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WCeline

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WCeline Newbie
WCeline
Posted

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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Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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

julissa Explorer
julissa
Posted

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.

WCeline Newbie
WCeline
Posted
  • Author

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.

mushroom Proficient
mushroom
Posted

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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