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New Year and New Celiac Info…

Happy New Year to all of you!

This post will focus on updated information about adult celiac disease that was presented at the Celiac Disease preceptorship that I attended at the University of Chicago in December 2014. Prior to the hustle and bustle of the holidays I was able to write a bit about what I learned about pediatric celiac disease (see link). I hope to share more information from the preceptorship in upcoming months, as time allows…

Dr. Carol Semrad, a celiac specialist from the Celiac Disease Center at the University of Chicago, gave a presentation entitled “Celiac Disease: The Adult Perspective” on December 4th. Here are some of the “highlights” from her excellent and comprehensive lecture.

75% of patients with celiac disease are diagnosed during the adult years. Many have only mild, intermittent gastrointestinal (GI) symptoms that they may think are “normal.”  Many adults are actually overweight/obese at the time of diagnosis. Others may have other problems (with either mild or absent GI symptoms) such as low bone mineral density, iron deficiency anemia, and hepatitis.

Celiac disease can present in 4 different ways:

1. Classical: diarrhea, gas/bloating, and weight loss
2. Atypical: fatigue, constipation, anemia, osteoporosis, dermatitis herpetiformis (rash), neuropathy, infertility, etc.
3. Asymptomatic: No symptoms, but positive celiac antibodies and an abnomal small bowel biopsy
4. Potential (latent): No symptoms, positive celiac antibodies but normal small bowel biopsy

The incidence of classical celiac disease is 1:4500, but the incidence of atypical, asymptomatic, and latent is 1:133. Celiac disease is not a rare disease like so many of us were taught during medical school.

The duodenal biopsy remains important for celiac disease diagnosis in adults and must be performed prior to a patient starting on a gluten-free diet. As discussed elsewhere during the conference, a “gluten challenge” in adults consists of eating at least 1/2 slice of bread for 2 weeks prior to a small bowel biopsy (and 6 weeks prior to celiac blood antibody testing).

Although villous blunting is the hallmark of celiac disease on small bowel biopsy, there are other diseases that can also cause villous blunting, which include tropical sprue, infections (Giardia, Cryptosporidia), Crohn’s Disease, small bowel bacterial overgrowth, olemsartan enteropathy, autoimmune enteropathy, and Graft v. Host Disease.  Villous recovery will occur on the gluten-free diet in celiac disease only (this can be used to differentiate celiac disease from the other causes of villous blunting).

Dr. Semrad recommended that patients with any of the following problems be tested for celiac with a duodenal biopsy:

-Diarrhea with weight loss
-Unexplained iron deficiency anemia
-Early osteoporosis
-Neuropathy or ataxia
-Positive celiac antibody tests prior to going on the GF diet

“High-Risk” patients who should have screening celiac antibody tests performed include those who have any of the following:

-First degree relatives of those with celiac (parents, siblings, and children)
-Type 1 diabetes
-Autoimmune thyroid disease
-Irritable Bowel Syndrome
-Asthma
-Multiple Sclerosis
-Primary Biliary Cirrhosis
-Down, Turner, and William’s syndromes

Treatment for celiac disease should include all of the following:
1. Life-long, strict gluten-free diet, including consultation with a dietician who is knowledgable about celiac disease
2. Lactose-free diet to start
3. Daily multivitamin and calcium
4. Folic acid for all women of child-bearing age

Patients with newly diagnosed celiac disease should follow-up with their physician and dietician at 3-6 months, and then every 1-2 years. Celiac antibodies should be retested after 3-12 months on the GF diet. Despite this, only 44% of newly diagnosed celiacs in the U.S. follow-up with their physicians, and only 3% have any follow-up with a dietician!

80% of patients with celiac disease will start to have improvement within 2 weeks of starting the GF diet. 20% will not have improvement at the 6 month mark and will be ultimately be diagnosed with nonresponsive celiac disease. Ongoing gluten ingestion is the most common cause of nonresponsive celiac disease. I’ll discuss both nonresponsive and refractory celiac disease in more detail in an upcoming post.  The bottom line is that if one continues to have symptoms after going on the GF diet, that follow-up is necessary.

Thank you for reading, and as always, please feel free to comment, ask questions, etc. Also, as an aside, please check out the January/February 2015 issue of Gluten-Free Living Magazine. I am featured in Susan Cohen’s article, “It’s Routine,” along with some other really cool celiac advocates including Dr. Fasano.

15 thoughts on “New Year and New Celiac Info…

    1. Jess Post author

      You’re welcome Julie! As always, thanks so much for being a loyal reader (and for commenting from time to time too!)
      Jess

  1. Priscilla

    Here is something I am surprised you have not covered: recently published research indicates that people with Celiac disease have auto-immune reactions to wheat proteins other than gluten. Do you have any thoughts on this?

