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Negative Blood Tests


cmorrisaud

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cmorrisaud Newbie

Ok, so introductions first. My main symptoms are unexplained weight gain (80+ pounds in 8 years in spite of eating better and being more active than I ever have in my life), fatigue, constant (mild) digestive issues, and near constant anemia. In June, my previous doctor mentioned the possibility of celiacs. Unfortunately, I was literally days away from moving half way across the country (NY to the UP) and having no insurance for a while. So, I decided to wait until I was settled and see a doctor here when my insurance kicked in.

Four months later, I finally got some blood work done. This new doctor did not think it could be celiacs because I have gained weight and only have diarrhea occasionally. I did a little educating and got her to order the blood work (mainly to make me happy). She also checked my thyroid, glucose, and a cbc. Everything, including the celiac panel (Iga, Igg, EMA, Reticulin), came back normal except for my iron. Anemic again. She is now ordering some more iron tests. What impressed me, though, was that she told me I could try the gluten free diet for a few months to see if that helped. So I guess now we will see what happens.

Anyway, so far this website has been great at finding answers for my questions and suggesting things I never considered. So here is a thank you for everyone.


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angieInCA Apprentice

Trying the diet can't harm you but it may give you all the answers you will need.

I too gained weight over the past 8 years (65 lbs.) with no explanation. I eat healthy (or so I thought) exercised but continued to gain weight. This was a hard thing to swallow being I have never weighed more than 125lbs my whole life.

I have had a multitude of problems all my life including diarrhea but no Dr. had ever suspected Celiac. Back in August I started having unbelievable cramping (lying on the bathroom floor for hours till I could stand up) and explosive diarrhea, pure water with the force of a fire hose (sorry for the graphic). Dr, finally stated that she thought I might be Gluten intollerent. I went Gluten free that day and noticed immediate relief. Within 3 days I suddenly had no heartburn, no muscle cramping and I had started to lose the bloat. Within 2 weeks I lost 10 lbs and was feeling great. Then I decided to get tested. So I started eating gluten again and started getting all the terrible symptoms again. I must not have been eating enough gluten because all my tests came back negative or weak postitive. I have opted not to have the biopsy. My GI doesn't fee it is necessary due to my tremendous response to the diet he has diagnosed me as Gluten Intollerent. Since then I have had the test for DH and it has come back positive.

Like I said before, the diet can't hurt you but it can change your life.

cmorrisaud Newbie

I think the only reason she said to try the diet is because the only diet that has ever worked for me in the past was essentially gluten free. I lost 15 pounds in two weeks. Unfortunately, at the time, I could not keep up with the schedule (eating six times a day at very specific times doesn't work so well in grad school), so I quit after a couple weeks. I remember feeling better than I had in a long time with lots of energy. I am hoping to have positive results with a gluten-free diet (this time on purpose)

angieInCA Apprentice

funny you should mention the diet. I too went on a carb-free diet that was by nature pretty much gluten free about 6 years ago. I lost over 30 lbs in 8 weeks and felt fantastic. The best I had ever remembered feeling my entire life. Alas it was a diet and did not account for healthy carbs so I decided not to try it again. :rolleyes: I've been Gluten free now for about 6 weeks and I'm finally sarting to feel so much better. Weight is not melting off but I am noticing a differance.

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    • trents
      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
    • terrymouse
      Thanks for clarifying! I'll put the gluten free thing on hold then. In late december last year I suddenly started having digestive issues I never had before. My stomach started feeling tight most of the time, I got full very quickly, little to no appetite, constipation, I started to feel ill after eating - sometimes a stomach ache, sometimes nauseous, or lightheaded, or heart beating fast. Some things worse than others, I started avoiding fatty foods in general because they made me throw up . I haven't had issues with food like this before, so this is all new to me. I started losing weight because eating was such a chore. I hadn't considered it could be celiac, but my GP added it to the list of things to test for and then referred me to the GI specialist when the results came back positive. They also found a large gallstone, which was causing me pain in the pit of my stomach, so I had my gallbladder removed in march. The pain is gone but otherwise everything else, the tightness and sensitivity and lack of appetite remains an issue, and I'm still losing weight. I was around 200 lb in december, right now I'm 152 lb. 
    • trents
      @Shining My Light, I am not a doctor or a trained medical professional of any kind. However, I was a hospital chaplain for many years and sat in on countless numbers of medical team meetings with doctors and nurses discussing the medical issues of their patients as well as tests administered and interventions applied. What I can tell you is that many diseases can only be diagnosed by running a battery of tests coming at the problem from different angles. It is normal to not have all the tests give a positive confirmation for a given disease. But rather, a diagnosis is arrived at by looking at what the balance of the test results from all angles suggest. This may especially be true of autoimmune conditions. You need to also understand that the degree and number of vitamin and mineral deficiencies and symptomology depends on a number of factors. For instance: 1. How many "celiac genes" are involved? Homozygous or heterozygous? and which genes? DQ2?, DQ8? or both? 2. How long ago was the onset of the celiac disease? How long has it been acting on the body? 10 months or 10 years? That will make a huge difference. 3. How much gluten has the person been accustomed to consuming since onset of celiac disease? The more they consume, the more damage you would expect. 4. What is the age of the person? Younger people have bodies that are more resilient than older people and can fight against disease more effectively. 5. What other health conditions is their immune system being tasked to deal with? 6. What is their general state of vigor? Some people just have stronger constitutions than others.
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