Question 1
What recommendations would you make to a client who suspected that they had celiac disease, but was unsure if they had a family history of the disease?
posted by Julie @ 11:00 AM
30 comments
ISU Dietetic Internship Journal Club
Objective: To become familiar with current scientific literature on a variety of nutrition topics and to gain experience in gathering, organizing, critically evaluating, presenting and facilitating group discussion of the literature and the implications to practice.
30 Comments:
To a client who suspects that they have celiac disease, I would first ask them what signs and symptoms they are experiencing. Signs and symptoms of celiac disease include: frequent stools, diarrhea, irritability, a distended abdomen, easily fatigued, pallor, weight loss, vomiting and anemia. If the patient was experiencing some or many of these signs or symptoms I would have them tested and screened for celiac disease. Early diagnosis is important because gluten can increase the risk of other autoimmune diseases. I would ask the patient what a typical diet is for them and determine how much wheat, rye, and barley they typically consume. I would recommend that this patient avoid wheat, barley, and rye and see if this relives their symptoms. If so, this patient most likely does have celiac and needs to be educated about the disease and given a proper gluten-free diet to adhere to.
My initial thought on this is to recommend a test be done to detect celiac disease. Even if there is not a known family history of the disease for this client, prevalence is definitely higher in relatives of an individual with celiac disease. Onset is usually from about infancy to early adulthood, but about 1/5 of cases occur in adults over the age of 60. Obviously, the disease can occur at any age, though, and so no matter what the age of the client, it seems that in this case, screening and testing for the detection of the condition needs to be completed. Not getting tested and letting his/her symptoms go would not be a great option for this client, as celiac disease may lead to other health problems.
Sam-good point to FIRST ask the patient to tell you about his/her symptoms. My initial thought was "TEST," but it is a good idea to double check and ask them what their symptoms are. It could be they have symptoms of another disease or illness.
If a client of mine suspected that they had celiac disease I would first tell them to not eliminate gluten from their diet and immediately get tested. It is important that if someone suspects they have celiac disease to not remove gluten as that will improve their symptoms and when tested may appear as though they are fine. You need to have gluten to cause some inflammation so it can be detected. While celiac disease is a common genetically based disease, there is still a chance that a client may have celiac disease and not know of any other family members that had it. However a family history would be a strong indicator.
If a client though they had celiac disease, I would inquire what symptoms they possessed. I would check the chart to see if the pt had unexplained Fe deficiency anemia, high levels of transaminases, fetal loss, or infertility. Other signs/symptoms include: diarrhea, irritability, distended abdomen, easy fatigue, pallor, wt loss, vomiting, frequent/strong smelling pale/foamy stools. If the pt presented with these symptoms, particularly the first set listed, then I would recommend a capsule endoscopy be performed.
Sam, I disagree with recommending that the pt avoid wheat, rye, and barley if you are going to have them screened for celiac disease, at least if the capsule endoscopy test is used. False negatives may result in the capsule endoscopy test if a pt avoids gluten containing foods for a month or longer.
If a client was concerned they might have celiac disease I would encourage them to talk to their doctor and possibly get a referral to see a GI specialist. While there is no definitive test to determine if someone has a gluten intolerance; there are some avenues that doctors can pursue to give a better indication if that is truly the cause of the problem or at least rule out other issues.
I would also suggest to the client that in addition to talking to their doctor, to try and find out anything they can about their family history of GI problems. Additionally, I would suggest that they try to eliminate gluten foods for a 2 week span to see if symptoms improve. I would however warn them of the difficulty of following this diet strictly and the necessity with which it must be followed in order to alleviate symptoms. If the patient does not present symptoms as is common then I would inquire as to why they feel they might have this condition and try to find out what is the underlying issue.
Katherine and Steph,
I agree with you both in that eliminating gluten immediately before testing would be inappropriate for purposes of finding out if the person might have celiac disease. I do however think though that they test are inconclusive and that following testing despite the results the patient should try a gluten free diet for at least 2 weeks to see if symptoms improve. The client would have to be aware however that symptoms will still be present if any gluten is consumed so the diet requires total dedication.
Annie,
I agree that if the tests are inconclusive it cant hurt for the patient to at least see if a gluten free diet will elevate symptoms...I know that there are several individuals whose tests come back negative but a gluten free diet helps. However it is imperative that they don't follow the diet until have they have been tested!
The genetic counterpart is a significant part of this puzzle; however it’s not the entire answer. If a patient is unsure of whether they have a family history of celiac disease, you can still assess their symptoms and treat accordingly. If however, they do find out they have a family history of celiac disease, it is much more likely that they have the disease as well. According to the article, 1/22 with a first-degree relative and 1/39 with a second-degree relative diagnosed with celiac disease suffer from the same diagnosis. The odds world-wide are 1/266. Obviously genetics play a major role in this disease; however it shouldn’t completely dictate how you are treating a particular patient.
Instead of going straight to testing, if I had a patient who was presenting with celiac-like symptoms, I would likely recommend that a patient be gluten-free for two weeks and see if there is any alleviation of symptoms. A lot of times celiac patients are never tested; they are treated empirically, accepting that with a gluten-free diet they have a reduction in symptoms and that’s less stressful for them than continuing on a harmful diet and undergoing an intestinal biopsy or a myriad of blood tests.
