Discussions By Condition: I cannot get a diagnosis.

Something bigger?

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Jess, eh?
  • June 29, 2009
  • 08:52 PM

I'm trying to find out what is wrong with my boyfriend of 3 years, we've been to hand fulls of doctors, been through $1000's of dollars, and we got a diagnosis, but there's something else wrong. And I was wondering if anyone had any ideas??

He's 21 years old.

Abdominal problems started 2 1/2 years ago, he had severe abdominal pain, and diarrhea. It severely impacted his life, lost jobs, stopped being social, and stopped leaving the house.

July/August 2008 -He had a colonoscopy which came up perfect

So his previous doctor-who was an internalist said he had irritable Bowel Syndrome(IBS)

March 2009-We went to an allergist and she suggested he had Celiac disease, ran the tests, and it came up positive.

Immediatly we started him on a gluten free diet, and he improved tremendously! For about a week or 2, and then started to go down hill.

April 2009 -He was allergy test and came up allergic to: Corn, Rice, Milk, and Chicken.

So we cut out all of those.

He then started having pain in his chest, shoulders, and arms, and isalso having headaches(which is unusual). And he went to his new doctor and he put him on Muscle Relaxants, and Pain Killers.

The pain spread to his entire back, and still in his chest, shoulders, and arms.

He was put on antibiotics today for a Urinary Tract Infection(UTI)

And his is still having abdominal problems.

And he's lost 40lbs since December 2008, 40lbs in 6months!



I can't help but think there is a bigger picture here! One thing is happening after another, it's severly impacting his life, and he's never "normal".

July 2007- Abdominal pain, diarrhea
August 2008- Colonoscopy -fine
September 2008- "diagnosised" with Irritable Bowel Syndrome
March 2009- Diagnosed with Celiac Disease
April 2009 -Allergic to Corn, Rice, Milk, Chicken
June 2009- Pain in the chest, shoulders, arms
-Headaches(Unusual)
-Spread to his entire back
June 29th -Urinary Tract Infection


Throughout all this time we'd put him on countless diets trying anything he could thing of, cutting him down to lean meats, and veggies, and crackers.

He's now on a diet of Pork Chops, steak, Carrots, Peas, Grapes, and Water.

Any ideas,or suggestions, or ANYTHING would be greatly appriciated!!

Thank you for reading, I know it's long.

