Can Symptoms Differentiate Between Celiac Disease And Gluten Intolerance?

[AndreaBT]

Brand new here, this is my first post. I don't know all the acronyms and such, so I'm just trying to clarify some things. This thread is basically the same question I came here to ask, maybe, just worded differently.

Are some of you saying there is NO difference between gluten sensitivity and celiac disease? That GS is just an early stage, or maybe a point on a continuum?

I have many more questions, but will have to find appropriate places to post the rest of them...

[nasalady]

Brand new here, this is my first post. I don't know all the acronyms and such, so I'm just trying to clarify some things. This thread is basically the same question I came here to ask, maybe, just worded differently.

Are some of you saying there is NO difference between gluten sensitivity and celiac disease? That GS is just an early stage, or maybe a point on a continuum?

I have many more questions, but will have to find appropriate places to post the rest of them...

Hi Andrea,

When I started this thread by asking the question about *symptomatic* differences, the answers I received indicated that all symptoms appear in both gluten intolerance and celiac disease.

But there is certainly a lot of controversy as to whether gluten intolerance and celiac disease are merely different phases of the same thing, or completely distinct entities, with celiac disease being the true autoimmune disease.

This topic has been discussed many times in other threads on this forum as well. As Lisa (Momma Goose) said, research has to step up and help us here!

Take care,

JoAnn

[happygirl]

The current answer is that the vast majority of the medical community and research sees them as two separate conditions.

However, research is very young with Celiac, and even younger in regards to NCGS. We will have to see where the research leads us. I would be willing to bet that the answer isn't clear cut, and could involve all of the theories (and then some!) discussed here.

Another member previously wrote, and is particularly relevant here:

"Here is what is so great about this discussion: Maybe we are talking about something more than celiac disease --maybe it is a different form of gluten sensitivity, or a unyet discovered form of celiac disease. I have always felt that gluten intolerance could have a similar model as glucose intolerance (pre-diabetes, syndrome X, hypoglycemia, type 1, type 2, gestation, etc).

It has been my soap box and my mission to get someone to address why some people do not meet the diagnosis criteria for celiac disease, yet obviously have some reaction to gluten. Recently Fasano validated what I have been speaking on for 3 years - there are non-celiac gluten intolerances/sensitivities...just what they are and how they relate or don

[ravenwoodglass]

I wonder if it's all that linear. Do we have reason to think villi destruction is "end stage" as opposed to just one manifestation, more like a spoke on a wheel with gluten at the center?

I really should have said the end stage of the gastrointestinal effects. I still wonder where my end stage would have been in my neuro effects. Not far from where I was at when diagnosed I suspect. Unable to read, barely able to walk, memory lapses and trouble talking. I could go on but I won't.

I was I suppose a 'silent' celiac for many years in the terms of obvious GI distress while the autoimmune issues worked on my skin and brain. I like your comparison to the spokes of a wheel it does seem to give a good mental visual of the disorder.

[MNBeth]

Try substituting "reaction" with "symptoms" and see if it makes sense.

It doesn't make it less weird, from my perspective, that we would assume that the same symptoms are first caused by one thing and then later by another, as in the cases of people who first test negative for celiac disease and then later test positive. If the earlier reactions are not autoimmune reactions, what kind of reactions are they?

(I do agree heartily with everyone who says the jury is still way, way out on this question. This is just where I am in my own personal thinking on the matter.)

[Fiddle-Faddle]

If not through biopsy or blood work, how would you know that you have an autoimmune disease?

Those of us with Hashimoto's CLEARLY have an autoimmune disease! And for those of us whose Hashimoto's either disappears or improves greatly on a gluten-free diet and gets worse on a gluten challenge--well, that makes it pretty clear that it's gluten-induced.

Hashimoto's is diagnosed by bloodwork, measuring anti-thyroid antibodies. It is not diagnosed by low TSH alone. It's a good example of your immune system attacking YOU.

Same for Graves' disease, RA, lupus, rosacea, pre-diabetes and diabetes, and all the other autoimmune diseases that clear up on a gluten-free diet. We know through blood work what our "other" (other than celiac) autoimmune diseases are, and we know through blood work (as well as from symptoms) when they improve or clear up on a gluten-free diet, and when they return upon a gluten challenge..

[Lisa]

Those of us with Hashimoto's CLEARLY have an autoimmune disease! And for those of us whose Hashimoto's either disappears or improves greatly on a gluten-free diet and gets worse on a gluten challenge--well, that makes it pretty clear that it's gluten-induced.

Hashimoto's is diagnosed by blood work, measuring anti-thyroid antibodies. It is not diagnosed by low TSH alone. It's a good example of your immune system attacking YOU.

Same for Graves' disease, RA, lupus, rosacea, pre-diabetes and diabetes, and all the other autoimmune diseases that clear up on a gluten-free diet. We know through blood work what our "other" (other than celiac) autoimmune diseases are, and we know through blood work (as well as from symptoms) when they improve or clear up on a gluten-free diet, and when they return upon a gluten challenge..

