Celiac disease

Discussion in 'General Health' started by Theory Of Mind, Feb 21, 2012.

  1. Theory Of Mind

    Theory Of Mind New Member

    I was wondering if someone could answer a question for me about celiac disease.

    I went to the doctor last week and told her about some occasional gastrointestinal discomfort I experience. I get bloated, have absolutely no appetite, when I do eat I feel like I want to throw up a few bites in, I'm tired all the time, get heartburn, and get diarrhea. The last time this happened it lasted about 2 weeks in the beginning of December. My doctor suggested it might be celiac disease. I asked why all of a sudden, and she explained that sometimes it will just "flip on", so to speak, with certain people.

    My question is, if I had celiac disease wouldn't I feel awful anytime I ate gluten? Or, is this disease really as illogical as it seems? Any help is greatly appreciated!

  2. Theory Of Mind

    Theory Of Mind New Member

    But I love wheat so much!! [​IMG]
  3. KCullen

    KCullen New Member

    Hi there,

    I live in New Zealand and i was diagnosed with Coeliac Disease (we spell it different over here) almost 3 years ago.

    Your doctor is right, it can all of a sudden "flip on" with some people. Since coeliac disease is genetic, you can have it all your life and then all of a sudden you suffer from symptoms later down the track. What a lot of doctors are finding now is that symptoms can surface once the body goes through some sort of trauma. Did your body experience any trauma before your started noticing these symptoms? This could be anything from a broken bone to a common cold. Because this is what happened to me and quite a few people i know. I had an infected wisdom tooth and the doctor gave me codeine for the first time for the pain, turns out im allergic to codeine and i had a sever reaction to it and i ended up in hospital. Ever since then i reacted to gluten and started feeling sick/being sick after i ate but i never experienced anything at all before then. My doctor described it as being like a dormant volcano and then when something shakes it, it erupts. If that makes any sense? And also just remember that when we experience symptoms,that's our body's last resort to fighting the 'poison' we are putting into our body. So if all of a sudden you get bad symptoms from gluten, it could just be your body saying "i can't do this anymore, please do something".

    Anyway, to answer your question it is possible to only react sometimes to gluten when you are first noticing symptoms. That was exactly the same with me but as Tracy740 says, the symptoms will get worse and worse over time. For example, if you eat a lot of bread and pasta in one day you might feel really sick but if you only eat small doses of gluten such as in gravy or soy sauce, you won't feel it as much. However, if you are coeliac there will become a time when you will start reacting to small amounts.

    So i would get the test done and see how you go.I know the idea of cutting out gluten is scary but you can;t put a price on good health and if it makes all your horrible symptoms go away it is totally worth it. All the best and let us know how you get on.
  4. Theory Of Mind

    Theory Of Mind New Member

    Thank you for your thorough response KCullen. I appreciate it very much.

    I've been putting off getting the test because I'm a full time student and research assistant so my free time is limited. I'm hoping to get it done next Friday, though. I have been eating gluten-free foods for almost a week now and haven't noticed any changes at all, if anything I feel worse. Granted, it has only been a week. Plus, on this "diet" I feel starving all the time. Absolutely nothing fills me up that is gluten-free, even the pseudo-pancakes. Thinking about it though, a diagnosis of Celiac would make sense. I've had stomach problems all my life, but just recently started experiencing Celiac symptoms.

    Cutting out gluten is getting a little easier since they have a few options at my local grocery store and more at a whole foods store. I hate most of the gluten-free stuff since it's mainly rice and I can't stand rice. My biggest issues are finding a good tasting and textured bread, and figuring out what to eat when I go out to eat. Any suggestions on a good bread? I bought some bagels by Udis that are...decent. They taste nothing like a bagel whatsoever, lol.

    Does anyone know if the Italian sausage at Olive Garden has gluten in it? Random question, I know, but I love Italian sausage and they can substitute gluten-free pasta. Enough rambling though. Any more thoughts are welcome!
  5. GreenTea

    GreenTea Super Moderator Staff Member

    Maybe it's not gluten you're intolerant to, but something else. Do you consume dairy products? Could you perhaps be lactose intolerant? That's another thing that can sneak up and go undiagnosed for a long time, and would cause symptoms like this.

