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RubyRose

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  1. After almost a year and and half since I figured out that all of my unusual symptoms pointed to Celiac/sensitivity. My Dr. has finally given me a diagnoises as probably celiac.  They did not find any damage in my endo. but because everything with my health got better when I was gluten free....she said the likelyhood is greater than not and felt comfortable giving me the diagnoises. 

     

    So i am now going gluten free after nearly 4 months back on Gluten....My withdrawl sysmptoms do not seem as sever as the first time. Is this normal?  I have had a terrible headache and body aches, and i feel kinda tired, but I remember it being much worse when I did a trial run 10 months ago.

     

    Anyway I am happy to be back to gluten free.  I felt like a totally different person.

     

    Amy J


  2. So today went to my first Gastro appointment.  I felt like the Dr. totally dismissed my symptoms.  He told me because I was not skinny and havig diarrhea, I was not celiac.   He said he would do an Endoscope and a colonoscopy to rule out celiac and other gastro issues that may be causeing me distress.  In the end I will be tested but, he looked at my labs from 15 months ago and said they were neg. and that I only had a 5% chance that I did infact have Celiac.  He did not order anymore labs. I was hoping they would check vitamin levels, or do a comprehensive panel.  Or even a genetic test.  My aunt had Crohns but he said it did not matter  for secondary relatives, only grandparents and parents and sibilings.  I don't understand this.  If Aunt had crohns, and she is the daughter of the same parents as my mother, My grandfather of whom y mother said he always had stomach issues. Hello Celiac was not diagnoised in people who would have been in the generation born around the turn of the century, so why would that secondary relative not have any bearing what so ever?  He kept referring to a person your size (I am 250lbs), then gave me an example of a guy who came in with positive blood work he went Gluten free and gained 20 pounds and went from 10 plus stools a day to one normal.  Yea for him, we are not all normal classic cases. 

    My physical exam consisted of hem listening to my back my chest, and feeling 3 areas of my stomach for 5 seconds each, I have several rashy areas he glanced at my arm and liked down the back of my shirt said doesn't look like a typical Celiac rash. Seems to me you would want to look at it more closely than that.

     

    I am so frustrated. He said he would not "recommend a glutten free diet" because it is expensive and difficult to stick to. But said I could do it if it made me feel better, but there would be no health benefit from it,  If I am not Celiac I am not doing any damage. 

     

    I tried to tell him about the journal I had been keeping of before Gluten free, through going back on gluten and he interrupted me and started taking about something else. 

     

    Thanks for letting me vent. In the End I am getting tested, but I was hoping for a Dr. who was more sympathetic.

     

     


  3. I don't think I would be bothered by it. It was not a celebration for you.  If it had been a party for you and they hadn't gotten anything you could eat. I could understand that. Some one else said, I don't expect others to cater to me.  I always bring a back up plan of goodies for myself, and if someone thinks of me I am flattered


  4. My MIL told me at the family Christmas celebration that she though someone was just making up all of this Celiac stuff to make money..um, ok....We've been to visit them twice since my diagnosis and they keep insisting on taking us out to eat because it's "easier".  I brought plenty of food to eat so I was fine.  The place we went was in no way gluten-free, not even yogurt or anything like that so I had a glass of juice.  

    SMRI,

    I am so sorry your MIL was so mean to  you.  My exteneded family are begining to understand my situation but my sister today after being glad to hear about my Consult with the nurse says....What are you going to do if you don't have Celiac? (big sigh) I hope with time your MIL will realize you do have a real problem.

     

     

    Thanks again everyone for your help,and support. I got a call from the nurse today and she left a message with my Dr. He said he DID want me to resume Gluten mid January before my Feb. 4 appointment.  I am not looking forward to it, but I want to know so that I can move forward especially since my DD shows many of the same symptoms and has since birth.  I have noticed a great improvement in  her when I know she is eating well!....so we will see.

     

    Happy New Year Everyone!


  5. Thanks everyone for the warm welcome.  I am feeling a bit better, but still confused about staying Gluten Free until Feb. Their office is closed until Monday, I plan to call and make sure they do want me to continue until then.  I successfully navigated my family diner and a Christmas Eve party this week with out complications, and that makes me feel empowered.  I still get questions from my family like you can't just take a bite, why don't you just go off your diet for the hoildays?   I looked at my sister and said "Our Nephew is allergic to nuts, should we let him eat a few for Chritmas?"  She says "You couldn't be that allergic?  Yeah I am cause when I eat glutten I feel like crap for 3 days to a week.  Wow that felt good to say.

