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Feedback, I Am Confused With Doctors Diagnosis

CoreySmith1200

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CoreySmith1200 Newbie
CoreySmith1200
Posted

ok so I was diagnosed with celiacs a little bit before Christmas. I tested positive for two things in a blood test. the doctor orderd me a biopsy to check that I had celiacs. I had the biopsy done mid febuary and tested negative. heres the thing, I was never told to eat gluten before the biopsy to make sure the celiacs could be seen, which is why the doctor thinks I may have celiacs regardless. but since being diagnosed I have had many incedences where I have mistakenly ate gluten. I had been eating rice crispies since the diagnosis and didn't realize they weren't gluten free untill during the super bowl on febuary 3rd. then I stopped eating them. I also had ate some cookies that I thought were gluten free that my mom made but they were in fact just regular cookies. also my cafeteria had served my the wrong food sometimes, for example I have a special breaded chicken that is gluten free, once they mixed up my breaded chicken and gave me real "breaded chicken" gluten and all and I took a bite and chewed and spit it out after I saw the chicken in the sandwitch. and tonight I just realized for the last month I have been eating wild harvest organic cookies that my mother thought were gluten free ( they were on the shelf labed organic next to the gluten free shelf and costed less than the glutino brand...) so I stopped eating those tonight. I just turned 18 years old.

 

My question is, with all the mistakenly eaton gluten and with the negative biopsy for celiacs, when in fact I believe I had been eating gluten, is it possible that I don't have celiacs? I mean in 4 months can a small intestine heal so good that you test negative for celiacs in a biopsy even when u have been eating gluten? I am also about to have a test for chrones disease done to...

 

ps. sorry for the spelling and stuff, I had to rewrite this whole thing because the page froze...

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txgal748 Apprentice
txgal748
Posted

Corey,

 

It is my understanding that if the biopsy is not from the right location it will show up as negative.  Ask your Mom to ask the Dr. to do a DNA test for celiac, this is much more accurate.

nvsmom Community Regular
nvsmom
Posted

I've heard many stories about negative biopsies after positive test results. It seems to be fairly well accepted that in those circumstances what has probably happened is that the doctors missed patchy intestinal damage. There is a LOT of surface area in the intestines and I'm surprised they don't miss the damage areas more often.

 

Good luck with your Crohn's testing. I hope you are okay.

mushroom Proficient
mushroom
Posted

Sometimes the biopsy results depend upon luck in selecting the right spot(s).  Damage is not visible to the naked eye unless it is far advanced.  Also, the GI needs to take a sufficient number of samples - 6 is usually recommended - to give a greater chance of hitting the right spot.  Which of your blood tests were positive?    Some are more specific for celiac than others.

 

Regardless, if gluten is a problem for you, you should eat gluten free anyway.  Non-celiac gluten sensitivity is finally being recognized by the medical community as a disese in its own right.  So don't let the negative biopsy sway you away from eating gluten free.  Some of us just have to do it regardless.  Research has only just really got under way to explore the ramifications of non-celiac gluten sensitivity and to attempt to develop a test for it.

 

To address your specific question, could you still be celiac with positive blood work and a negative biopsy while you were still unknowingly ingesting some gluten?  When we first start the diet, we are never perfect.  There are always things we discover to have gluten that we were unaware of, for some of us more than for others.  While it is true that you must be 100% gluten free if you expect to heal from celiac damage, some healing can nevertheless take place with random gluten exposure.  But I think the chances are that it was missed or not enough samples taken.  If you were positive on only one blood test, maybe questionable... positive on two (depending on which ones) not likely.

 

Let us know how your testing for Crohn's goes. :)

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      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.
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      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. 
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      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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