anniej55

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Everything posted by anniej55

  1. anniej55

    Mass Doc

    Anyone have a name of a doctor in Massachusetts? Preferably Worcester area. Thanks! Ann
  2. anniej55

    Mass Doc

    Hmmm ... I see Dr. Crimaldi also. He did the correct blood tests and wanted to do a biopsy, but I opted to put it off due to other pressing medical conditions. I find him very thorough, knowledgeable, supportive and caring. He explains everything - to the point of going over the allotted appt time - and even called me on a Saturday to give me the results of a (different) biopsy. He never ever said that celiacs was a disease of diarrhea; he in fact stressed that I would get a stomach ache if I ate the bagel I was craving. I don't know why we have such a different point of view on him. All I know is that I've done my research, came in with questions and scary concerns and he answered everything I asked him. I even asked other people about him (being thorough) and found that he came hightly recommended. In addition, he sent me to a hematologist to confirm his suspicion of a potentially life threatening blood disease. Yes, I have it and I am now being monitored monthly. No other doctor, including the one that did surgery on me which caused me to bleed profusely, ever suggested that I had a problem. I wish you well in your search for a physican
  3. Hi, I have a biopsy scheduled for September. I don't know about the EGD - it was mentioned. I haven't had any problem eating normally ... but I know that it might not be affecting my stomach at this point in time. I think my biggest mistake was taking my primary care's diagnosis and not calling the GI for the blood results (in May). Come to find out, she didn't even know what a tTg was .... thanks for the advice. I'll let you all know what the results are. Ann
  4. Hi All, I was told by my Primary Care (in May) that I had celiacs; this was from bloodwork the GI did and I assumed that they conferred (they are colleagues and she got me in to see him). I never called the GI for test results because of what the PC told me. I had follow up appt with GI on Monday and he informed me that I DO NOT have celiac disease. Like, hello. I've been gluten-free since May/June. He's doing a biopsy in September to confirm the diagnosis, so I am (happily for now) eating normally. My numbers? Antigliadan AB Panel: Antibody, IGA - 23 (normal 0-19 units) Antibody, IGG - 54 (normal, 0-19 units) Immunoglobulins (serum) IGM 386 (normal 48-271) IGA 418 (normal 81-463) IGG 1337 (normal 694 - 1618) He said my tTg was 3 I do have ITP, an autoimmune disease, and NASH (liver). Have been tested for leukemia & lymphoma and came back negative. You all know more about this than I do - what gives? Did the gluten-free diet make me feel any better? I was never really sick. I will say that something I was eating that was gluten-free (muffins, etc) was causing me to bloat and have a rash; it has gotten significantly better in the past 3 days of eating. I see my PC tomorrow and will run this by her, but I am more then a little reluctant to take her word on anything right now. Thanks! Ann
  5. I had actually been considering doing that before the GI doc told me it wasn't celiacs. It was definately something gluten-free doing it to me .... I was eating the english muffins and corn muffin (George's). Rest of the time it was meat, potatoes, etc. Normal stuff. Feel way better now .... either that or I'm trying to convince myself of it
  6. I stand corrected - she gained when eating gluten. Thanks for pointing that out. I gained when I ate gluten-free .... and got bloated. Now that I'm eating normally the bloating is gone ..... leave it to me to be weird.
  7. It wasn't that he wouldn't diagnose it - he felt that the Ttg was too low to diagnose it, but would do the biopsy to double check. He was confident that it was not celiac disease ....
  8. Have I missed something - why would gaining weight when eating gluten-free indicate anything? Other then the fact that I was hungry all the time, so I ate more.... and I ate worse. Potatoes to fill me up (fattening, I know) .... hate fruit, so candy .... I was thinking IBS too, since I've always had a touch of constipation/diarrhea at different times in my life. I just don't know which way to turn anymore. Ann
  9. Alison, My tTg was 3 ... he said low, so no celiac. And yes, something is probably up. Maybe an intolerance. EmA - I'll have to look that up. I've had a battery of blood tests (9 vials at one time! - usually 3 or 4 is once every 3 weeks or so) so I'm sure I've been tested for everything. I'm on gluten for the biopsy .... but I really don't eat that much of it normally. And having a problem with gluten and NOT having celiac disease is OK with me! Ann
  10. Isn't the Ttg the bottom line for diagnosis? (other then biopsy). And that was low, which is what he made his diagnosis on. And would the other numbers be high due to another autoimmune disease? Just curious. Sigh. I dont know what to think/do now. This doctor was recommended as a celiac doctor. Ann
  11. anniej55

    Do You Ever Just Not Care?

