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Should I Wait For Results?


msb11

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msb11 Newbie

Hi...I am obviously new here...I just had a blood test yesterday (so did my 6 year old daughter). My question is whether or not we should wait for positive results to go gluten free (knowing that we may have to do biopsies). Here is a little background on us:

-My daughter, who is 6 now, was diagnosed with severe GERD at 6 weeks and was medicated until 12 months. She has always had problems with constipation which we usually manage with Miralax. Recently we went through an 8 week phase where she wasn't eating because she would instantly have diarrhea or the feeling of needing to vomit when she ate. She also vomits way more often than any of her friends. And, she has recently been referred to a play therapist to help us learn to deal with her anxiety issues (also because we were worried about possible anorexia issues). The phase of not eating has come to an end after being treated two different ways for a never confirmed parasite (I have since read that the treatment could temporarily mask Celiacs GI symptoms. She had a Celiac's panel blood test yesterday (9-28-10).

-Now for me...recently my hair has began falling out in handfuls in the shower. My hair has slowly been thinning for a few years now and I have had all the normal tests (thyroid, hormones) come back negative. But, in June it began falling out at an alarming rate. My doctor ran all the same tests again and switched my BCP, all came back negative. She then referred me to a dermatologist who did a skin biopsy to test for Lupus, which also came back negative. While waiting for those results I researched Lupus and was convinced I had it based on so many symptoms I thought were unrelated. When I blogged about my frustration at not having Lupus (crazy I know, but I wanted an answer), a friend suggested I get tested for Celiacs. I am convinced I am at least gluten intolerant. Here are my symptoms:

-severe anxiety leading to depression since childhood (have been medicated almost continually since 2003)

-something I have always called "a nervous stomach" (diarrhea, especially when stressed out)

-unexplained swelling of hands and feet (was even sent to Children's Hospital when I was 13 with no real answers...was told may be beginning of Rheumatoid Arthritis)

-unexplained HUGE bruises on my legs with no trauma

-Chronic fatigue (I can sleep 10 hours a night and still need a nap in the afternoon and fall asleep on the couch by 9pm)

-hair falling out

-just always feeling down and achy...it hurts to have my husband hug me too tight

Add to this that my mom has sjogrens, fibromyalgia, numerous issues with her reproductive system, blood clotting disorder (I have asked her to get tested!).

I just think it fits...any advice? Should I wait for results or just eliminate gluten today? Thanks.


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Dixiebell Contributor

Hi! Welcome. You should continue to eat gluten if you want an endo. I think your daughter for sure needs to have the endoscopy to rule in or out other problems. As soon as the endo is done you can go gluten free. Have you and your daughter had your vitamin levels checked? If not, you should do that too.

msb11 Newbie

Hi! Welcome. You should continue to eat gluten if you want an endo. I think your daughter for sure needs to have the endoscopy to rule in or out other problems. As soon as the endo is done you can go gluten free. Have you and your daughter had your vitamin levels checked? If not, you should do that too.

I don't think that either one of us has had vitamin levels checked. I am actually the one who requested that our doctors test us for celiacs. Neither of our doctors even brought it up as a possibility.

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