Discussions By Condition: I cannot get a diagnosis.

Digestive problems, jaw/joint pain.

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: smockron
  • March 4, 2009
  • 10:00 PM

To start off I'm 21 years old, male, 6'3, and somewhat underweight (140 pounds).About three years ago I started to develop a 24/7 headache and jaw pain (TMJ?), as well as a bunch of other symptoms associated with eating many different types of foods. The digestive problems and head/jaw pain may not be related, but they started at pretty much the same time.

Basically whenever I eat wheat, oats, dairy, and many different fruits and vegetables, I'll get bloated and a really crappy "brain fog" feeling within 15 minutes, and sometimes sharp pains in my chest (can be on either side, but it's never both at the same time) Generally diarrhea follows, or at best very irregular bowel movements. I normally have some mild acne, but often times after eating the foods I react badly too(which is practically everything), I'll also get what I think is cystic acne (hard and painful under the skin), as well as really dry skin. Honestly it seems like I can get sick from pretty much anything with carbs/sugar in it, but somethings I can tolerate much better than others, like rice or potato products compared to wheat or oats, and green vegetables compared to tomatoes, red peppers, or onions. I get sick even from eating some stuff in very small amounts.

When I first started getting these symptoms I had no idea they were food related, and I was very sick until I thought I might have celiac disease and took wheat/oats out of my diet. I got somewhat better, but the symptoms didn't entirely go away, and multiple tests for celiacs were negative. I didn't really feel better until I started eating a really low carb diet, but I still feel fatigued all the time either from the poor diet or whatever problem I have. Even if I don't get diarrhea from some carbs like say a gluten-free product made out of rice, I'll still feel crappy after eating it, so I try to only eat stuff like that at night.

I've been to a bunch of different doctors and all bloodwork always comes back normal. I recently had a glucose test for small bacterial overgrowth and that was negative. I have a lot of diabetes in my family, and aside from normal bloodwork all the doctors give me, I've also tested my blood sugar at home before and after eating, and it's always within normal range.

I've had a colonscopy + endoscopy, and everything was normal except minor inflammation, "scattered reactive nodules and moderate erythema in terminal ileum"(I have no idea what that means), and "thin gastric mucosa with poor motility" in stomach. I'm seeing the gaestro again tommarow, but I don't even know what else to ask to test me for.

The headache and jaw pain has not gone away at all since this started. I've seen a few TMJ dentists, but none of the splints or pain meds I've tried have helped at all. I really have no idea what to do about this, or if it's even related to my digestive problems, but they started at the same time.

About six weeks ago I started to get clicking/cracking in my wrists and knuckles all the time. I didn't hurt, it just felt uncomfortable, like my bones were hitting each other or something. But now my hands (wrists especially) are really starting to hurt. It sounds like arthritis, but could I really have that at 21? Could it be related to my jaw pain or digestive problems?

A couple other things that probably aren't related but I'll mention anyway. When I was a kid up until about 15-16 I was a little overweight, at which point I lost a lot of weight and have been very thin since. At around 13-15 I also had daily stomach pains that would last a few minutes, usually a few hours after waking up, everyone dismissed this as "growing pains". Also about a month before the jaw pain and other symptoms started, I had a raised spot in the middle of my chest, slightly to the right side. It didn't hurt or anything, and my campus doctors and general practitioner said it was probably a pulled muscle or something. It's actually still sort of there, but very feint.

I was also on antibiotics for acne a few months before the symptoms started, and got bad stomach pains actually while taking them. I've eating lots of yogurt (which actually makes me sick, even pure plain yogurt), soy yogurt, and probiotics in case it was some kind of "gut flora" issue, but none of this helped.

It would be amazing if anyone could help or had any ideas on any of this. In case anyone asks I take a daily multi-vitiman. And sorry for the poorly formatted run on post.

