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About jenvan

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    Lynne took this picture! :)

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    Hit up our local group - Gluten Free Indianapolis!
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    Indianapolis, Indiana

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  1. Update if you're tuning in. As I thought, my celiac panel came back fine. So that is always a great thing--but doesn't bring me any closer to answers. I did, thank God, have a good appt with my hematologist. She is caring and takes time to really think through things and ask questions. Running some tests for other antibodies, infections, autoimmune issues, b12. We'll see... I feel somewhat better--been trying to spend of lot of time resting! Thanks all. I'll let you know if we find something interesting or that might help someone else here...

  2. I got tested because I had severe anemia. The anemia has gotten much better now that I'm taking 1000 mg of iron. It is now normal but before that all happened, my pcp sent me to my GI doc to be scoped and that's when the biopsy came back.

    Anemia is one of the VERY common effects of Celiac. I was in the same situation. Props to your doc for testing you. It took me years of pills before I finally insisted to go to a hematologist, who in turn diagnosed me.

  3. Ooo, please do post more if you can :) Dh gets motion sickness :(, so no boating or deep sea fishing, which is a bummer, but I won't complain since he puts up with me! :lol: He does jetski though. So we thought about that or most likely kayaking too ! I found a place to rent them... Ever ck out any of the local malls? I saw the local outlet place has Le Creuset--and we will be driving, so I have room to buy! (Hmmm, better see how much $$ I have to buy : ) The aquarium sounds like fun. I'll look up AJ's too.

    Tiffany--Glad we won't be there at spring break! I would have been very cynical about the situation, to say the least ! :D

  4. Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

    I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

    Pondering the next step... ;)

    That's hard... Telling her the truth in a graceful way is usually the best thing to do. What about still being friends, but letting her know you can't share in her food b/c _____ and that you will be providing your own ?

  5. Just read this today--on subclinical and unusual manifestations--or folks who don't have classic GI syptoms. http://www.ijppediatricsindia.org/article....last=Mustalahti Villous atrophy is pretty darn specific to Celiac...maybe also with giardia (I think you'd know!) or a cow's milk intolerance (more rare response). Doctors are just now starting to realize that not all *Celiacs* experience the classic symptoms. I would definitely pursue the diet. You said you didn't really have any "symptoms." How did you end up getting tested?

    Getting started--one of the biggest helps for me was ingredient lists that helped me identify safe and non-safe ingredients in labels. Ck them out here: https://www.celiac.com/st_main.html?p_catid=12

  6. oh good!! i just got the ring and i start it next week!

    i am kind of nervous, but im glad you like it. i dont know anyone else on it.

    do you feel like the hormones are less than in pills?

    Yes...generally speaking. Here's a info below:

    Because the hormones in the ring are constantly being released into the body, less hormones are needed. In fact, the average levels of estrogen in the bloodstream is about 18 pictograms/milliliter (pg/ml) for the NuvaRing, whereas the estrogen level is at about 35 pg/ml for the average hormonal pill. These lower amounts of hormones lead to fewer or less severe side effects for most women.

  7. I think my body reacts to casein the same way it does to gluten. Ever since I went back on the pill I started getting headaches and muscle inflammation again - so I started taking them 3 months at a time thinking it was hormonal migraines and I could stop them if I kept a constant flow of hormones.

    Instead I was giving it a constant flow of casein, and it got worse. Just found out today when I called Barr labs on a hunch - it is Junel, a generic for LoEstrin. I asked it is was gluten free since I've also had gastro upset lately that I can't track down in my diet. He said, no but it has lactose - there is dairy. Yikes.

    So now how do I figure out which birth control is safe? Just switch to the patch? I need to stay on it because I'm prone to cysts.

    I also recommend the nuvaring. Less hormones than oral and goes right into the bloodstream...so you don't need to worry about missing a dose or something like antibiotics interfering with it.

  8. Well, my idea can't explain the fevers, but....

    I had a lot of similar symptoms after going gluten free. I went nuts with doctors, so many appointments, trying to figure out what on earth was wrong. Finally after seeing my face so many times my dr. suggested it might be anxiety and that I should try and anti-depressant.

    Of course I scoffed....anxiety? How could that be responsible for fatigue, migraines, dizziness, hearing my own heartbeat, nausea, vision problems, sleep issues, muscle aches? How could this be? I felt fine, I didn't feel anxious or stressed out at all; I'm a teacher, it was summer, no stress whatsoever.

    I ruled it out and went to another dr. After one visit he suggested the same thing as my other dr!!! I felt like i was going mad. Don't these dr's see these are real physical symptoms?

    However, I was at my wits end. I had tested blood sugar, vitamins, thyroid, every friggin blood test you can have. I'd had a colonoscopy, and upper endoscopy, and a dozen food allergy tests. I was sick of tests. I finally tried the anti-depressant.