Pardon me. I presumed that we were talking about Celiac Disease and Gluten Sensitivity. I confined my post to address those issues. I did not notice your word "disease(s)" as plural.

I am not knowledgeable about testing other autoimmune diseases.

[Fiddle-Faddle]

MommaG, we were talking about celiac disease and gluten sensitivity!

I brought up Hashimoto's to illustrate how many people with supposedly "non-celiac gluten sensitivity" do have an autoimmune disease directly triggered by gluten.

[Mother of Jibril]

MommaG, we were talking about celiac disease and gluten sensitivity!

I brought up Hashimoto's to illustrate how many people with supposedly "non-celiac gluten sensitivity" do have an autoimmune disease directly triggered by gluten.

Hmmm.... I agree with you that plenty of people with Hashimoto's have celiac and vice versa... and that some people do get better on a gluten-free diet. But I've read about lots of possible triggers for Hashimoto's. Some of them don't even involve the intestines. For example... microchimerism. This is when fetal cells get through the placental barrier and lodge themselves in other parts of your body (like your thyroid), sending up a red flag to your immune system. The creepy thing is that autopsies have turned up fetal cells in the thyroids of some patients decades after the baby was born.

I'm pretty much in the same boat as you Fiddle-Faddle. Great response to the diet, have a celiac gene, negative result on the blood test (taken at six weeks gluten-free), have more autoimmune disorders (including hypothyroidism)... but no official diagnosis. What are the chances that I have celiac disease? I'm guessing they're a lot higher than 1:100 or even 1:22.

[Fiddle-Faddle]

Just to clarify, I didn't mean to imply that EVERYONE with Hashimoto's has celiac, or vice versa, just that for some of us, it's obvious that we have a gluten-induced autoimmune disease. I agree that there are probably many different causes and triggers for Hashimoto's.

So, for those of us whose Hashimoto's is unquestionably triggered/caused by gluten, that kind of shoots a big gaping hole in the theory that the so-called "non-celiac gluten intolerance" does NOT cause autoimmune reactions, unless you want to use this sort of situation as another way to diagnose celiac (which is certainly a very strong possibility, but has not yet been studied AFAIK).And then in that case, that shoots a hole into the whole "non-celiac gluten intolerance" theory!

[Lisa]

K.

But what was is not made clear, is what came first, other (not to include Celiac) autoimmune diseases or (as you so carefully demonish, but is a recognized scientific term) Non-Celiac Gluten Intolerance. It is widely known that other autoimmune disorders can be found in association with each other. But, is gluten the "cause/trigger" of Hashimoto's, or is Hashimoto's the "cause/trigger" of Non-Celiac Gluten Intolerance? Does the removal of gluten relieve symptoms of all autoimmune diseases?

The chicken or the egg so to speak. I'm just throwing out some questions. I certainly don't have the answers. Supported research links, I would find interesting.

[nasalady]

But what was is not made clear, is what came first, other (not to include Celiac) autoimmune diseases or (as you so carefully demonish, but is a recognized scientific term) Non-Celiac Gluten Intolerance. It is widely known that other autoimmune disorders can be found in association with each other. But, is gluten the "cause/trigger" of Hashimoto's, or is Hashimoto's the "cause/trigger" of Non-Celiac Gluten Intolerance? Does the removal of gluten relieve symptoms of all autoimmune diseases?

The chicken or the egg so to speak. I'm just throwing out some questions. I certainly don't have the answers. Supported research links, I would find interesting.

Hi Lisa,

A recent article by Fasano suggests that celiac disease and the associated production of the cytokine zonulin may be the "mother" of other autoimmune disorders, so to speak. Here is a link to the abstract:

Open Original Shared Link

JoAnn

[Lisa]

Hi Lisa,

A recent article by Fasano suggests that celiac disease and the associated production of the cytokine zonulin may be the "mother" of other autoimmune disorders, so to speak. Here is a link to the abstract:

Open Original Shared Link

JoAnn

Wow JoAnne, it's a bit "heady" for me and I will have to read it about twenty more times in any attempt to understand it.

Could you imagine the scientific breakthrough if...

On another side note. I had a conversation with someone who mentioned a friend with Celiac Disease. She traveled to the Republic of Georgia. And in this very remote section of the world, she was able to eat the bread and wheat products without issue (and always aware of her particular symptoms).

The wheat there has been grown and harvested, without genetic engineering and organically, for centuries, in it's most natural form. Another thought to ponder.

Don't mean to get off topic.

[Mother of Jibril]

Hi Lisa,

A recent article by Fasano suggests that celiac disease and the associated production of the cytokine zonulin may be the "mother" of other autoimmune disorders, so to speak. Here is a link to the abstract:

Open Original Shared Link

JoAnn

Wow... that is useful. Basically, it's the scientific explanation for "leaky gut."

