My story- Doctors Don't Know What is Wrong

[Nate92]

Brief Bio/Description: I am a 20 year old college student whom plays tennis in the Spring. I am approximately 5'10" and 191 pounds. I have experienced a low quality of life though, since I was twelve years old.

Symptoms: depression, anxiety, constant fatigue, poor motivation, lesser erections, weight gains that are difficult to lose, and poor gains in muscle despite weight lifting

I feel run down. It's hard for me to function in daily life.

Additions (February):

The fatigue is a major symptom lately. Also brain fog.

Peculiarly, after I worked out recently I had two marks on both my shoulders, similar to scratches. Judging from eye, about 5 inches long. I assumed they were stretch marks. They disappeared the day after. I know that high cortisol can cause stretch marks. Obviously, I have low cortisol, but I understand there are cases in which the cortisol rises before it falls. These were not marks from lifting.

When I used the bathroom, I noticed blood on the toilet paper this morning.

When I cough, I feel a pain in the bottom left of my head. Close to my neck.

I don't know if the last two are relevant.

Addition (March): I am experienced occasional chest pains. It is a more intense pain at the bottom of my sternum. It can move up into my chest cavities.
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Results:

Test One- Issued by my Family Doctor

Testosterone, Serum: 265 (348-1197)
"""""
Test Two

TSH: 2.360 (0.450-4.500)
LH: 4.2 (1.7-8.6)
FSH: 1.1 (1.5-12.4)
Testosterone, Serum: 330 (348-1197)
Prolactin: 8.5 (4.0-15.2)
"""""
Test Three- Issued by an Endocrinologist

Free Testosterone(Direct): 9.4 (9.3-26.5)
Testosterone, Total, Lc/Ms: 253.9 (348-1197)
LH: 4.1 (1.7-8.6)
FSH: 1.1 (1.5-12.4)
"""""
Test Four- Issued by an Endocrinologist-- I had been off Prozac for one week at this point. This is the only test I was off it.

Cortisol: 20.8 (2.3-19.4)
TSH: 4.2: (0.450-4.500)

I had an MRI done, and the results came back clear.
"""""
Test Five- Test I requested-- Issued by Family Doctor-- This test was after taking Synthroid 50mcgs

Thyroid Panel With TSH
TSH: 1.930 (0.450-4.500)
Thyroxine (T4): 9.6 (4.5-12.0)
T3 Uptake: 34 (24-39)
Free Thyroxine Index: 3.3 (1.2-4.9)
Thyroid Antibodies
Thyroid Peroxidase (TPO) Ab: 8 (0-34)
Antithyroglobulin Ab: <20 (0-40)
Luteinizing Hormone (LH): 7.3 (1.7-8.6)
FSH, Serum: 1.3 (1.5-12.4)[/U]
Calcitonin, Serum: <2.0 (0.0-8.4)
Reverse T3, Serum: 21.5 (9.2-24.1)
Vitamin D, 25-Hydroxy: 32.6 (30.0-100.0)
Triiodothyronine (T3): 115 (71-180)
Estrogens, Total: 83 (40-115)
Ferritin, Serum: 70 (30-400)
Triiodothyronine, Free, Serum: 3.7 (2.0-4.4)

Additions (February): Obviously, my Adrenal Glands are struggling. I wonder how my anxiety and stress come into play.

Salivary Cortisol Test
Morning - 3.8 ng/mL (7.0-10)
Midday - 3.1 ng/mL (3.0-6.0)
Evening - 2.5 ng/mL (2.5-4.0)
Night - 2.2 ng/mL (<1.5)

Recently, it came to my attention that Gluten Intolerance can cause a wide array of hormonal imbalances. I didn't expect anything, however my T-Transglutaminase (Ttg) lgg is high.

Celiac Disease Comprehensive:
T-Transglutaminase (Ttg) lgg: 8 U/mL (0-5 U/mL)
Immunoglobulin A, Qn, Serum: 102 mg/dL (91-414 mg/dL)
T-Transglutaminase (Ttg) Iga: <2 (0-3)
Deamidated Gliadin Abs, Iga: 3 (0-19)
Deamidated Gliadin Abs, Igg: 6 (0-19)
Endomysial Antibody Iga: Negative

I do not know if this is important, however, these tests were taken at 8 AM. This could cause for the imbalance in some tests, as I had not eaten. I wonder if these are impacted: Calcitonin, Serum; Ferritin, Serum; and/or Vitamin D, 25-Hydoxy.

It is also important to note, I am currently taking: 50mcgs of Synthroid in the morning, 20mgs of Adderall in the morning, and 10mgs of Prozac at night. I started taking Synthroid before the last blood work.

Revision (February): I have bumped my Synthroid to 75mcgs for no other reason that optimization. I have stopped taking Adderall and Prozac. I know that stimulants can hinder the Adrenal Glands. I felt like the Prozac wasn't worth the hassle at 10mgs. It hindered my sexual performance slightly, and if I wasn't getting much out of it I didn't want to continue. I am taking 3.75mgs of Androgel 1.62%. In addition to these prescription medications, I just began taking Licorice Root and Ashwagandha for stress and my Adrenal Glands, as well as a Rainbow Light's Multivitamin.
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Where I am at Now: My two endocrinologists have diagnosed me with unrelated Hypothyroidism and Hypogonadism caused by poor function of my Thyroid and Pituitary. Both my doctors were sure of their decision so I felt more comfortable, but I am skeptical because it seems unlikely for one my age to suffer from both without an underlying cause.

Revision (February): Now having adrenal fatigue, I am more believing that there is an underlying cause for my endocrine issues. I have an appointment at John Hopkins March 19. I hope that some headway into an accurate diagnosis will be made then.
------------------------------------------------------------------------------------------------------------
Up to Date Medications: Multivitamin, Licorice Root, Ashwagandha, Synthroid, Androgel 1.62%
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I was very active when I was a kid, full of energy. Perhaps I had head trauma. I am thinking this could be Hypopituitarism. Hypothyroidism, what appears to be Secondary Hypogonadism, and now Adrenal Fatigue. Seems like a Hypopituitarism pattern. Any thoughts?

 

[chemman]

Brief Bio/Description: I am a 20 year old college student whom plays tennis in the Spring. I am approximately 5'10" and 191 pounds. I have experienced a low quality of life though, since I was twelve years old.

Symptoms: depression, anxiety, constant fatigue, poor motivation, lesser erections, weight gains that are difficult to lose, and poor gains in muscle despite weight lifting

I feel run down. It's hard for me to function in daily life.

Additions (February):

The fatigue is a major symptom lately. Also brain fog.






Results:

Test One- Issued by my Family Doctor

Testosterone, Serum: 265 (348-1197)
"""""
Test Two

TSH: 2.360 (0.450-4.500)
LH: 4.2 (1.7-8.6)
FSH: 1.1 (1.5-12.4)
Testosterone, Serum: 330 (348-1197)
Prolactin: 8.5 (4.0-15.2)
"""""
Test Three- Issued by an Endocrinologist

Free Testosterone(Direct): 9.4 (9.3-26.5)
Testosterone, Total, Lc/Ms: 253.9 (348-1197)
Looks like hypogonadism to me
LH: 4.1 (1.7-8.6)
FSH: 1.1 (1.5-12.4)
"""""
Test Four- Issued by an Endocrinologist-- I had been off Prozac for one week at this point. This is the only test I was off it.

Cortisol: 20.8 (2.3-19.4)
Serum cortisol of 20.8 makes adrenal insufficiency rather unlikely. Saliva cortisol tests are rather useless from what I have gathered
TSH: 4.2: (0.450-4.500)

I had an MRI done, and the results came back clear.
"""""
Test Five- Test I requested-- Issued by Family Doctor-- This test was after taking Synthroid 50mcgs

Thyroid Panel With TSH
TSH: 1.930 (0.450-4.500)
Thyroxine (T4): 9.6 (4.5-12.0)
T3 Uptake: 34 (24-39)
Free Thyroxine Index: 3.3 (1.2-4.9)
Thyroid Antibodies
Thyroid Peroxidase (TPO) Ab: 8 (0-34)
Antithyroglobulin Ab: <20 (0-40)
Luteinizing Hormone (LH): 7.3 (1.7-8.6)
FSH, Serum: 1.3 (1.5-12.4)[/U]
Calcitonin, Serum: <2.0 (0.0-8.4)
Reverse T3, Serum: 21.5 (9.2-24.1)
Vitamin D, 25-Hydroxy: 32.6 (30.0-100.0)
Triiodothyronine (T3): 115 (71-180)
Estrogens, Total: 83 (40-115)
Ferritin, Serum: 70 (30-400)
Triiodothyronine, Free, Serum: 3.7 (2.0-4.4)

Additions (February): Obviously, my Adrenal Glands are struggling. I wonder how my anxiety and stress come into play.

Salivary Cortisol Test
Morning - 3.8 ng/mL (7.0-10)
Midday - 3.1 ng/mL (3.0-6.0)
Evening - 2.5 ng/mL (2.5-4.0)
Night - 2.2 ng/mL (<1.5)

Recently, it came to my attention that Gluten Intolerance can cause a wide array of hormonal imbalances. I didn't expect anything, however my T-Transglutaminase (Ttg) lgg is high.

Celiac Disease Comprehensive:
T-Transglutaminase (Ttg) lgg: 8 U/mL (0-5 U/mL)
What's up with this? Has anybody looked into celiac disease or other conditions that can cause this value to be elevated.
Immunoglobulin A, Qn, Serum: 102 mg/dL (91-414 mg/dL)
T-Transglutaminase (Ttg) Iga: <2 (0-3)
Deamidated Gliadin Abs, Iga: 3 (0-19)
Deamidated Gliadin Abs, Igg: 6 (0-19)
Endomysial Antibody Iga: Negative

I do not know if this is important, however, these tests were taken at 8 AM. This could cause for the imbalance in some tests, as I had not eaten. I wonder if these are impacted: Calcitonin, Serum; Ferritin, Serum; and/or Vitamin D, 25-Hydoxy.

It is also important to note, I am currently taking: 50mcgs of Synthroid in the morning, 20mgs of Adderall in the morning, and 10mgs of Prozac at night. I started taking Synthroid before the last blood work.

Revision (February): I have bumped my Synthroid to 75mcgs for no other reason that optimization. I have stopped taking Adderall and Prozac. I know that stimulants can hinder the Adrenal Glands. I felt like the Prozac wasn't worth the hassle at 10mgs. It hindered my sexual performance slightly, and if I wasn't getting much out of it I didn't want to continue. I am taking 3.75mgs of Androgel 1.62%. In addition to these prescription medications, I just began taking Licorice Root and Ashwagandha for stress and my Adrenal Glands, as well as a Rainbow Light's Multivitamin.
------------------------------------------------------------------------------------------------------------
Where I am at Now: My two endocrinologists have diagnosed me with unrelated Hypothyroidism and Hypogonadism caused by poor function of my Thyroid and Pituitary. Both my doctors were sure of their decision so I felt more comfortable, but I am skeptical because it seems unlikely for one my age to suffer from both without an underlying cause.

Revision (February): Now having adrenal fatigue, I am more believing that there is an underlying cause for my endocrine issues. I have an appointment at John Hopkins March 19. I hope that some headway into an accurate diagnosis will be made then.
------------------------------------------------------------------------------------------------------------
Up to Date Medications: Multivitamin, Licorice Root, Ashwagandha, Synthroid, Androgel 1.62%
------------------------------------------------------------------------------------------------------------
I was very active when I was a kid, full of energy. Perhaps I had head trauma. I am thinking this could be Hypopituitarism. Hypothyroidism, what appears to be Secondary Hypogonadism, and now Adrenal Fatigue. Did a physician give this diagnosis or are you self-diagnosing? BTW adrenal fatigue is pretty much a BS diagnosis Seems like a Hypopituitarism pattern. Any thoughts?

See above comments

 

[Nate92]

My doctor told me that salivary tests are much more accurate than a one-time serum test. You disagree? I don't know enough about them. I think it would be strange though if all four salivary tests were off in a pattern of adrenal fatigue.

I recently had that done myself at my school doctor. I'm basically my own doctor. I haven't had a chance to discuss it yet. My school doctor called me and told me I was negative for Celiac's Disease, though. Do you think that is something to worry about?

How do you figure adrenal fatigue isn't legitimate? I experience most all symptoms of it.

 

[1erCru]

Did you remove gluten from your diet?

 

[Nate92]

Did you remove gluten from your diet?

I haven't been told not to. I did for a few days on my own accord, but noticed no difference. I might of kept up with it if it was doctor's orders, but I live in a fraternity house so it is very difficult to eat gluten-free.

 

[chemman]

My doctor told me that salivary tests are much more accurate than a one-time serum test. You disagree? I don't know enough about them. I think it would be strange though if all four salivary tests were off in a pattern of adrenal fatigue.

I recently had that done myself at my school doctor. I'm basically my own doctor. I haven't had a chance to discuss it yet. My school doctor called me and told me I was negative for Celiac's Disease, though. Do you think that is something to worry about?

How do you figure adrenal fatigue isn't legitimate? I experience most all symptoms of it.

That's the thing...the symptoms of "adrenal fatigue" are non-specific. It could be a laundry list of things causing your symptoms. But a serum cortisol of over the top of the range almost guarantees you are ok. Trust me. I have studied this extensively in my own quest.

Having all 4 tests being low actually makes sense from a laboratory/methodological standpoint. Systematic error.

You live in a frat house. Ok are you drinking a lot? Any substance use? Caffeine use? How are your sleep patterns?

 

[Nate92]

That's the thing...the symptoms of "adrenal fatigue" are non-specific. It could be a laundry list of things causing your symptoms. But a serum cortisol of over the top of the range almost guarantees you are ok. Trust me. I have studied this extensively in my own quest.

Having all 4 tests being low actually makes sense from a laboratory/methodological standpoint. Systematic error.

You live in a frat house. Ok are you drinking a lot? Any substance use? Caffeine use? How are your sleep patterns?

Okay, I see your point. I am just not sure how they are tested. I drink on weekends. Cut down a lot. No substance use. No caffeine use. And my sleeping pattern has always been bad. I am tired throughout the day and have trouble sleeping at night. It's a terrible cycle. Used to be worse though, with terrible insomnia.

 

[zkt]

I think youre on the right track now. Nothing like excessive partying to fuck up a marginal system. You develop a posetive feedback system with the poor quality of sleep and Etoh. With a Hx of insomnia you mighrt bnefit from a hypnoticsleeping drug and drinking more or less responsibily.

Okay, I see your point. I am just not sure how they are tested. I drink on weekends. Cut down a lot. No substance use. No caffeine use. And my sleeping pattern has always been bad. I am tired throughout the day and have trouble sleeping at night. It's a terrible cycle. Used to be worse though, with terrible insomnia.

 

[hardasnails1973]

I think youre on the right track now. Nothing like excessive partying to fuck up a marginal system. You develop a posetive feedback system with the poor quality of sleep and Etoh. With a Hx of insomnia you mighrt bnefit from a hypnoticsleeping drug and drinking more or less responsibily.

His problem orginated by when he was 12. Why detailed history/time line is crucial in these cases other wise you will not see the entire picture. This was probably the accmulation of several traumatic events eventually leading up to the straw which broke the camels back as it is commonly seen. With out proper history it would be impossible to identify. What people tell you on forums and what really happens tends to 2 different stories when you get them in your office or on your phone.

Going gluten free needs to be done for a minimum of 3-6 months almost up to a year to heal intestinal mucosa.

Drs do not know what wrong because they rarely ask detailed questions to find out why or it may be in an area which is out of their scope of practice.

 

[1erCru]

Cut the gluten. If you are lucky it might be causing most of your issues.

 

[zkt]

I grew up with Freud- we used to eyeball coke together.:drooling:
I picked up on all patients lieing somewhere in clinical-psy classes a long time ago.

His problem orginated by when he was 12. Why detailed history/time line is crucial in these cases other wise you will not see the entire picture. This was probably the accmulation of several traumatic events eventually leading up to the straw which broke the camels back as it is commonly seen. With out proper history it would be impossible to identify. What people tell you on forums and what really happens tends to 2 different stories when you get them in your office or on your phone.

Going gluten free needs to be done for a minimum of 3-6 months almost up to a year to heal intestinal mucosa.

Drs do not know what wrong because they rarely ask detailed questions to find out why or it may be in an area which is out of their scope of practice.

 

[hardasnails1973]

Cut the gluten. If you are lucky it might be causing most of your issues.

Amazing what gluten, soy, dairy, high fructose corn can do when it is eliminated. If this does not work I have people remove grains, then night shades. I also have them do MRT leap food testing which has been shown to help a lot of symptoms. Even in younger children where placebo effect has been removed, the reduction in seizures significantly decreased from these type of food testing.

 

[Nate92]

I think youre on the right track now. Nothing like excessive partying to fuck up a marginal system. You develop a posetive feedback system with the poor quality of sleep and Etoh. With a Hx of insomnia you mighrt bnefit from a hypnoticsleeping drug and drinking more or less responsibily.

I wonder how much of it is lifestyle myself. But I doubt that could cause such a problem with hormones, right? Also, sorry if I don't know the lingo or abbreviations, but what is Etoh and Hx? I want to try a sleeping drug, but I worry about the dependency they cause.

You said I am on the right track. Do you think the Androgel is good too?

His problem orginated by when he was 12. Why detailed history/time line is crucial in these cases other wise you will not see the entire picture. This was probably the accmulation of several traumatic events eventually leading up to the straw which broke the camels back as it is commonly seen. With out proper history it would be impossible to identify. What people tell you on forums and what really happens tends to 2 different stories when you get them in your office or on your phone.

Are you implying that I had different head traumas that caused pituitary issues? Honestly, that could be the case, as I was truthfully an exceedingly energetic child. If anything that is an understatement. I could tell you stories and stories of my recklessness.

gluten free needs to be done for a minimum of 3-6 months almost up to a year to heal intestinal mucosa.

Do you think it would be useful to do so? I don't want to embark on such a difficult lifestyle change if unnecessary.

Doctors do not know what wrong because they rarely ask detailed questions to find out why or it may be in an area which is out of their scope of practice.

Cut the gluten. If you are lucky it might be causing most of your issues.

As I said above, I am reluctant to try gluten-free for such a long period of time if it is unnecessary. Are there tests I can do to be sure? Also, I wouldn't have the low testosterone to judge anymore, even if the gluten-free were to work because of the Androgel.

 

[1erCru]

Dude you have some serious health issues going on. You are having some kinda reaction to gluten based upon your labs. You are telling me you arent willing to cut it from your diet for 3-6 months just to see if its not contributing towards your deterioration? You are in your early twenties right? Do you think this is going to get better as your get older?
Cut the stuff out of your diet. If you dont improve AT ALL after 3-6 months then just start eating it again. Or you could get on adrenal support, testosterone, anti depressants, and whatever else and just patch fix this thing until the situation becomes really bad.

Tye gold standard for celiac and gluten sensitivty is eliminating it from your diet. As I said previously, if you are lucky it may be the source of your ill health.

 

[Nate92]

Dude you have some serious health issues going on. You are having some kinda reaction to gluten based upon your labs. You are telling me you arent willing to cut it from your diet for 3-6 months just to see if its not contributing towards your deterioration? You are in your early twenties right? