on a gluten free diet for the last three weeks and do feel better. The other day I went to a lecture by a nutritionist and after talking to her about my symptoms she felt I was just gluten intolerant and not Celiac. She reasoned I would have been a lot sicker if I had Celiac.

Btw, my symptoms were abdominal discomfort, gas, bloating, fairly frequent diarrhea etc. all which points to gluten intolerance and which have all improved since going gluten free. I had always assumed I had IBS (I still might) but now feel that gluten might have been a major contributor to my plight.

Anyhow, what I'm getting at, and have not been able to verify on the net so far, is the following: Is it possible (or likely) to test positive for Celiac but really only have gluten intolerance?

I've had my symptoms for 25 or more years and I figure if I was Celiac I'd be very very sick by now, much sicker than I was. I talked to my Dr. today and I get the feeling he's not all that knowledgeable about Celiac and gluten intolerance and the difference between the two. That, or I didn't ask the right questions.

Anyhow, any help is greatly appreciated.

Thanks,

Alan

[mommida]

The general mindset is false negatives are more common than false positives for testing.

Run your tests and results past the group for more information.

[mushroom]

I would say the chances are extremely unlikely. There are false negatives but seldom false positives.

Do not listen to the nutritionist! Some people have positive biopsy results with zero symptoms and negative blood results. Wlhether or not you are celiac is not determined by the severity of your gastrointestinal symptoms. Those with lesser symptoms are just as likely to develop other autoimmune diseases and should remain strictly gluten free if they test positive. And there is really no such thing as "only" gluten intolerance. It is a severe disease in and of itself and causes nutrient deficiencies, osteoporosis and many of the same things that celiac does.

[Lisa]

Hi,

I recently had a blood test for Celiac disease that came back positive. On my doctor's advice I have been on a gluten free diet for the last three weeks and do feel better. The other day I went to a lecture by a nutritionist and after talking to her about my symptoms she felt I was just gluten intolerant and not Celiac. She reasoned I would have been a lot sicker if I had Celiac.

Btw, my symptoms were abdominal discomfort, gas, bloating, fairly frequent diarrhea etc. all which points to gluten intolerance and which have all improved since going gluten free. I had always assumed I had IBS (I still might) but now feel that gluten might have been a major contributor to my plight.

Anyhow, what I'm getting at, and have not been able to verify on the net so far, is the following: Is it possible (or likely) to test positive for Celiac but really only have gluten intolerance?

I've had my symptoms for 25 or more years and I figure if I was Celiac I'd be very very sick by now, much sicker than I was. I talked to my Dr. today and I get the feeling he's not all that knowledgeable about Celiac and gluten intolerance and the difference between the two. That, or I didn't ask the right questions.

Anyhow, any help is greatly appreciated.

Thanks,

Alan

I agree, if possible you should run your blood results here for interpretation. There is a possibility of incorrect results, but coupled with your positive dietary results...it leaves not too much doubt

But, your nutritionist is not as knowledgeable as she/he presents. Many people here diagnoses with "just" gluten intolerance can have equal symptoms or more as those with Celiac.

There is new research that suggests that Celiac Disease is at the higher end of a spectrum disorder, with a gluten allergy, gluten sensitivity, Celiac Disease and Gluten Ataxia all playing a significant part in this "Spectrum" of gluten intolerance.

Whether or not you have a gluten sensitivity or Celiac Disease, the RX is the same.

Welcome to the Club!

Edit: Mushroom posted good information, I'm just a slow poke to post.

[GFinDC]

Hi Alan,

Your nutritionist is off the mark. He/she should read up on "silent celiac". Silent celiac is when a person tests positive for celiac but has no symptoms. None, nada. You actually had symptoms so you are not in the silent category. You might develop more serious symptoms if you continued to eat gluten. There are some people who post on this board who are silent celiacs. They have no symptoms but still have celiac disease. Some people find that after they stop eating gluten for a while their bodies react to it more strongly later. That doesn't mean gluten wasn't a problem for them before, but they notice the symptoms more after they start feeling better and then get sick again, IMHO. Either way it is not good for your body to attack itself and destroy parts of your insides that are very helpful to have intact. That's what happens in celiac disease, the antibodies attack the small intestine.

People with celiac disease are more prone to get other auto-immune disease also. I don't know about any studies done on this, but the impression I get is the longer people are eating gluten when they have celiac the more likely they are to develop other auto-immune diseases. There are stories about people being tested for arthritis or some other condition and eventually being diagnosed with celiac disease instead. The main symptom for them was not GI related but joint related or something else. Celiac is not a one size fits all people type of thing, it presents differently in different people.