    If a gluten free diet isn't making you feel any better, logically, gluten probably isn't your problem.
  6. Theory Of Mind

    Theory Of Mind New Member

    I've never had any problems with any sort of dairy products.

    I am going to try to stick with this gluten-free diet for a few more weeks to see if my stomach gets better. It's only been a week today and I'm sure I still have a some wheat that's working it's way out of my system. It's kind of funny, my dog was just recently diagnosed with a wheat allergy and we both have hip problems. A perfect match!

  7. KCullen

    KCullen New Member

    I would strongly recommend getting an allergy test done. In New Zealand we have a number of Health Food stores that do allergy tests. This can either be done using a piece of your hair or a saliva test. Basically what they do is they place a tiny piece of paper on your tongue so it is soaked by your saliva then they send it away to an allergy clinic. This clinic tests your saliva against all food groups and pretty much any food you can think of, including drinks/alcohol and vitamins/minerals. Anything that your body can't tolerate comes back highlighted on the food list they give you including a number which corresponds to how sensitive your body is to this food or substance. The higher the number, the more your body can't tolerate or process it.

    After i was diagnosed with coeliac disease and was on a strict gluten free diet i was still getting sore stomachs, bloating, fluid retention etc. But then i did this allergy test and many things came back highlighted that i couldn't eat including some vegetables, pork, spirits, and some dairy products. After eliminating these things from my diet i have felt a million times better and all symptoms have gone.

    I strongly recommend doing this as these types of sensitivities can't be picked up in a blood test. This test will also tell you what vitamins/minerals you are lacking which is very helpful and you can just take supplements for.

    If you say that you have been eating gluten free for a week then i am concerned that you still have your symptoms. Maybe it is something else. In regards to gluten free food, since i am from New Zealand i'm not really sure how up to date your country is with this stuff. New Zealand has such a range of gf foods and we have a substitute for everything. Luckily the country is very aware of coeliac desease so it is super easy to eat out at restaurants etc. But i promise you that there is a lot you can eat! When i first went gluten free i ate the same things all the time and my diet was very limited. But when you learn more about what you can eat then it gets a lot easier.
  8. MariahMEH

    MariahMEH New Member

    Hi, I'm Mariah and I'm 16. My sister, who is 19, has celiac disease. We did not find out until just last year. Celiac disease is when you cannot digest wheat gluten and you're pretty much allergic to it. But, most people do not know until way later on, and it is very dangerous to not know. The gluten will continue to do damage to your stomach and depending on how allergic you are to wheat gluten, you will not get sick everytime you eat gluten. Only after it has done some damage will you get bad side effects. My sister grew up eating noodles and bread ALL THE TIME. She is highly allergic. She started showing signs at 15 and she had a stomach ulcer because of it. And because we had not found out until she was 18, she could be infertile. She is actually getting that tested today. I suggest finding out as soon as possible. If you do have celiac disease, it will be very hard to find food. Almost everything has wheat gluten in it, even candy and some syrups. My sister has to buy specially made Rice bread or make some herself. Also, a loaf of bread is close to $15. The prices are ridiculous. I hope everything turns out fine! good luck [​IMG]
  9. loopymegs

    loopymegs New Member

    Hey there,

    You may have cut out obvious wheat products, but sometimes gluten can sneak into surprisingly stupid places, like the part you need to lick on envelopes and in salad dressings. If you do have celiac disease and have activated the disease, then you may be reacting to things like contaminated mixed nuts, or oatmeal. Heck, I can't even use the same peanut butter as my guy in case I dip the gluten contaminated knife back into the peanut butter. If you are indeed celiac, you may have to replace anything in your pantry that could be contaminated because you are still being exposed to gluten without knowing. My friend can't even have wheat flour in her house because the dust from it makes her ill.

    Its already been said that celiac starts to destroy your intestines, and the thing that has helped my partner the most is taking care of and healing his GI tract. You can look into healing practices like the GAP diet, fish oils, or Nourishing Traditions/Wild Fermentation books for gut health. Once my guy started to include probiotic foods (you can make them yourself really cheap) and supplements into his diet, his tummy really started to feel better. Same with my mom, since I've got her on water kefir she has been feeling normal again. There is a huge science emerging on healing the gut, to help beyond just cutting out damaging products.

