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Do You Have Pos Blood & Neg Biopsy?


GEF

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GEF Explorer

... and I'm assuming they expect you to throw the blood tests in the trash...

Gretchen

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A normal small bowel biopsy rules out celiac sprue, a true malabsorption state in which intestinal cells are visibly damaged, but it does not rule out gluten sensitivity. Although asymptomatic people with gluten sensitivity may have normal or near-normal biopsies, so also may people with symptomatic gluten sensitivity. This has been reported in the medical literature called "Gluten Sensitivity with minimal Enteropathy" or "Gluten-Sensitive Diarrhea without Celiac Disease". Even though such people's intestines appear normal under the microscope, up to one half already have nutrient malabsorption, a major contributor to osteoporosis and malnutrition, leading to the conclusion that microscopic analysis of intestinal biopsies is an insensitive way of assessing immunologic food sensitivity. However, because there is still a virtually universal reliance on small bowel biopsies to diagnose gluten intolerance, most asymptomatic or symptomatic gluten sensitive people are told they do not have a diagnosis of celiac sprue, and are given no recommendations to modify their diets.


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gf4life Enthusiast

Gretchen,

That is a great article, thanks for putting it here. It is exactly this reason why I like Dr. Fine's Enterolab tests. They pick up gluten sensitivity, where it is usually missed in the Celiac bloodtests and biopsy, yet still needs a gluten-free diet for optimum health.

Dwight Senne Rookie

Hmmmmm, that is a very interesting article. Seems to offer an explanation for all these negative biopsy results. He raises a good point in that even after a negative biopsy, it may be worthwhile to go on the diet to see if symptoms improve.

CarolynM Newbie

This is exactly where my daughter is right now! Positive antigliadin, negative biopsy but consistent symptoms that I tracked along with her diet and found the connection to wheat! That is why they did the blood tests; I almost feel like the doctor doesn't acknowledge the possibility that she is still at the least gluten-sensitive because it wasn't his "idea". He never mentioned there could be anything "in-between" - he basically told me either you have celiac disease or wheat is the greatest thing on earth for you. We got results from the biopsy a month ago; I wanted to believe the results but still see the correlation with wheat in her diet. We have just returned from a fun but messy and stinky vacation and are going gluten-free tomorrow - wish us luck! She is nearly 3 and loves wheat products.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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