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NicoleAJ last won the day on June 28 2019

NicoleAJ had the most liked content!

About NicoleAJ

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  1. You might want to try a modified elimination diet where you avoid most foods for a week but still get enough nutrients through the foods you do eat, then you start to introduce foods one at a time (much less traumatic than an extended fast). This worked really well for me. I fasted for a week last month (only ice chips), but I was in the hospital on bowel rest for paralytic ilius. I was on constant iv potassium chloride and about 15 different medications. I would not recommend fasting without a doctor's supervision if you've never done it before.

  2. I'm still not getting the results I want from gluten free, so I'm thinking about an elimination diet. What's the best way to do it? Any great websites that really explain how to do it effectively?


    I actually asked about this a few weeks ago, and dlp252 was kind enough to forward her doctor's information on the elimination diet to me through a PM. You may want to check with her, or I can just try to forward the information on. The diet she followed, and the one that I've subsequently started, is a modified elimination diet. At times, it seems like a bit of a pain, but I've still gotten to eat a bunch of great food as I learn about what I can handle and what I can't.

  3. Well it's encouraging to hear that you all cook without garlic and onions (I just tested onions last night and didn't have as totally horrible a reaction as I did with garlic, but I definitely had a problem! I took your advice about fresh herbs and bought fresh basil, oregano, and flat leaf parsley for starters. I made a great chicken dish with spinach, tomatoes, pine nuts, fresh basil and oregano, and feta cheese with just a bit of salt and pepper--it was delicious. I do have a good sea salt, but I haven't tried the one you mentioned, Mango04. I'll have to look it up and try it. Thanks!

  4. So I've been doing an elimination diet, and I was shocked to find out that I have a major garlic intolerance. There were two days in which I had just a pinch of garlic salt, and I had acid reflux and a general feeling of being unwell--fatigue, upset stomach, etc. The next day, I realized that it might be garlic that caused the problems, so I used a clove of fresh garlic in a meal that had all ingredients that I had tested to be safe. I had all of the same symptoms as a gluten encounter--D, abdominal pain, migraine, joint pain, nausea, upset stomach, acid reflux--everything. I had to take a lomodil, nausea pill (Phenargen), and prescription strength Pepcid and then after sleeping it off for three hours, I still felt awful. I even felt sick the next day as well. Now I know that I absolutely cannot cook with any garlic products--but it seems to be in all prepared foods (marinara, Amy's gluten-free products, etc). If anyone else is garlic intolerant, I'd love to hear how you substitute. Before I went into the hospital a few weeks ago, I was eating garlic in some form almost every day (especially in Adobo seasoning)--no wonder why I felt so sick!

  5. Thank you both for your responses. Sandy, I hope that your daughters tests all turn out ok. Ravenwoodglass, I would tend to agree that celiac disease is the culprit, but I was just taking the info from the Mayo Clinic's write-up on autoimmune hepatitis. The good news is that if it does turn out I have it, most people are able to keep it under control on very low doses of steriods and another med that counteracts the effects of the steroids. We'll see what happens--hopefully I don't have it, but I've gotta remain optimistic about all of these things because I'm just sick of being down about being sick. Thanks again.

  6. My doctors are going to test me for autoimmune hepatitis because of various symptoms I've been having (significant enough to land me in the hospital for a week). When I looked it up on the Mayo Clinic, several of the common medical complications listed were those that a lot of us on the board have, including celiac disease. Pernicious anemia and ulcerative colitis were also prevalent complications, and I know several of us have those as well. I guess I'm just looking for insight before the test results come back. If anyone does have it, I'd really appreciate hearing how you were diagnosed and what you've been doing to treat it (beyond prednisone for life). Thanks!


  7. TCA, I'm glad you're going to the GI on the 29th. Let us know how it goes. I agree with ravenwoodglass that a colonoscopy could be in order. Some ulcerative colitis is called left-sided UC because it only effects the rectum, sigmoid colon, and the left side of the colon (in other words, it hasn't spread to the whole colon but just stays in the last third of it). UC actually causes some blood loss from the colon that leads to anemia as well. I'm by no means a doctor, and you can take this with a grain of salt, but having just done a lot of research on UC for myself, I know that this is one thing that your GI will likely want to rule out by getting a look inside the colon. I think they can also visualize fistulas and other things in the colon through a barium enema (I know--yuck). Good luck, and let us know what happens.