    As for foods you can eat and enjoy, look for a local GF bakery. Their breads are much better than the frozen ones available. Try eating quinoa, teff, millet instead of rice in meals. There are some very excellent blogs out there for gluten free recipes, some I cannot even tell the difference in the gf and wheat versions. Try searching for gluten free online/support groups for your city or area you live. A lot of cities are coming up with guides and information websites for the celiacs that live or visit there.

    Good luck! It is tough to get started cutting out beloved foods (I'm allergic to tomatoes, its so sad!), but you'll find food that makes you and your tummy happy!
  10. Theory Of Mind

    Theory Of Mind New Member

    @KCullen, I'll look into the allergy test. I'm not sure if they offer them here, but it couldn't hurt finding out I suppose.I'm not too worried about the spirits part of the test, though. I'm not much of a drinker so no biggie, lol. I am slowly starting to feel better and the bouts of upset stomach are happening less frequently. I think I actually went all week without my usual stomach pains that usually force me to stop what I'm doing for a while until they pass.

    @MariahMEH, while I appreciate the comment, it was not in the slightest encouraging lol. But thanks for your concern.

    @loopymegs, I have been slowing cutting out more and more products with wheat in them and I've been trying to avoid anything with oats as well since I read they are often contaminated. I have also been taking a probiotic to help heal past damage and (when I remember) a general vitamin. Surprisingly, a few of my FB friends seem to be GF as well so I got a tip for a GF bakery about an hour from where I live. I managed to find a rice pasta that is really tasty too, I can hardly tell the difference. I tried quinoa and didn't really care for it, but I might not have cooked it properly. It has been difficult to try to find reasonable GF foods. I am living on a somewhat tight budget and can't afford too much outside of my usual grocery budget. Plus, where I go to school there are very few stores/restaurants that offer GF foods. Right now the diet seems very restricted, but I'm sure as I branch out more and explore new avenues I'll find some very tasty GF foods in time.

    Thank you for the encouragement and support everyone! [​IMG]
  11. Theory Of Mind

    Theory Of Mind New Member

    I just have to say that today I am beyond mad about this gluten-free stuff. Tuesday and Thursdays are my long days on campus which means I usually bring snacks with me to keep me going. Not today! I just read the ingredients again on snacks I thought were GF, guess what? They're not! I guess I'll just eat cardboard the rest of my life because at least that is GF. Life sucks today. [​IMG]
  12. Confused-Hasya

    Confused-Hasya Active Member

    What I am about to say is based on extensive literature review that I did for a term paper last semester. I am a biochemist so I do understand what I am saying. Please read the entire post before you take any decisions based on it.

    Celiac disease (CD) is not an allergy. It is an autoimmune disease. When gliadin in gluten doesn't get digested fully and irritates the intestinal wall, it makes it porous and gets past the intestinal immune system and into the blood. The body recognizes it as something bad but doesn't attack the gluten. It attacks the intestinal villi (little protrusions in the wall that increase the surface area of intestines to absorb food better). With small patches of destroyed villi one may not observe symptoms every time one eats gluten but as it progresses, it gets worse and worse until one begins to lose weight because one cannot absorb nutrients from food.

    When a person has active celiac (destroyed villi), it also (almost always or sometimes, I am not sure) makes a person lactose intolerant. After healing, people frequently tolerate lactose again.

    It takes several weeks for the intestines to heal appreciably after last exposure to gluten. Six weeks before seeing a difference, I think, but I cannot remember for sure. Only after that will one start feeling better.

    So, if you aren't feeling better yet and have celiac disease, it is quite possible that your intestines are beginning to heal. It will take several weeks for you to feel fully better.

    On the other hand, GFD is a double-edged sword for you until diagnosis. Before testing for CD, you need to be eating (NOT avoiding) gluten that is in about 2 slices of bread a day for about 2 weeks before the test. The first test for CD is a blood test that looks for a certain auto-antibody. It disappears from the blood if you avoid gluten. ONLY if this turns out positive or they have other compelling reasons from your history do they perform intestinal biopsy. Because the biopsy is an invasive procedure, they don't like to test unless there is a good reason to. ONLY if the biopsy also comes back positive, is a CD diagnosis made.

