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July 8th, 2012

Gluten: How often is it the culprit?

All gastroenterologists are very familiar with celiac disease, including its characteristic findings on small bowel biopsy and the treatment with a gluten-free diet. But I have noticed that we as gastroenterologists approach the possibility of sprue, or those suspected of having gluten sensitivity without sprue, with extraordinary variability. For instance, a negative screening tissue transglutaminase (TTG) has greater than a 99% negative predictive value (essentially excluding celiac disease), but a positive TTG has only a 25% to 35% positive predictive value, meaning that most patients who test positive do not have celiac disease.

So, first, here are some questions:

1) Do you still take biopsies in some patients with a negative TTG, and, if so, how do you decide which patients should undergo biopsy?

2) Do you take biopsies in all patients with positive TTG screens? If not, do you put these patients on a gluten-free diet as a trial?

3) Where and how many biopsies do you take to diagnose sprue? Do you always take biopsies in the duodenal bulb?

4) If you take duodenal biopsies, how long do you want the patient on gluten prior to the exam?

Now, let’s talk about gluten sensitivity:

1) If you take biopsies in patients with symptoms suggestive of sprue, and the biopsies are normal, but the patiens are improved on a gluten-free diet, what do you tell these patients? That they are sprue-variant? That they do not have sprue, but they are gluten sensitive?

2) Do you prescribe the same diet to these patients?

Please weigh in. I look forward to seeing your responses.

9 Responses to “Gluten: How often is it the culprit?”

  1. Yes.will do biopsy even if TTG test is negative as long as they have suggestive symptoms.
    2.Yes.Biopsy will confirm and the procedure is not difficult in those undergoig OGDS.
    3.A minimum of at least 3 to 5 biopsies will suffice and from the most distal point the scope will reach.
    4.At least 1 to 2 months on gluten.

    1.Probably Coeliac Disease unmasked.
    2.Yes.Gluten free diet

  2. I have found in talking to patients complaining of celiac symptoms that if their symptoms are relieved by eliminating gluten, they should. It is such a benign solution. As long as we follow them and make sure that the receive all the nutrients that they need. I think that this is ok, without doing an invasive proceedure.It might very well be celiac sensitivity aand not the disease itself.

  3. Gabor Kandel says:

    1)biopsy if patient requests, or if weight loss, anemia or other symptoms/signs of celiac
    2)yes, biopsy all who are TTG positive who let me
    3)6 biopsies taken from duodenum, including bulb
    4)restart gluten until symptoms, if this period of time is known, otherwise 2 weeks

    1)if biopsies normal, I label as “gluten-sensitive”, not a variant of celiac
    2)if biopsies normal, adjust diet to symtoms, if guten restriction does not completely relieve symptoms, I suggest low FODMAPs diet, no need for the rigorous gluten restriction of celiac disease.

    Looking forward to correct answers from Dr. Fennerty

  4. Daniel P. O'Neill, MD says:

    1. I do not routinely biopsy TTG negative patients except in unusual circumstances, e.g. unexplained weight loss and/or diarrhea.
    2. Yes, I do biopsy these patients
    3. Minimum of 3 biopsies in 3rd portion of duodenum
    4. I month.
    If patients say they are gluten sensitive but have no objective findings of sprue, I explain the difference & tell them that they don’t have to be as fastidious about a gluten-free diet as patients with documented sprue. In my experience, most of these patients meet criteria for IBS

  5. Tania Nordli MD, FCFP, ABAM, MRO says:

    RE: “a negative screening tissue transglutaminase (TTG) has greater than a 99% negative predictive value (essentially excluding celiac disease)”- I question this statement. A negative screening tissue transglutaminase pretty nearly excludes the possibility of a positive biopsy, but not the possibility of actually having celiac disease/response to a gluten free diet. Note the 2010 Finnish study on children that showed children with positive serology/negative biopsy responded just as well with a gluten-free diet as those with positive biopsy. My experience is there are various biopsy abnormalities that can be associated with people having their symptoms resolve with a gluten free diet. There are also false-positive biopsies (villous atrophy with olmesartan, for example).

