Jump to content

Celiac.com Sponsor (A1):

Celiac.com Sponsor (A1-m):


Advanced Members
  • Content Count

  • Joined

  • Last visited

1 Follower

  • thecookingnerd607

About jcgirl

  • Rank
    Star Contributor

Contact Methods

  • AIM
  • Website URL
  • ICQ

Profile Information

  • Gender
  • Interests
    Converting regular recipes to gluten free. Bob's Red Mill all purpose flour and xantham gum are my buddies.My non-gluten related interest include rose gardening, Bruce Springsteen and my children's high school sports. I also enjoy entertaining and serving gluten free menu without others realizing the difference.
  • Location
    Conlin, NY
  1. I had a lump in the same area in 1984. It appeared a week after I broke out in hives all over my body and every single joint in my body was swollen. I literally could not walk to the bathroom without my mom helping me. I was in the worst pain in my life!!!! It has happened 2 other times sense then. However the lump was after the first episode. I had it removed and the doctor said it was a lypoma (sp) which was just a fatty deposit.

    The thing is the other day I noticed a lump under my armpit that is smaller and harder than what I had in the past. I am going to get it checked out and they had better not say IBS.

    Any lump should be checked out right away to be on the safe side.

    Good luck and i hope it is nothing serious

  2. Well the bloodwork from new GI is in. Everything is within normal ranges. Celiac panel-normal. In my humble opinion, it is a false negative as I have been gluten-free for 10 months. I am going to continue to be gluten-free based on enterolab, inprovement with diet and how I felt when ingesting gluten. :( No more cheating and having a beer or two. Time to become a wine expert :P

    I really wanted doctor dx, mainly because of my son and his symptoms

    At least I finally got a prescription for GERD which I was told 2 years ago that I had and to take mylox. By the time my scope comes up in December, the damage in esophogus will be healed and then they can all tell me it is all in my head and that I have IBS of the brain or something :rolleyes: .

    As for anti-depressant that the dumb doc gave me, I quit it. Feeling a bit sorry for the kids though, I am a grump. Hope the come down from the un-needed drug wears off soon. They better take care of those shoes for next couple weeks, lol

  3. My feet and hands do this too. It has become rather annoying, happens the most at night when going to sleep and/or sleeping. At first I thought that I was laying on my arm wrong but it happens when I'm awake as well. I also feel a tingling sensation on the side of my face and head sometimes. It is kidda scary. Anyone else have this feeling?

  4. Wow, I believe this is the first time on this site that I read about being covered with a rash from head to toe. I am 41 now, back when I was 19 I woke up covered in hives and every single joint in my body was swellon. I could not even go to the bathroom without assistance, hurt to much to move. It happened again about 15 years later, but not as bad. The doctor's as usual had no answers and wrote it off to an allergic reaction. Allergic reaction to what????????????? They never bothered to do any testing to find out, go figure! I am currently awaiting test results from new GI and I noticed on the lab form that he was also testing for lupus. Must be because of the history with the rash and swelling. You may want to look into that as well.

  5. Smunkeemom,

    First off, sorry I put the wrong screen name in my reply. I am posting from work and someone must have walked in and messed me up (that's my story, I'm sticking to it)

    More importantly, that is absolutly great that your grandfather's doctor is going to talk to your family as a group and more specifically to your Aunt. I am also glad that the doctor sees it for what it is, elder abuse. It may be inconvenient for your Aunt to have to prepare food differantly for him. Something we should all keep in mind when it comes to our parents is that we inconvenienced them a time or two growing up. Oh, has your aunt been screened as it does run in the family, the doctor may want to toss that out to her as well. Keep us updated.

  6. bobcatgirl,

    I had to keep reading over your post, the part where you mention that you have to "SNEAK" him gluten-free food really troubles me. It seems as if there may be some control issues at the very least on your Aunt's part. My suggestion would be to have his doctor speak to her first. If that does not help, I know this may be harsh, but if the situation is as bad as the impression that I am getting from you having to sneak in food, then personally I would contact your local department of social services. I know in NY they protect the elderly from abuse. I hope that speaking to the doctor helps her to understand his disease. Being that he is almost 80 years old the gluten must play havoc on his system. Best of luck to you and your grandfather, he should be very proud and honored to have a caring and understanding granddaughter. Don't back down, I know this can be hard but someone has to do something.