    WAIT. Before you jump back on a wheat-eating binge, make sure that you inform your doctor that you are on a GFD now (acquaint yourself with all hidden gluten sources. Yes, I think the sausage is a suspect for hidden gluten as is soy sauce). Once a blood test for CD is scheduled, you'll need to get back on gluten for a few weeks immediately preceding the test. PLEASE ask your doctor for the correct length of time preceding the blood test for which you'll need to be on a gluten containing diet.

    If after all this, you test negative for CD, it doesn't necessarily mean that you don't have it, unfortunately. Because the intestine is so so very long, only the most likely problem areas are tested. So, small patches here and there can get missed. I am not sure if these small patches can make you feel as sick as you do, however.

    It may still be worth going on a strictly gluten-free diet after a negative CD biopsy. Because some people have what is known as gluten intolerance (there is a debate about whether it is the same as CD but just undiagnosed CD). If GFD makes you feel better in about 2 months, it is all worth it, isn't it! By that time, I hear, people feel so much better that they don't regret giving up all gluten at all.

    About 99+% of people with CD carry a genetic marker for it. The same marker that also makes a person susceptible to developing other autoimmune disorders like Type I diabetes and so on. Conversely however, only about 2-3% of people with the marker reportedly develop CD in their lifetimes. Not sure what the stats are for other autoimmune disorders. So perhaps you can ask about genetic testing as well. If you'd like to know which marker I am talking about, I can look it up. It is in my term paper somewhere. I think it is HLA DQ2.

    Take heart. There is research going on about drugs to help a person CD safely ingest limited amounts of gluten. Some drugs are even under clinical trials.

    Sorry for the long post, I just wanted to acquaint you with CD. Let all my hours of research for the term paper to be remotely useful to you or anyone else reading this.

    Good luck!
  13. Confused-Hasya

    Confused-Hasya Active Member

    Oh you poor dear!

    With mostly gluten-free diet upbringing, because of the way the diet of my region is structured, I can give you some ideas of snacks that you can make for yourself, from raw materials. Let me know if you're interested. I'll PM you. of course, you'll have to tell me what other allergies you have. Soy, cashew, what else?
    Last edited by a moderator: Aug 24, 2013
  14. Theory Of Mind

    Theory Of Mind New Member

    I just spoke with my doctors office and I'm scheduled for the Celiac blood test next Monday. I really hope I'm negative, but then what else could be causing these stomach problems?
  15. Confused-Hasya

    Confused-Hasya Active Member

    Tomorrow? Good luck! Have you been eating wheat?
  16. Theory Of Mind

    Theory Of Mind New Member

    Yep, I've been back on a wheat diet for about 2 weeks now. I had the test done yesterday, still no news from the doctors. I'll post when I know more [​IMG]

  17. Theory Of Mind

    Theory Of Mind New Member

    Just got the results back from the doctor. They were negative for Celiac disease! Now, what else could be going on? Hmmm...
  18. Confused-Hasya

    Confused-Hasya Active Member

    A very small percentage of people may test negative despite having CD. Not saying that it is you, but if dropping wheat makes you feel better, by all means, do so. Many people do it.

    Did you get tested for any other digestive problem? If it is another food, you have to do a systematic elimination diet. Drop one allergen, watch for 2 weeks. A disadvantage of this is that you may be allergic or sensitive to more than one food, and unless you eliminate both at the same time, you may end up thinking that you are not allergic to either. So, one approach is to drop all common allergens at the same time, for 2-3 weeks. If you feel better, add them back one by one, giving it about a week or 2 for any reaction. Before dropping everything however, be sure to make detailed meal plans. Otherwise, you'll find yourself wondering what to eat next and feel worse because there is just nothing to eat.
  19. Theory Of Mind

    Theory Of Mind New Member

    I haven't been tested yet for other problems. I keep reading about other GI problems that it sounds like, but I don't have all the symptoms. It's only occasional upset. It's not constant and right now I feel absolutely fine. I hate dealing with this.

    Adding the wheat back in didn't seem to change anything. Could the gallbladder have any contribution?

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