    I like the old European criteria for celiac disease: resolution of symptoms with a gluten free diet, resumption of symptoms with gluten. What I in practice do: Any detectable antitransglutaminase-gluten free trial if patient agrees. Set objective criteria for what would indicate improvement, that is beyond the normal fluctuations of good and bad days. Clarifying with patients that this is an immune response, gluten is not a poison, so the body can not be exposed to any during the trial. Cutting down on gluten yields all the frustration and gives no information, compared to a true trial. Patients also need to be warned of a serum-sickness like reaction: usually starting day 2 of elimination of gluten (or any cluprit antigen) and lasting up to 6 weeks, though settling down by the 2nd week. This presumably is from a mismatch of antigen presented to antibody available, leaving more antibody to complex with tissue transglutaminase, and more antibody in the blood stream. By 2 months, functional goals should be being met, if so, improvement can continue for up to 2 years.

    I have not yet had a patient with a detectable antitransglutaminase who has gone on a gluten free diet who has not responded with meeting of at least some objective functional goals. From the experience of people going through an irritable bowel protocol or few foods diet protocol, (as per Janice Joneja RD, PhD) with no detectable antitransglutaminase, only about 3 out of 10 seem to have a reaction to gluten-so I do not think this is just a general effect of gluten, natural history of the diseease, or all the effects that come under the heading of placebo response.

    Thank you,

    Sincerely,

    Tania Nordli MD, FCFP, ABAM, MRO

    Citation(s):
    Kurppa K et al. Celiac disease without villous atrophy in children:

    Severe Spruelike Enteropathy Associated With
    Olmesartan, Mayo clinic proceedings 2012

    references:

    A prospective study. J Pediatr 2010 Sep; 157:373.
    Medline abstract (Free)
    Hill ID. Diagnosing celiac disease: How important is the biopsy? J Pediatr 2010 Sep; 157:353.
    Medline abstract (Free)

  6. 1) yes, in same special pts to look for a villus damage.

    2) i recommend to all pts a duodenalbiopsy.

    3) 3 dubble biopsies bulbis to lig,. Treitz

    4) early under normal nutrition with gluten or after 3 Month callange

    Now, let’s talk about gluten sensitivity:
    1) yes, if there is a positive serology and no abnormalities of the villi, than i classifý this as silent celiac disiease (Zöliakie!, Spue is old and not conventional).
    If the child – (i am pediatrician) becoms asymptomatic with glutenfree diet, than i say: “gluten sensitive” ist possible, continue glutenfree.
    2) Do you prescribe the same diet to these patients?
    yes

  7. 1) yes, in same special pts to look for a villus damage.
    2) i recommend to all pts a duodenalbiopsy.
    3) 3 dubble biopsies bulbis to lig,. Treitz
    4) early under normal nutrition with gluten or after 3 Month callange
    Now, let’s talk about gluten sensitivity:
    1) yes, if there is a positive serology and no abnormalities of the villi, than i classifý this as silent celiac disiease (Zöliakie!, Spue is old and not conventional).
    If the child – (i am pediatrician) becoms asymptomatic with glutenfree diet, than i say: “gluten sensitive” ist possible, continue glutenfree.
    2) Do you prescribe the same diet to these patients?
    yes

  8. 1) yes, in patients with anemia/ weightloss/ symptoms
    2) bx if TTG +
    3) 6 duodenal bx from most distal small bowel reached, no from bulb
    **** If you didnt know it, for your billing- SBE Small Bowel Enteroscopy pays significanlty more, esp. with biopsy, than EGD/bx- as long as you document going to third/ fourth duodenum, or proximal jejunum- I do with standard EGD scope. SBE indications-weightloss, IDA, occult GIB/FOBT+, refractory or persistent n/v, abnl xray
    4) at least 1month gluten-2-4 slices of bread a day

    non-celiac gluten sensitivity
    1)silent celiac vs. non-celiac
    2) yes, depends on symptoms

  9. 1)biopsy if patient requests, or if weight loss, anemia or other symptoms/signs of celiac
    2)yes, biopsy all who are TTG positive who let me
    3)6 biopsies taken from duodenum, including bulb
    4)restart gluten until symptoms, if this period of time is known, otherwise 2 weeks

    1)if biopsies normal, I label as “gluten-sensitive”, not a variant of celiac
    2)if biopsies normal, adjust diet to symtoms, if guten restriction does not completely relieve symptoms, I suggest low FODMAPs diet, no need for the rigorous gluten restriction of celiac disease.

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