I Am Also Confused...!

[sven]

Hi there, I am sure that lots of people have asked this quesiton but i have not, so here goes.

As a small child i was diagnosed, with all the obvious symptoms, with Celiac disease, and was gluten free for years. Parents gave up on this and eventually i integrated all food into diet. Don't know if i was ever tested or just the doctor's "gut" feeling.

Went gluten free a little over a year ago, and felt great, but had to go off diet to do endoscopy. Pre-test, doctor said that i would not likely test as celiac, but with my description of symptoms, probably IBS / IBD and fibromyalgia. Test came back negative.

I KNOW for a fact i cannot eat gluten without symptoms.

Am i celiac? Am i something else? does it really matter? Can anyone give advice....When i don't eat gluten i don't have the excrutiating leg pain and skin blisters, etc. ...maybe just "gluten intolerant?....

help!

[Jestgar]

If it makes you feel bad, don't eat it.

You can get all your nutrition from other sources, so there's no reason to eat gluten, if you don't want to.

[CarlaB]

Jestgar's advice is simple and clear, and she's right.

If you were truly diagnosed as a child (by biopsy), then you definately have it. It does not surprise me that your test came out negative as I'm pretty sure your doc didn't have you eat enough gluten for long enough (he's in the minority if he did). The experts say about 4 months, the equivalent of 4 slices of bread per day.

My GI doc only had me eat a little for six weeks ... my test was negative, too.

It really doesn't matter if you have celiac or gluten intolerance, the solution is the same.

[CMCM]

Some kids are born with celiac disease showing up at an early age. Doctors used to firmly believe that kids could and often did grow out of it. This is now known to NOT be true. What may have happened is that kids, like with many adults, developed a kind of "tolerance" to gluten, allowing them to continue to eat it for many years without excessive externally observed symptoms. The intolerance was hiding under the appearance of occasional stomach aches, repeated ear infections, things like that, but nothing overly remarkable. Later in life, these same kids often got hit again in their 20's 30's or later....and perhaps where it had originally been gluten intolerance, it later evolved into full blown celiac disease after celiac was "triggered" by something later in life (surgery, childbirth, etc). I recently read that fully 25% of celiacs are diagnosed after age 60!!! But the reality is, those people had at the very least gluten sensitivity for all those 60+ years, with all the body damage and problems that came from eating gluten for so long. Diabetes....high blood pressure, arthritis, gall bladder problems, on and on and on.

If you have a predisposing celiac gene, then you have a PREDISPOSITION to celiac disease when and if it is ever triggered. Without active celiac being triggered, you still may suffer from the ill meffects of gluten intolerance, and all the possible damage it can cause (short of the villi flattening which occurs with celiac disease.) If you are not eating any gluten and your villi heal, then at that point in time you DO NOT have celiac disease, you merely have the predisposition to develop it IF AND WHEN you eat gluten. Celiac disease can be eliminated by a gluten free diet, but your predisposition to it is always there and can never be eliminated. And once triggered, it seems that active celiac disease is always what happens if you eat gluten.

My mom nearly died from celiac disease, which was triggered in her 40's by a surgery. With the knowledge she now has about gluten, she realizes that prior to her celiac disease being triggered, she suffered most of her life from some degree of gluten sensitivity. When she got so sick, her endoscopy showed that her villi were virtually gone...the doctor said her intestines were smooth as a billiard ball! She stopped eating gluten, her villi regenerated, she has been fine ever since then. If she had a blood test today, if she had an endoscopy, they would tell her "you don't have celiac disease." And she doesn't, because she doesn't eat gluten. BUT....if she ate gluten, she would get horribly and violently sick because for her, that's how gluten affects her. And if she were to continue eating it, she would again incur villi damage and her blood would eventually show antibodies and at that point, doctors could then again tell her she has active celiac disease.

My point in mentioning all this is that celiac disease is something that is externally created--if fact, it is the ONLY autoimmune disease which is caused by an external agent (gluten)...it occurs when a genetically predisposed person eats gluten. If you don't eat gluten, you don't get it. It's all controllable by YOU and your food choices. Of course, it's best to get diagnosed at as early an age as possible so that OTHER internal damage does not occur as a result of untreated celiac disease...."untreated" meaning you are not on a gluten free diet.

The information out there is increasingly telling us that whether you are gluten senstivie OR celiac, both can do similar damage, both can make you similarly sick, both can create a whole host of other problems within your body. For those of us with either situation, gluten is a POISON in the body. Eating it creates inflammation in the body, and can lead to OTHER sensitivites, many of which will go away once the gluten inflamer is removed from the diet....this often doesn't occur immediately, but rather, after a certain time gluten free. Don't underestimate the damage inflammation can do in the body! As one doctor said, eating gluten doesn't CAUSE the many problems linked to it, such as lupus, arthritis, gall bladder disease, etc., BUT.....what eating gluten does is create a problem in your "weakest link" in the body. So that gall bladder disease might never have happened if you hadn't eaten gluten, for example, but eating gluten created continual antibodies and inflammation in your body which then set the stage for your gall bladder to be weakened and get diseased. And of course, no one ever suggests that all the gluten linked problems are caused by gluten, but the fact is, many of them ARE connected. Not all, but many. Do you want to take that chance?

[Joanne11]

Hi Sven,

I too am confussed about the whole celiac thing. I had blood work and a biopsy done. The blood work was posative and the biopsy came back negative. I talked to a lot of people about it, here and at a celiac support group I attended. You will find there are many people out there with conflicting results. I decided to go gluten free starting this past sunday, so I will see how it works out, hopefully I will feel better and just stay on the diet. I agree with everyone here if it makes you feel better just do away with gluten. We may not have celiac we may just be gluten intolerate or we may never know, but either way the treatment is the same.