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Test Results Are In.

sherrylynn

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sherrylynn Contributor
sherrylynn
Posted

Ok, the results for my endo are in and my small bowel biopsy is normal. I have no ulcers anywhere,although I still have blood in my stool. So if both my blood test and biopsy are negative that means what. Could I still have celiac or is this all in my head. I don't have diarrhea all the time and I can eat bread and not react all the time but then again when I do I end up having an accident and it is usually when I am out shopping or in my car. I am lactose intolerant and have leg pain and brain fog as well as the cramping in my gut and pain in my abdomen. So I don't understand how the tests came back normal.

The nurse told me the doc only took 2 biopsy's from my small bowel so could that be why it is normal he didn't get to the damage or is there even any damage. I am beginning to feel like I really am a hypochondriac.

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GottaSki Mentor
GottaSki
Posted

Both blood and biopsy can be negative. Two samples is not very many. My Celiac GI takes 6, some say 3 is enough. Regardless, if you have symptoms that led you to Celiac testing, it seems the next step is to completely remove gluten for at least three months.

If it turns out you improve on gluten-free trial, you have your answer - don't eat gluten. All of my kids/grands tested negative, yet had improved symptoms gluten-free.

I know it can be very frustrating - the "normal"/negative medical testing system can make anyone feel like a hypochondriac - don't let it get you down, trial removing gluten - keep asking questions until you find your answers.

Mom-of-Two Contributor
Mom-of-Two
Posted

Two biopsies is not enough!! It is baffling that a GI would only take two biopsies when looking for celiac! I would NOT consider this biopsy to be valuable in your diagnosis. I was diagnosed with biopsy that she had taken 6+ samples, when my 8 year old had her scope done, they took a total of 8 samples.

Did you say you had celiac blood work?

If your testing is complete, go for the gluten free diet----- if you have relief, you may have your own "diagnosis". That is where we are with our oldest child, she has positive blood work for celiac but normal biopsy so doc won't diagnose her, we are not taking her totally gluten free to get our own answers :) sometimes you have to rely on yourself and your own experience!

MitziG Enthusiast
MitziG
Posted

Please realize that you can have a serious problem with gluten that ISN'T celiac disease! If it makes you sick- don't eat it! You don't need to have a drs permission to feel better.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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