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Biopsy Negative....now What?

alexsami

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alexsami Contributor
alexsami
Posted

OK, so i had the elevated gliadin antibody with the blood work....endoscopy showed nothing...i was convinced i had celiac diesease....now what? am i gluten intolerant? do I have "some" gluten?? I am so confused.....i went gluten free for a month....then ONE week eating gluten before biopsy.....anyone???????

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frieze Community Regular
frieze
Posted

The testing (biopsy) was not properly done. Can't be gluten free that long and expect an accurate result of gluten eating status. so the results are not trustworthy. Either get it redone after eating gluten in "normal" amounts for at least 3 months, or simply try the diet for at least as long.

alexsami Contributor
alexsami
Posted
  • Author

The testing (biopsy) was not properly done. Can't be gluten free that long and expect an accurate result of gluten eating status. so the results are not trustworthy. Either get it redone after eating gluten in "normal" amounts for at least 3 months, or simply try the diet for at least as long.

why do doctors say villi damage will still be there whether you have been gluten free or not...it is so frustrating....shouldnt they know???? i was eating gluten all the time when blood work came back slightly elevated...equivocal range....and then i went gluten free for the MONTH and then one week of gluten before endoscopy.....its crazy!! why would the gliadin antibody be elevated.....clearly there is some sort of gluten issue going on...thanks for your help

UKGail Rookie
UKGail
Posted

I tested recently negative to the celiac panel blood tests and a couple of years ago to biopsy. However my family history (half of my Mother's family are celiacs) and symptoms, which are responding to the gluten free diet was enough to convince my rheumatologist of the diagnosis. He is a lupus specialist who is used to diagnosing lupus and similar autoimmune disorders on the basis of symptoms which are not always reflected in the blood test results, and was willing to accept that celiac disease may also present in atypical ways. Not all doctors will do this.

Also biopsies do not always find the damaged areas, which may be patchy, or the damage may be further down than they usually look with the endoscope. Doctors also dispute amongst themselves what level of mucosal damage qualifies for celiac disease.

There are also medically proven neurological forms of gluten sensitivity, which, in may cases, do not cause any damage at all to the digestive system. If you search the internet for "from gut to brain by M Hadjivassilou" you can see more details. He is a well-known neurologist based in a celiac centre in the UK. The whole article is payment protected, but a non-printable slide show version is available to read.

I would therefore not be too disheartened about a failed biopsy, and consider whether to judge your tentative diagnosis on whether you respond to the gluten free diet or not.

If I sound a little cross about this, I am as the gastroenterologist who biopsied me 2 years ago told me not to worry any more about celiac disease as I didn't have it. As a consequence I have suffered another 2 years of rapidly worsening health, which is only now starting to resolve on a gluten free diet. I am convinced that a little more humility and willingness to accept that there is still more to learn about gluten sensitivity and a little less pompous certainty amongst many in the medical profession would go a long way.

alexsami Contributor
alexsami
Posted
  • Author

thanks....my symptoms are, well have been diarrhea, lots of gas...bloating....so i have had most of the digestive part anyways......and a few other symptoms....i was convinced it was celiac disease....its like now some people are saying you can just cut back on gluten....maybe one piece of pizza, or one beer, just dont indulge....but i am staying away completely, at least for awhile.....thanks for the input....i appreciate it

Katrala Contributor
Katrala
Posted

The testing (biopsy) was not properly done. Can't be gluten free that long and expect an accurate result of gluten eating status. so the results are not trustworthy. Either get it redone after eating gluten in "normal" amounts for at least 3 months, or simply try the diet for at least as long.

They were only gluten-free for a month. That isn't enough time for the villi to heal.

Duhlina Apprentice
Duhlina
Posted

OK, so i had the elevated gliadin antibody with the blood work....endoscopy showed nothing...i was convinced i had celiac diesease....now what? am i gluten intolerant? do I have "some" gluten?? I am so confused.....i went gluten free for a month....then ONE week eating gluten before biopsy.....anyone???????

OMG, you sound JUST like me! I tested low positive on the blood test and went gluten free for two weeks, then back on gluten for a week before my endoscopy. The doctor let my husband stay in the room when he did the test and showed my husband my villi and said they were completely normal and I do not have celiac (still waiting for the lab results of the biopsy though). My husband told him that I had gone gluten-free for two weeks and felt much better and, are you ready for this, the doctor told him it's all in my head!??!?!! WHAT?!?!?! I too am convinced I have it. All the pieces fell into place when I got the blood test results. I have to call on Monday to get my lab results of the biopsy, but I plan on going gluten-free no matter what the results are. I may splurge once in a while, but overall I'm avoiding it at all costs.

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Roda Rising Star
Roda
Posted

