Marleigh

This is day 4 of the gluten-free diet for me. Within the first day, my gas and bloating were completely gone. Also, my constant sugar and carb cravings disappeared right away. I've been able to eat until I'm just satisfied, then quit, without a desire to eat any more. Before, I would eat and eat, way past comfortably full, because I always wanted more food. Prior to going gluten-free, I had these symptoms every single day, at every single meal to some degree. I also had a more positive outlook almost immediately (I struggle with anxiety and "blue moods", but not really depression). These items alone were enough to convince me to press on.

Last night, I had a really hard time falling asleep and I tossed and turned all night. Today, I've felt anxious a little more - especially when I'm hungry - but nothing unmanageable. Then, about an hour after lunch today (gluten-free, I'm 100% sure), the diarrhea started. I have a feeling it's not completely gone yet, because I just have that full, nauseated feeling that I always get when I have it. I should mention, though, that D was never one of the symptoms that made me suspect gluten. I'm one of the minority with constipation instead.

So do these things sound like withdrawal? Even though it's no fun, it's kind of exciting, because if I'm in withdrawal, surely that indicates that I had an addiction and therefore an intolerance. Which would mean I've finally found what's wrong with me.

I finally got my blood test results back from the doctor. They were negative for celiac. I'm frustrated at this point. Of course, it's not that I wanted to be diagnosed, I just wanted some answers! The doctor's recommendation was to remove all dairy from my diet, and if that doesn't work, he wants to set up a consult with a gastroenterologist. The thing is, he said to remove dairy "as we discussed" last week, and we never discussed it! Our whole discussion was about celiac and multiple food allergies, and now his answer to all of it is just to remove dairy.

The thing is, I started the gluten-free diet on my own on Saturday - I've not been careful about dairy at all, just focusing on the gluten. I have had no gas, bloating, or diarrhea since then, and my insane food (carb & sugar) cravings have all but disappeared. My constipation has been worse since then, but I also have endometriosis, and this is a point in my cycle when I'm usually constipated anyway. I'm thinking of continuing with the gluten-free for at least the rest of the week, and adding more veggies and nuts and exercise to see if that helps with the constipation.

Here are the reasons I'm somewhat convinced that gluten is a problem for me: I have endo, as I mentioned, and I'm technically infertile; I had a positive skin scratch test for wheat sensitivity a year and a half ago. I'm overweight with out of control carb cravings and I feel hungry even after I've eaten too much. I have constipation mostly, alternating with diarrhea. I'm very sensitive to chemicals like MSG and nitrates in food. I have dark circles under my eyes and people have been telling me lately that I just don't look well. Prior to removing gluten 3 days ago, I dealt with gas and bloating on a daily basis, becoming severe and painful after eating certain foods. I do have problems with ice cream, but other than that, most dairy doesn't bother me too much.

So what do you think - should I keep pursuing the gluten-free diet? Should I insist on a biopsy or quit messing with the doctors and handle this myself?

How long does it typically take for a lab to return celiac blood test results? My doctor did my bloodwork last Monday and expected the results to be returned on Wednesday. I called Thursday afternoon when I hadn't heard yet, and they told me that everything else was normal, but the celiac results weren't in yet. They said they would call when they received the results, but I know doctors' offices can get busy and overlook things. How long should I wait before I call again?

Several things come to mind for me...if the cake was sugar-free also (by any chance), the artificial sweeteners will give me violent D reactions like you described. Not necessarily Splenda and things that you put in drinks, but the "sugar alcohols" (malitol, etc) that they put in sugar-free baked goods.

Another idea is MSG or a preservative, or high fructose corn syrup. Either one of those will cause intestinal symptoms for me, in the right doses.

I've posted a few times lately - sorry if I'm being a pest, but I'm trying to pick my way through whatever illness I seem to have.

One thing that has been holding me back from looking into gluten intolerance is that I seem to have a more sudden/severe reacting to some fruits and vegetables than any other food. I had a salad containing broccoli and cauliflower at lunch today and the bloating and gas is enough to make me consider leaving work early! It's painful and embarrassing. This happens when I eat salad and other vegetables, too - regardless of whether they're mixed with gluten-containing products or not.

I would be SO disappointed if I found out I needed to cut gluten out of my diet, but still couldn't tolerate fruits and vegetables. Does the presence of gluten make digestion harder for these foods? Thanks in advance for any insight you can offer!