    Embarrasingly enough, every single symptom disappeared. I felt so stupid. It was that easy. I now know I suffer from anxiety but I never thought I did because I didn't feel anxious AT ALL. I just felt SICK.

    This is probably not your problem, but if you absolutely can't find another diagnosis, at least consider it.

    Hope it helps!!!



    Oh, and thanks for sharing that information too. Sometimes you never know.... !

  9. Hiya. Sorry wasnt sure which section to put this under, and wondering if anyone could give me some advice as i dont know whats wrong and silly doctors are not really helping.

    Basically its exactly 3 years now that I have been diagnosed as coeliac and been on the diet, and adhere to it pretty strictly. Basically when I was diagnosed i had the blood test, followed by the gastroscopy. However, I also had GERD at teh time, and also unexplained intetsinal bleeding, so they did a sigmoidoscopy as well. Basically he said that whenever I get bad diarrheoa my gut cant cope, and my blood vessels are very near teh surface after the villi being destroyed, and told me it should improve with a gluten free diet.

    Anyway, 3 years later and the bleeding has just been gettign worse if anything. I always have diarrhoea, and i dotn even have any fibre in my diet so i have no idea why. i still have the bleeding problem as well. some foods in particular seem to set it off, but other times i dont know what it is. i have noticed that nuts and seeds, and dessicated coconut, as well as spicy foods, black pepper and chili are all problem causing. i had trouble if i ate over 15 grams of chocolate a day before the diet, but now i am fine with chocloate. i dotn understand. its very confusing. earlier this year the bleeding got so bad that they were going to hospitalise me, but i really dont like needles and dont trust hospitals, so tried changing my medication instead. (it may be coincidence that this happened a week after i tried oats for the first time since diagnosis but later realised they must have been contaminted with wheat anyway.) anyway at that time my gastroenterologist said he wanted me there so he could do exploratory surgery (!). i was really not keen on this and went to see my GP (normal doctor) instead. he diagnosed me with having IBS (which is often mentioned on this site is aka i dotn know what it is), and gave me mebeverine, and when this didnt work well, gave me alverine as it is stronger, and also gave me procteosedyl and peppermint oil capsules as he said this should help. my gastroenterologist failed to admit he had missed tehre was soemthing else wrogn with me apart from coeliac disease, and was just like "yeah, well IBS is even more common than coeliac disease, 10-25% of people have it". which didnt exactly fill me with confidence that he knew hwta he was doing. anyway what he wanted to do was exploratory surgery, including tying off the blood vessels which were causing the problem. though i think this is stupid - i think he only wants to do it because he wont admit there is another problem until he has seen what it is exactly, and also thsi is stpid, because surely if i accidentally eat soemthing that doesnt liek me again, surely teh bleeding will start again. i need to know what is causing it in the first place. surely he should at least test me for other intolerances causing me to have D all the time before doing surgery?

    also my other problem is that it is making me very anaemic - i normally have to take the pill continuously to prevent time of the month, so as to not become mroe anaemic, as the only iron tablets which did not make me ill - Slow Fe, have now stopped being made. and supposedly youre not suppoed to take iron tablets with IBS anyway...

    I dont know, any advice please...


    I was also going to mention diverticulitis, as you mentioned seeds being a main issue. Crohn's may be something else to explore, as it is associated with bleeding and several other issues, like fistulas, where food can get trapped and lead to infection, pain. Go see another doctor. Never accept an IBS "diagnosis" until ALL OTHER possiblities have been elminated. All to often we get labeled with IBS, instead of our real illness or disease. If you are having much bleeding and it does not appear to be from hemmorrhoids, I def rec you pursue evaluation with another doctor.

  10. Hmmm....I have frequented Destin and surrounding areas often...i've had the best luck w/ fresh boiled shrimp and a baked potato and of course educating the staff/chef...

    I'm very :angry: to hear that The Back Porch has a new chef and he's clueless...that is one of the places I actually had luck eating at safely....Bleh....

    That stinks...I saw your other post on that. I am having great luck, thus far with the hotel. E-mailed on a whim and woman is working with chef and will arrange everything for me in advance. I just need to call her and set up this week. That's nice!

  11. I hate to tell everyone this...but Outback Steakhouse is no longer going to put out their gluten-free menu. They say they can't "guarantee" that anything is 100% gluten-free. My guess is that some stupid person complained one too many times about being glutened there...so they punished the rest of us and got rid of the gluten-free menu. Don't we all know that almost NOTHING can be guaranteed 100% gluten free?! We know that we eat out at our own risk, right?! The chance at a restaurant for CC is sooooo high that if you're sooo sensitive, don't go out and eat!! GRR - I'm so mad!! They've had these menu's for a long time...it must have been something big to make them take them away. So, anyway - I guess in the future make sure your server checks to make sure they haven't changed any recipes. Good luck!

    Where did you read or hear this? Just ate there a week ago... :(