[frieze]

presuming this person is a nutritionist, and not a dietician, she/he should be minding thier Ps+Qs. Dietician is the legally protected title, any person can hang out a shingle for "nutritionist". good luck

[researchmomma]

Agree with other posters. Until the medical community understands that there isn't an official "face of Celiac", there will always be misconceptions. Does your nutritionist know that there can be silent Celiacs? In addition, is she disagreeing with your blood work? That is interesting. That is like saying, "well, you aren't as sick as the typical cancer patient so maybe you don't have it". I think maybe she should come to these Boards and learn about Celiac and NCGI. And besides what does it matter to her if you are NCGI or Celiac, the treatment is the same. I am unsure of what her point was? That you could eat gluten on occasion if you aren't Celiac? That is malarky. In addition, she should be more mindful of who she says that too. What if you listened and decided to eat gluten and you developed an autoimmune disease or lymphoma. Not to be dramatic but she is an idiot!

Welcome and enjoy the road to better health.

[Jsny1010]

Im not super knowledgeable on the subject of NCGI vs celiac disease but I can say one thing, NCGI doesn't cause damage to your body, it is more of a reaction to not being able to digest the wheat or gluten and causes some discomfort, ibs symptoms etc. BUT Celiac causes your body to be flooded by antibodies and that is an auto-immune response - that causes damage to you, brain, organ, skin, lots of different ways and alot of the symptoms have nothing to do with knowing your sick.

But may I ask, what they tested you for/what the results were? and if you tested positive the next step would be an intestinal biopsy usually ordered by a Gastrointestinal Doctor. (before going gluten free)

[researchmomma]

Im not super knowledgeable on the subject of NCGI vs celiac disease but I can say one thing, NCGI doesn't cause damage to your body, it is more of a reaction to not being able to digest the wheat or gluten and causes some discomfort, ibs symptoms etc. BUT Celiac causes your body to be flooded by antibodies and that is an auto-immune response - that causes damage to you, brain, organ, skin, lots of different ways and alot of the symptoms have nothing to do with knowing your sick.

But may I ask, what they tested you for/what the results were? and if you tested positive the next step would be an intestinal biopsy usually ordered by a Gastrointestinal Doctor. (before going gluten free)

I respectively disagree with you and I think over time medical doctors will find through research that NCGI causes damage or maybe some are not diagnosed correctly.

My daughter has gluten related seizures, malabsorption (which has led to broken bones, short stature, delay in puberty and zero percentile for weight), anxiety and major GI issues. It is not the same intestinal damage as Celiac (agree) but gluten is a neurotoxin and it causes damage to people even if they aren't Celiac. My daughter has high fecal fat that is only caused in Celiacs according to our pediatric GI (other diseases have been ruled out) but she isn't a Celiac (no genes and negative blood work but ALL the symptoms).

Anyway, I do think NCGI can cause damage to the body. My daughter is living proof because she is so much better off gluten.

Hope this makes sense.

Edited to add that you should google The Gluten File. There are some great articles in there about Celiac and NCGI.

[Lisa]

I respectively disagree with you and I think over time you medical doctors will find through research that NCGI causes damage or maybe some are not diagnosed correctly.

My daughter has gluten related seizures, malabsorption (which has led to broken bones, short stature, delay in puberty and zero percentile for weight), anxiety and major GI issues. It is not the same intestinal damage as Celiac (agree) but gluten is a neurotoxin and it causes damage to people even if they aren't Celiac. My daughter has high fecal fat that is only caused in Celiacs according to our pediatric GI (other diseases have been ruled out) but she isn't a Celiac (no genes and negative blood work but ALL the symptoms).

Anyway, I do think NCGI can cause damage to the body. My daughter is living proof because she is so better off gluten.

Hope this makes sense.

Gluten Ataxia is a very real thing. NCGI as well as Celiac and Gluten Intolerance are real as well. Yet different in their own right.

[Jsny1010]

I respectively disagree with you and I think over time medical doctors will find through research that NCGI causes damage or maybe some are not diagnosed correctly.

You are right, I did a poor job making the point of autoimmune vs non-autoimmune - NCGI or celiac disease, or even just Wheat allergy, best medicine is to just stay off of it.

[researchmomma]

You are right, I did a poor job making the point of autoimmune vs non-autoimmune - NCGI or celiac disease, or even just Wheat allergy, best medicine is to just stay off of it.

Hopefully I didn't come off too strong. It is my own issue to be honest. I have a hard time getting people to understand my daughter's very strong reaction to gluten because she isn't Celiac. NCGI doesn't cause autoimmune's as far as they know. My daughter has two of them: eczema and asthma. So who knows! I do understand that Celiac is considered more serious but in some NCGI cases it is pretty darn signficant.

