Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

POSITIVE BLOODS? FALSE BIOPSY? help I'm confused ! :(


emilyyy
Go to solution Solved by trents,

Recommended Posts

emilyyy Newbie

Hi everyone. I need help please Last year I got a blood test because I felt like I was super fatigued all the time. My blood test results had shown low iron and an indication of celiac disease as I had a score of 42.9 CU H for IgA, which is shown on this paper as a strong positive. They put me on a waitlist to get a biopsy/endoscopy done, which I finally ended up getting after a few months through the public system. The endoscopy apparently showed “suspicious inflammation” on the cameras, but I still had to wait for the biopsy. waited 3 weeks for my results, and the biopsy had shown no damaging on my intestine.

So that leaves me now, very distraught and conflicted on what to do. The gastroenterologist said my blood test alone was not enough to diagnose me, and that to “officially” diagnose me, they would need to perform another biopsy, which means I would need to eat gluten again for another 6 weeks. He however did tell me he still thinks there is a strong likelihood that i would have it, and that it is up to me on whether i want to go through 6 weeks of eating gluten again. 

Since I had the biopsy/endoscopy performed, I stopped eating gluten… and it’s been about a month and a half now. I honestly was so happy that I had a cure for all of my struggles, I’m feeling wayyyy less tired, I’m feeling more emotionally stable and my bowel movements are much better. But after hearing that I might not even have it, I’m now not sure what to do… I know you guys might think I sound crazy for wanting to have celiac disease, but the only reason I was hoping to be diagnosed was because I felt like it would have been the solution to my problems, by stopping eating gluten. And now I’m second guessing myself and thinking maybe I’m making this all up in my head and it’s a placebo effect that I’m having, and that’s the reason I might be feeling much “better”.

What should I do? Has anyone else had this same situation happen to them? Should I just eat gluten again and do another biopsy to make sure? Please let me know


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Solution
trents Grand Master

Welcome to the forum, @emilyyy!

Countless contributors to this forum have found themselves in the same conundrum as you.

But I think you have your answer. Your greater well-being since instituting a gluten free diet is not a placebo effect. However, it seems to be true that some people do need an official diagnosis to help them stay on the gluten free bandwagon. Remaining gluten free requires a great deal of determination and discipline. And there is a social cost to it.

If you do decide to go back on gluten to qualify for a valid biopsy, you would need to really pig out on gluten for several weeks, daily consuming gluten in the equivalent amount of six pieces of bread. 

Scott Adams Grand Master

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

It's also possible that your celiac disease was caught early, before villi damage occurred.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

 

 

knitty kitty Grand Master

@emilyyy,

Have you thought about getting a DNA test?  Celiac Disease is genetic.  You must have at least one of the genes for celiac disease to develop.  You don't have to be consuming gluten for a DNA test.  

What is being done for your low iron?  Low iron is common in newly diagnosed Celiacs.  

In the early stages of celiac disease, intestinal damage can be patchy or beyond the reach of an endoscopy.  Biopsy samples need to be examined under a microscope by someone familiar with changes due to Celiac Disease.  

The amount of gluten eaten prior to blood tests can affect the results.  Were you eating 6 -10 grams of gluten prior to testing?  Sometimes people cut back on gluten before testing because of their uncomfortable symptoms, and get equivocal results.

It can be frustrating trying to get a diagnosis.  But, do keep trying so you won't be stuck in that limbo land of wondering.  

I was diagnosed by genetic test and improvement on a gluten free diet.  I had diabetes, anemia and Thiamine deficiency, all of which affect anti gluten antibody production, and was seronegative.  You do have positive antibodies.  Ask your doctor for a genetic test.  Be strong.  It is a bumpy road to diagnosis, but we're here to cheer you on.  Best wishes! 

emilyyy Newbie
21 minutes ago, knitty kitty said:

@emilyyy,

Have you thought about getting a DNA test?  Celiac Disease is genetic.  You must have at least one of the genes for celiac disease to develop.  You don't have to be consuming gluten for a DNA test.  

What is being done for your low iron?  Low iron is common in newly diagnosed Celiacs.  

In the early stages of celiac disease, intestinal damage can be patchy or beyond the reach of an endoscopy.  Biopsy samples need to be examined under a microscope by someone familiar with changes due to Celiac Disease.  

The amount of gluten eaten prior to blood tests can affect the results.  Were you eating 6 -10 grams of gluten prior to testing?  Sometimes people cut back on gluten before testing because of their uncomfortable symptoms, and get equivocal results.

It can be frustrating trying to get a diagnosis.  But, do keep trying so you won't be stuck in that limbo land of wondering.  

