Biopsy Negative, Now What?

[enolah]

I could use some help.

My 17 y.o. dd just had her endoscopy with biopsies of the duodenum. The pathologist says she has "normal villous architecture and no inflammatory cells." About 2 years ago her endomysial IgA was negative (with normal total IgA).

Her symptoms are diarrhea, cramping, weight loss (now stable), and nausea. The only test that has come back abnormal, twice, is her fecal fat. It was not a 72 hour collection, however, it was just 2 random samples both showing abnormally high amounts of fat. Oh, and we did the genetic test through Prometheus and she was a DQ8 heterozygote.

Several months ago, she did try 6 weeks on a gluten and dairy free diet. She thinks it helped to a small degree, but definitely didn't take away all her symptoms. She was back on a regular diet for almost 3 months before her endoscopy.

Of course we don't want her to have celiac, but it's frustrating to have no diagnosis. Her GI doc now plans to do a colonoscopy to check for microscopic colitis.

She may try gluten and dairy free again, but feels like "what's the use." She would have wholeheartedly embraced that diet if her biopsy had come back positive. It will be very hard for her to willingly subject herself to the inconvenience especially since go away to college is coming up for her.

Of course, I've heard all the stories of folks who diagnose themselves with gluten sensitivity or celiac based on response to the diet alone, but since she didn't have an impressive response to the diet, we feel stuck. I may ask her GI doc to order a 72 hour fecal fat to see if it's still abnormal. Maybe she has pancreatic insufficiency for some reason.

Comments?

[Dixiebell]

I think she should try gluten free, at the very least, for three months. The six weeks may not have been long enough. She said it helped a little, that's good, she may have started to heal. Everyone heals at different rates and she may just take a little longer. Was she cheating? Does she have other intolerances? I have read that it takes some a year or longer to heal, it just depends on the damage.

[Katie B]

I believe that damage to the intestines can be patchy so in that case I think that some biopsies can turn out negative. If she suffers from other intolerances (as Dixiebell mentioned) then this might contribute to her symptoms as well. This includes fructose malabsorption, lactose intolerance, intolerances to soy, eggs, nuts etc. Some people with celiac disease have refractory celiac disease due to small intestinal bacterial overgrowth. I've been on the low FODMAP diet for this and it's been working really well. It's not gluten-free (I've had to modify it accordingly) but there is enough variety and it eliminates/limits foods that would ferment in your small intestines.

There's also the RAPH elimination diet to test for food chemical sensitivities.

It can get quite complicated and consulting a registered dietician (especially a good one who is familiar with all of this) is useful. It's difficult to start an elimination diet and if you're not getting enough nutrients/calories it's hard on your health.

I can recommend a product that has saved me and has kept some weight on - it's called Vivonex T.E.N. It's pricey and doesn't taste good (I don't use the artificial sweetener that comes with it as these are huge culprits for intestinal distress) but it contains all of the nutrients that you need and is absorbed quickly in the small intestine. I'm sure most people wouldn't be interested in this but desperate times...I just found that losing weight and malnutrition were super hard on my body including bone density and I'm sure in a million ways I've yet to find out.

If you have any questions about the diet I'm on send me an email through my account!

[ravenwoodglass]

Encourage her to try the diet for 3 months or so strictly. It is a good idea to also eliminate dairy at least at first. We have a lot of small intestine and if the doctor only biopsied in that one spot damage could have easily been missed.

[Kay DH]

My biopsy and celiac panel blood tests were also negative. My GI/mood/brain fog/joint/muscle symptoms started a year ago, after getting the flu. Only positive test I had was for the HLA-DQ8 genetic marker. So, I had to go gluten-free because my symptoms on eating even trace amounts of the nasty compound molecule are quite marked. Other people are not as sensitive. I have gotten sick from foods marked "gluten free", either because of the "processed in a plant that also processes wheat..." or just that it is hard to keep some gluten out of many flours. Unless she was very diligent about her diet, it is likely she was getting some cc. One of the tests to see if going gluten-free, and dairy free, is to be very strict on the diet for a number of weeks, and then reintroduce the offending substances. I assume she has been tested for allergies (all mine came up negative), and the poop test should determine if there are normal GI bacteria and no pathogens. Even if a person has celiac or gluten intolerance/sensitivity there can be other factors that slow recovery, such as pathogens in the GI tract.