Have a good night!

[Jsny1010]

Hopefully I didn't come off too strong. It is my own issue to be honest. I have a hard time getting people to understand my daughter's very strong reaction to gluten because she isn't Celiac. NCGI doesn't cause autoimmune's as far as they know. My daughter has two of them: eczema and asthma. So who knows! I do understand that Celiac is considered more serious but in some NCGI cases it is pretty darn signficant.

Have a good night!

Nah no worries, my daughter has eczema and asthma also its terrrible, so far no reactions to gluten *knock on wood*

[IrishHeart]

Everyone gave you excellent advice.

I was going to say this:

Positive is positive.

Symptom resolution-- off gluten-- speaks volumes.

Your "nutritionist" is grossly mistaken.

And NCGI does cause extensive damage, despite what some literature says.

If I were you, I would consider myself a celiac and then, see a

proper gastroenterologist for follow up care and testing.

You could have vitamin deficiencies if you have had years of gastro symptoms and blood work should be done. Just because you were not "very very sick", you obviously had issues going on. IMHO

Best wishes and welcome to the Board!

[mommida]

Well I'm going to throw a wrench in the machine.

If gluten is a trigger for Eosinophils, it most certainly does cause damage (auto-immune damage).

In the matter of Eosinophilic Esophagitus, eosinophils cause grooving and furrows, Schataki rings, food impaction, and in the case of my daughter vommiting blood.

Time will tell the damage gluten does to individual bodies. Never underestimate what damage is happening to individuals from gluten and what current "label" they are given by the medical community. Any one who tries the diet and feels better, we are here to support gluten free.

[researchmomma]

Well I'm going to throw a wrench in the machine.

If gluten is a trigger for Eosinophils, it most certainly does cause damage (auto-immune damage).

In the matter of Eosinophilic Esophagitus, eosinophils cause grooving and furrows, Schataki rings, food impaction, and in the case of my daughter vommiting blood.

Time will tell the damage gluten does to individual bodies. Never underestimate what damage is happening to individuals from gluten and what current "label" they are given by the medical community. Any one who tries the diet and feels better, we are here to support gluten free.

This is no wrench, just another example in my opinion. I know someone with this and she is being checked for Celiac. Is there a direct cause and effect with gluten and EE? Sorry for my ignorance.

[AlanM]

Wow, thank you all for your responses! Maybe I need to go back to my initial assumption that I do indeed, have Celiac disease. I suppose it's a bit of a moot point in that the treatment for gluten intolerance and Celiac is exactly the same - no gluten! Still, it would be nice to know for sure. I go back to the doctor in about two months so I think I will ask for a copy of my blood test so I can at least quote some numbers that folks here could help me understand.

I guess the bottom line is that I've definitely noticed positive results (WAY less gas, bloating and diarrhea)in the last three weeks and from what I understand that should get even better as I progress and learn more about where gluten is hiding in the stuff I eat.

I guess the only way to know for sure if I'm Celiac is to have a biopsy but to do that I would have to start eating gluten again from what I understand. My doctor is of the opinion that if you test positive, cut out gluten and after three months or whatever, you feel markedly better, then what does it matter what you call it. Maybe I've had Celiac for years and it hasn't damaged my villi as much as some so I'm not anemic and sickly but still it's wreaking havoc on my bowels with the cramping and diarreah etc. As one poster mentioned, Celiac can present itself differently in different people ,something I didn't know(thank you!)

To the poster who asked about which tests I had I'm afraid I don't know but as I mentioned I will get a copy of my test next visit so I can talk with a bit more authority on the subject perhaps.

Thanks again for all of your responses. I'm sorry I can't be a bit more helpful in my response to you as I'm just starting to understand this disease I've apparently got. Glad I found this site.

Alan

Well I'm going to throw a wrench in the machine.

If gluten is a trigger for Eosinophils, it most certainly does cause damage (auto-immune damage).

In the matter of Eosinophilic Esophagitus, eosinophils cause grooving and furrows, Schataki rings, food impaction, and in the case of my daughter vommiting blood.

Time will tell the damage gluten does to individual bodies. Never underestimate what damage is happening to individuals from gluten and what current "label" they are given by the medical community. Any one who tries the diet and feels better, we are here to support gluten free.

[mommida]

There is a known connection between Celiac and Eosinophilic Esophagitus. (A new diagnoses of EE should be screened for Celiac.) Gluten may be the "trigger" for eosninphil production in some individuals. That leads me to believe the individuals immune system is recognizing gluten and sending out an immune system attack.

It is a relatively newer diagnoses, and I'm really sick of Dr.s telling me they just don't know why it happens,what causes it, what can make it stop.