I was diagnosed by genetic test and improvement on a gluten free diet.  I had diabetes, anemia and Thiamine deficiency, all of which affect anti gluten antibody production, and was seronegative.  You do have positive antibodies.  Ask your doctor for a genetic test.  Be strong.  It is a bumpy road to diagnosis, but we're here to cheer you on.  Best wishes! 

to be honest, i don't think i was eating the recommended amount of gluten before testing, some people say i need to eat at least 3 pieces of bread per day, but i def did not eat that much EVERY day, some days i may have not even eaten gluten i think. but then there would be days where i ate big bowls of pasta so i thought that maybe would be enough gluten to show positive on the test. but then i also went through a stage where my therapist told me to just stop eating gluten if it's making me feel bad because i was waiting for ages since i wanted to get my biopsy done through the public system. So i ended up not eating gluten for about a week, but then after that week I got a call from the centre they ended up shortlisting me and marking me as important. so they said in 3 weeks time i could get my biopsy done. So then i continued to eat gluten until then, but now I'm doubting that the one week i didn't eat any could have messed with my biopsy results

knitty kitty Grand Master
(edited)

@emilyyy,

Yes, eating gluten sporadically and not eating gluten for a week can impact your biopsy results.  

You owe it to yourself to do the gluten challenge appropriately.  Go all in so you will get unequivocal results.  

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!

Edited by knitty kitty
Typo
Scott Adams Grand Master

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Katanya Rookie

But what if when you eat three slices of wheat bread you get really bad skin reactions. Who would perform the DNA test for celiac? 

trents Grand Master

If you get skin reactions from gluten it may not be practical for you to undergo the gluten challenge in order to get tested for celiac disease. Can you describe the appearance of your skin reactions? Is it a rash with small blisters in the bumps?

Any physician can order a DNA test or you can pay to have a private company to do testing. 23 and Me is the big name in third party DNA testing. But you need to understand that 40% of the general population carries one or more of the genes associated with celiac disease yet only about 1% of the population actually develops active celiac disease. The gene test for celiac disease is not diagnostic. It only establishes the potential for developing celiac disease. 

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,886
    • Most Online (within 30 mins)
      7,748

    Old Soul Elder
    Newest Member
    Old Soul Elder
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Nicbent35
      Hi, I have a 3 1/2 year old daughter..I would say she has had tantrums since even before she was a year old. Challenging but not extreme. Lately, her behavior had gotten extreme. Just so angry, yelling mean hateful things, completely defiant, was causing a lot of disruption in our house, I felt like I had lost the little girl I knew, we were baffled.   Something just didn’t seem right to me, I have been researching and read about how gluten can sometimes affect kids behavior. I took her off gluten a week ago tomorrow. The next couple days after I took her off gluten the days were much easier. About 4 days in she had one of the worst days I’ve seen her have tho. I kept on with it tho and the past two days she has been angelic. Is this common that if it is gluten that she could still have a bad day like that a few days after taking her off of it? Should I try to reintroduce it at some point to see if it’s really a gluten intolerance? I’m not gonna lie, if she continues with the great behavior she’s had the past couple days I will probably be scared to reintroduce it but don’t want her to have to avoid gluten if it’s not necessary. Anyone have advice? 
    • trents
      But HDL is considered to be the "good" cholesterol, right?
    • plumbago
      Since some time between 2010 and 2014, my HDL-C has been going up and you might even say elevated. The last time I could find in my records that my HDL was normal was in 2014 when it was 67. Last week, it was 101, and it’s been 88 and above since about 2015. A significant life event happened in 2010 when I was diagnosed with Celiac disease and in May of that year began a gluten free diet. An informal perusal of a previously posted topic on HDL on this forum shows that a lot of members responding had high normal or high levels of HDL, so it doesn’t seem to be that unusual. But because my HDL numbers have been so high for so long, I am now officially concerned enough that I will probably reach out to a cardiologist who specializes in lipids. I would like to know if I should have a genetic test, as a specific genetic mutation can be one reason for high HDL numbers. I will also ask if he/she thinks a cardiac work up including a coronary artery calcium score should be considered. I think by now most of us are done with the ridiculous good and bad cholesterol labels; the amount of what we don’t know about HDL is quite large. For me my questions include is it a matter of production or an inability to clear HDL, and are the high levels having an effect on my vasculature (or a result of a less than optimal vasculature)? My last TSH level was normal, so it's likely not a thyroid issue. I also take B12 regularly. I’ve read that niacin can cause HDL levels to go up, but B12 is not niacin, and I could find no definitive link between robust B12 supplementation and abnormally high HDL levels. Any input is appreciated! Plumbago
    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
×
×
  • Create New...