I would recommend that they first discuss this matter (and possible testing) with their doctor. I wouldn't recommend any diet changes until they are officially diagnosed with celiac as elimination of gluten before testing will show a false negative (their symptoms will improve and they will not be diagnosed with celiac even if they actually have it). As for family history, I would note that it is possible that family members may have had celiac without even knowing it (or they may have been misdiagnosed) or they may have no family history at all.
Annie,
I agree with you about telling them to consult their doctor. There could be other problems that they hadn't thought could be the cause.
Tori
In the age of technology and immediate access to the internet a patient my have self diagnosed themselves and have themselves convienced that they have celiac's when in fact it could be something very simple.
This is an auto immune disease so the family history doesn't really play in here. Just calming their nerves and fears would be one of my first concerns. Letting a patient know that their life isn't over as they know it and that there are several foods available to them if the tests do show that they have celiac's.
Tori
I'm not sure that a family history is something they need to be concerned about here. If they already suspect they have the disease, I would recommend they try omiting gluten from their diet for 2 months and see if their symptoms resolve. Otherwise, an intestinal biopsy can be done to provide a solid diagnosis. Historically, Celiac disease is underdiagnosed for several reasons, so even if they do have a strong family history, it will probably not be apparent.
Kat, good points about the labs...did you give a presentation on this or something? I think looking at those results would tell the medical team that Celiac disease is LIKELY causing the patient's symptoms (assuming they are having symptoms). If the labs point towards unexplained anemia, etc, a biopsy should most certainly be done. Good call.
I would encourage them to speak with other family members to see if they also had been diagnosed with Celiac disease, or were experiencing similar symptoms. I would also recommend to the client to talk to their doctor about being tested for Celiac disease. I would let the client know generally what to expect when they are testing for Celiac disease. For example, that they would first need a blood test, and that the results from the blood test will identify if there is a poblem or not. If the blood test showed possible Celiac disease, they would have to have a biopsy of the intestine to confirm the diagnosis. After they had a confimed case of Celiac disease we could talk about dietary modifications. If it did not turn up to Celiac disease, we could discuss other dietary ways to control the symptoms that they were experiencing.
I would suggest that the client have the screening test done to determine if they have Celiac Disease. Even though the client may or may not have a family history of this disease, the article mentions that Celiac Disease has been under diagnosed prior to the newest screening procedures. This means that the client may not know they have a family history because family members may not have been diagnosed correctly in the past.
Annie,
I completely agree with you regarding using the gluten free diet as a way of diagnosing Celiac Disease, especially if the other screening tests are inconclusive. This may be the most effective way of determining if the person is truly gluten intolerant.
I would inform a client who suspects having celiac disease, with no known family history,that it is possible to still have the disease without genetics involved. Someone who has a first degree or second degree relative is at a much greater risk of having celiac disease but genetics are not soley the determinant of diagnosing celiac disease. The next step from there is telling the client to make an appointment with their doctor and to restrict gluten containing foods until they rule out celiac disease.
Annie,
Commenting on how a client should learn all they can about their family history is a good idea. Also, letting them know the struggles they are going to have ahead of time with a gluten restriction is always a good thing so we aren't setting them up for failure.
I would suggest avoiding gluten products, if the patient does in fact have Celiac, this would prevent further damage and hopefully start to repair damage that has already happened. As I was educating the patient on the importance of decreasing the damage I would assure them however the strict gluten-free diet will be there are a lot of resources for support and help for them.
I would suggest that the client try a gluten free diet for 2 weeks and see if the symptoms subside. This would be a simple, inexpensive way to determine if it is celiac disease that is causing the problems. If the client still has symptoms after the 2 week period than go see their physician to determine if it is something else.
I think Vanessa brought up a very good point about causing false negatives if the the testing was done after the diet was started. I think the best recommendation would be to have them speak to their doctor, and take it from there.
I would first discuss signs and symptoms that they are experiencing that may lead them to think they have Celiac's disease. If they show early signs of the disease, I would then discuss the client's diet. If they are eating foods that would cause indication of Celiac's disease, such as products containing wheat, barley or rye flours, I would suggest that they remove these products from their diet. I would lastly suggest education about the Celiac's Diet. Education about diet is very important with this disease.
Colin made an excellent point. Rather than completing several test by a physician, simply have the client try out the gluten-free diet for two weeks and see if their symptoms subside.
I would ask the client what made them suspect they had celiac disease. Then I would recommend they get tested for the disease. Then I would put them on a gluten-free diet and monitor their response to it.
Katherine,
Great list of symptoms for the patient to use to evaluate themselves.
Although it may not be in the family history, I would recommend that the pt get tested for celiac disease. Another good suggestion that I would recommend is to write down foods that the pt is eating and also when he/she is having episodes that resemble Celiac which include diarrhea, abd cramping and distention, feeling fatigued, wt loss, and vomiting. After proper testing and confermation from a GI doctor, then I would begin the education process with Celiac disease.
Steph,
I completely agree with you that in order to be diagnosed, a pt must continue to eat gluten so that the MD may be able to recognize inflammation and other signs. If a pt chooses not to get tested, I would definitely recommend to eliminate gluten in the diet as a precaution and see if symptoms (if any are present)reside.
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