Need Some Clarification Please!

[conniebky]

Hi Everyone -

I'm a little confused about something, having been gluten free for only two days.

Is there a difference between gluten intolerance, gluten allergy and Celiac disease? Because I have been SUFFERING big time and can already tell a big improvement just from not eating gluten for two days.

Is stopping it enough? Seriously, I've been doing little more than almost crawling through my days before I went gluten free. I'm not sure what the difference, if there is one, between Celiac and gluten allergy or intolerance. Thank you!

Oh, and how do you pronounce it? SEE-LEE-ACK?

[skigirlchar]

gluten intolerance - there is discomfort, but once it passes through the body, you are fine

gluten allergy - similar symptoms felt but a different response internally Open Original Shared Link

celiac - the villi in the intestines are damaged

and yes, your break down for pronunciation is fine (there are a number of variations but yours is what i usually hear)

[Wolicki]

A gluten allergy can be anaphalactic in nature- closing of the airway, etc.

Celiac and gluten intolerance can be very, very similar. Symptoms can be identical. The main difference is that Celiac causes intestinal damage, while intolerance does not. Just because there is no damage, this does not mean it is less pain and illness. There are many who believe that gluten intolerance is a baby case of Celiac, or a case of Celiac before it has progressed to intestinal damage.

[WheatChef]

I wouldn't fully agree with those descriptions, Skigirl.

1) To start with celiac disease is defined in medical terms as an autoimmune reaction towards gluten in the diet that ends up causing your body to attack the villi of your small intestine. This damage theoretically ends up causing a decrease in absorption of nutrients in the intestines which then theoretically causes additional skin and neurological problems.

2) Gluten intolerance has to do with the fact that the above definition of 1) is incorrect and the damage of the small intestine is not needed to illicit reactions in your body at multiple organs (skin, hair, brain, thyroid, lungs and liver). Because this systemic reaction can be caused without observable microvilli damage the patient technically would not have celiac disease yet would still be very much experiencing a gluten intolerance. An intolerance is a very widespread term meaning that either a) your body reacts unfavorably towards a substance, or your intestines have difficulty digesting a substance. Gluten intolerance would be an example of a) while lactose intolerance which doesn't cause major systemic effects would be an example of .

3) I'm not entirely sure that a gluten allergy exists as an allergy is only an IgE system related histamine response. There is such a thing as a wheat allergy which technically is an IgE response to a different protein found only in wheat and not barley or rye unlike gluten which is found in all three.

Many people notice big changes in the first few weeks and then a lot of very small changes over the next few months. It can be somewhat frustrating because based on how much you improve right off the bat you can think that your recovery will continue at the same breakneck speed and that you'll be "cured" of all the other maladies in just a few months. Depending on the severity of damage you had to your system you may wish to use supplements to ease your bodies repairs. Many people on these boards look to things like multivitamins and fish oil to help them recover, just make sure these are gluten-free as well!

[Black Sheep]

This is something I've wondered about as well, esp. since I wasn't tested. It almost sounds that with celiac, it would then take much, much, longer for the person to feel better and some of their related health problems to start healing....is that right, or no? And it also sounds as if the gluten int. person really doesn't have a whole host of other health problems?

My daughter has the classic "tummy troubles" that most of us have had, but recently she made herself a dinner that had no gluten, and even though she used all her usual cooking stuff (which no doubt had gluten "remnants" all over it) and she said afterwords she felt great, and all the symptoms disappeared. Until the next time she ate it, of course.

So would this indicate more of an intolerance than actual celiac?

[conniebky]

I started (about a week ago) taking a Multi vitamin, fish oil and magnesium supplements. The brand is Sundown. I didn't think to look if there's gluten in them. What do most people take?

[WheatChef]

The length of time required for recovery is all dependent on how long the damage was occurring and the severity of the reaction. That is for both those with celiac and non-celiac gluten sensitivity (NCGS). Most with celiac and NCGS will notice some immediate improvement but a lot of systems won't really start coming back online for another 6 months of being clean.

As far as supplements go, there are very wide range of them out there. I used to go to Vitamin Shoppe for my supplements but after I went gluten free and went through the ordeal of getting poisoned by a multivitamin I contacted their customer service and was told that a) they had no gluten-free list available in their stores or on their website and if I wanted to know that information I would have to email them for each product I was interested in. This pissed me off to no end, being treated like some severely rare case. Now as far as supplements go I only buy those that voluntarily list gluten-free right on the bottle. Those people want me to feel safe buying their product, they've actually put some effort (doesn't even take more than printing 6-8 letters on the bottle) into getting my business and so they do. Currently I use NatureMade and Nature's Bounty products.

[Skylark]

Hi Everyone -

I'm a little confused about something, having been gluten free for only two days.

Is there a difference between gluten intolerance, gluten allergy and Celiac disease? Because I have been SUFFERING big time and can already tell a big improvement just from not eating gluten for two days.

Is stopping it enough? Seriously, I've been doing little more than almost crawling through my days before I went gluten free. I'm not sure what the difference, if there is one, between Celiac and gluten allergy or intolerance. Thank you!

Celiac is a very specific clinical entity, where your intestine is damaged with an autoimmune reaction. There are often autoimmune antibodies in the bloodstream, and the gold standard for diagnosis is an intestinal biopsy showing damage. Doctors will also diagnose a blistered, itchy rash called dermatitis herpetiforms (DH), or a neurological problem called gluten ataxia. Both the rash and ataxia are known to be autoimmune and either can appear without the intestinal damage but they're considered part of celiac disease. Going on a gluten-free diet usually makes the symptoms go away. Celiacs can have a lot of other symptoms, including bloating, abnormally short stature (or failure to thrive in children), depression, neuropathy, canker sores, anemia, osteoporosis, or fatigue.

