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Momma Bear

Member Since 29 Aug 2012
Offline Last Active Private
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Topics I've Started

Had My Endoscopy- So Confused

28 September 2012 - 01:12 PM

Hello all. A little recap to my story- went to a new doctor last month, mentioned I stopped eating gluten a few months prior. He ran bloodwork (assuming it would show nothing) and was surprised to find really high antibody levels (endomysial, gliadins) as well as B12 deficiencies and almost non detectable levels of vitamin D. He told me point blank I had celiac and to eliminate all gluten from our home, but wanted me to have an endoscopy to assess the damage and evaluate my esophagus.

I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?

Abdominal Pain

05 September 2012 - 04:02 AM

I realize that with celiac comes lots of abdominal discomfort but I was curious if anyone has areas that always hurt, not just occasionally. I have two sore spots that always ache and if you put pressure on them, it's painful! My first one is near my belly button on my right side (I have a long, thin stomach according to a tech who did a barium swallow years ago, so I assume this would be near the beginning of my small intestines). The other is my lower right abdomen, near my ovary. I assumed it could be an ovarian cyst, though I've never had one, but now I wonder if it's from the celiac I've had for my entire life without knowing until recently! Does this sound typical? Anyone else here have any aches and pains that never go away? Also, did you get any answers as to what they were? I go for my scope in a few weeks, so hopefully I can start to get some answers but I know it's not going to help with the sore spot on my lower abdomen. FYI, I was diagnosed via blood test (really high anti gliadin and anti endomysial antibody levels, low vitamin D and B12... I also have DH on my scalp). II have no idea what to expect with the scope!

Having Endoscopy In A Few Weeks

03 September 2012 - 10:09 AM

Hello. I posted my intro and story already but to recap, I was diagnosed with celiac a couple of weeks ago after presumably having it since childhood (I am 32). My doctor said I had it based on anti gliadin and anti endomysial results (he said they were really elevated but I didn't see the results, so I have no idea what he gauges as 'really elevated'). He wants me to have an endoscopy to see if I have damage, take some biopsies, and evaluate my espophogus because of some reflux issues i have. I have been gluten free for at least four months prior to my diagnosis, but since the diagnosis, we have been super strict and removed it completely from our home and no longer eat out at all. My question is, do I need to go back on gluten for the biopsy? My doctor told me he wanted me on a whole foods diet and no eating out, as well as eliminate all personal care products with gluten (I possibly have DH on the back of my scalp), so without intentionally eating gluten, it's unlikely I will get any in my system. He didn't say anything about needing it in my system prior to the endoscopy. Any thoughts??

Devastated, Angry, Frustrated...

30 August 2012 - 06:51 PM

Two weeks ago my life was turned upside down with a follow up doctor's appointment. I initially went to my doctor for a long overdue check up (I have Behcets disease and while I normally just deal with the symptoms, I thought I should get evaluated for some shortness of breath). I happened to mention that I eat gluten free (for about the last four months) because it significantly reduced my IBS. He decided to run a celiac panel, though he wasn't so sure it would show anything. Fast foward a few days and I received a call saying I needed to come in to go over my lab results. I was told that my bloodwork said I not only had celiac but I was one of the worst cases he has ever seen and he suspects significant intestinal damage (said my anti gliadin, anti endomysiol levels were really high, though I didn't see the results). I was informed that my vitamin B12 was very low as well as my vitamin D. I am having a biopsy in a few weeks. To compound all this, my doctor also suspects I may have Ankylosing Spondylitis (I have arthritis in my spine that is steadily getting worse as well as testing positive for the HLA-B27 gene). He also threw out the scary lymphoma word...why??

I am struggling with this because in looking back (I am 32), I can see how painfully obvious this diagnosis is and that it is very likely I have had this since I was a young child. Let me just say, my childhood was miserable and I spent a good chunk of it being poked and prodded trying to find out what was wrong with me (they initially thought Crohns or inflammatory bowel - both ruled out). I should also mention that I suspect I have DH as well since I have a scaly nasty rash on my scalp. The itch is so intense and the sores weep so that my hair looks greasy when it's flaring up. It has slowly taken over the entire back of my head. Again, I am angry because it's something I've dealt with since childhood and no doctor has ever given it a second thought. I have also had this dull ache next to my belly button for over a year - assuming it was maybe a hernia...now, who knows! I have never felt good a day in my life and i have gotten so used to being sick that it became my normal.

How do you deal with all of this? I am a mom of young children and I feel like I am falling apart at the seams right now. I have a strong faith in God and I trust that He has a plan for me....it's just not the plan I was hoping for. Do you ever get over the devastation and settle into a new normal? I just don't know what to expect.

If you made it all the way through this rant, thank you.