  7. Well I went to the new GI yesterday. What a horrid drive, 3 hours of constant rain with windshield wipers that need replacement (thanks hubby for letting me know ;) The appointment went well, I guess. The doctor wants repeat all the tests that I have had done in the last 2 years, including to my HORROR another colonoscopy. He seemed puzzeled that my previouse doctor went from colitis, to inflammatory bowel to IBS over the past few years. He also sensed how upset I have been. When I told him of my improvement with the gluten free diet he flipped back through the rather limited file that my old doctor sent and said that he did NOT in fact perform the celiac panel. So new doctor ordered the IGA and TTG, I guess the others were performed???? I mentioned about a false negative being that I have been gluten free and he rampled something off about wanting to see if I had the antibodies or an IGA deficiancy. Anyway, I figured what the heck, at least he ordered some tests and compliantly walked down the hall to dracula :P

    I did not mention my Enterolab results as I am waiting to see how things go with the testing he has ordered. Didn't feel like being possibly blown off.

    The edoscopy and colonoscopy are not until 12-7-05 so I am debating on starting to consume gluten and be sure he does a biopsy. Not sure if I can handle the pain though.

    Oh, he couldn't believe when I told him my home was flooded twice last year and my doctor didn't have me tested for parasites when I presented a few weeks later with symptoms. Isn't parasites first thing to test for??????

    I shall keep you all posted. Also, the pains in my side come and go lately, not as bad as a few weeks ago.

  8. Just an update, still getting the pains, they tend to come and go. Some days not as bad as others. I have been careful when eating so as not to get glutened. I will ask the new doctor to check out how my gullblatter is functioning. I have also been experiencing pain in my neck that radiates into my head, like a dull nagging headache and very very tired. These new symptoms have been going on for about 4 days. Any possible relationship to the pains in the gullblatter area?????

    I of course have not gone to doctor, well because he would just say "Oh it's a flare up of IBS"

    And speaking of stupid doctors, took my son to pediatrician because a chronic vomitting, his GI spoke to Pediatrician and told him what tests to order. GI is a 2 hour drive. Anyway, Pediatrician tells me results are fine and the vomitting my all be in his head and he wanted to put him on mild anti-depressant. I was in friggin shock! The poor kid couldn't keep anything down for 5 days. I called the GI office next morning and they got the results, said it was from all the infection in his intestines that was causing vomitting and to by no means put him on anti-depressant.

    Sorry for venting, it just seems to get worse with doctors in my area rather than better. I bet they have our files flagged as Pain in Butt patient/parent.

  9. I had that same pain last year on the right side, right under my ribs (in fact it was sort of located right around the bottom two ribs).  My dr. also said it was IBS, that gas can build up and tends to build up in that area (which makes a sharp turn to the left), and can expand your intestine to the size of a softball (!) which could be causing the pain.  This was also the visit in which he told me I couldn't have celiac's because I hadn't lost 15 pounds in the last few months....but when I went gluten-free the pain went away entirely.

    Now, however, I have a pain that comes and goes in the *lower* right part of my gut.  I am having a bad time right now keeping gluten-free and am very sensitive to any source of gluten, so I'm hoping that it clears up once I get rid of all the gluten in my system.


  10. Jen, the doctor didn't bother to say anything other than not gullstones and called in a prescribtion for IBS, some anti-spasm med. Needless to say I did not bother to fill it. I have an appt October 13th with a GI in Rochester, NY. My son's pediatric GI recommeded him. I am so pleased with the pediatric GI, he did not blow off everything we said and tested and tested until he got answers.

    I have been gluten-free sense January but have had some slip ups. Tuff diet to follow.

    I am actually looking forward to meeting with the new doctor with the hopes that he will do the proper tests to rule things out. I do not want to go back on gluten, however for a biopsy because I have felt so much better until recently. That is why I am sure there is something else going on such as gallblatter, pancrease, parasites, etc.

    Thank you for the responses, I will keep you posted.

    p.s.- my son finished up the meds for giardia and says he hasn't had diarehia for a couple days. Wouldn't that be great if it solves his problems. Keeping my fingers crossed

  11. I can believe this and I swear if I hear this doctor say IBS one more time.....

    Please excuse my ranting and raving, I am just so frustrated!!!!!!!!

    I have been having sharp stabbing pains for about 4 weeks now, progressively getting worse so I made an appt with my GI locally. I have an appointment for 2nd opinion in October for gluten intolerance, etc.. I went to local doctor because of the pain. I go in and he says it is just a flare up of IBS. I asked how he could know this without any testing. So he orders an ultrasound. The tech told me to wate for the results and for them to call my doctor. After a 40 minute wate they tell I am free to leave. I found it strange that she had me stay. Anyway, I call the doctor and he says no gallstones so it is IBS and he wants to prescribe another type of pill. It makes me so angry to know that this man is so hooked on IBS that he does not rule out any other problems first. I have GERD and who knows, the pain could be from ulcers, could be pancrease, could be alot of differant things.

    Five minutes later my phone rings and it is the pediatric GI in Rochester calling to tell me my son tested positive for Giardia. So I call my doctor back and demand a test. He seemed rather annoyed and said that is not your symptoms, I told him that yes, chronic diarehia has been my main symptom for the last 10 years and that no stool testing was ever ordered. I find it unbelievable that for the last 10 years not one doctor has ever ordered tests to rule out parasites. My test did come back negative, however he only ordered testing for giardia and not other parasites.