[enolah]

My biopsy and celiac panel blood tests were also negative. My GI/mood/brain fog/joint/muscle symptoms started a year ago, after getting the flu. Only positive test I had was for the HLA-DQ8 genetic marker. So, I had to go gluten-free because my symptoms on eating even trace amounts of the nasty compound molecule are quite marked. Other people are not as sensitive. I have gotten sick from foods marked "gluten free", either because of the "processed in a plant that also processes wheat..." or just that it is hard to keep some gluten out of many flours. Unless she was very diligent about her diet, it is likely she was getting some cc. One of the tests to see if going gluten-free, and dairy free, is to be very strict on the diet for a number of weeks, and then reintroduce the offending substances. I assume she has been tested for allergies (all mine came up negative), and the poop test should determine if there are normal GI bacteria and no pathogens. Even if a person has celiac or gluten intolerance/sensitivity there can be other factors that slow recovery, such as pathogens in the GI tract.

She was not cheating at all. In fact, she is willing to do just about anything to feel better. During her last trial on gluten free/dairy free diet, I was not using separate cooking utensils. I am however, meticulous with cleaning and always ran the utensils through the high temp/sanitizing cycles in the dishwasher. She never shared the toaster, condiments, margarine or anything else a knife could have contaminated. My concern is that maybe we're barking up the wrong tree. Maybe we put our "hopes" in the fact that a gluten/dairy free diet would help her and maybe she has something else entirely.

We are going to try to convince her to give another valiant effort on the diet. Again, if we just had some objective test that came back positive, it would be so much easier.

[Dixiebell]

During her last trial on gluten free/dairy free diet, I was not using separate cooking utensils. I am however, meticulous with cleaning and always ran the utensils through the high temp/sanitizing cycles in the dishwasher. She never shared the toaster, condiments, margarine or anything else a knife could have contaminated.

That could have been the problem. Different people have different levels of cross contamination that they can handle. Unfortunately, I don't think you can sanitize gluten. Someone before has posted the temp. needed to burn it off.

Wood, plastic, scratched non-stick can all get gluten stuck in them. Stainless steel, glass, new wood and plastic would be fine.

[ravenwoodglass]

She was not cheating at all. In fact, she is willing to do just about anything to feel better. During her last trial on gluten free/dairy free diet, I was not using separate cooking utensils. I am however, meticulous with cleaning and always ran the utensils through the high temp/sanitizing cycles in the dishwasher. She never shared the toaster, condiments, margarine or anything else a knife could have contaminated. My concern is that maybe we're barking up the wrong tree. Maybe we put our "hopes" in the fact that a gluten/dairy free diet would help her and maybe she has something else entirely.

We are going to try to convince her to give another valiant effort on the diet. Again, if we just had some objective test that came back positive, it would be so much easier.

There is nothing wrong with looking for other issues while she is on the diet trial. Being gluten free will not effect the testing for other problems.

[cassP]

there are lots of reasons why she may not have felt completely better going gluten free. Dairy usually is the main culprit when people still have the "D". for me- excess Fructose puts me in more pain than Gluten... and if i overdo the salad greens- i can get some "D".

other things that give me intestinal gurgles & D- any of those fake fats & corn byproducts like Malitol, and Sorbitol. i feel so much better- now that i have GREATLY reduced my gum intake!!

and for many others on here- any kind of "gluten free" product or flour may have too much trace amounts or cc ...

imho- fatty stools only suggest Celiac or Gallbladder issues...??? but idk

false negatives are common

[enolah]

there are lots of reasons why she may not have felt completely better going gluten free. Dairy usually is the main culprit when people still have the "D". for me- excess Fructose puts me in more pain than Gluten... and if i overdo the salad greens- i can get some "D".

other things that give me intestinal gurgles & D- any of those fake fats & corn byproducts like Malitol, and Sorbitol. i feel so much better- now that i have GREATLY reduced my gum intake!!

and for many others on here- any kind of "gluten free" product or flour may have too much trace amounts or cc ...

imho- fatty stools only suggest Celiac or Gallbladder issues...??? but idk

false negatives are common

Her GI doc says she may still have gluten sensitivity if not celiac. She still wants to do a few more tests for other things. In the meantime, dd has decided to give at least a good three month effort on gluten and dairy free diet--no school lunches, no eating out, and a few new kitchen tools to try to avoid the risk of cc.