  8. Thank you everyone for your replies, and thank you Donna for your PM on the specifics of reintroducing foods. The nutritionists around here are really kind, but less than stellar. I had one great nutritionist, Jennifer, in the hospital who double-checked all the labels of every liquid they had available (towards the end of my stay). Unfortunately, however, every single tray came up from the kitchen with problems--gluten-containing broth, milk, coffee (things that I could never consume even if I didn't have a distressed colon).

    Laura--I was in SC when all of this happened and went to Mount Nittany--they have no clue why my colon stopped, but luckily they were able to get it back up and running. I'm going to my GI in Lewistown on Tuesday, so I should hopefully know more by then. Thanks for the congrats--they've actually said that they'd offer me a job out there when I finish next year, so I couldn't be happier. Now if I could just get healthy again, I'd feel like everything was going my way.

  9. I just spent a week in the hospital on bowel rest because of paralytic ilius (my colon stopped working), so I didn't eat anything for a week (nutrients came through IV). Now that it's working again, I've started on fluids--basically cran juice, broth, ginger ale, water, pedialyte pops, but I'm ready to start a few solids, and I'd like to do this intelligently so that I may also figure out if I have any other food intolerances. If anyone has some advice on how best to do this, I'd really appreciate it. I know enough not to introduce more than one food a day, but how long should I try each food before moving on to the next one? Thanks for the help.

  10. I don't grind my teeth, but I do clench them because the dentist said that I have swollen ligaments around my teeth from doing it. Clenching teeth is actually a trigger for my trigeminal neuralgia, which is an extremely painful disorder involving the main nerve that serves your face. I'd love to hear if someone else has a response because I'm not sure what to do about it either. If you hear anything, please let me know.

  11. My boyfriend just accepted a job as a professor at Cal Poly San Luis Obispo. I'm going to finish out my degree at Penn State next year, but I'll be able to spend much of next spring in SLO and will be moving there summer 2008 to get a job as well. What types of resources are there for celiacs in this area? Does anyone know what kind of gluten-free products can be found in local stores, who the best GIs are, where there are accomodating restaurants, etc? I'd really appreciate any information you might have.

  12. I started on the pill at 15 because, like cassidy, I'd have a 2 week heavy flow period and then get it again two weeks later (aweful cramping, migraines etc). Periodically, I've gone off the pill for up to a year at a time when I want to see how things work out for me. The heaviness and length and pain of my old periods usually returns after 6-9 months off the pill (even though I feel great on the pill). For the last few years, I've actually been using the ring rather than the pill and have responded very well to that. I didn't do well on the tricyclic pills because they made me vomit every morning. The thing that is really worrisome is that when I ovulate, I develop really large ovarian cysts, and they often burst, causing a whole lot pain, but if you don't have a tendency towards getting those, then it shouldn't be a problem at all. I'd definitely try going off the pill for a few months to see what happens to your symptoms--you can always go back on it if it causes problems for you.

  13. I've had three colonscopies over the course of five years--they didn't find anything on the first two, but on the third one, they could easily see bloody ulcers in the colon--the biopsies confirmed it, but they knew that they would because it was so obvious. Biopsies of the colon can also confirm microscopic colitis which Dr. Green discusses in his book, Celiac Disease: A Hidden Epidemic. Babygirl1234, did they tell you that they could see anything visually? That might give you a little bit of insight. Good luck waiting for your results--I think we can all sympathize since so many of us have been there before.

  14. Well, I have ulcerative colitis, which is very similar to Crohn's, instead of occuring anywhere in the GI tract, however, UC confines itself to the colon and rectum. I'm having a lot of trouble because I've been having a flare-up for months now, and i just can't seem to get into remission. My doctor decided to give me a new med today to see if it works any better than the old one, but it's an aweful experience to have both celiac and an inflammatory bowel disease at the same time. I really feel for your daughter. I'm 27 now, but when I was 21, I had an unbelievable bout of bad health for a few years. I hope that she gets the help she needs. I find plenty of low-fiber gluten free options, but I cook or prepare most of my own food--I don't know if she's living at home or in a dorm, but that will have a huge impact on her ability to find food. If you'd like suggestions, I can provide some.

  15. NicoleAJ- Sorry to hear you were recently diagnosed with UC. I was about 17 when I started having problems, cramping and diarrhea which over the course of a few months developed into bloody diarrhea. I was referred by my family doctor to a GI and he did a colonoscopy and diagnosed UC. I have, over the course of the last 14 years spent more time in the hospital then anybody I know. My ds was a preemie and I have had two miscarriages so I have yet to have a full term healthy baby but, here is hoping! I certainly never gave up hope that I'd be a Mom one day.