I suspect that I have a problem with gluten, and I have a doctor's appointment Wednesday. I'm continuing to eat gluten products (normal for me) until then, because I intend to ask her to order tests for me. But if the results are inconclusive or the doctor won't order the tests, I'm thinking of trying the diet anyway. How many here have discovered you're gluten intolerant after negative test results?

  purple said:

Could it be that being allergic to gluten caused your endometriosis and all your other symptoms. My 19 yr old daughter had all the signs for endo. We took her to the doc and found out she was allergic to gluten. She has stopped most of the gluten and we are still working on it. Her pms symptoms are practically normal. My friend had endo. about 15 years ago and had to have a hysterectomy. She has had multiple surgeries since. The docs always tell her this and that. She is so messed up inside. I keep telling her to see our doc and see if she is allergic to gluten. Hasn't happened yet.

This is something I'm seriously considering at this point...that a gluten allergy is causing the endo. I have had GI symptoms for as long as I can remember, so it's possible I've had an allergy my whole life that is triggering other diseases. I have an appointment with my OB/GYN next week; I'm considering eating "normally" until then and demanding celiac testing, then taking it from there. I'm tired of being dismissed and I'm tired of being sick every day.

  ShayFL said:

I had appendectomy when I was 13. It had actually burst and I needed exploratory surgery to make sure my organs were all o.k. I also got peritonitis. Anyway....around 18 I started having horrible gas/bloating/pain all of the time. Especially when going to the bathroom. Gas pains literally left me weak and unable to walk sometimes...covered in cold sweats.

By 22 I had had enough!! They did a laparoscopy and found I had just as you have....adhesions EVERYWHERE like a woven basket my doctor said (it was from the appendix ordeal). Well they cleaned it all up and I have not had that kind of problem since.

You might see if they can "clean" you up too.

I am mostly neuro symptoms, but after going gluten-free, my BM's are down to 2-3 a day from 5-6 and I hardly ever have gas anymore. I will get bloated and gassy if I eat TOO MUCH fruit. So I am limiting the fruit to 2 servings a day. Mostly berries, but I love peaches too. The occasional banana/kiwi/cherries. But like I said...I will bloat up if I overdo the fruit.

I should have clarified that they did "clean" up the endo adhesions during my surgery...but learning what I have about endo since then, it never really goes away. And since I opted not to do Lupron or BC pills, I still have one ovary that is probably just producing disease constantly. Thanks for your reply and for sharing your symptoms!

I'm sure you see posts like this all the time, so please bear with me. I really need some direction.

I was diagnosed with endometriosis following a surgery in January of 2007. The doctors told me that the adhesions, or scar tissue caused by the endo, had pretty much webbed all of the organs in my lower abdomen together. I have had gastrointestinal symptoms for as long as I can remember and my parents have told me that I could not drink milk as a baby (had to use soy formula). Following my endo surgery, I did a lot of research and read that many women with endo also have wheat sensitivities or celiac disease. I went for an allergy test (where they scratch your back with all the allergens) and "mild" sensitivities to wheat and shellfish were indicated, but the doctor (an allergist) said it was nothing to worry about. I've never had an allergic reaction to any food, as far as being unable to breathe, swelling, etc. But my digestive symptoms are miserable and constant. In some ways, I think it could point to celiac disease, but in other ways, I'm not so sure. I'd like to share my symptoms here and see if anyone thinks I should have a celiac disease test done. So here they are:

I am overweight by about 50 lbs for my height. I really struggle with losing weight because the constant GI symptoms make me feel hungry when I'm not, or I have alternating constipation and diarrhea. I have almost constant gas and bloating, especially after eating. The foods that seem to cause the most discomfort are processed or restaurant foods with additives like nitrates and MSG. Pasta seems to bother me, but I've never done any kind of elimination diet - so it could very well be something I'm eating with the pasta. Cereals which are very high in fiber, many fruits and vegetables, beans and corn all make the bloating/gas problem worse. Apples really bother me, of all things. Dairy typically doesn't bother me except for ice cream, which does give me pretty serious symptoms. Sometimes I wonder if the fruits/veggies are really what's bothering me, or if I'm eating something with them, like croutons or bread, and just not making the connection when I think back on it.

I also have fairly dry skin and dark circles under my eyes. I look tired all the time. I crave sugar and carbs like cookies, bread, crackers, etc. I have a constantly stuffy and runny nose, although not severe. I have severe PMS some months and can retain up to 5-7 lbs of water. I sometimes experience anxiety and "blue moods" for no reason.

I just have a gut feeling that I'm putting something in my body that it is allergic to, and it's causing all of these problems. Sorry for the long post, but does this sound like anyone else's experience with this disease, or should I focus on something else? Thanks in advance!