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Long-term Histological Follow-up of People with Celiac Disease


QJM celiac study

Celiac.com 07/28/2010 - Most people with celiac disease keep themselves healthy by following a gluten free diet. More and more, doctors are recognizing the importance of confirming gut recovery through follow-up evaluation. Still, among clinicians, there is currently no standard for follow-up confirmation of gut healing in celiac disease treatment.

Many guidelines recommend an initial follow-up biopsy at 4-6 months after the patient begins a gluten-free diet. However, the use of biopsy to confirm gut healing is still controversial, as it can yield enormously variable results.

A group of researchers recently set out to establish the amount of time it takes for full gut recovery in patients with celiac disease.

The research team was made up of J.M. Hutchinson, N.P. West, G.G. Robins and P.D. Howdle. They are variously affiliated with the Sections of Medicine, Surgery and Anesthesia, the Section of Pathology & Tumour Biology at the Leeds Institute of Molecular Medicine in Leeds, and with the Department of Gastroenterology of the York Foundation Hospitals Trust, York, UK.

The team enrolled patients who attended a specialty celiac disease clinic prior to March 2009, and recorded various clinicopathological information into a database.

The team reviewed histopathology reports for all duodenal biopsies, and scored each biopsy for histopathology based on a modified Marsh grade.

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The team indexed and performed at least one biopsy on two hundred and eighty-four patients.

The team found marked gut improvement in two-hundred and twenty-seven patients (80%), and a complete return to normal histology in 100 patients (35%). Average recovery time was 1.9 years, with a range of 1.0–4.8 years.

Patients with less serious celiac disease at the start showed a better overall response (r = 0.281, P < 0.0001), while older patients recovered more quickly (r = –0.200, P = 0.001).

Patients who best followed a gluten-free diet showed the best biopsy scores (r = –0.134, P = 0.040) and the greatest degree of histological recovery (r = 0.161, P = 0.014).

Current guidelines for treatment of celiac disease recommend timing repeat biopsy 4-6 months after commencing a gluten free diet.

These results shows histological recovery generally takes longer than traditionally thought, and that doctors looking to conduct such follow-ups might do well to factor in the patient’s age at diagnosis, the initial disease score, as well as the level of compliance with a gluten free diet.

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4 Responses:

 
Ian geary
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said this on
03 Aug 2010 1:44:32 PM PDT
This is rather superficial when dealing with such a complex subject. In the UK there is little opportunity to get endoscopy by request at 4- 6 months. Nor would anyone want one!
There is follow up but it is more 'general'- from my experience.

 
RD Schrock Jr MD
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said this on
03 Aug 2010 2:23:11 PM PDT
If I had been asked to undergo a follow-up biopsy, I would have declined respectfully, because I felt so much better on a gluten-free diet and had no doubt about intestinal recovery on that basis. I was no longer lactose intolerant and I was gaining weight. At age 61 the risk of repeat endoscopy outweighed the benefit. My enzymes were repeated and returned to normal.

 
Sarah
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said this on
04 Aug 2010 7:17:00 PM PDT
I think this article is great. People are so scared of biopsies, when they are fairly routine, safe, and painless (if you choose to be sedated). for the vast majority of adult patients. I've had 2 without any sedation at all, only anesthetic spray at the back of the throat to reduce the gag reflex. Over in 4 minutes or less, no recovery time with no sedation. Walked out of the day surgery room feeling fine. It's important to have a follow up biopsy as it seems like a strict gluten-free diet alone does not "reverse" Celiac in all Celiacs, especially those like me with "serious" disease. These people may also need steroids, immune modulating drugs, and IV nutrition. You can have normal bloodwork and still have significant intestinal damage. Some complications (I.e. osteoporosis) may not show up until much later, even if you're not as sick or symptomatic.

 
trina
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said this on
22 Aug 2010 2:53:13 PM PDT
Good general feedback which may seem overwhelming to see 4.8 yr but to know 'celiacs' is good.




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Learn more about testing for celiac disease here: http://www.cureceliacdisease.org/screening/ You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work. While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ So, both the blood test and endoscopy are usually ordered. There are some exceptions, but those are not common.

Exactly what are your allergy symptoms? Were they IgG or IgE? Allergy testing as a whole is not super accurate -- especially the IgG. Were you on any H1 or H2 antihistamines for the last five days when you were tested? As far as celiac testing, four days without consuming gluten probably would not impact testing.

I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way.

So just to clarify had not consumed any gluten for about 4 days before testing. I was assured by my allergist that it wouldn't affect the test. But what was alarming was that she retested my food allergies (my most recent reaction was two weeks ago) and every food allergy I have came back negative. I don't understand how that is possible. These food allergies developed when I was 20 and I am almost 24 now.

Thanks! You too! I have learned from this experience to take charge of my own health. It's nice at least that we can try the gluten-free treatment without a firm diagnosis or a doctor confirming the disease. I've also felt some of the gluten withdrawal symptoms, and my stomach pain ebbs and flows, but I'm determined to stick with the gluten-free diet to see what a difference it makes. Gemini, thank you! This was really validating and useful for me to hear. I've felt so confused through this process and just want some answers. If the biopsy results do come back negative, I'm going to follow your advice and do the gluten-free diet with repeat blood testing after a while. If they come back positive, well, then I'll have my answer. I'm supposed to get them back next week.