Diet Vs Testing

[par18]

The first question is for everyone who is currently on the gluten free diet. Did you know anything about Celiac Disease/ Gluten intolerance before you had to start the diet? In other words did you have the option of trying the diet first. My second question is for all of those out there that are coming to this website with unexplained symptoms. What would it take for "any" of you to try the diet first? In my case I had never heard of Celiac Disease prior to diagnosis. I did try a few things on my own regarding my diet before my Dx but was so far off base I had no chance for success. Trust me "gluten" (I had never heard of the term) would have been the last thing I would have suspected. As far as my "positive" diagnosis is concerned the fact that I was dying before my eyes had more to do with me getting on the diet and staying on it than any test result is concerned.

Tom

[Corkdarrr]

Before I started this diet I'd heard of it but wasn't terribly informed.

I was having migraines pretty much every day and my kinesiologist suggested I cut out gluten and see if that helps since I'd once tested positive for a wheat sensitivity.

And it definately helped.

I think changing your diet for a month or two is the best way to go. The testing for celiac seems to be so unreliable...either way, the positive dietary response is enough for me. In a moment of denial I ordered the Enterolab test just to be sure.

Courtney

[Nic]

I can actually answer on both sides. My oldest son was diagnosed celiac through blood and biopsy and then we went gluten free. Even though my father has it, I was not well informed on the symptoms so since my son's did not match my dad's, celiac wasn't even a though. My youngest son has symptoms, again not the typical ones, and shows no antibodies. I will be putting him on the gluten free diet with no further blood or biopsy testing. I did just order the gene testing from Enterolab. I figure before I take away his favorites I want to make sure that Celiac is even a possibilty for him.

[CarlaB]

I read a comment by a doctor that said if you eat anything on a daily basis, you are likely to be allergic to it. Cut it out for two weeks, then eat it again and see what happened. I laughed, then cut out wheat for two weeks. I felt like I had the flu from withdrawal, then got sick again when I added it back. This same book said that if it's a food allergy then you might be able to tolerate it occasionally. So, after a couple years, I started eating it once in a while. I was never gluten-free through this. Eventually I started getting really sick and losing lots of weight (just after I started eating wheat once in a while). I was concerned about celiac and was mostly gluten-free when I got tested. They only tested IgA, which was negative. I did a six week gluten challenge, was the sickest I've ever been, and the biopsy was negative. I'm 100% gluten-free now.

One of my daughters went 100% gluten-free when she realized my seasonal allergies COMPLETELY went away when I went gluten-free. She stays gluten-free even at college and her allergies are gone, too, as long as she's gluten-free. If she gets a bit of contamination, allergies return. Another one of my daughters we had tested at Enterolab and she stays gluten-free, too. She gets digestive issues when she gets glutened, same as I do.

I think the testing is good from a standpoint of do you have celiac disease? But I think there are many who are sensitive to gluten and shouldn't be eating it and do not have celiac. I feel and look different since I've been off it. I still have other health issues we are looking for, but I don't look like I'm wasting away to nothing anymore.

[clhsc]

When I started to lose lots of weight and having constant D all the time I was freaking out. My GP told me that I couldn't have celiac disease, that only children got it. She tested me for everything under the sun other than celiac disease and it all came back fine. Then my mom read an article in Good Housekeeping (?) and I had all the same symptoms. I cut out all gluten for a month then tried it again. I mean I had a gluten feast - mac and cheese, bread, pasta. For the next week, I thought I was dying. That was enough for me. So now, I have been gluten free since August and it's too late to get a diagnosis by blood test. Now, I will stick with the diet and I have gained some weight back (woohoo! - I broke triple digits again). If the diet works then I don't think that testing is necessary. That being said however, I am having a colonoscopy to make sure it is just celiac disease and nothing else.

[corinne]

Gluten-free is the last thing I tried. My mother is celiac and I grew up eating mostly gluten-free. When I left home, I started eating gluten. A few years later, I started getting D etc. I went into the doctor and tested negative (blood-test) for celiac so that convinced me that gluten was NOT the problem and that it was just a coincidence that my mother was celiac. The doctor said that the blood-test was 100% accurate. I continued eating gluten for the next 10 years. I eventually got fairly sick with daily 2-3 hours bouts of D and vomiting. More tests eventually led to a diagnosis of collagenous colitis. I then took medication for colitis. The medication quit working after a year. I tried eliminating a wide variety of foods from my diet. Eventually, I tried gluten-free thinking that since I wasn't sick as a kid, maybe it would work. It did (after eliminating a bunch of other foods). If only I had known that the blood-test isn't a guarantee. I wish I had just tried the diet much earlier.

[georgie]

I was blood tested for Celiac after my Thyroid dx. It was negative but Dr still insisted I try the Gluten Free Trial. I actually argued with her - as I thought I was OK. After 2 weeks gluten-free I reacted to Gluten horribly. So ..its too late now for biopsy and I don't care. I know I can't eat Gluten.