    Hi, I come from this from both sides. I was just diagnosed with celiac disease and can very VERY angry sometimes. I'm almost 50 and finally have money to go grocery shopping, buy what I want and not worry about the cost .... and now this? Who the hell thought this joke up? I call those times my "pity parties". Cause I'm definately feeling sorry for myself. And when I'm finally able to , I tap into how scared I was during all the testing, thinking it was cancer. And as someone said - it could be a whole lot worse. So have your angry party, you deserve it. But then try to move on .... And yes, trying times do seem to bring out the worst in friends. If they' ve left you - they were NOT friends to begin with. Good riddance. I know it's difficult and i'm not demeaning college friendships, but a lot of them are based on all you being in the same dorm, class, etc. I wish my daughter would be tested; she is a college student who has various medical problems. Ahem - she was fine until a bout of mono her senior year in high school. My guess is celiac disease, but she also has PCOS and a heart defect (just recently discovered) and is doctored out. Can't say I blame her. Practical advice - you get a note from your doctor explaining your medical condition. You pull up articles about celiac disease - explaining the physical symptons, brain fog, etd - and go to the Dean of the College. And you ask for more time to finish the courses you had to miss. Most colleges are willing to work with students; they are not there to fail them. What they can do is change your failing grades to Incompletes and then you finish up the papers, etc, that fell by the wayside. At the very least it will be on record for the coming year. My daughter, sigh give me strength, refused to listen to me and has had her financial aid taken away. She went to the college yesterday and they are working with her on it - including changing a failing grade due to absences changed to an Incomplete, which will then be changed to a grade when she completes a paper. Hope this helps. Hang in there. And I honestly do understand the anger and despair. I certainly still feel that way and the only reason why I haven't smashed all the glasses in the house is because I'd have to clean it up. Please, let me know how you're doing. College is way too important to give up on. Ann
  12. Hi, OK - I have a (maybe stupid) question. I was diagnosed about 2 months ago -and didn't really have any symptons other then being tired. No stomach problems at all. Around the time that I had routine bloodwork (and it came back abnormal) I did have the bloating/cramping that people talk about .... and then the, um, physical response to that. So - was there no damage done to my my intestine up until the time the celiac disease was kicked into activity? I know a lot of you have been sick for a while before diagnosis, but it was a matter of weeks for me, which is why I can accurately recall being well/being sick. And it ticks me off, cause if I knew WHY I was bloated the first time I would have stopped eating wheat thins and beer and then - would I have avoided the full blown celiac disease? I have an appt with GI next week, first time I'll see him since the diagnosis. I've been dealing with my GP who isn't that knowledgeable, but is a GREAT diagnostician and has sent me to wonderful doctors, so no complaints here. Thanks all Ann
  13. anniej55

    Rebelling

    Hi, And I thought I was the only one what wanted to rebel. I've got a major case of "why did this happen to me - screw it" .... and have been fighting off a major urge to eat what I want. It's been very difficult these past two weeks and I don't know if I'm over it just yet ... My biggest problem is that I didn't really get as sick as you all. Sorry to hear the pizza wasn't worth it. I want a BLT on Wonder Bread .... it's the Wonder Bread that I crave. Ann
  14. Hi, I'm taking the plunge and will be buying some Kinnikinni (sp) online. I've read that their chocolate donuts are great - what about their bagels? My GI doc said to have some cream cheese on rice cakes - I would have laughed long and hard if I hadn't been on the table waiting for my colonoscopy. Rice cakes - you have GOT to be kidding Anyways, what about bread? I saw that there is two kinds of white rice bread by them and don't know which one to order. Anything else from them that is a must have? Ann
  15. Peter, No endoscopy - I was just told that I had celiac because of blood work. Colonoscopy was because of my age (50 soon), family history and the new diagnosis. Too late for endo now; have been gluten-free for about 2 months. I doubt it would have come back abnormal ? ?? I only had physical symptons for a few days; I honestly think this whole thing was caught before anything really manifested. Routine bloodwork found it. Ann
  16. Hi, I had my colonoscopy a few weeks ago and I was a nervous wreck; it was a week of tests and had had a bone marrow biopsy two days before. But I was nervous about what they would find ... not the procedure. The nurses were wonderful and I slept through it all. I, too, woke up in the recovery room and then slept most of the day away. Or at least I thought I did; my adult children now have wonderful stories to tell about their stoned mom. LOL. It seriously was the best sleep I've had in years. The prep was OK .... and I guess I'm not normal in that regards. My doctor doesn't do the gallon drink, so I was spared that. I also didn't get up in the middle of the night like I heard so many other people did. I don't know why other then the celiac disease - and my limited diet - had already done most of the prep work ahead of time. A small polyp the size of a dot was removed; it's benign and I have to go back in 5 years. No problemo! Peter - you said they checked out the villi with the colonoscopy? I know my doctor went into my intestine, would this be the reason why? I have an appt with him in a few weeks ..... would this take the place of an endoscopy? Ann
  17. Hi, I have a Vitamin D deficiency and am on supplements - 1500 units 3X a week. I have a check up at end of month, so I'll let you know what happens then. Probably more blood work! I was also diagnosed with ITP, an autoimmune blood disease. Essentially, my platelets are being eaten up by my immune system. When they go lower then low I bruise easily. Now mind you, it's not the normal easy bruising. We're talking deep purple marks that do not hurt and I cannot remember bumping .... because normally, nothing would have happened. I'm beginning to think that when I've been glutened the ITP rears it's ugly head. I don't know if what I have is DH, but I do have a rash on my body .... tyring to be delicate here. Under my breast and in another place I'd rather not discuss. I, too, feel like my body is falling apart, although I'm turning 50 in December. Unlike a lot of other people on this board, I felt absolutely positively fine when my diagnosis was being considered. I was in the best place in my life ... no stress, new job in my profession that pays well, etc. A routine exam turned up weird blood results (at the end of April); by the time celiac disease was diagnosed I had the complete set of symptons and had diagnosed myself. I have been tested for everything, including lymphoma. I guess my only consolation is that the time span is so short .... I cannot imagine having the symptons, going from doctor to doctor for years. I have a bone density test tomorrow - I'm expecting the worse. Oh well, just one more thing to deal with! Hang in there Ann
  18. anniej55