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  • To start off I'm 21 years old, male, 6'3, and somewhat underweight (140 pounds).About three years ago I started to develop a 24/7 headache and jaw pain (TMJ?), as well as a bunch of other symptoms associated with eating many different types of foods. The digestive problems and head/jaw pain may not be related, but they started at pretty much the same time. Basically whenever I eat wheat, oats, dairy, and many different fruits and vegetables, I'll get bloated and a really crappy "brain fog" feeling within 15 minutes, and sometimes sharp pains in my chest (can be on either side, but it's never both at the same time) Generally diarrhea follows, or at best very irregular bowel movements. I normally have some mild acne, but often times after eating the foods I react badly too(which is practically everything), I'll also get what I think is cystic acne (hard and painful under the skin), as well as really dry skin. Honestly it seems like I can get sick from pretty much anything with carbs/sugar in it, but somethings I can tolerate much better than others, like rice or potato products compared to wheat or oats, and green vegetables compared to tomatoes, red peppers, or onions. I get sick even from eating some stuff in very small amounts.When I first started getting these symptoms I had no idea they were food related, and I was very sick until I thought I might have celiac disease and took wheat/oats out of my diet. I got somewhat better, but the symptoms didn't entirely go away, and multiple tests for celiacs were negative. I didn't really feel better until I started eating a really low carb diet, but I still feel fatigued all the time either from the poor diet or whatever problem I have. Even if I don't get diarrhea from some carbs like say a gluten-free product made out of rice, I'll still feel crappy after eating it, so I try to only eat stuff like that at night.I've been to a bunch of different doctors and all bloodwork always comes back normal. I recently had a glucose test for small bacterial overgrowth and that was negative. I have a lot of diabetes in my family, and aside from normal bloodwork all the doctors give me, I've also tested my blood sugar at home before and after eating, and it's always within normal range. I've had a colonscopy + endoscopy, and everything was normal except minor inflammation, "scattered reactive nodules and moderate erythema in terminal ileum"(I have no idea what that means), and "thin gastric mucosa with poor motility" in stomach. I'm seeing the gaestro again tommarow, but I don't even know what else to ask to test me for.The headache and jaw pain has not gone away at all since this started. I've seen a few TMJ dentists, but none of the splints or pain meds I've tried have helped at all. I really have no idea what to do about this, or if it's even related to my digestive problems, but they started at the same time.About six weeks ago I started to get clicking/cracking in my wrists and knuckles all the time. I didn't hurt, it just felt uncomfortable, like my bones were hitting each other or something. But now my hands (wrists especially) are really starting to hurt. It sounds like arthritis, but could I really have that at 21? Could it be related to my jaw pain or digestive problems?A couple other things that probably aren't related but I'll mention anyway. When I was a kid up until about 15-16 I was a little overweight, at which point I lost a lot of weight and have been very thin since. At around 13-15 I also had daily stomach pains that would last a few minutes, usually a few hours after waking up, everyone dismissed this as "growing pains". Also about a month before the jaw pain and other symptoms started, I had a raised spot in the middle of my chest, slightly to the right side. It didn't hurt or anything, and my campus doctors and general practitioner said it was probably a pulled muscle or something. It's actually still sort of there, but very feint.I was also on antibiotics for acne a few months before the symptoms started, and got bad stomach pains actually while taking them. I've eating lots of yogurt (which actually makes me sick, even pure plain yogurt), soy yogurt, and probiotics in case it was some kind of "gut flora" issue, but none of this helped.It would be amazing if anyone could help or had any ideas on any of this. In case anyone asks I take a daily multi-vitiman. And sorry for the poorly formatted run on post.I know you didn't mention sleeping issues at all, but check out Chronic Fatigue Syndrome. You have many of its symptoms.
    Anonymous 42789 Replies
    • August 24, 2009
    • 10:03 AM
    • 0
    Flag this Response
  • To start off I'm 21 years old, male, 6'3, and somewhat underweight (140 pounds).About three years ago I started to develop a 24/7 headache and jaw pain (TMJ?), as well as a bunch of other symptoms associated with eating many different types of foods. The digestive problems and head/jaw pain may not be related, but they started at pretty much the same time. Basically whenever I eat wheat, oats, dairy, and many different fruits and vegetables, I'll get bloated and a really crappy "brain fog" feeling within 15 minutes, and sometimes sharp pains in my chest (can be on either side, but it's never both at the same time) Generally diarrhea follows, or at best very irregular bowel movements. I normally have some mild acne, but often times after eating the foods I react badly too(which is practically everything), I'll also get what I think is cystic acne (hard and painful under the skin), as well as really dry skin. Honestly it seems like I can get sick from pretty much anything with carbs/sugar in it, but somethings I can tolerate