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Biopsy Came Back Negative

hollyd

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hollyd Apprentice
hollyd
Posted

Okay, I know this isn't a new situation on the board.

What confuses me is that even my blood work was negative except for AGA - IgG which isn't specific for celiac.

I had this done in Australia where I live, under the guidance of my doctor who is the leading researcher and doctor on celiac disease in Australia. He has trained the endoscopists in exactly where to go for biopsies and how many to take.

Yet, I have consistent diarrhea, (without getting gross, it seems like the type that is common in celiac) it took me 2.5 years of zinc supplementation at the maximum allowable amount to get my zinc level to normal, it has taken 1 yr. + 9 months to get my iron to a far from ideal level despite daily iron supplementation, I'm tired so much that I don't feel like myself, prior to my scope my doctor told me to eat 4 servings of gluten foods a day with a concentration on pasta which I did do and which made me much worse. By the last day it was crazy, much worsening diarrhea and feeling truly awful. I have never tried going gluten free until 10 days ago (after my biopsies were done). I am not noticing any improvement yet but I'm determined to give this a fair try anyway.

The only thing they've found is gastritis in my stomach which shouldn't cause any of these symptoms.

Anyone have any idea how long I should try going gluten-free? With negative blood and biopsy do you think there isn't much of a chance of it being celiac?

I have an appt. with my doctor on the 27th to see where we go from here. I just hope that going gluten-free for awhile fixes things. Is there such a thing as a non-celiac gluten intolerance that still causes malabsorption?

Any advice is appreciated! Thanks:-)

Holly

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TCA Contributor
TCA
Posted

You sound exactly like my son. The gluten-free diet took about 3 weeks to work on him, so be patient. He is thriving now. His weird tests can be explained by his young age, but I'm not sure about adults. There are many levels of gluten intolerance. The diet typically needs to be tried 3-6 mos. Hope that helps!

Since your doc is an expert, what advice did he have?

hollyd Apprentice
hollyd
Posted
  • Author
You sound exactly like my son. The gluten-free diet took about 3 weeks to work on him, so be patient. He is thriving now. His weird tests can be explained by his young age, but I'm not sure about adults. There are many levels of gluten intolerance. The diet typically needs to be tried 3-6 mos. Hope that helps!

Since your doc is an expert, what advice did he have?

Thanks TCA. My appt. with him isn't until the 27th so I'll see what he says then but on the phone he said it isn't celiac. I really have no problems being on this diet and just hoping it brings me relief.

Holly

Nancym Enthusiast
Nancym
Posted

It's hard to say how fast you'll react. I reacted within a couple of days.

jenvan Collaborator
jenvan
Posted

It really depends person to person on how quickly you will respond to the gluten-free diet if you have Celiac or gluten intolerance. Some people who need to remove gluten from their diet do have negative test results. Researchers/doctors are just now beginning to understand that there is a spectrum of gluten intolerance, which includes many different manifestations of symptoms or illness and test results. If your dietary response is positive, then stick with it. Your anemia definitely makes gluten intolerance seem more likely...however severe gastritis with bleeding is also a cause for anemia. Likewise, diarrhea is also a symptom of gastritis for some...so I would say this isn't necessarily an open and shut case. I would also look into other food intolerances in your case, starting with dairy. Also, you will need to get the gastritis under control--I have two friends with it and it does cause major bloating, nausea, gas. A good place to start with that is no caffeine, spicy foods. Did they give you meds? Hope you feel better soon!

kabowman Explorer
kabowman
Posted

My biopsy was negative too - and by a doc who is familiar with celiac disease. I didn't have blood tests because I was already gluten-free by the time I went in to the doc--which could have affected the biopsy but I doubt it.

I had several nurses/nurse practicioners (some were friends) suggest over the course of several years that maybe, my problems were not limited to just dairy and maybe, I should think about gluten intolerance.

It took me months and a month-long food diary to discover my additional food issues and it was still a while longer before I really felt good.

  • 2 weeks later...
hollyd Apprentice
hollyd
Posted
  • Author
It really depends person to person on how quickly you will respond to the gluten-free diet if you have Celiac or gluten intolerance. Some people who need to remove gluten from their diet do have negative test results. Researchers/doctors are just now beginning to understand that there is a spectrum of gluten intolerance, which includes many different manifestations of symptoms or illness and test results. If your dietary response is positive, then stick with it. Your anemia definitely makes gluten intolerance seem more likely...however severe gastritis with bleeding is also a cause for anemia. Likewise, diarrhea is also a symptom of gastritis for some...so I would say this isn't necessarily an open and shut case. I would also look into other food intolerances in your case, starting with dairy. Also, you will need to get the gastritis under control--I have two friends with it and it does cause major bloating, nausea, gas. A good place to start with that is no caffeine, spicy foods. Did they give you meds? Hope you feel better soon!

Thanks for your response. I'm still waiting for the 27th for my appt. to talk about all the results with the doc. but I think he said the gastritis was not severe and I've showed no signs of bleeding by inspection or two different occult tests. As I had a lot of difficulty getting enough zinc, until after 2+ years of supplementation as well, I'm thinking malabsorption. The more I look up gastritis the less I find diarrhea as a symptom which stumps me, unless I'm an anomaly. I seem to tolerate yogurt and cheeses in terms of not feeling any worse after eating them. But it might be time for a food journal if the doctor doesn't shed any light on this. I never ever drink any coffee, decaf or otherwise and I don't take any aspirin or nsaid's, don't smoke, drink very lightly and only occasionally eat mildly spicy food and don't feel any worse for it. I never have any pain. Thanks for your good wishes. :) If I learn anything that might be on interest to others after my doctor appt I'll definitely post it.

My biopsy was negative too - and by a doc who is familiar with celiac disease. I didn't have blood tests because I was already gluten-free by the time I went in to the doc--which could have affected the biopsy but I doubt it.

I had several nurses/nurse practicioners (some were friends) suggest over the course of several years that maybe, my problems were not limited to just dairy and maybe, I should think about gluten intolerance.

It took me months and a month-long food diary to discover my additional food issues and it was still a while longer before I really felt good.

Thanks for your input Kate. I think I'm going to be looking at that food journal after the 27th. I can say that I definitely got worse on the two weeks of 4 servings a day of highly glutenous food the doctor told me to have prior to the scope. It seems that should say something. I almost wonder if I'm not still trying to recover from that! :(

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Lynxear Rookie
Lynxear
Posted

Holly, you don't have to be Celiac to benefit from a wheat-free diet.

I am not celiac...I can eat a piece of bread and not become instantly sick as many on this site. I don't HAVE to beware of cross contamination as others do on this site.

BUT I seem to have a weird body chemistry and suffer from High Blood Pressure, Type II diabetes and blood fats so high that I have only been able to measure my HDL/LDL ratio once in 20 years (my blood has in the past been described as 10W30 motor oil).

I am also borderline narcoleptic. I have always felt there was an underlying cause for these multiple problems as diet in retrospect seems so obvious now.

I have been wheat-free for about 30 days now. Since that time my blood fats dropped by 1/3 into just higher than than high normal....I am taking no medication for this, in fact when they put me on "statins" my triglycerides got worse and I went arthritic!!! Just eliminating major sources of wheat from my diet has this POSITIVE RESULT.

I do take a new drug for diabetes now and perhaps that is helping that stabalize my blood sugar. But I take it in addition to glucophage which was my previos medication. Against my doctor's wishes I cut my dose of glucophage in half to see what would happen to my blood sugar levels and I am able to maintain an excellent blood sugar with almost 1/2 the meds

My high blood pressure (was at one time 140/100 with a pulse rate of 45-55 beats/min) is now on the low side (110/73 with a pulse rate of 70 beats per min) Actually this has become my newest problem since it makes me dizzy at this level. I take a deuretic plus Macardis for BP. I cut the dose of the deuretic in half with no change to my low bp...soon I will see what eliminating it all together will do.

I guess what I am saying here is that though I am NOT celiac. I am definately on the right path to solving my multiple health problems by eliminating wheat from my diet....and the effects of this diet change are noticable in a very short time period of 30 days. Also the longer I stay on this diet the easier it seems to become....AND THIS IS AN EXCELLENT WEBSITE for information about staying wheat-free.

tarnalberry Community Regular
tarnalberry
Posted

If you're going to give the diet a try, I would suggest being *entirely* gluten free for a MINIMUM of a month - three months would be MUCH better - and then doing a challenge with a large amount of gluten on a single day after that, keeping track of how you feel. If the results from eliminating gluten from your diet are completely and totally obvious, however, I would skip the gluten challenge at the end and simply remain gluten-free.

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