     

    anyway thanks everyone.


  6. Hi Everyone, 

    I have been trolling this website for 2 months now.  I have gotten a lot of great info, and  felt like I was on the right track. So far I have been very positive about going Gluten Free as it does make me feel a lot better. But it seems like now that I have stopped, when I get accidental Gluten my symptoms are 10X worse than before.  Is this all in my head?   

     

    Here is my history.

     I have battles Constipation and Diarrhea for my whole like.  I remember my mom giving me Enemas as a child when I could't go, I have always been very anxious and that would lead to Diarrhea.  I was told I had a nervous stomach, andeventually "A Functioning bowl" (Shouldn't everyone have a functioning bowl.?) And now labeled IBS.  I started having pain around my rib cage about a year and a half ago.  Went to the DR. thinking it was Appendix, then CDIF  tested for celiac (with the older test) then they said nope just a muscle strain.  A year and a half later I have that pain along with one just under  the waist band....they have no clue. I had my gall Bladder out years ago... So after getting to point where daily activity was exhausting, and i was so weak and tired I just gave up figured it was from being overweight, Diabetic, on Antidepressants,  and 42.  Then one day on Face book I came across an article that sounded like it was written about me.  I had 9 out of 10 symptoms. I talked about it with my sister who is a nurse and my hubby and decided I had to take my health into my own hands and started to eat Gluten free. Within days I had more energy, I felt like I could think, My stomache felt better, my rash that I had had for a long time, but thought  it was adult acne started to clear up.  I took my info to my Dr. who actually took my seriously.  She contacted a Gastro for me and said ifI feel better keep gluten-free.

     

    So here I am in the waiting period.  Feeling better most days until I get Contaminated, then I feel like I have the flu for 2-3 day. My bowels immediately seize up and if I pass anything it is tiny hard marbles. then will have a day I am in the bathroom every hour or so until my colon is cleaned out. Is all of this normal?

     

    I talked to the Gastro, they said keep gluten-free until my appointment still a month away...but people on here have said don't go gluten-free?  So do I or Don;t I.

     

    In the mean time. My immediate family is extremely helpful and understanding, my Hubby looks up recipes and makes sure when he cooks he isn't contaminating me. My children 10 and 14 tease me, but most of the time have been happy to comply and try new foods and try to keep the kitchen clean.  It is my extended family that do not understand, and It really bothers me, I feel like until I have a diagnosis they won't take me seriously.

     

    Also I think the newness of trying new stuff, and learning is over.  So now I am thinking...this is it...this is how it will be and I am feeling sorry for myself.  All those yummy things I will be missing and the extra work that goes into making your own food. the whole convenience of fast food gone.  It makes me very sad.

     

    thanks for letting me spout off this morning. I just needed to get that all off my chest.  If you read the whole thing, thank you for your time.  Merry Christmas

     

    Amy


  7. Hi Everyone.  I have been reading a lot and researching a lot, and I am 99% sure I have at the least an intolerance to Gluten, but  feel like it is most likely Celiac.  My blood work a year and a half ago were Neg. But I was only tested for one Antibody.  After researching I decided to take gluten out of my diet and all of my symptoms are gone! My Doctor was actually impressed that I had done this and felt I was on to something. She referred me to a gastro, but they cannot get me in until Feb.  UGH the waiting is killing me.  I am contiuing my gluten-free lifestyle as per the Gastros orders, but I was wondering if some of you could look at my symptoms list and let me know if they are consistent with Celiac.   

     

    Headaches after Gluten consumption..sometimes leading to Migraine

    Brain Fog,

    Constipation followed sometimes by diarrhea, 

    bloating,and hard abdomen

    Pain just under rib cage and at waist band area on right side

    TIRED and sleeping ALOT

    Painful joints, stiff body, 

    Nausea occasionally

    Painful Periods with lots of clotting

    Rash, But not sever, but does follow DH protocol, usually both sides fluid filled blisters, purple scars as they go away

    weird feeling like I am wearing a wool sweater.

    Craving Sugar all the time

    Hungry all the time

     

    All of these seemed to have gone away or lessened with The removal of Gluten.  This couldn't be a a coincidence, right?.  I would appreciate any help you could give me in deciphering my symptoms.   Thanks