much better than others, like rice or potato products compared to wheat or oats, and green vegetables compared to tomatoes, red peppers, or onions. I get sick even from eating some stuff in very small amounts.When I first started getting these symptoms I had no idea they were food related, and I was very sick until I thought I might have celiac disease and took wheat/oats out of my diet. I got somewhat better, but the symptoms didn't entirely go away, and multiple tests for celiacs were negative. I didn't really feel better until I started eating a really low carb diet, but I still feel fatigued all the time either from the poor diet or whatever problem I have. Even if I don't get diarrhea from some carbs like say a gluten-free product made out of rice, I'll still feel crappy after eating it, so I try to only eat stuff like that at night.I've been to a bunch of different doctors and all bloodwork always comes back normal. I recently had a glucose test for small bacterial overgrowth and that was negative. I have a lot of diabetes in my family, and aside from normal bloodwork all the doctors give me, I've also tested my blood sugar at home before and after eating, and it's always within normal range. I've had a colonscopy + endoscopy, and everything was normal except minor inflammation, "scattered reactive nodules and moderate erythema in terminal ileum"(I have no idea what that means), and "thin gastric mucosa with poor motility" in stomach. I'm seeing the gaestro again tommarow, but I don't even know what else to ask to test me for.The headache and jaw pain has not gone away at all since this started. I've seen a few TMJ dentists, but none of the splints or pain meds I've tried have helped at all. I really have no idea what to do about this, or if it's even related to my digestive problems, but they started at the same time.About six weeks ago I started to get clicking/cracking in my wrists and knuckles all the time. I didn't hurt, it just felt uncomfortable, like my bones were hitting each other or something. But now my hands (wrists especially) are really starting to hurt. It sounds like arthritis, but could I really have that at 21? Could it be related to my jaw pain or digestive problems?A couple other things that probably aren't related but I'll mention anyway. When I was a kid up until about 15-16 I was a little overweight, at which point I lost a lot of weight and have been very thin since. At around 13-15 I also had daily stomach pains that would last a few minutes, usually a few hours after waking up, everyone dismissed this as "growing pains". Also about a month before the jaw pain and other symptoms started, I had a raised spot in the middle of my chest, slightly to the right side. It didn't hurt or anything, and my campus doctors and general practitioner said it was probably a pulled muscle or something. It's actually still sort of there, but very feint.I was also on antibiotics for acne a few months before the symptoms started, and got bad stomach pains actually while taking them. I've eating lots of yogurt (which actually makes me sick, even pure plain yogurt), soy yogurt, and probiotics in case it was some kind of "gut flora" issue, but none of this helped.It would be amazing if anyone could help or had any ideas on any of this. In case anyone asks I take a daily multi-vitiman. And sorry for the poorly formatted run on post.It's definitly an auto immune disease, lupus, R.A or one of the related conditions. I had may of the symptoms you have mentioned and my G.P was sure it was Lupus, although the tests were only "weakly positive", its kind of tough to arrive at a conclusive diagnosis with auto immumne problems as several conditions have similar symptoms. Somthings in the diet often sets off the problem like, I find milk, coffee and tea as well as white bread, soft drinks, alcohol and anything with sugar or packaged stuff makes it worse. Sometimes it goes into remission for no apparent reason. Do check get tests done for R.A or Lupus. Its mostly (but not always) hereditary. Good luck, hope you get better soon!
    Anonymous 42789 Replies
    • September 9, 2009
    • 02:48 AM
    • 0
    Flag this Response
  • burning hand pain and digestive upset after eating can be a sign of Fabry's Disease. Certain veggies, particularly cooked onions, contain a polysaccharide which can only be digested by an enzyme which is lacking in Fabry's. Google "Fabry's Disease" to find out more. You don't have to have all the signs and symptom's, especially if you're female, for females can have milder disease.Some symptoms of Fabry's:Burning pain in hands and/or feetringing in the ears with eventual reduction in hearingabdominal cramping or gas or diarrhea shortly after eatingearly cataractsmay have corneal verticillata (faint swirl deposits in the corneas only observable by an eye doctor using a slit-lamp biomicroscope.corneal arcus (early, or more pronounced than usual for age)huffing and puffing (may signal heart disease caused by Fabry's)protein in urineRaynaud's and cold intolerancedecreased sweating, and heat intolerancehypothyroidismosteopeniajoint and body painIt's genetic. Men can inherit it only from their mothers. Females can inherit it either from a mother or father. If you think you have it take a list of all your Fabry's symptoms, and those of your family members to a neurologist or geneticist. Females will need the genetic GLA test, for the other cheaper test used for males is not reliable for females.
    Anonymous 42789 Replies Flag this Response
  • Your story is the same as mine... I have Crohn's disease. I am 34 now and have had it my whole life! NO ONE belived me when I was sick, my mom thought I was faking it. Needless to say I was diagnosed when I was 23.I hope by now you have been properly diagnosed. Would love to hear a response from you.Peace, Sandra
