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Tyvm For This Forum!
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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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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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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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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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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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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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