    1. Jess Post author

      Hi Priscilla,
      Thanks for bringing this up. I did share it on my Facebook page a while back and I find it intriguing. I am, unfortunately, not going to have the time to dedicate a full blog post to this topic, but I think the reactions to the non-gluten portions of wheat may explain why so many of us have such rapid adverse reactions to wheat (due to stimulation of the innate immune response, in addition to the autoimmune reaction from gluten) and may be one of the key players in NCGS. Please feel free to share any references or good articles that you’ve come across concerning this topic if you’d like.
      Jess

  2. Amy

    You post was perfect for me to read. I came away from a follow meeting with my Dr. , who told Me that I do not have Celiac because the biopsy was negative. That said, the endoscopy was done because of family health/Cancer issues, not because I had Celiac symptoms. That said I have sad, blunt/flat villi. My question is, and I think you answered it, I have already been eating gluten free for a while. I don’t eat breads, processed foods, or baked goods. Prior to the endoscopy, I was GF strict for a month+. prior to that it was pretty limited. So I am questioning if the negative biopsy was a true negative. Am I asking the right question? I called the Doctor today to ask this question today. Should know more soon. But I would like your take on it. And perhaps others are like me. I already have autoimmune issues…. MS.
    Thanks Jess – Loved your New Year note – sure made me think!
    – Amy

    1. Jess Post author

      Hi Amy,
      Thank you so much for commenting and asking your question, as there are a ton of people in similar situations to you…hopefully some of them will come across this.
      If you were already GF for a month prior to the biopsy, then the biopsy cannot be a considered a true negative. As I stated in the post, the only way to get an accurate biopsy is to undergo a gluten challenge (see above) and then to make sure that the biopsies are performed specifically looking for celiac disease. The intestinal damage from celiac disease can be localized to a specific area of the small intestine called the duodenal bulb, and if this bulb is not biopsied (which is often the case), celiac can be missed.
      So, at the current time, if seems like celiac disease has not been ruled out in your case. The lecturers at the U of Chicago did bring up the link between celiac disease and MS several times as well.
      I wish you well. Thank you for reading.
      Jess

      1. Amy

        Hello again Jess,
        I just want to thank you for your reply and praise you for putting yourself out there. While I have concerns about being Celiac I am going to continue GF and continue to ask question. I have looked into the connection between CD and MS as well. And at this point I know my biggest concern is keeping MS at bay. I am blessed with information, good doctors and then fact that my family supports me! My drug therapy is going well, but I hope that I will be able to consider being drug free again – I will continue to follow you and Dr. Wahls and seek answers.
        You inspire hope! Thank you!
        Amy

  3. Ashley

    Based on the current recommendations, are there any situations in which a positive ttg-IgA would NOT prompt an EGD? Did they discuss the incidence of positive labs with subsequently negative pathology? This was an interesting read. Thanks for sharing!

    1. Jess Post author

      Hi Ashley,
      That is a great question. They did mention that the TTG can be positive in other conditions: liver disease, other autoimmune conditions, such as thyroid disease, Crohn’s disease, certain tumors, and even viral infections. That being said, they also emphasized that if the TTG is elevated, that celiac disease needs to be ruled out via endoscopy with small bowel biopsy.
      Does this answer your question?
      Jess

  4. shannon

    Thanks for the information Jess…. Now if we could just find a way to educate all of the medical providers to follow the criteria – imagine how many more people would be diagnosed and being followed properly…..

    1. Jess Post author

      Hi Shannon,
      I agree with you. That’s why we should team up and make a plan to travel around and lecture to all MD, DO, NP, and PA students in the US–we just have to find someone to pay us to do this :)
      I hope you’re doing well. I’ve been social media “light” but I miss all of you!
      Jess

  5. Dorothy Reimer

    Thanks for this info. Great for those of us new to CD. My GP and most of my GP friends were totally unaware of the silent celiac connection with osteoporosis. My GP requested an appointment with a nutritionist about a months go. Looking forward to reading your next blog.
    I’m wondering how long it takes to become “normal”; that is for the blood count to be 3-4; or is that unrealistic for someone with a count of over 250?

    1. Jess Post author

      Hi Dorothy,
      Thanks for sharing the background to your diagnosis. I hope you are transitioning well to the GF life.
      The folks at the U of Chicago really emphasized that the newly diagnosed need to have physician follow-up at the 3-6 month GF mark to have symptoms reviewed and lab tests repeated. My impression is that it would be unusual for such a high TTG IgA to be “normal” by the 6 month mark, but it should be quite a bit lower.
      I hope this answers your question. All the best to you!
      Jess

  6. Jacqui

    Hi,

    I had posted not too long ago under another topic and you were so kind to answer me so I just wanted to give you an update. My son is 16 and had lost 30 pounds in a very short period of time. He would feel like something was in his throat and then would throw up during or after a meal. It could be a few times a week or once a month. He goes to the bathroom a lot and also has severe eczema (per two dermatologists). The gastro dr did an endoscopy which showed mild chronic duodentitis with intraepithelial lymphocytosis and villous atrophy in the duodenal bulb, normal villous architecture in the duodenum. His doctor was not sure if he had celiac disease or not so he sent him for bloodwork which just came back negative. He wants us to wait and see how my son feels and does not think it is celiac. I do not think this is normal what is going on with him and I am going to another doctor next week for a second opinion. Can you have celiac with that kind of biopsy but negative on the bloodwork?

    Thank you for your thoughts on this!

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