Celiac Vs. Gluten Intolerance

[shirleyujest]

This may be a question with no clear answer but here goes. What is the difference, if any, between the healing/recovery of someone who is GI vs. someone who actually has celiac disease?

Of course, I'm aware that GI may really be undiagnosed celiac disease, so that's the caveat. I'm reading these articles and posts about celiac disease and doctor says I don't have it. So I've gone gluten-free based on the theory that I'm GI. That's plenty good reason.

This brings up questions like, are the vitamin deficiencies similar in celiac disease vs. GI? Is the course of healing similar? I'd like to know what to expect in general b/c I want to be on the lookout for other food allergies/intolerance should some symptoms continue unimproved.

As I may have posted elsewhere, I was dx'd w/lupus 5 yrs. ago and the fatigue and other symptoms have been so severe it has been disabling. I'm on a fixed income and have only been able to work freelance in teeny tiny amounts. I really want to work again, even if p/t, or contribute in some way. Going off g a few weeks ago I've been feeling bursts of energy. So now faced with, what might I be able to do? This is my reason for asking the questions about what changes I may expect. I realize there's no crystal ball. But am wondering what the road map might tell me for different paths I could follow.

I'm having a hard time w/reading comprehension so if someone posts a link I'll definitely read it but may come away scratching my head. If someone would be kind enough to post in a couple sentences to "translate" a medical study into plain English I would be grateful. Or if you would share personal anecdotes that's great too.

Or if there's no real answer and I'm asking for the moon, then say so and I'll understand! Wouldn't be the first time.

TIA!

[Lisa]

Hi!

The difference between a gluten intolerance and Celiac is that with Celiac, you often have gut damage that will hinder any absorption.

Symptoms can often be the same, but there is an autoimune response with Celiac Disease that will damage your small intestines (villi to be specific).

Here is a link that is easy to understand:

Open Original Shared Link

[ang1e0251]

What if your dr is wrong and you do have it? Just putting that out there as it wouldn't be the first wrong diagnosis.

It doesn't really matter, if you're responding well to the diet, that's the best feeling in the world. I don't think any of us can predict how far you can go. It might be fun for you to keep a simple diary where you say how you felt that day. Maybe today you say," I felt great! I had enough energy to work for 1/2 an hour!" If you keep track like that, in a few weeks or even months you could look back and see how much progress you've made. That would be satisfying and could also help your dr check your progress.

I hope this is a first step in much better health for you. Keep us posted. I want to hear about all the great things you are accomplishing!

[shirleyujest]

What if your dr is wrong and you do have it? Just putting that out there as it wouldn't be the first wrong diagnosis.

It doesn't really matter, if you're responding well to the diet, that's the best feeling in the world. I don't think any of us can predict how far you can go. It might be fun for you to keep a simple diary where you say how you felt that day. Maybe today you say," I felt great! I had enough energy to work for 1/2 an hour!" If you keep track like that, in a few weeks or even months you could look back and see how much progress you've made. That would be satisfying and could also help your dr check your progress.

I hope this is a first step in much better health for you. Keep us posted. I want to hear about all the great things you are accomplishing!

Thank you both.

Yeah that's what I'm trying to figure out is whether it was a false neg. I'm already seeing hints that there's more than just digestive improvements which from what I gather points to celiac disease not GI. A health diary is a good idea, I actually keep one per my attorney's instructions.

It's a bit surprising that more doctors are not alert to the signs but.. no doubt progress will continue to be made.

[OptimisticMom42]

Good Morning Shirleyujest,

I'm still not convinced that there is a difference between gluten intolerance and celiacs. If you notice your intolerance early enough to prevent damage to the villi you are not a celiac. But once off gluten the villi heal and you are still a celiac!

My problem with this whole thing is that my Aunt Susan died of intestinal cancer at age 39. She was a wonderful Aunt. She took us to the Detroit Zoo, Henry Ford Museum and to Disney movies. As a teen when my Mom was "totally stupid" I lived with my Aunt. She died when I was 19. She was not diagnosed as celiac.

My Mom has IBS, dairy and soy intolerance, and fibro. She insists that she does not have celiacs.

I do have celiacs. No test needed. The villi damage caused sudden dairy and soy intolerance, I have DH scars and the gluten challenge has been conclusive.

The list of friends, family, co-workers who have conditions that are indicative of gluten intolerance is forever long. They are sick and some like my Aunt are going to die far to early because of this failure to diagnose celiacs.

Sorry to go on and on. I just don't think it's wise to insist on the "golden standard" dog trophy diagnosis. That way of thinking is hurting people. Not eating gluten is harmless.

[Nancym]

I had a diagnosis of an autoimmune disease that was pretty awful, basically I hurt in every joint, sometimes even my ribs. Giving up gluten and adopting a paleo diet I eliminated all those symptoms and got off the meds. Basically I don't eat any grains, legumes or dairy, although I cheat on the legume restriction a bit. I eat a lot spices, coconut milk in things, curries... the diet is anything but boring with good cooking skills and imagination.

[shirleyujest]

Good Morning Shirleyujest,

I'm still not convinced that there is a difference between gluten intolerance and celiacs. If you notice your intolerance early enough to prevent damage to the villi you are not a celiac. But once off gluten the villi heal and you are still a celiac!

My problem with this whole thing is that my Aunt Susan died of intestinal cancer at age 39. She was a wonderful Aunt. She took us to the Detroit Zoo, Henry Ford Museum and to Disney movies. As a teen when my Mom was "totally stupid" I lived with my Aunt. She died when I was 19. She was not diagnosed as celiac.

My Mom has IBS, dairy and soy intolerance, and fibro. She insists that she does not have celiacs.

I do have celiacs. No test needed. The villi damage caused sudden dairy and soy intolerance, I have DH scars and the gluten challenge has been conclusive.

The list of friends, family, co-workers who have conditions that are indicative of gluten intolerance is forever long. They are sick and some like my Aunt are going to die far to early because of this failure to diagnose celiacs.

Sorry to go on and on. I just don't think it's wise to insist on the "golden standard" dog trophy diagnosis. That way of thinking is hurting people. Not eating gluten is harmless.

Hi OM, I'm sorry you lost your Aunt Susan. She sounds very special in your life.

I lost my dad when he was just53 to lung cancer. He did smoke, but not everyone who smokes gets lc. He had a lot of the same symptoms I've had ... indigestion, joint pain etc. (temper lol) He even had a thing like me where he could lay on one side but not the other b/c his reflux got worse. It's hard to think I might have had him in my life all this time (he passed away 22 yrs ago) if whatever health problems he had had been found at the source. That sounds like what you may be thinking about your Aunt Susan.

Your intuition is right, the testing is not refined yet therefore not terribly useful for many -- or worse, destructive if celiac disease goes undx'd and people trust that and continue to eat g. No doubt more will be understood and testing will be refined but in the meantime, some of us just have to go with what makes sense.

I'm one of those people who has to "know" -- or feel like I know lol sometimes different -- and it's been frustrating getting a neg. blood test. And being too chicken to get an endoscopy. *bwok* But I'm kindof reckoning with the not knowing, and more ready to just go with the flow and be gluten-free.

Thank you for sharing your story. I'm glad you made the discovery and hope you continue to heal.

[shirleyujest]

Well the timing for this question was pretty good. Here's a line from the Harvard health newsletter (link in the publications category):

One major difference between celiac disease and grain-related digestion problems is that when it's just a digestion problem it typically doesn't lead to malabsorption and nutritional deficiencies.

So there it is.

[Nancy Kotlowski]

This may be a question with no clear answer but here goes. What is the difference, if any, between the healing/recovery of someone who is GI vs. someone who actually has celiac disease?

Of course, I'm aware that GI may really be undiagnosed celiac disease, so that's the caveat. I'm reading these articles and posts about celiac disease and doctor says I don't have it. So I've gone gluten-free based on the theory that I'm GI. That's plenty good reason.

This brings up questions like, are the vitamin deficiencies similar in celiac disease vs. GI? Is the course of healing similar? I'd like to know what to expect in general b/c I want to be on the lookout for other food allergies/intolerance should some symptoms continue unimproved.

As I may have posted elsewhere, I was dx'd w/lupus 5 yrs. ago and the fatigue and other symptoms have been so severe it has been disabling. I'm on a fixed income and have only been able to work freelance in teeny tiny amounts. I really want to work again, even if p/t, or contribute in some way. Going off g a few weeks ago I've been feeling bursts of energy. So now faced with, what might I be able to do? This is my reason for asking the questions about what changes I may expect. I realize there's no crystal ball. But am wondering what the road map might tell me for different paths I could follow.

I'm having a hard time w/reading comprehension so if someone posts a link I'll definitely read it but may come away scratching my head. If someone would be kind enough to post in a couple sentences to "translate" a medical study into plain English I would be grateful. Or if you would share personal anecdotes that's great too.

Or if there's no real answer and I'm asking for the moon, then say so and I'll understand! Wouldn't be the first time.

TIA!

I am new at this but my guess would be that one becomes before the other and one goes away and they other does not. By that I mean you must be GI in order to get a diagnosis of full blown Celiac. But once you go gluten-free and your intestines heal you do not have Celiac now but you still are GI so if you go back to eating Gluten you will become a full blown Celiac again. Does that sound correct to the rest of you?