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Postive Biopsy Negative Bloodtest

JessieFree

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JessieFree Apprentice
JessieFree
Posted

My blood test was negative the biopsy was positive I've been gluten-free for 2 weeks I thought i was feeling better but then out of no where the bloating and cramps started all over again (the gas never went way, but leg cramps have stopped). I can't think of anything I could have had with gluten I'm starting to think it must be something else my GI wants me to go gluten-free for 3 months before he will rule this out and do more tests. I don't have D just C sometimes no certain food seems to trigger my symptoms it just comes and goes. Does this sound like celiac, what about IBS? I'm so confused!

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dally099 Contributor
dally099
Posted

hi there, negative blood work is really common, but a positive biopsy means you have celiac, no and if or buts about it!! make sure that none of your vitamins or medication you are taking have gluten, not to mention your food and beverages, and cross contamination is a huge factor, so you need your own toaster and bakeware. also sometimes you can have other food intolerances, i myself have soy allergy and have to use lactaid for dairy. this could be due to damage in your intestines. i know there are lots of people on this site that can help you.

JessieFree Apprentice
JessieFree
Posted
  • Author

Thanks for your input I just talked to my GI now he says to go off the gluten-free diet because the bloodwork was negative even though the biopsy was positive. This isn't what he said before but I guess he changed his mind since I'm not improving now he wants me to stay off the dairy and try another medication. I'm fed up and ready to look for another doctor

hi there, negative blood work is really common, but a positive biopsy means you have celiac, no and if or buts about it!! make sure that none of your vitamins or medication you are taking have gluten, not to mention your food and beverages, and cross contamination is a huge factor, so you need your own toaster and bakeware. also sometimes you can have other food intolerances, i myself have soy allergy and have to use lactaid for dairy. this could be due to damage in your intestines. i know there are lots of people on this site that can help you.
Michi8 Contributor
Michi8
Posted
Thanks for your input I just talked to my GI now he says to go off the gluten-free diet because the bloodwork was negative even though the biopsy was positive. This isn't what he said before but I guess he changed his mind since I'm not improving now he wants me to stay off the dairy and try another medication. I'm fed up and ready to look for another doctor

With a positive biopsy you are celiac. You must be 100% gluten free. Eliminating dairy may be helpful as well, as you heal you may find that you're able to eventually tolerate dairy again. You may also be sensitive to other foods too. May be worth keeping a food diary to help figure it out.

Having you done any reading on celiac? You may want to check out "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green. It's a very informative book with current info. :)

Michelle

Nancym Enthusiast
Nancym
Posted

Whoa! Find a new doctor, yours is untrained or misinformed. It's fairly frequent to have negative blood, postitive endoscopy, especially (30%) in people without total villious atrophy.

2kids4me Contributor
2kids4me
Posted

My daughter had inconclusive blood test but positve biopsy. GI said definite celiac, even explained that is why he did the biopsy - because she was symptomatic. The biopsy was diagnostic.

As for symptoms, the intestine takes months to heal...and good suggestion re: dairy - it can be diffcult to digest in many celiacs.

Both my children are celiac and they both had "remission" followed by symptoms for the first 3 months - GI even forewarned us about that and said: as the intestine heals, the body readjusts and is absorbing different. Plus all the "loose enzymes" that were absorbed through the leaky gut have to be eliminated from the body. We were told to be patient and that it could take 2 - 6 months.

Think of it this way: when you get a road rash on your knee from landing on gravel - it feels bad initially, then not so bad, and then as the new tender skin has replaced the damaged skin.....its sensitive to touch and more easily damaged until it heals totally. The intestine is no different -it is layers of epithelial cells regenerating and takes time to be "normal".

The symptoms you are experiencing doesnt mean you are not celiac.... the biopsy says you are!

They may be related to dairy or simply the early stages of a healing gut. Your small intestine is several feet long - thats a lot of regeneration. :blink:

Hope this helps. 2 weeks is just barely time for the villi to have started regenerating - damaged intestine has trouble with lots of foods of any source, even too much watermelon can do it. In other words, even totally gluten free - you will get GI symptoms in the early part of the diet. Plus your body is adjusting to a different variety of foods on top of healing.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

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    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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