Did you have any relief on the diet for that month? At this point I would go gluten free strictly for at least 3 months. You can always later reintroduce gluten and see what your reactions are. Sometimes, O.K. a lot of the time, elimination is the best diagnostic tool you can have. My 10.5 year old has had repeated negative celiac blood work since I was diagnosed almost three years ago. I did take him to a GI the end of July to review his past/present symptoms and she did agree to scope him. It was negative also. After soul searching for the past two years, and after his GI consult/scope, we decided to trial thim gluten free. He is getting to an age that his lack/slow growth was becoming concerning. He has been gluten free now a month and we have seen improvements. He has gained two pounds, his color is better, he is having regular BM's now and not complaining of horrible stomach/gas pains. I'm hopeful he will start growing in height now, since usually when he does gain weight he grows in height too. I plan on doing a gluten challenge mid Dec. However, we are only going to do it long enough to see what happens since we already had a scope done. At his follow up GI appointment, the doctor was willing to acknowledge the fact that he may be gluten intolerent in light of the negative celiac diagnosis. We are going to follow up in Jan. basically to let her know the results of the challange and see what she says. I have no problem now keeping him gluten free for good. My 6 year old had a positive tTg last Nov. We did not have a scope done. My thought on that was that in absence of any other autoimmune issue with him, there was no other reason his tTg would be positive unless he had celiac. Hubby regretted not doing it, he misunderstood how things worked, so we challanged him on gluten after 4.5 months being gluten free. We would have done the three months to get a biopsy, but after three days and the reactions he was having, was enough for my husband to call it quits and consider him celiac. He has no doubt what gluten does to him and that was diagnostic enough for hubby. He does want me to get him "officially diagnosed" based on his past test result(going to have it repeated to see if it went down), his positive response to the diet, and his reactions to the challange. He feels it is necessary for future issues with school (ours has been great and we don't have a 504 plan), college and future occupations.

frieze Community Regular
frieze
Posted

They were only gluten-free for a month. That isn't enough time for the villi to heal.

It depends on the level of damage required by the reading pathologist. If there were minimal damage to begin with a month may have been long enough.

alexsami Contributor
alexsami
Posted
  • Author

OMG, you sound JUST like me! I tested low positive on the blood test and went gluten free for two weeks, then back on gluten for a week before my endoscopy. The doctor let my husband stay in the room when he did the test and showed my husband my villi and said they were completely normal and I do not have celiac (still waiting for the lab results of the biopsy though). My husband told him that I had gone gluten-free for two weeks and felt much better and, are you ready for this, the doctor told him it's all in my head!??!?!! WHAT?!?!?! I too am convinced I have it. All the pieces fell into place when I got the blood test results. I have to call on Monday to get my lab results of the biopsy, but I plan on going gluten-free no matter what the results are. I may splurge once in a while, but overall I'm avoiding it at all costs.

wow....we are totally in the same boat!!!!

twintn Newbie
twintn
Posted

OK, so i had the elevated gliadin antibody with the blood work....endoscopy showed nothing...i was convinced i had celiac diesease....now what? am i gluten intolerant? do I have "some" gluten?? I am so confused.....i went gluten free for a month....then ONE week eating gluten before biopsy.....anyone???????

I'm in the same boat right now. It's confusing and frustrating. I had surgery in May and started having stomach problems a month or so after ward. A month after symptoms started, my blood was tested and was positive for both h. pylori and celiac. Did the antibiotics for the h pylori then they scope me....nothing. I lost 35 lbs in a month and a half how can there be nothing? That's been a month ago and I've been gluten free since then and haven't lost anymore weight nor been sick. When I accidentally get some gluten I end up sick.

The Dr said that he took a couple of biopsies of the intestine and one of the stomach. You hate to second guess the highly educated Dr, but you also hate to pay tons of money for a procedure that you don't think was done accurately and has left you not knowing what is wrong with you. I don't want celiac, but even more than that, I don't want to not know what the problem is. You can't treat it if you don't know what it is. Of the family Dr, hematologist (enlarged spleen that seemed to come along with this), and gastro one one has yet to tell me what causes positive celiac blood tests and negative biopsies.

jswog Contributor
jswog
Posted

I tested recently negative to the celiac panel blood tests and a couple of years ago to biopsy. However my family history (half of my Mother's family are celiacs) and symptoms, which are responding to the gluten free diet was enough to convince my rheumatologist of the diagnosis. He is a lupus specialist who is used to diagnosing lupus and similar autoimmune disorders on the basis of symptoms which are not always reflected in the blood test results, and was willing to accept that celiac disease may also present in atypical ways. Not all doctors will do this.

May I ask who this doctor is?

UKGail Rookie
UKGail
Posted

He is Dr Edwards at the London Lupus Centre in the UK. I did have to find a medical paper written by a celiac specialist (Dr Peter Green from the Columbia Celiac Centre) who quoted my exact presentation as a rare atypical presentation of Celiac (apparent polymyalgia rheumatica plus ESR (SED rate) of 100)as evidence though. He was kind and not affronted by my having done my own research.

  • 2 months later...
StacyA Enthusiast
StacyA
Posted

He is Dr Edwards at the London Lupus Centre in the UK. I did have to find a medical paper written by a celiac specialist (Dr Peter Green from the Columbia Celiac Centre) who quoted my exact presentation as a rare atypical presentation of Celiac (apparent polymyalgia rheumatica plus ESR (SED rate) of 100)as evidence though. He was kind and not affronted by my having done my own research.

UKGail - can you provide a link or a little more info on the article you mention above? My mother has been dxed with PMR and is having a rough time, so I am looking for more info, particularly since I have celiac disease.

UKGail Rookie
UKGail
Posted

UKGail - can you provide a link or a little more info on the article you mention above? My mother has been dxed with PMR and is having a rough time, so I am looking for more info, particularly since I have celiac disease.

Hi StacyA

I am sorry to hear your Mother is having a tough time with PMR. Please find below a link to the article. The reference to PMR is in the section on atypical presentations. My symptoms of presumed PMR have completely disappeared with a gluten free diet, and they resurface in a mild form on exposure to small doses of gluten, lasting for a few days or a week or so. I am also sensitive to airborne wheat and have sinus problems,which seems to be reasonably well alleviated using Zantac (an H2 anti-histamine), so am suspicious of a wheat allergy, which may possibly explain why I am seronegative to the celiac panel. I hope my Doctor will send me for allergy testing after the holidays.

Best wishes

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