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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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