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RubyRose

Feeling Sorry For Myself And Confused.

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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

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome to the board. You do need to be consuming gluten for any celiac related testing. You may want to call the doctor's office and ask to speak to a nurse. It is possible that your doctor told the GI about the severity of your reactions and that is why the told you to stay gluten free. It is also possible that (shudder the thought) they are not all that familiar with celiac testing and made a mistake. 

It isn't unusual for the body to react more strongly after we go gluten free and accidently get some. Do be sure to check out the Newbie 101 thread at the top of the Coping section so you know what you need to do to keep yourself safe.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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What she said! I didn't think I'd have a problem but dang!Those withdrawal symptoms can be tuff!! And when you get Gluten!! Yea it will Affect you. I hear it doesn't affect you as much as time goes by. I think thats the way it goes. It does get easier, Your eating alot healthier . Don't beat your self up!!


Recovering Gluten Eater 

DX'd June 17th 2013

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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.

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It is sometimes hard for people to resume eating gluten for 2-4 weeks  for the endoscopic biopsy, or 8-12 weeks for the blood tests, so we often tell people to get the testing done before going gluten-free - it gets trickier when your appointment is almost 2 months away. Have you had any tests done yet? If you can get all the tests run by your GP, it might be a good idea to resume eating gluten and getting the tests done soon and then you will probably only have to resume gluten for 2-4 weeks for the biopsy. I didn't see how long you have been gluten-free, but if it is only a few days you won't need to resume eating gluten for long (most likely) to get accurate tests. If you were gluten-free for a month, I would eat gluten for a good month before testing.... The shorter amount of time you were gluten-free, the shorter the gluten challenge will probably be required.

 

If you get the GP to do the testing, get as many tests run as possible.  These are the tests:

  • ttG IgA and tTG IgG (most popular tests - get both done and not just the tTG IgA) - tissue transglutaminase
  • DGP IgA and DGP IgG (newer tests good at detecting earlier celiac disease - get both - it replced the AGA tests) -deaminated gliadin peptides
  • EMA IgA (detects more advanced damage - similar to the tTG igA) - endomysial antibodies
  • AGA IgA and AGA IgG _older and less reliable tests largely replace by the DGP tests) - anti-gliadin antibodies
  • total serum IgA - a control test to ensure you make enough IgA for accurate tests

 

If you haven't been gluten-free long, consider resuming eating gluten for a time and get the tests done. If you are gluten-free from December to February, you will need a 2 -3 month gluten challenge for accurate tests - why go through that if you don't need to, right?  

 

Best wishes.   :)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I have so much sympathy for everyone on this board.  I am not celiac, but 2 of my 3 adult children are.  It took about 10 yrs for my oldest to get diagnosed, it really made me lose faith in doctors that with all her symptoms, no one suggested it as a possibility for so long, I think they thought she was a hypochondriac.  I think it's because there are so many various types of symptoms, there is no hard and fast list of celiac symptoms that everyone will get.  My son and daughter both have some of the same symptoms, and some are different.  As a child, my son absolutely loved bread and I used to bake him homemade bread all the time.  How guilty I feel about that now, if only I had known back then that I was giving him poison for his health.  Its ok to feel a bit sorry for yourself, its a hassle to deal with and there is no magic pill to take to make it go away.  But, over time as you get your diet under control it will get better.  Unfortunately, my son has found that since he's been avoiding gluten for about 2 yrs, he is even more sensitive to it when he does get accidentally glutened.  But that doesn't happen too often, thank goodness because he is very strict about his diet and lifestyle.  You will get a feeling of empowerment once you get it under control, this disease will affect your life in some ways but it does not have to manage it. 

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I remember beginning to have reactions from accidents after the forth day gluten free.  Symptoms are great things, because they are such great deterrents.  My reactions did seem to be more and more extreme until recently.  I think it is easier to tell when something is off, when one is feeling better.  There was a time I just felt awful all of the time.  I wouldn't worry too much about the symptoms becoming more vivid to you.  Just learn as much as you can (as you are) and keep walking as vigilant as you can.  You may want to do the testing for the benefits your family may get from it.  One has to decide whether the symptoms will allow you to do so.  I know my extended family is starting to notice my weight loss; and sometimes gets educated by other's examples or discussion with them. 

 

Best wishes in healing RubyRose

 

Dee

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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.

 

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.  

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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!

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