It's important for people with celiac disease to avoid gluten because it can worsen the disease, is suspected to trigger other autoimmune problems and in rare cases, celiacs who continue to eat wheat can get a nasty condition called "refractory celiac" where the gut doesn't heal. They also have a higher incidence of lymphoma. That's why people are advised to get a solid diagnosis of yes/no for celiac disease before they stop eating wheat.

Wheat allergy can be diagnosed by an allergist. "Baker's asthma" is an example of wheat allergy, where a person becomes allergic to inhaled flour. There can also be reactions to eating wheat, including typical allergy symptoms like oral itching, stomach upset, hives, edema, asthma, rhinitis, and even anaphylaxis.

Gluten intolerance is pretty much everything else. You're negative on allergy tests, negative for celiac disease, but eating gluten makes you feel awful. It can cause many of the same problems seen in celiac disease, including GI trouble, canker sores, depression, neuropathy, or fatigue. Researchers like Markku Maki are still trying to understand gluten intolerance, and Maki has a hypothesis that there is a broad spectrum of gluten-caused disease, with celiac, DH, and ataxias at the extreme and gluten intolerance in milder cases. He thinks this because there are genes that predispose people to celiac and many people with those genes have negative blood tests and biopsy but still feel better off wheat. It's not clear whether there is an autoimmune component to gluten intolerance, or what the exact mechanism is, and eating some wheat is not considered as risky (though it might make you feel awful).

[mushroom]

Gluten intolerance is pretty much everything else. You're negative on allergy tests, negative for celiac disease, but eating gluten makes you feel awful. It can cause many of the same problems seen in celiac disease, including GI trouble, canker sores, depression, neuropathy, or fatigue. Researchers like Markku Maki are still trying to understand gluten intolerance, and Maki has a hypothesis that there is a broad spectrum of gluten-caused disease, with celiac, DH, and ataxias at the extreme and gluten intolerance in milder cases. He thinks this because there are genes that predispose people to celiac and many people with those genes have negative blood tests and biopsy but still feel better off wheat. It's not clear whether there is an autoimmune component to gluten intolerance, or what the exact mechanism is, and eating some wheat is not considered as risky (though it might make you feel awful).

So under this scenario you are describing (by the way do you have a link to any of Markku Maki's research??), where do those who are non-celiac with other autoimmune diseases like Hashimoto's, RA, diabetes, fit into the scheme of things?

[Skylark]

Markku Mäki is sort of a "rock star" in the celiac research world. I was fortunate enough to see a 45-minute talk by Dr. Mäki as part of a celiac research symposium. He spent a lot of time talking about the spectrum of celiac disease, including latent disease and the breadth of HLA-mediated gluten intolerance. He said he's being laughed at (again) because he is proposing a model where there is a broad spectrum of gluten-related disorders that may or may not end with villous atrophy. He is not worried because people laughed at his anti-endomysial antibody ideas in the '80s. His website. Open Original Shared Link

A lot of his work has been around diagnosis, since Marsh I and Marsh II lesions can be caused by other conditions as well as celiac (like giardiasis), and anti-tTG and anti-endomysial antibodies don't always show up in the bloodstream of people with Marsh III lesions who really need to be on a gluten-free diet.

He mentioned case studies of people with first degree celiac relatives who felt a LOT better off gluten, even though they had no celiac antibodies. He had a case of a person who was depressed and had a brother with celiac. The guy bought an anti-tTG test in a drug store (they're available in Europe) and tested positive. He had no GI symptoms whatsoever to suggest the depression was celiac but going on a gluten-free diet fixed the depression. I can't recall whether there was a biopsy result. Mäki showed pictures of a brother and sister too. The sister had childhood celiac with the bloated belly. The brother was normal, but seroconverted later in life.

He wrote a great commentary in Gut, but it's not available without a subscription.

Open Original Shared Link

This is one of his studies documenting clinical signs of celiac with normal mucosa.

Open Original Shared Link

A prospective study in schoolchildren with anti-endomysial antibodies and normal mucosa.

Open Original Shared Link

He has also picked up seroconversions to celiac in previously healthy older adults, showing a snapshot of the disease process.

Open Original Shared Link

Mäki only mentioned type I diabetes in his talk, which has some shared genes with celiac. He said that he is quite sure the prevalence of celiac is increasing in Finland rather than the prevalence of diagnosis because there is a corresponding rise in type I diabetes. There has not been an issue diagnosing type I diabetics in a long time, so rises in diagnosis reflect rises in prevalence.

He made the interesting observation that while it is in increasing in Finland, in the parts of Russia that are contiguous with Finland and share genetic background, the incidence is lower by random screening. He is concerned that there is something about a wealthy lifestyle (Russia is poor) that triggers autoimmune disorders in people with susceptible backgrounds.

Come to think of it, he mentioned Sjogren's too. There is a very high incidence of celiac among Sjogren's patients and he thinks there are shared genetics there.

[WheatChef]

Unfortunately there's no catchy name for the whole gluten-sensitivity and you can't technically use Celiac to describe the systemic effects since celiac is based on an old greek word for abdomen. Yet many doctors focus on only the reactions in that specific location as if they could only diagnose someone with a kicking belly as being pregnant by if they had a craving for a cucumber and jelly sandwich.

[mushroom]

Thanks for the links, Skylark. It sounds as though he is heading toward a broader embracing of gluten intolerance.

[DonaldandAlanda Evans]

When I was diagnosed with Celiac Disease, I asked my doctor what the difference was between Celiac and gluten intolerance, and she had a pretty funny response. "With Gluten Intolerance, you have issues digesting gluten. With Celiac Disease, gluten digests you"

Look into that anyways you choose.......I got a kick out of it