[Ursa Major]

I was sick all of my life, from the age of three. Always had terrible joint, back and muscle pains, alternating diarrhea and constipation, was a walking stick-figure as a kid (and no matter what my mother tried feeding me - of course, containing wheat, I couldn't gain weight) and never had any energy. I thought everybody felt that way!

I had heard of celiac disease a couple of years ago, when one of my husband's cousin's daughters was diagnosed, and I talked to her mother.

Then last summer, after trying a bowel cleanse, I had chronic, watery D for six months, and was getting sicker and sicker. When one day I tried a slice of rye bread, and was doubled over with terrible stomach cramps, a lightbulb went on in my head. I went to the computer and researched celiac disease (while running to the bathroom every few minutes). All the symptoms fit.

So, that afternoon (it was a Saturday, and no doctor's office open) I quit eating gluten. By the next day, for the first time in six months, I had a normal bm. The day after that, my backaches (which had been getting worse and worse) started getting better. Within two weeks I was off my narcotic painkillers for fibromyalgia.

During the summer my doctor had tested me for everything under the sun, viruses, bacteria, parasites etc., and everything came back normal. Two weeks into the diet I went and saw my doctor. I told her point blank that I have celiac disease, and that I had no intentions of going back to eating gluten for testing.

She said that she didn't think I had celiac disease because I was gaining weight, instead of losing, and that's why she never tested for it, even though she knew I had all the other symptoms! She agreed that it would be foolish to go back to eating gluten, the results I got with the diet were proof enough.

So, I have an unofficial diagnosis of celiac disease, and I am quite satisfied with that. The few times I doubted myself and ate gluten, I've regretted it for sure. I know I can't tolerate gluten, no other evidence needed. And since my family, friends, and extended family are all convinced as well, I have no reason to regret not having gone for testing.

[jj1]

can I ask you, were you or your daughters given a 100% this is definitely celiac disease diagnosis or was it more of a , I think it is celiac disease diagnosis? and also, did you have any abdominal pressure/pain after eating, and how long after eating? I have recently been tested for celiac disease and the gastro doctor will only say he "thinks" my abdominal pressure/pain are caused from possibly having celiac disease. Your response would be greatly appreciated as I'm very confused at the moment

[Eriella]

  jj1 said:

can I ask you, were you or your daughters given a 100% this is definitely celiac disease diagnosis or was it more of a , I think it is celiac disease diagnosis? and also, did you have any abdominal pressure/pain after eating, and how long after eating? I have recently been tested for celiac disease and the gastro doctor will only say he "thinks" my abdominal pressure/pain are caused from possibly having celiac disease. Your response would be greatly appreciated as I'm very confused at the moment

In answer to the original question-- my doctors were far from the best and when I told them "bread" made me sick they told me to take disgusting stool softeners, so I followed my mom's advice and stopped eating bread and stopped having GI issues. Then, after making 1500 sugar cookies from scratch and spending all night crying on the floor from the stomach pain (that would be from eating the raw cookie dough, eating the cooked cookies, eating the pizza for dinner, and eating more cookie dough), my grandmother remembered that her sister had some weird stomach thing called celiac. The dots started connecting and I went on a gluten light diet, had a gluten binge, spent another week in bed constipated, and gave my doctor the choice of ordering a celiac panel or giving me a medical leave from school. He ordered the blood tests and they came back negative (surprise surprise) and I found out that my great aunt has the non-antibody producing celiac strain. I went off gluten completely and ended up getting diagnosed with gluten intolerance. So I started the diet sort of, found out about it, followed the diet more strictly, got tested, then started the diet hard core.

For the second question-- my doctors "think" my pain is caused by celiac, but know it was caused by "'bread" (because I told them, but at least that is a start). The pain for me starts 30 min to 12 hours later and lasts until the gluten gets out of me. I find that taking charcoal caps as soon as I figure out that it is gluten really helps, and then eating nothing but fruit, coffee, and water to make sure that it "flushes" my system helps.

There is no test to say whether or not you have celiacs disease. A blood test and endoscopy can tell you that you have it, but they can also be negative and gluten is still the culprit. The only way to know for sure is to go off gluten for 2 months and monitor your symptoms. There is no harm not eating gluten and it is worth giving it a try.

[UR Groovy]

  par18 said:

The first question is for everyone who is currently on the gluten free diet. Did you know anything about Celiac Disease/ Gluten intolerance before you had to start the diet? In other words did you have the option of trying the diet first.

I believe I'm intolerant. I had never heard of Celiac or gluten intolerance. I was investigating fool allergies and decided to try an elimination diet. By the time I found out about Celiac, I was already 2 weeks in and had already discovered that wheat was really hurting me.

I didn't find out about the inability to test for Celiac while gluten-free until I was more than a month in. At that point, there was no way I would eat gluten (based on the many, many problems that I didn't want back) for a test result.