Tag Archives: celiac diagnosis

gluten challenge

Hope for a Less Challenging “Gluten Challenge”

The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing.  If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed.

Since starting this page I’ve encountered many people who have decided that they’d like to be tested for celiac disease after starting on the gluten-free diet.  Per the celiac disease experts, a “gluten challenge” must be performed in these cases to assist in the diagnosis of celiac disease. A gluten challenge requires eating foods containing gluten for a prescribed period of time prior to an endoscopy and/or blood testing for celiac disease. The length of time and amount of gluten that need to be consumed for a gluten challenge vary from source to source. Here are some examples of different recommendations for a gluten challenge (current as of July 5, 2014):

University of Chicago Celiac Disease Center: “For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.”

Celiac Disease Center at Columbia University: “In individuals who are willing to further pursue the question of whether they have celiac disease, we will advise a gluten challenge. This consists of ingesting at least 4 slices of bread a day for one to three months followed by an endoscopy and biopsy. There is no evidence that following antibody tests is beneficial in establishing a diagnosis of celiac disease because these tests are not sensitive in this setting.”

Celiac Disease Center at Beth Israel Deaconess Medical Center: “Gluten is reintroduced into the diet and after a period of time (ideally 6 to 8 weeks if the challenge can be tolerated for that long) blood tests and an intestinal biopsy are performed. If the gluten challenge is not tolerable for the full 8-week period blood tests and biopsy can be performed sooner but this can lead to a false negative result.”

In addition, Dr. Leffler and colleagues published a paper in 2013 showing that the majority of patients with celiac disease will test positive after eating >3g gluten/day for 2 weeks. A typical piece of wheat bread contains about 5g of gluten.

Despite all of the confusion, there is hope on the horizon for a shorter gluten challenge in the future.  Researchers at the Walter and Eliza Hall Institute in Australia have been developing a blood test that measures gluten-reactive T cells, immune cells that increase in response to gluten in those with celiac disease, via cytokine release assays.  In a pilot study published earlier this year, patients with celiac disease had a significant jump in blood levels of gluten-responsive T cells, compared to controls, after only 3 days of consuming gluten. Per Dr. Jason Tye-Din, one of the researchers working on this test, “We hope that larger studies can validate these findings and establish its role in the diagnosis of celiac disease.” For the sake of my gluten-light kids, and everyone else who is in a similar situation in regards to diagnosis, I hope he is right.

A press release regarding the study can be found here.

Out of curiosity, have any of you been diagnosed with celiac after doing a gluten challenge? If so, do you remember how much gluten you had to eat and for how long prior to testing?

Full reference:

Ontiveros NTye-Din JAHardy MYAnderson RP. Ex-vivo whole blood secretion of interferon (IFN)-γ and IFN-γ-inducible protein-10 measured by enzyme-linked immunosorbent assay are as sensitive as IFN-γ enzyme-linked immunospot for the detection of gluten-reactive T cells in human leucocyte antigen (HLA)-DQ2·5(+) -associated coeliac disease. Clin Exp Immunol. 2014 Feb;175(2):305-15.

 

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Updated Guidelines on the Diagnosis and Management of Adult Celiac Disease

I tried to abstain from reviewing celiac disease research for my 10 day vacation to Massachusetts and failed (proving that I am a big nerd). Earlier today when I checked out Pubmed.gov I came across a June 10th publication entitled “Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology.” This paper summarizes recommendations and information from a panel of 21 worldwide celiac disease experts.  You can find the entire article here. If you have the time, the entire article is worth reading.

As I read I learned some new facts, figures, and celiac disease information:

6-22% of cases of celiac disease are seronegative. This means that between 6-22% of people with celiac disease do not have abnormally high antibodies on celiac blood screening tests but do have abnormal small intestinal tissue on biopsy.

First degree family members of celiacs (parents, siblings, and children) have a 16-fold increased risk of also developing celiac disease if they are HLA-DQ2 positive on celiac gene testing.

If a patient has abnormally high celiac disease antibodies, but a normal small bowel biopsy when endoscopy is done (no signs of celiac), then some of the experts recommend that endoscopy be repeated so that jejunal biopsies can be performed. The jejunum is the 2nd portion of the small intestine and is not normally biopsied when a patient is evaluated for celiac disease.  Video capsule endoscopy can also be used in equivocal cases.

Biopsy reports should include all of the following (this is a bit technical but important for those of us who have copies of our own reports, and/or our family members’):

  • Number of biopsies (including those from the duodenal bulb) and orientation.
  • The architectural features (normal, partial, sub-total or total villous atrophy).
  • Comment on the content of the lamina propria (in CD these are lymphocytes, plasma cells and eosinophils, and occasionally neutrophils, but cryptitis and crypt abscesses should suggest other pathology).
  • Presence of Brunner’s glands.
  • Presence of crypt hyperplasia, villous height: crypt depth ratio (3:1).112 The absence of plasma cells suggests common variable immunodeficiency.
  • Evaluation of IELs (with immunocytochemical staining for T cells (CD3) in equivocal cases) is vital.

