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Ok, Now I Am Wondering.....

glutenfreeinminnesota

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glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

I had an Endoscopy the beginning of Nov. I was diagnosed Nov. 5th 2009, and have been gluten free since Nov. 8th 2009. I believe the last time I accidently consumed gluten was around the beginning of December. I have been really good and really careful NOT to get cross contaminated or get glutened since then. Now to my question, my GI told me to get my blood tested Jan or Feb to see how the gluten free diet was working for me. So I went in the last couple days and got my blood tested for anemia (have been dealing with that for ten years) and the celiac tests....well it came back that my iron was still very low and the celiac testing came back negative. Is it possible to already come back negative? Or could my endoscopy and biopsy been wrong?? Maybe this is a silly question, and regardless I do feel SO much better being on a gluten free diet, but is it possible I don't have celiacs? How accurate is the endoscopy/biopsy? I believe I have it, and the GI who did the test was positive that was it...but I was surprised to see the celiac disease tests come back negative so quickly, and the iron levels have still not improved...I hope someone can put my mind at ease??

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mushroom Proficient
mushroom
Posted

I had an Endoscopy the beginning of Nov. I was diagnosed Nov. 5th 2009, and have been gluten free since Nov. 8th 2009. I believe the last time I accidently consumed gluten was around the beginning of December. I have been really good and really careful NOT to get cross contaminated or get glutened since then. Now to my question, my GI told me to get my blood tested Jan or Feb to see how the gluten free diet was working for me. So I went in the last couple days and got my blood tested for anemia (have been dealing with that for ten years) and the celiac tests....well it came back that my iron was still very low and the celiac testing came back negative. Is it possible to already come back negative? Or could my endoscopy and biopsy been wrong?? Maybe this is a silly question, and regardless I do feel SO much better being on a gluten free diet, but is it possible I don't have celiacs? How accurate is the endoscopy/biopsy? I believe I have it, and the GI who did the test was positive that was it...but I was surprised to see the celiac disease tests come back negative so quickly, and the iron levels have still not improved...I hope someone can put my mind at ease??

This is not actually surprising. The antibodies can leave the bloodstream quite quickly once you remove the gluten. If you tested positive, you were positive; most of us would give our eye teeth for a positive test, but we are "merely" gluten intolerant. As for the continuing low iron test, this is not at all surprising. It takes a long time for the small intestine to heal and start functioning properly. In the meantime, you are going to need iron supplementation to help your body out for an indefinite period of time. Have you had your Vit. D, B12, folate, K and E levels checked, also magnesium, potassium and calcium and zinc levels checked, because these could also be low. Also, you need your thyroid tested, at least free T3, free T4, and TSH. If any of these levels are "low" normal or below normal, or if your TSH is "high" normal, you will probably need some supplementation to get your system back into whack.

Congratulations on eliminating the gluten successfully; :D now get the rest of your body functioning correctly.

ravenwoodglass Mentor
ravenwoodglass
Posted

The blood tests can go negative pretty quickly once we are gluten-free. One of the reasons why it is stressed that folks need to be on a full gluten diet when being tested. You are doing a great job, keep it up.

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted
  • Author

Ok thank you!! I figured that would be the answer, and like I said the gluten free diet is making me feel SO much better, better then I have felt for years! So it's pretty obvious, I just didn't realize I was doing that good of a job :)I am still coping and I have moments of denial apparently :P Thanks again! And I will definately get on some iron supplements and probably a every day vitamin seeing as I take nothing right now. I am on the way to taking better care of myself :)

momofk&n Newbie
momofk&n
Posted

Congrats on feeling better. The iron may take a while to come up. When regular iron supplements were not improving my levels my doc put me on Repliva 21/7 tablets. It is a prescription iron supplement that contains iron in three forms, allowing for better absorption. You take the actual pill for 21 days and then there is a placebo for 7 days, like birth control pills. It was the only thing that helped to bring my iron into check at the beginning, I was around 6-8 in my levels. Now I don't need it as my system has had a chance to heal. Might be worth talking to your doctor about if the over the counter iron supplements do not work.

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted
  • Author

Congrats on feeling better. The iron may take a while to come up. When regular iron supplements were not improving my levels my doc put me on Repliva 21/7 tablets. It is a prescription iron supplement that contains iron in three forms, allowing for better absorption. You take the actual pill for 21 days and then there is a placebo for 7 days, like birth control pills. It was the only thing that helped to bring my iron into check at the beginning, I was around 6-8 in my levels. Now I don't need it as my system has had a chance to heal. Might be worth talking to your doctor about if the over the counter iron supplements do not work.

I will have to bring that up to her! I am taking the iron pills, but they upset my stomach. I even take the kind thats supposed to be easier on your bowels :\. They have always made me feel this way, which is why I stopped taking them years ago. But, I am trying to deal with it...until I can get in to talk with my doc. Thanks for the advice!

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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