Reply Flag this Discussion

9 Replies:

  • Well, it's quite common to suspect a single underlying problem in cases where a multitude of symptoms are all arising within the same general time frame. Just so you're aware, true food allergies are extremely rare, despite countless persons who attest to such difficulties. The whole food allergy premise tends to be broadened more by purely subjective claims that symptoms abate once certain foods are restricted from diet, which sorely lacks any degree of objective or clinical evidence to support the outcome. Cause and effect thinking typically brings this about, and care must be exercised because the mind is quick to make such associations in the absence of facts. A placebo effect is very often encountered in cases where allergies are identified in an individual with a functional bowel disorder. For a short period, an identifiable cause produces relief that it was not something more serious, a factor which can very graphically effect the nature of physical symptoms associated with the GI tract. Typically, within several weeks, patterns resume and worry increases once again. Based upon your description and the tests which have ruled out the major concerns in the presence of such symptoms, I would initially agree that the young man's symptoms are very similar to other patients with Irritable Bowel Syndrome. Realize that changes in function of the bowel or GI tract can produce very graphic symptoms in certain cases and patients feel extremely ill, in rare instances incapacitated to some extent. With IBS, it really doesn't matter as much what is eaten as how much and the style in which it's eaten. Drinking beverages with meals rather than afterward for patients with IBS is not a good thing in most cases, with variable results that in most cases produce rapid discomfort, bloating, pain followed by either diarrhea, constipation or a mixed result depending upon the predominance. Additionally, eating any sooner than two or three hours before lying down is also not well-advised, causing digestion to become hampered to some extent. Digestive aids such as fiber tend to exacerbate rather than calm symptoms in the IBS patient as well. It is better in most instances of the syndrome to eat very small meals about six times per day and drink most beverages after, rather than during, meals. Meals should be eaten at roughly the same time each day and consumed slowly. Patients with IBS can often complain of tightness in the chest or inability to breath deeply enough, sometimes accompanied by light-headedness, difficulty swallowing, sweating and a growing rumination that something is seriously wrong but unable to be detected. Having discussed the general ramifications of IBS, I would suggest that it's wise to rule out things like a motility disorder by having studies performed by a gastroenterologist. IBS is a diagnosis of exclusion, meaning that when the nature of the syndrome cannot be attributed to an organic cause, then IBS is the most likely underlying culprit. The fact that your boyfriend's symptoms have persisted for three years would also point more directly at IBS, since organic disease typically would have grown more complicated subsequent to the passage of time indicated. Also realize that a large percentage of patients with symptoms of IBS also demonstrate some of the features of anxiety or depression. Muscle aches, joint pain and general malaise are all symptoms associated with mood disorders. Physical symptoms do not necessarily have a direct relationship with physical disease, so it's important to consider whether anxiety or depression may be playing a role. Once any consideration to, and actual performance of, motility tests have been brought into the equation, a more focused effort should be directed at treating the symptoms as IBS if the motility tests prove negative. It is also common for patients so afflicted to experience hyperacidity of various presentation and tests are available to determine whether a problem exists. He'll be fine. The passage of time alone, in the presence of fairly regular and unwavering symptoms, would summarily rule out the more serious concerns for these symptoms, ie cancer etc. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Can you think back to before he had his initial problems - did he take any antibiotics in the six months prior? Has he ever had a stool exam done to rule out pathogens such as clostridium difficile infection? If he hasn't had c. diff ruled out thru a stool test, then he needs to have this ruled out. Clostridium difficile infection can cause pseudomembranous colitis, a very bad infection. I had this six years ago and thought I was going to die:(. PLEASE make sure this has been ruled out. It's a simple stool test but doctors often overlook this increasingly common and serious problem. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I used the antenna search you gave me, and it says theres 30 towers and 98 antenna's in a 4 mile radius of our house. A lot of it seems similar, but how do you go about diagnosing it?? And isthe only trestment avoidence?? What exactly do you have to do to control your symptoms? Thank you for the reply!
    Jess, eh? 6 Replies Flag this Response
  • Well, it's quite common to suspect a single underlying problem in cases where a multitude of symptoms are all arising within the same general time frame. Just so you're aware, true food allergies are extremely rare, despite countless persons who attest to such difficulties. The whole food allergy premise tends to be broadened more by purely subjective claims that symptoms abate once certain foods are restricted from diet, which sorely lacks any degree of objective or clinical evidence to support the outcome. Cause and effect thinking typically brings this about, and care must be exercised because the mind is quick to make such associations in the absence of facts. A placebo effect is very often encountered in cases where allergies are identified in an individual with a functional bowel disorder. For a short period, an identifiable cause produces relief that it was not something more serious, a factor which can very graphically effect the nature of physical symptoms associated with the GI tract. Typically, within several weeks, patterns resume and worry increases once again. Based upon your description and the tests which have ruled out the major concerns in the presence of such symptoms, I would initially agree that the young man's symptoms are very similar to other patients with Irritable Bowel Syndrome. Realize that changes in function of the bowel or GI tract can produce very graphic symptoms in certain cases and patients feel extremely ill, in rare instances incapacitated to some extent. With IBS, it really doesn't matter as much what is eaten as how much and the style in which it's eaten. Drinking beverages with meals rather than afterward for patients with IBS is not a good thing in most cases, with variable results that in most cases produce rapid discomfort, bloating, pain followed by either diarrhea, constipation or a mixed result depending upon the predominance. Additionally, eating any sooner than two or three hours before lying down is also not well-advised, causing digestion to become hampered to some extent. Digestive aids such as fiber tend to exacerbate rather than calm symptoms in the IBS patient as well. It is better in most instances of the syndrome to eat very small meals about six times per day and drink most beverages after, rather than during, meals. Meals should be eaten at roughly the same time each day and consumed slowly. Patients with IBS can often complain of tightness in the chest or inability to breath deeply enough, sometimes accompanied by light-headedness, difficulty swallowing, sweating and a growing rumination that something is seriously wrong but unable to be detected. Having discussed the general ramifications of IBS, I would suggest that it's wise to rule out things like a motility disorder by having studies performed by a gastroenterologist. IBS is a diagnosis of exclusion, meaning that when the nature of the syndrome cannot be attributed to an organic cause, then IBS is the most likely underlying culprit. The fact that your boyfriend's symptoms have persisted for three years would also point more directly at IBS, since organic disease typically would have grown more complicated subsequent to the passage of time indicated. Also realize that a large percentage of patients with symptoms of IBS also demonstrate some of the features of anxiety or depression. Muscle aches, joint pain and general malaise are all symptoms associated with mood disorders. Physical symptoms do not necessarily have a direct relationship with physical disease, so it's important to consider whether anxiety or depression may be playing a role. Once any consideration to, and actual performance of, motility tests have been brought into the equation, a more focused effort should be directed at treating the symptoms as IBS if the motility tests prove negative. It is also common for patients so afflicted to experience hyperacidity of various presentation and tests are available to determine whether a problem exists. He'll be fine. The passage of time alone, in the presence of fairly regular and unwavering symptoms, would summarily rule out the more serious concerns for these symptoms, ie cancer etc. Best regards, J Cottle, MD With the food allergies how would they be rare?? We had him tested on his back first and nothing really came up, but they noticed something cause they did some on his arms and that when it came up positive for: Corn, Rice, Chicken, and Milk. So those tests really don't mean anything?? When they first diagnosised him with IBS back in 2008, we followed all those rules "drinking after/ Small meals,multiple times a day" But it didn't help and when we were "at IBS" he was only eating: Very lean pork chops, chicken, Peas, Saltine Crackers, and I'm pretty sure that was it, it's been awhile and he's been on so many diets it's hard to remember which one's which. The thing that we ruled out IBS was because he tested positive for Celiac Disease, so is it possible he has both?? He was JUST diagnosed wth Celiac in March, then the other allergies in April His doctor said give him atleast 3 to 6 months for his stomach to "settle down" after the Celiac diagnosis, because his body needs to heal. I do think it's celiac because he stopped eating Gluten for about a week, and he accidentally had some and it was by far the worst he had felt. And we were told there's no cure for IBS?? So how is there a way to treat it other than changing the way he eats. But when we did that it didn't help, so I'm not sure. But I'm not doctor lol He use to really work himself up about his symptoms and it use to make it worse, but after taking out Gluten, he really doesn't get as much symptoms and he doesn't worry as much about it. When he use to have trouble on a scale of 1-10 (10 being worst) He was a 9/10, 24/7 and now he's about 2-5 but it varies. Sunday he finished his antibiotics, but the antibiotics ended up making him sick, so it was a win-lose it got rid of the infection, but made him sick. Thank you for some more information
    Jess, eh? 6 Replies Flag this Response
  • Can you think back to before he had his initial problems - did he take any antibiotics in the six months prior? Has he ever had a stool exam done to rule out pathogens such as clostridium difficile infection? If he hasn't had c. diff ruled out thru a stool test, then he needs to have this ruled out. Clostridium difficile infection can cause pseudomembranous colitis, a very bad infection. I had this six years ago and thought I was going to die:(. PLEASE make sure this has been ruled out. It's a simple stool test but doctors often overlook this increasingly common and serious problem. Best wishesDOM He hasn't done a stool sample yet. They gave him a test kit about a month but he never did it. His doctor said that should have been one of the first things done, but it never was(hence again his original doctor is no good) Incase of parasites. But We'll hopefully get that done soon! Thank you!