After diagnosis with celiac disease, adults should be followed-up annually with all of the following: complete blood count, ferritin, folate, Vitamin B12, calcium and alkaline phosphatase levels, thyroid function testing and glucose levels, liver function tests, and celiac antibody levels. In the absence of symptoms, having a follow-up biopsy appears to be controversial. Most of the experts recommended that it be done between 2 and 5 years after diagnosis. 6 months after diagnosis definitely appears to be too soon.

In regards to a gluten challenge, the authors stated: “To perform a gluten challenge, a recent study recommends a 14-day gluten intake at ≥3 g of gluten/day (two slices of wheat bread per day) to induce histological and serological changes in the majority of adults with CD. The challenge can be prolonged to 8 weeks if serology remains negative at 2 weeks.”

In conclusion, this paper is a comprehensive overview of the latest and greatest in regards to celiac disease in adults.  Now that I’ve discussed it I am going to return to my vacation! Hope that you’re all having a good summer thus far. Please let me know if you come across any interesting articles, research, etc.

Reference:

Ludvigsson J, Bai J, Biagi F, Card TR, Ciacci C, Ciclitira PJ, Green P, Hadjivassiliou M, Holdoway A, van Heel DA, Kaukinen K, Leffler DA, Leonard JN, Lundin KE, McGough N, Davidson M, Murray JA, Swift GL, Walker MM, Zingone F, Sanders DS; Authors of the BSG Coeliac Disease Guidelines Development Group. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014 Jun 10. pii: gutjnl-2013-306578. doi: 10.1136/gutjnl-2013-306578. [Epub ahead of print]

 

My First Trip to a Gastroenterologist

GI

I have been wanting to get this story off of my chest for a while! Alternative titles ideas for this post included, “Why I did not become a Gastroenterologist,” and, for my M.D. friends, “Some females with chronic abdominal pain may actually be suffering from gluten intolerance.”

I saw a gastroenterologist for the first time approximately 16 years ago. It was the summer between my freshman and sophomore year of college. It is etched in my memory because it was such a horrible experience.

I suffered from a mysterious mono-like illness when I was 18 that started shortly after an episode of food poisoning. Soon after, I began to have episodes of sharp, stabbing, diffuse abdominal pains accompanied by bloating and diarrhea. My symptoms seemed to always get worse in the evenings, shortly after dinnertime. I wondered why I would go from looking “not pregnant” to about 8 months pregnant within minutes. I slept with a heating pad on my abdomen most nights. I also had recurrent pharyngitis, fatigue, oral ulcers, and anemia. I also could eat anything I wanted without gaining any weight (which I admit, I thought was pretty cool at the time).

I was treated over and over again for stomach and duodenal ulcers, but despite treatment, my symptoms continued to worsen. During my freshman year I had an upper GI performed (barium swallow) which was normal. My adolescent medicine doctor referred me to a Gastroenterologist and I met him that following summer. It was a memorable experience…but not in a good way! The GI doctor came into the room and didn’t introduce himself. He never sat down. He did not look me in the eye. He reviewed the results of my upper GI study and told me it was normal. He told me that I had Irritable Bowel Syndrome (IBS). He asked me if I had ever been sexually abused. After telling him that I had not, he told me that I must have been abused and was repressing it, because, in his experience, most of his female patients with Irritable Bowel Syndrome had abdominal symptoms as a result of abusive memories. He recommended that I get psychological counseling and to eat a lot of whole grains. He walked out the room.

I remember this interaction vividly because I was planning on going to medical school and it was one of my first experiences as an adult patient. Although I cannot remember the name of the Gastroenterologist, I know that, if I really wanted to, I could find him, as at the time he was working at a large university hospital in a large mid-western city. I hope to God that he actually evaluates his IBS patients for Celiac Disease now, in lieu of recommending psychological evaluations and whole grains. Actually, I hope for the sake of all that he is no longer practicing medicine!

Perhaps I have shared too much with you, but I know that there are tons of Celiacs who have had similar experiences to mine. The lesson that I learned was that I should have gotten a second opinion (or third, or fourth if needed). And, if you or your loved ones are having symptoms that seem to be dismissed, that you need to seek alternate opinions as necessary.

Also, despite there being bad doctors out here, most of us truly care about our patients and want them to heal! We continually learn from our patients as well. Please ask questions and provide us with information that you think is important and relevant to your care and the care of your family. I have learned a ton from the parents of children with chronic illnesses through the years.