    Mass Doc

    Ruth, Well, well. Dr. Crimaldi IS my GI .... I just haven't seen or talked to him since the diagnosis. My primary care is the one who told me and said " you must follow the diet". I do have a follow up with Dr. Crimaldi on the 25th of this month. I better start writing down my questions .... he is super nice and did my colonoscopy. I thought he went into the small intestine because I mentioned the diagnosis of celiac disease; he obviously had it planned all along. My hematologist is wonderful too - Dr. Constatine at Milford Regional. Thanks for the help Ann
  19. Hi all, I know it seems early ... but how does one go about making gravy without using flour? And stuffing? I always used the pepperidge farm packaged mix (and added stuff to it). I'm not even ready to figure out how to do the pies .... Ann
  20. Another YAY - I love those potatoes, Kaiti. You are a walking encyclopedia on celiac's. How long have you been following the diet? Ann
  21. anniej55

    Gravy & Stuffing

    Hi, Thank you SO much. I kind of figured cornstarch, but had never used it before. And the stuffing may involve an extra step, but I can handle it. I usually use the box poultry seasoning ... little yellow one (forget the name of it). Would that be OK? And celery and onions and .... yummo. My biggest problem with the celiac diet is that I'm always hungry ... and gaining weight. Thank you again Ann
  22. Hi All, I was just glutened by my (new) shampoo. Now I'm just a little worried about my next hair dresser's appt. I have my natural color (HA) improved upon every 5 weeks (permanent dye). Is this a problem? Growing it out would be an absolute nightmare .... And do I need to ask her about the products she uses, or is my accidental glutened because I lean over my sink and wash my hair as opposed to lying back and having her do it? Thanks All Ann
  23. Well thank you all for the answer to my question - I've gained 10 pounds in about 3 days. And I was glutened by my shampoo. You would think that all the time I've spent in the bathroom would have taken care of the weight gain, but NOOOOOOOOOO. And yes, I'm bloated. I'll begin exercising when I get the OK from the doctor - I've also been diagnosed with ITP and my (un) professional medical opinion is that it flares up when I've been glutened; thus I have a huge bruise on my arm, but no pain. Just a little leery of working out until this is all resolved. Ann
  24. anniej55

    Eating The Same Thing, Over And Over

    Mandigirl - the anger has passed. I'm still at a loss as to what to eat for lunch (besides butterfingers, the only thing I really want) and my stomach was feeling well enough tonight to have some chicken and a baked potatoe. Although I tend to stay away from the taters; I gain weight just looking at them and can ill afford that. I thought a salad would just upset an already shaky stomach. I'll have to look for the pizzas; I do like Food By George's muffins. And I know the potential seriousness of eating the wrong stuff ... I've already been checked for lymphoma (now THAT'S a wake up call). I was just venting .... I don't know what I'd do without this board. My family is trying - my daughter is really good and watches what I eat like a hawk - but my mom is having a difficult time with what I can and cannot eat. Ann
  25. anniej55

    Eating The Same Thing, Over And Over

    Hi Sharon, Eating the wrong food was taken out of my hands .... I changed shampoos and, you guessed it, the new one has wheat in it. I have been in the bathroom for the past two days. So YES - I do believe I have Celiacs and NO - I will not intentionally eat the wrong foods. I was feeling so darned good up until two days ago ... and now I'm sleeping and, well, you know what else!