Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Biopsy Negative....now What?
0

15 posts in this topic

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???????

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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!!!!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

http://www.charlotte-celiac-connection.org/files/The_Many_Faces_Of_Celiac_Disease.pdf

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined