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Tyvm For This Forum!


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4 replies to this topic

#1 WCeline

 
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Posted 30 December 2012 - 10:07 PM

I'm am 36 yrs old and I finally have somewhat of a diagnosis! I don't know where to begin but somehow I don't think I need to explain myself to most of you.... I think you get it. The brain fog, mood swings, joint pain, muscle aches etc.

Back in September, I started experiencing vertigo episodes.....different than my usual lightheaded ness. Scared the living crap out of me. I'm not one to except all the many diagnosis' and meds thrown at me. I have been diagnosed with male pattern baldness ( I'm a girl and my hair first shed at 10), fibromyalgia, sebhorric dermatitis, psoriasis, demographia....urticaria, depression and recommended to take Prozac....,and I'm pretty sure there has been more. I am a mother of five children, who I highly suspect are affected as well. The youngest is about 15 months old.

With all the reading I have done, I was sure that I figured out what was going on . I asked my doc to do the testing. It came back positive for the elevated antibodies to gliadin etc.. They referred me to a GI, but I need to wean my little one before we continue with testing.

To be honest, I am experiencing an abundance of excitement at the prospect of feeling and looking better. At the same time, I am ANGRY that I have had to figure this out by myself. Even still, my husband, children and immediate family have had such a minimal reaction to my diagnosis. I am completely alone. I feel like they just are not understanding the seriousness of this, and how it also may be affecting them. *sighhhhhhhh*


But I am so thankful that I came across this forum! I
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#2 Celiac Mindwarp

 
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Posted 31 December 2012 - 04:03 AM

Come on in :-)
Angry seems pretty normal to start with. Lots of us worked it out ourselves, and then to add insult to injury had to convince our doctors.

You will find some great help here as you transition to a new diet ( and more besides).

I am not sure why you need to wean before testing. If you could tell us why that might be needed we might be able to help.


Welcome and good luck
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#3 julissa

 
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Posted 31 December 2012 - 06:10 AM

I am new here myself, welcome aboard! I echo your feelings as well. I feel like I have to be figuring out what's going on in my body, as no one else can. including 2 GI docs. the vertigo is also what scared me as well, and after doing my own research, thought it could be a gluten sensitivity. apparently I was tested for Celiac in January. the doc gave no other info, he said you're fine! I never heard of sensitivity until later in the year. but it's been a year of misery. I hope you get the answers you need.
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#4 WCeline

 
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Posted 31 December 2012 - 11:03 AM

Ty for the welcome:)

As far as testing goes, they would like to knock me out for the endoscopy and colonoscopy. Therefore the anesthesia isn't safe for baby. I could just go without breast feeding for a few days but at the same time I would like to wean him anyway. I'm exhausted :/ I'm still eating gluten and grains temporarily until I decide what to do. I have considered getting my eldest daughter tested. If she has it, then I am pretty sure I do. She can be the guinea pig ;)

I do have a question that maybe someone can answer. Besides needing the colonoscopy/ endoscopy for diagnosing reasons, is it also necessary for evaluating possible damage? In other words, do I need to have it done? Is it recommended? TYIA.
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#5 mushroom

 
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Posted 31 December 2012 - 11:55 AM

Since you have children, it would be 'nice' to know if it is, in fact, celiac (the doctors have not gotten away from biopsy being the 'gold standard' of diagnosis and they like to confirm the blood test results). Then you would know you could have the children tested, periodically, to make sure they have not developed it, and have a reasonable chance of their tests being positive if they did. It does always help to know the degree of damage, and if there is anything else going on, such as h. pylori ulcer or Crohn's or anything else, also. With positive blood work there is bound to be some damage, however microscopic, although it is also possible for biopsy to be negative.

Ultimately though, it is your decision if you have it or not, especially if the doctor is willing to give you a diagnosis without. But since he wants to do both upper and lower, he sounds like he might be old school (or thorough, or in need of the money :) ) Take your pick on that one.

So it is your decision to make, your body, your diagnosis. Best wishes in your decision-making.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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