Totally New To This...

[tummytrouble]

So I've been battling stomach problems for about 6 years now. For about 4 years I visited multiple gastro doctors, took every IBS med known, and even had my gall bladder removed. They never once mentioned a gluten intolerance. I became so frustrated I just gave up and accepted by new life being sick all the time. I recently started reading up on a gluten free diet by accident and noticed that I almost have every symptom mentioned with having an intolerance. I've been eating gluten free now for about a week and already feel so much better and can't wait to see how continuing makes me feel. I'm also breastfeeding my 7 month old and have seen dramatic results with her behavior, poops (sorry, very common subject with moms), and sleeping habits (all SO MUCH better). I have 2 questions...

If you have a gluten intolerance does that mean you must have celiac disease?

If you live gluten free then have like a piece of bread does that start you back at step 1 or make you really, really sick?

Thanks in advance for your response!

[hathor]

Some doctors only recognize celiac or nothing. But others recognize non-celiac gluten sensitivity. Basically, this means you are sensitive to it, if you continue eating it damage will be done, but damage hasn't progressed far enough that the traditional tests for celiac are positive (or damage is being done to other parts of the body).

Here are a couple articles --

Open Original Shared Link

Open Original Shared Link

If you are feeling better, to my mind that is a good indication you are sensitive and are better off without the stuff. You don't need an official diagnosis simply not to eat something.

I'm sort of in the same boat as you. I started going gluten-free a few weeks ago and I feel better. I'm having testing done by Enterolab right now just to make sure it isn't the placebo effect (what my husband thinks ) But my symptoms are milder than yours, so I don't know that you need to do the testing unless you really want to know for sure. Obviously, your baby isn't being affected by a placebo effect, either!

I don't think having gluten after not having it for awhile puts you back to step 1. Your body would have been repairing itself in the meantime. You might get sick though. But you were feeling sick with the stuff already, so I would think it would be well to continue.

That is, unless you DO want to have your doctor do traditional testing for celiac. Then you have to have been eating gluten. A number of people go off gluten and then don't want to go back on it just to have the test. It makes them feel so bad.

[aikiducky]

Welcome to the forum!

For question one, I don't really know, and I don''t really know if anyone really knows. "Officially" doctors have only been calling it celiac disease if you have a small bowel biopsy that shows that the vili in the interstine are flattened. Any other gluten related health problems have been called gluten intolerance or not acknowledged at all. But of course the intestine doesn't get damaged overnight, it's a process that takes time, so one can have symptoms of celiac disease before the total flattening to the vili, and develop the damage later unless they go gluten free. In which case they have celiac, it just got detected early.

Then again it's possible that some people would never develop a lot of damage in their intestines but have neurological damage instead for example, and in that case until now it didn't get called celiac disease, even though for those people gluten is just as bad. And some people possibly only have digestive problems but never get very serious health problems even if they continue eating gluten.

The problem is, it's very hard to predict which group you would fall under, so it's risky to continue eating gluten is it gives you symptoms. The only exception is if you have a positive biopsy, in which case you KNOW that gluten damages your insides.

For question two, most people find out eventually... either they start to doubt their diagnosis and test it by eating a piece of bread, or they accidentally gluten themselves with a crumb that sneaks in somewhere. Peoples reactions vary a lot so it's impossible to say how it will be for you.

Regularly cheating if you really have a problem with gluten is a bad idea. It can lead to serious health problems. You might get away with it for a while, but in the end you could get really sick.

Hope that helps.

Pauliina

[Ursa Major]

Hi, and welcome to this board. Apparently the doctors have failed you (welcome to the club). You have taken your health into your own hands, good for you.

It doesn't matter if a doctor would call it celiac disease or not, you're obviously intolerant to gluten, and so is your baby. The two of you need to stay off gluten for life. I am glad you're both feeling better!

[Marlene]

Hi Tummytrouble,

I have been through the same thing as you... right down to having my gall bladder removed. None of the doctors I went to ever suggested gluten intolerance. I went to one Gastroenterologist after I was already on the gluten free diet for about 1 month (and noticing improvements then already) and he said since my blood work came back negative for Celiac, it had nothing to do with gluten. I asked him why the gluten free diet was helping. He responded that it's an expensive diet, he would not recommend it and he wanted to give me a prescription for drugs instead !!?? Oh yeah, he also said I had "IBS" - something doctors have been telling me for about 17 years.

So to answer your question, I do not have Celiac (according to blood work and gene testing) however, I do have gluten and casein intolerance (tested through Enterolab). I have been on the diet since last summer and am getting better all the time.