    Anonymous 42789 Replies Flag this Response
  • Your story is the same as mine... I have Crohn's disease. I am 34 now and have had it my whole life! NO ONE belived me when I was sick, my mom thought I was faking it. Needless to say I was diagnosed when I was 23.I hope by now you have been properly diagnosed. Would love to hear a response from you.Peace, Sandrayou have celiac disease.
    Anonymous 42789 Replies Flag this Response
  • I hope you ended up finding the answer to your issue? I have one which is very possibly your answer. The fact you also have diabetes in your family fits it too. Honestly it seems like I can get sick from pretty much anything with carbs/sugar in it, but somethings I can tolerate much better than others, like rice or potato products compared to wheat or oats, and green vegetables compared to tomatoes, red peppers, or onions. I get sick even from eating some stuff in very small amounts. When it comes to issues with carbs.. symptoms could be being caused by insulin issues eg hyperinsulinemia (high insulin levels... its a prediabetic state before one develops diabetes so if you have this and dont want to develop the diabetes which at some time will follow it, you need to get your diet better OR YOU WILL get diabetes). Eatting carbs, triggers of insulin. I have hyperinsulinemia myself and can be getting very bad symptoms 15-20 mins after I eat carbs (at times faster). Insulin issues can cause a huge range of symptoms (stomach bloating and feeling brain foggy are a couple of most common symptoms from it). It is an issue that actually few medical people understand well (as they seem to focus on glucose instead of the insulin).. even the mayo clinic say hyperinsulemina dont cause symptoms unless it affects the sugar levels .. but for many of us, the issue actually does give us symptoms. I can tell when I eat carbs due to it by my symptoms even if I didnt know carbs were in the food I ate. I see a doctor who specialises in that and who has helped many who were very unwell or even disabled due to it and do get symptoms from it like myself. The symptoms I get from hyperinsulinemia are it makes it hard for me to get up in morning due to fatigue (cause my body produces to much in response to carbs, it is still up in the mornings from the night before), sore throats, severe mood swing (hits me about 15 mins after eatting it), tiredness but as I said it causes different symptoms in different people. You should have a 2 hr glucose tolerance test in which insulin levels (they are commonly done without the insulin levels being measured) are included to see if you have this issue or not. http://www.agale.com.au/PANDORA.htm (has a list of the things insulin issues can cause or which are connected to insulin issues). Thou you dont have CFS.. you do have some symptoms of it.. same kinds which can be caused by insulin. I suggest you read http://www.agale.com.au/CFS.htm as will give you more of an idea of what these insulin issues do do to some of us. Note irritable bowel syndrome is on the list of things insulin issue can be related too.. There are some common things which can trigger off IBS.. onions and red peppers (along with spices) are well known for triggering off IBS. i suggest you research IBS triggers and work out which of them are triggering off your bowel issues (coffee may also trigger IBS). Be aware that not just breads and cereals (complex carbs) and simple carb (sugar) can trigger off insulin issues but MANY other foods have carbs in them too which can trigger. Fruit contains carb.. fructose is a carb (tomatoes are fruits). Milk contains carbs (lactose is a carb). Some veg are high carb eg pototoes, corn etc My specialst has me on a very low carb diet (more extreme then a diabetic diet).. Im only allowed one small piece of fruit per day, no simple sugars, limited complex carbs (no potatoes and I myself find i can only have one piece of bread per day or i set off symptoms)... I find I have to limit my milk to only 1-2 glasses per day otherwise I get symptoms and Ive been told to not eat any more then 10 nuts per day (due to their carbs). If you have a carb insulin issue.. all those individual things containing carbs really add up when you add together each thing so you got to consider what you've previously already had that day. If you have an insulin issue causing symptoms you need to be restricting your carbs and eatting meat 3 times daily preferable even before you eat anything else (as it helps stop the insulin issue as it helps to balance it). You may want to try something like the restricting the carbs as far as the Atkins diet goes (which is very low carb) for a while. (I dont recommend buying Atkins products thou as thou they are meant to be for low carb diets, they for myself are still too high in carbs and there are much better low carb products on the market). One can recover from hyperinsulinemia in time with changing ones diet but if you have it you will be always predisposed to getting it and then to getting diabetes. A helpful hint.. if you have milk products.. make sure they are FULL milk ones not skim milk.. as full milk is better for someone with this issue then skim or reduced cream ones and using watered down cream is better then milk. (that's what my specialist has told me.. Ive thou forgotten now why) Dont forget too that high protein helps to balance insulin so you need to be having high protein things eg meat, eggs. I start off each day with 2 hard boiled eggs and some breakfast steak.
    taniaaust1 2267 Replies Flag this Response
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