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Member Since 24 Oct 2013
Offline Last Active Oct 28 2013 12:11 PM

Posts I've Made

In Topic: Anemia, Gi Symptoms, Negative Antibodies

28 October 2013 - 12:11 PM

I've successfully made it through my first day w/o gluten. As far as the iron infusions are concerned, in what time frame did you have all of them? Were your ferritin levels checked after each infusion? I had one, waited two weeks and had a second. When they tested my ferritin, it was well above the minimum. Then, it appeared to have bottomed out. As far as the lethargy is concerned, I didn't really feel better once my ferritin was elevated. I am curious to know what your experience was with it and how they monitored it.

I had 7 iron infusions over 7 weeks.  They will check my bloodwork 5 weeks after my last infusion. 

In Topic: Anemia, Gi Symptoms, Negative Antibodies

25 October 2013 - 09:44 AM

get a copy of ALL testing, would be curious if they did a complete panel.

Thanks. That's is probably a good point.  I think they did DQA.  I will check. 

In Topic: Anemia, Gi Symptoms, Negative Antibodies

25 October 2013 - 08:04 AM

I'm looking for answers myself and stumbled upon your post. I could have written your post myself. I had done minimal research trying to figure out my problem and deduced it was probably diet related. I, however, have poor self control and not enough time and energy to eat the way I know I should be eating. Let me start at the beginning. I started having issues with reflux, indigestion, constipation, etc. when I was 19 (I am now 28). I went to a GI doctor and went through a battery of tests. I had an upper endoscopy showing severe chronic gastritis. He wanted me to go a month without gluten or dairy. I half assed a couple weeks and never followed through. I did a barium swallow, which I believe was checking for Crohns and everything came back normal. He wanted me to have a colonoscopy. I declined as I'm sure most 19-year-olds would. He said IBS. Increase your fiber, take metamucil, take these PPIs (which could cause you to end up with stomach cancer). I improved for a bit, but fell back into old eating habits shorter thereafter. Fast forward 8 years after a lapse in health insurance. PCP does labs showing that my Ferritin is so low it cannot even be detected (<1) and my hemoglobin is also low. I go to a hemotologist for two iron infusions. Iron dropped down to >10 within 6 months. I can't stomach (pun intended) the iron supplements, so I've given up on that for the time being. I go see a new GI doc who has me do another upper endo. Guess what they found! Chronic gastritis. Worse she's seen in someone my age she says. Tissue is so inflamed the scope tore the lining of my stomach. She wanted to have another done two months later to make sure the tear healed. Least of my worries. This time I consented to a colonoscopy. Only finding was grade 2 internal hemorrhoids due to the constipation. Usually, they do not bother me. Next, she did a pill cam to look at the rest of my GI tract. Finding from that was duodenitits. All of the biopsies came back negative. Celiac panel came back negative. She, my second GI doctor, said IBS, here take these PPIs. Last year about this time I decided to try to clean up my diet. I stopped eating refined sugar, processed foods and gluten. This lasted 3 weeks. The bloating in my stomach was gone, my bowel movements were regular. Everything on the GI front was solid. I felt horrible. Headaches and fatigue so bad I gave up. This, from the research I've done, is due to my body's addiction to sugar and a possible yeast over growth. I had no idea until scouring the internet today that there was a possible link between iron deficiency anemia and celiac. Also, I did not know that false negatives for the celiac panel and biopsies were so prevalent. These healthcare professionals have failed me along with what appears to be a lot of other people.  I am so tired of not having answers. I'm tired of being told to mask the problem when what I need to do is heal my stomach. It's not normal for any area of our body to be inflamed and our stomach is, unfortunately, not an area that can be avoided. I'm tired of not being able to drink a flipping cup of coffee without feeling nauseated. The similarity in our issues has renewed my resolve to try nixing the gluten again. I'm not sure if this was of any help, but thanks for reading. (I know it was a lot)

Yeah I would try gluten free. I really have had minimal issues since the diet chnage. As I mentioned before my symptoms were daily and severe.  I am 29, so it seems that we are had the same issues at the same age.  Good luck to you.  BTW, i had 7 iron infusions to normalize, so 2 probably wasn't near enough.

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