Glad to hear that you and baby are getting better! Congratulations for finding out what was wrong with you. BTW, I still really wish I had a gall bladder, don't you? My digestion really went for a loop after they took it out.

Marlene

[CMCM]

Welcome to the clueless doctor club! What doctors DON'T know can definitely hurt us all! While doctors tend to be quite clueless about celiac disease....at best they know only of the most extreme symptoms.....even MORE doctors are entirely clueless about the whole syndrome of gluten sensitivity. Many many knowledgeable researchers are pushing for re-naming the whole thing: Calling it all gluten sensitivity, with celiac disease (governed by the possession of a celiac gene and villi damage in the intestines) being only one extreme subset of the overall syndrome of gluten sensitivity.

This lack of knowledge unfortunately ignores several important things: First, gluten sensitivity can cause all the same types of unpleasant symptoms as does actual, active celiac disease. You can be just as sick with both of them. Second, lacking a celiac gene you might not get the villi flattening in the intestines, BUT....it can still cause inflammation in the body and can damage organs and tissues.

This ignorance on the parts of the majority of American doctors is causing very sick people to be told gluten is not the problem, and telling them to go on and continue eating gluten...that their problem must be something else. So we unfortunate patients spent a ton of $$$ testing everything under the sun and even having useless surgeries (removal of gall bladder, in some cases) trying to resolve the problem thru other means. It's like shooting in the dark: Let's try this, let's try that...maybe one of them will work! YIKES!

How hard is it to go gluten free for a month or two???? No prescription is required. You are not risking your health by doing this. And if by not eating gluten you feel better and better, why not consider that your answer.

We all need to stop insisting that a doctor (doctors) who often actually know LESS THAN WE DO about gluten sensitivity confirm to us what we've already figured out thru diet.

Doctors know only what they study...study in depth in many cases, and on top of that, what they have a lot of experience treating successfully. If it is US who have to suggest gluten as a problem....well, how can you have faith in that doctor and his/her knowledge to treat you correctly?

I'm thoroughly disgusted with doctors as you can tell....and this has been going on forever. My mom nearly died in 1969 before ONE astute and knowledgeable doctor who knew about celiac disease diagnosed her and turned her health around. I myself didn't get a clear diagnosis until the age of 56....THROUGH MY OWN EFFORTS AND ENTEROLAB TESTING, I might add. I have the celac gene AND a gluten sensitivity gene...a double whammy, so to speak. I wouldn't know about having actual, active celiac disease unless I have a biopsy, which I don't plan to do. I have the gene, I have the symptoms which go away when I eliminate all gluten, that's good enough for me. I don't need to spend a ton of $$$ to have some doctor finally admit I've got the problem.

[happygirl]

If you have a gluten intolerance does that mean you must have celiac disease?

Nope. There are various "issues" associated with gluten/wheat. Celiac Disease, which is an autoimmune disorder. Gluten intolerance that is not Celiac. Gluten allergy.

You could be non-Celiac gluten intolerant, and you would test negative for Celiac, but you might have the exact same symptoms. So without definitive testing, it is hard to say "exactly" what you have. However, the treatment is the same: the gluten free diet.

If you live gluten free then have like a piece of bread does that start you back at step 1 or make you really, really sick?

Well, this is kind of complicated question....part of it has to do with if you are a Celiac or not. I'll try and answer it briefly

If you are a Celiac, whenever you ingest gluten, your autoimmune switch gets turned ON, and the damage occurs in your small intestine. Having or not having symptoms is not a 100% way to know if you have had gluten (as there are diagnosed Celiacs who are completely asymptomatic (which doctors acknowledge, and we have had "silent" Celiacs on this board; it seems counterintuitive, but it happens) have had biopsies that show intestinal damage. So, just because you don't have a reaction to eating a piece of a bread, as a Celiac, it is still bad. If you are a Celiac, the goal is to keep the autoimmune switch set to OFF instead of continuously turning it on (it can get turned on by a tiny amount). So while you might have more severe reactions with, say, a whole pizza, you are still turning your system on with one bite of pizza (and certainly, much less than that).

If you are a non-Celiac gluten intolerant....well, I don't really know what the answer is. If you have symptoms, your symptoms will probably come back. I don't know if it can cause long term problems.....In the big scheme of things, not a lot is known about Celiac, and even less is known about problems with gluten that aren't Celiac. I think there is a lot to learn.

Hope this helps. I am happy that you have found an answer! Unfortunately, we have all been in a similar situation as you. We are just grateful we have figured out the answer: a strict gluten free diet!