    By the way I was diagnosed through enterolab as gluten intolerant.

    Gluten Free sense January, 2005 with slip up here and there.

  12. Update:

    I went to Wegmans.com allergy section and they have printable lists of gluten-free, lactose free and Lactose/Gluten free Wegman's brand products. I printed them and put into an organized 3 ring binder. On the front I taped the ingrediants to watch out for that contain milk products. I figure this will give me a jump start when shopping. I plan to cross things off the list as I go along that contain dairy and also add other name brand items. If this works out well and I get good at it I will put packets together if anyone is interested. Wish me luck :)

  13. Carrie,

    I will take you up on your offer. Any name brand easy to cook type foods out there that a 12 year old can cook and/or mircrowave on his own. He is not big on veggies, etc. Loves the fries, lipton noodles, chix tenders. I also have to watch out for the acidy food due to his severe acid reflux and ulcers.

    I did find a great substitute for ice cream. Philly Swirls are awesome

  14. My son has to do a dairy challenge, same as the gluten challenge to see if that is a cause of his symptoms. I have been searching for mainstream food lists that are dairy free. This site has been so helpful with gluten free products and I am hoping that someone may know where to direct me. Shopping is so hard these days, I am gluten-free and now I have to also shop DF. Thanks in advance for your suggestions


  15. Carrie,

    I believe he was talking about swelling in the intestines. I spoke to the nutritionist yesterday and she said one diet at a time to start with. I also did not realize when I first posted that they were talking about all milk products and not just lactose. Grocery shopping will be difficult with my being gluten-free and my son being milk free. I also have 4 other kids in the house that can eat whatever they want no problem, of course they are step children so I don't have to worry there.

  16. My son finally had his biopsy 8-15-05. The poor kid has 4 ulcers in the esophogus and 1 in the stomach from severe GERD. The doctor called today and said that the results of the biopsy were negative for celiac but that he does have inflammation. He is also waiting for some other pathology tests results. He suggested a lactose free diet for two weeks to see if that helps with the diarreha. He is also ordering more testing, the barium x-ray test thing (forget the name) and also more stool samples. (My enterolab results came back positive for gluten intolorance.) Are there specific tests for gluten intol. that I can request. I do have to say that I am Very pleased with this pediatric GI. He is very thorough and looking for every possible cause. I told him that I had my son on a gluten challenge for 2 weeks about 6 months ago, he suggested waiting until all results are in before going gluten-free. Needless to say my 12 year old is happy with that suggestion.

  17. I had the capsule endscopy back in January. My doctor said that he didn't find anything wrong and that he only saw inflammation in the small intestine. So he said I had IBS. This is the same doctor that 5 years ago told me I had colitis. After the fact I find out that he has a grant to study IBS so I think he is stuck on that dx. I did the enterolab testing and I do have gluten sensitivity. I don't know if celiac disease can be diagnosed with the capsule alone. The capsule takes hundreds of pictures as it travels through your intestines and records them on a computer that is strapped to you. Don't be alarmed when you pass it, it will be flashing as it comes out, made me jump right off the camode. My advise would be to ask your doctor to test you for celiac disease and don't take no for an answer. I now travel several hours to see a GI that I feel comfortable with and trust.

  18. Please excuse the venting, I'm sure many have had the same frustrations:

    Well I finally received my results from enterolab yesterday, and low and behold, my GI doctor was wrong and I was right. After living 10 years with going from one dx to another and then back again, I finally have an answer. What makes me very angry however is that I specifically asked my doctor to run the panel. He ordered blood work and told me I don't have any problem with gluten, it is just IBS and went on and on about that. Keep in mind, 8 years prior this same doctor told me I had colitis. He left the area for awhile and one of the other doctors in the group told me I had Inflammatory Bowel Disease, prescription-malox, yeh right. Original doc came back and after more tests comes up with IBS. Come to find out he is now researching IBS. Funny thing is he didn't want to listen about the positive results of the gluten-free diet. YOUR FIRED DOC! After 10 years of living in agony and pain, snapping bones in half, severe migraines, etc., I finally have an answer and can stop feeling like the bif cry baby hypo-condriac.

    No more cheating for me. Had a few beers in the hot summer heat. Time to learn to make smoothies for the boat. :P

    Next stop, August 2, Golisano Children's hospital GI clinic for my son. I already know what the answer will be but to keep him strictly gluten-free, it will take a doctor telling him that he needs to do so. I told him to enjoy his Top Roman noodles while he can (loaded with wheat)

    Thanks for letting me vent. I have found celiac.com very informative and helpfull in the last 7 months.

  • Create New...