    If I had another flare up while gluten free I certainly would use steroids to try to get it under control and carefully introduce any foods back into my life. I do not want to take maintenance drugs right now because this pregnancy is going well and I feel good. I was just surprised how fast my GI said it was a coincidence, he wouldn't even entertain the idea there could be a link.

    Thanks for the feedback!!

    Bumblebby--what an aweful ordeal for you to have to go through. I'm so glad that things are going well for you right now, and I totally see your perspecitve in not wanting to take the drugs now. GIs often do say surprising things--I like my GI a lot, but I don't necessarily think he has all of the most recent research. I can't wait until my graduate program is over, so I can move to a metropolitan area where I will have plenty of options for doctors--trying to get pregnant will have to wait until then (I live in a beautiful area but it's a three hour drive to a major city where I can get the treatment I need). Again, best wishes to you and your family.

  16. First of all, I agree that this doctor did not handle everything very well--it is surprising that no one would do a celiac panel on you or an endoscopy to see if gluten was causing additional problems for you. On the other hand, the doctor isn't totally wrong in saying that there's no examined connection between UC and celiac disease--there very well might be a link, but we just don't have extensive research that tells us how the two diseases team up on your body to make your life hell. I was diagnosed with celiac 2 1/2 years ago, and I responded really well to the gluten free diet, but, in addition to celiac, I've recently been diagnosed with UC. At first I kept thinking i might be having abnormal gluten reactions, but then I realized that something was truly wrong that had nothing to do with gluten (since I'm so obsessive about my food being gluten free anyway). UC feels different than celiac--to me it's worse because there's no cure; it's not about avoiding a known offender, but rather about getting sick whether you're trying hard to get better or not.

    Bumblebby, you are truly blessed to be having such a positive pregancy experience with UC--that certainly gives me hope for the future when I want to get pregnant since so many women with UC have serious complications early in the pregnancy (as you know). You should definitely stay on the gluten free diet since it seems to have induced your remission. That being said, how were you diagnosed with UC in the first place? If you've had such an overwhelmingly positive dietary response, I wonder if they just missed a potential celiac diagnosis years ago when you first started having trouble. Though we don't know the exact connection between the two diseases, so many of the symptoms coincide that often someone has one disease and they misdiagnose it for the other. If you don't have another flare-up, the gluten free diet could very well be your answer, but if you do, that would be the time that I would imagine it would be best to return to the meds. I'm sure your doctor has the best of intentions in trying to get you onto a UC medicine to maintain the remission, but no one will watch out for your health quite as well as you do yourself, and it sounds like you've got it pretty well under control right now. Congrats!

  17. I've never really gotten why people steal silly little things at all. Unfortunately, people also steal things with sentimental value as well. When a family friend had a son missing in action in Iraq, they got a car magnet with the MIA flag and his name--someone actually stole that. Who would be sick enough to do that? It's creepy really.

  18. Here's a link to the PI (prescribing information). (You'll actually have to scroll down and click 'more' next to the drug name.) I find it useful to google these (with the syntax "prescribing information <drug name>" when I take something new.

    While the inactive ingredient listing in the PI does mention starch, it is often NOT wheat starch. As you noted, however, it is absolutely best to call, as it could be.

    Make sure to read the Contraindications and Warnings section, as well as the two sections Agents That May Affect Tegretol Plasma Levels and Effect of Tegretol on Plasma Levels of Concomitant Agents so that you know what other medications will change the effective dosage of this one (like Claritin, Advil, and grapefruit juice, among other prescription drugs) and what other medications this one will change the dosage of (tylenol, corticosteroids, some antibiotics, and birth control, among other prescription drugs).

    If you're not used to reading PI's *PLEASE remember to take the information in context*. It reports *a lot* of information. And it can sound scarier than the true picture. It's useful for reference, but don't let it make you paranoid about the drug either. The FDA requires a lot of warning and cautionary information - and with good cause - but if you're not used to reading them, they can easily scare you. There's information there to work with, but not to panic over. It's good to be informed, but still work with your doctor on the application of that knowledge. (I don't know if you're familiar with reading these things or not, so this bit may be totally unnecessary for you.)

    Thanks for the info, tarnalberry. I actually did read this yesterday, for the most part--I skimmed some parts of it (yes, definitely some scary worst-case scenarios even though those don't apply to everyone), but it is always good to let people know that this is out there. I googled it as well. I'm definitely going to have to double check on the birth control since I believe that mine is estrogen-based rather than progestin-based.