    Jess, eh? 6 Replies Flag this Response
  • He hasn't done a stool sample yet. They gave him a test kit about a month but he never did it. His doctor said that should have been one of the first things done, but it never was(hence again his original doctor is no good) Incase of parasites. But We'll hopefully get that done soon! Thank you! any update. I was a healthy 21 yearold male 3 years ago when me and my buddy got hit with alot of those symptoms. What was his job? We were plumbers Had alot of the same tests. You should try a University Hospital in a big city. Im on my way to Rush in Chicago Tuesday. We will see. Either way let me know whats goin on with him
    chevyy1212 19 Replies
    • August 22, 2009
    • 07:51 PM
    • 0
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  • There are different types of Celiac Disease. Check out this website:http://www.wrongdiagnosis.com/c/celiac_disease/subtypes.htm
    gr8tful 175 Replies
    • August 23, 2009
    • 10:21 PM
    • 0
    Flag this Response
  • Okay, let me state several follow-up points to this thread and I'll leave it at that. A great deal of presumptions are being made based upon the subjective observations of the young man in question and his variable response to treatment over time. It's very important to refrain from using casual impressions to support any type of diagnosis. Again, true food allergies are rare. Celiac sprue is an autoimmune response to gluten. A biopsy is actually necessary to confirm the disorder, which is far more uncommon that many people believe to be the case. The tests that would have indicated an allergy to the corn, milk, rice or chicken are absolutely a waste of time and the results are at the absolute best, ambiguous. Even with the diet that is mentioned being presently adhered to, he is obviously still experiencing difficulty or there would be news of his remission and recovery from symptoms. The relationship here with regard to IBS being diagnosed at some point, is that gluten-based products such as wheat etc, also constitute high fiber, which is often severely aggrevating to the GI tract of patients with IBS, so it would certainly make sense that abstaining for a week or so and feeling better, then re-establishing the consumption of such products and feeling worse is just as likely to be a response relating to IBS as much as Celiac sprue. Again, Celiac disease absolutely requires invasive diagnostic tests for confirmation and not simply restrictions or changes in diet. When you say that your boyfriend used to really work himself up and make his symptoms worse, this is by far a greater indicator that the GI difficulty is more related to IBS, or in other words a functional disorder, than anything associated with Celiac disease. An autoimmune response such as that associated with Celiac sprue is going to respond similarly regardless of how your boyfriend feels about it. Also realize that IBS can make a person feel extremely ill in the general sense, with fatigue and oftentimes incapacitating abdominal pain among other symptoms. It may be worth having your boyfriend speak with his doctor about directing treatment towards the emotional factors, ie getting worked up, to determine any positive effect on the GI symptoms. Again, unless biopsy at the level of the small intestine proves conclusively that Celiac sprue is present, then my impression is that the young man is indeed suffering from IBS. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • August 23, 2009
    • 10:45 PM
    • 0
    Flag this Response
  • Hi again, Back for more help, because there is no progress. My boyfriend went to the University of Michigan, and met with the head of Gastroenterology! And he didn't find anything. He did rule out Celiac disease, but diagnosed him with Gluten Hypersensitivity. Because they ran a genetic test for Celiac. But pretty much told us to get a second opinion for the rest of his problems because he didn't know. At U of M he had a glucose, and frustose breath test. The fructose test came back slightly positive. He then went to a Nutritionist/Holistic Doctor, who started giving him supplements, to try and resolve his symptoms, but that didn't work. He just went to Cleveland Clinic because they're number 2 in the nation for gastrointestinal problems. But once again no help atleast yet. The doctor wouldn't get off the notion of "you don't have Celiac disease" Which we already knew, because U of M told us that. And says it must be IBS. In Cleveland he saw a nutritionist who is going to start him on a frustose free, gluten free, semi IBS diet. He had a CAT scan 2/9/11 and it came back fine. He has a small kidney stone, and a slightly fatty liver. He also went ott he Chronic abdominal pain clinic, and they suggested giving him "nerve blockers" for the Celiac nerve. But we're not sure about that. He goes 2/18/11 for a endoscopy to rule out Celiac disease. Which is stupid because you need to be ingesting gluten inorder to get a proper result, and we already know he doesn't! Then he goes back 3/16/11 to another doctor at Cleveland Clinic, and we'll see how that goes. So I'm hoping someone can come up with some suggestions for us, because this has been going on too long, and Cleveland Clinic was the end of the road and I'm tired of getting IBS! Do you also have suggestions about the nerve blocking shots? If they are a good idea or not? Thanks
    Jess, eh? 6 Replies
    • February 11, 2011
    • 10:32 PM
    • 0
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