Celiac V.s. Gluten Intollerant

[sugarsue]

I am curious to know, if you don't get an official diagnosis, that either means you have non-diagnosed celiac or you are gluten intollerant right? What is the difference between the two? Is there a difference in symptoms or is it just the same and if it's just the same, why have the two terms?

This is a follow up to the trouble I had with my sister yesterday and trying to figure it all out, how to present the news to my family after we get our results back.

Also, do you know how long it takes to get test results back, in general, for a full blood panel?

Thanks!

Susan

[Mango04]

Based on my understanding, it's possible to have gluten intolerance than hasn't yet caused flattened villi (sort of like pre-celiac), gluten intolerance which will not cause flattened villi but will harm your body in other ways (non-celiac gluten-intolerance), or a reaction to gluten that results from other conditions (for example, some people with Lyme disease can't tolerate gluten).

[Tim-n-VA]

Even with people that get the diagnosis, there is variation in reactions/symtoms.

If you feel bad after you eat gluten you have some type of gluten sensitivity. The different names have some benefit in that you know which body system is reacting (allergy, auto-immune, digestive) but the day-to-day implicatoins are the same - don't eat gluten.

I personnally don't like the term gluten intolerant because it is used to mean different things by different people. Some of the medical website only use intolerant to refer to digestive reactions as in lactose intolerant. On the other hand some people use it to mean any gluten sensitivity and others think it means a pre-celiac condition.

Getting the definitive diagnosis is important to some people because disease/conditions occur in clusters and having a definitive diagnosis of what body system is compromised can be helpful.

[Amyleigh0007]

My allergist dx me with gluten intolerance based on my family history (son has Celiac), symptoms (severe stomach pains and D after eating, fatigue, headaches), and a positive response to the gluten free diet. As soon as I took all gluten out of my diet I felt 100% better. My allergist said that my negative Celiac bloodtest was most likely a false negative (because I had been "gluten light" for about 2 1/2 months prior to my test) and the positive reponse to the diet was proof that I can't tolerate gluten. She said it really didn't matter if it was full blown Celiac or gluten intolerance, I obviously have a problem with gluten and to stay off of it. By the way, my allergist is awesome. She knew 10 times more about Celiac then my primary doctor. So, if you don't like what your primary doctor says try a different kind of doctor.

[cookiequeen]

My blood tests also came back negative but I reacted positively to a gluten free diet. It took only a few days for some of my symptoms to diminish. My gastroenterologist said that it was probably an intolerance and to continue the diet. My GI problems keep improving every week.

[Green Eyes]

If you are gluten intolerant and not celiac will you eventually develop celiac if not on a gluten free diet? Does one with intolerance also follow the strict diet like a celiac?

What about a child with autisum? When they go on a gluten free casein free diet, do they have to follow the strict diet to see success?

Jennifer

[bear6954]

If you have celiacs you have gluten intolerance. However, it is possible to have gluten intolerance and not have celiacs. Normally intolerance does not cause anaphylactic shock and leaves no damage to the villi, but can cause gi symptoms. Celiacs causes damame to the villi and is considered and autoimmune disorder where the body attacks itself. This came from a book called Celiac Disease: A hidden Epidemic by Peter Green M.D. and Rory Jones.

[Rachel--24]

If you are gluten intolerant and not celiac will you eventually develop celiac if not on a gluten free diet? Does one with intolerance also follow the strict diet like a celiac?

What about a child with autisum? When they go on a gluten free casein free diet, do they have to follow the strict diet to see success?

Jennifer

People dont develop Celiac unless they are genetically susceptible.....although having the gene does not mean that you are destined to develop the disease (most do not).

Many people with non-celiac gluten intolerance do follow the diet exactly the same as if they were Celiac. Then there are some who take enzymes which solves the problem for them. Others may have gut infections causing the problem and treating that allows them to tolerate gluten again.

Its really individual. It depends on the cause of the gluten intolerance. If its not Celiac but there is a problem with gluten its best to eliminate it completely. If symptoms do not resolve then there is probably something else going on and figuring that out might actually resolve the gluten intolerance.

If you are trying the diet with an autistic child then yes.....it should be done 100%.

The diet can be extremely beneficial for a child with autism. Some parents who have had difficulty with the diet have found that they have better results keeping the foods in the diet and using enzymes (designed specifically for the autistic population) which break down gluten and casein.

I would only recommend trying that if you know that the child does not have Celiac. I think its best to follow the diet but I realize that many of the kids have extensive food intolerances and they are usually picky eaters. This is why some parents have done better with the enzymes.....some kids do better with keeping these foods in their diet (as long as they are digested properly).

It just depends on the child....everyone is different.

If it were my child I would be doing the diet 100%.

[home-based-mom]

You might want to PM board member Rachel--24 and have her stop by and comment. Out of necessity she has done a *lot* of research.

EDIT - Yikes! Is Rachel psychic? She's posting while I'm telling people to invite her to post!

In the meantime, here is my understanding of it.

You can be gluten intolerant for many reasons, one of which is celiac. Celiac is genetic. There is no "cure" and the only treatment is a strict gluten free diet. If you are gluten intolerant because of celiac, you will never not be gluten intolerant. It is life long. If it took a long time to get diagnosed, the gluten may have done enough damage to your body that you may have to stop eating other foods, too. Everyone is different.

There are other things that can cause your body not to tolerate gluten. These include (but no doubt are not limited to) Lyme disease, leaky gut, parasites, and metal toxicity.

*IF* you get the underlying condition corrected and *IF* your body is able to sufficiently heal and *IF* you do not have the genes that make you susceptible to developing celiac, you *MAY* be able to someday return to eating gluten. Or maybe not.

That's a lot of *IF*s and you need to do a lot of research for yourself, with or without the medical community's help, to determine what is best for you.

Once again, if you are celiac, you will never be able to return to eating gluten without doing serious damage to your body and health. It isn't something that goes away or is outgrown.