So... if you can heal the intestines you can undo the trigger that set off your autoimmune disorders. However... my understanding is that some damage cannot be reversed. Once you have Sjogren's syndrome, for example, there's no going back. You can do things to make yourself feel better (and prevent more damage), but the symptoms will always be there to some degree.

Applying this to celiac disease... most celiacs can re-grow their villi if they're strict about staying off gluten. However, people with refractory sprue have permanent damage.

[nasalady]

On another side note. I had a conversation with someone who mentioned a friend with Celiac Disease. She traveled to the Republic of Georgia. And in this very remote section of the world, she was able to eat the bread and wheat products without issue (and always aware of her particular symptoms).

The wheat there has been grown and harvested, without genetic engineering and organically, for centuries, in it's most natural form. Another thought to ponder.

That's very interesting! It just goes to show you that we probably don't understand enough about the long-term consequences of meddling with Mother Nature to do so safely! After all, we've only had real agriculture for less than 10,000 years; so celiac disease has been with us for less than 10,000 as well. Many of the grains that we can eat safely are the so-called "ancient grains" such as quinoa and teff.

[nasalady]

Wow... that is useful. Basically, it's the scientific explanation for "leaky gut."

So... if you can heal the intestines you can undo the trigger that set off your autoimmune disorders. However... my understanding is that some damage cannot be reversed. Once you have Sjogren's syndrome, for example, there's no going back. You can do things to make yourself feel better (and prevent more damage), but the symptoms will always be there to some degree.

Applying this to celiac disease... most celiacs can re-grow their villi if they're strict about staying off gluten. However, people with refractory sprue have permanent damage.

Yes, I've read medical articles about diminishing or even eliminating "organ-specific" antibodies such as those for Hashimoto's disease by simply following a gluten free diet. But once your thyroid has been damaged I'm not sure it can heal itself to a significant degree. Mine was nearly dead when I was diagnosed with Hashi's (my TSH was over 90!).

However, my 30-year-old daughter has the antibodies but no real damage to her thyroid yet; I told her that if she stays gluten free she can probably save her thyroid.

I'm hoping that the gluten-free diet will help me with my autoimmune hepatitis and RA!

JoAnn

[Fiddle-Faddle]

K.

But what was is not made clear, is what came first, other (not to include Celiac) autoimmune diseases or (as you so carefully demonish, but is a recognized scientific term) Non-Celiac Gluten Intolerance. It is widely known that other autoimmune disorders can be found in association with each other. But, is gluten the "cause/trigger" of Hashimoto's, or is Hashimoto's the "cause/trigger" of Non-Celiac Gluten Intolerance? Does the removal of gluten relieve symptoms of all autoimmune diseases?

The chicken or the egg so to speak. I'm just throwing out some questions. I certainly don't have the answers. Supported research links, I would find interesting.

In my case, I know that the gluten sensitivity came first--decades of subtle symptoms before the thyroid symptoms began.

.

[mushroom]

In my case, I know that the gluten sensitivity came first--decades of subtle symptoms before the thyroid symptoms began.

.

Same goes for me. Decades of digestive issues, waxing and waning since childhood. Then specific reactions to U.S. corn in my 20's. Then major auto accident. Next thing I know, gut goes crazy, candida, lactose intolerance. Next to appear, rheumatoid arthritis, then psoriasis. Definitely the chicken came first; now it's laid an egg or two.

[nasalady]

Same goes for me. Decades of digestive issues, waxing and waning since childhood. Then specific reactions to U.S. corn in my 20's. Then major auto accident. Next thing I know, gut goes crazy, candida, lactose intolerance. Next to appear, rheumatoid arthritis, then psoriasis. Definitely the chicken came first; now it's laid an egg or two.

Ditto. All sorts of digestive problems, acid reflux, milk "allergy", "IBS", etc., starting almost from birth. My mother says I would wake up screaming with "colic" as a toddler. Those symptoms pre-date all autoimmune disease diagnoses.

[Mother of Jibril]

You know... one place where I think researchers could do a lot of good is by testing the kids of people with autoimmune disorders. It would answer some of these "which came first" questions. Plus, the kids would be better off with an early diagnosis.

I was definitely noticing the symptoms of hypothyroidism by the time I was a teenager: hair loss, mild depression, heavy (irregular) periods, constipation, fatigue... but I thought these symptoms were "normal" for me. July 2008 was the first time anybody checked my TSH (it was 44.3). I had my tonsils removed at age three because they were severely inflammed, pica, acne, a few bouts with angular chelitis (ouch!), iron-deficiency anemia, extremely LOW blood pressure (70/40), lots of problems with gas and bloating, unexplained weight gain, etc...

What really pushed my body over the edge was pregnancy. And grief over losing our second child. That was a HUGE kick in the teeth, but losing Jibril is what pushed me to find answers. Without this loss, I wonder how long I would have gone on... thinking I was "perfectly healthy."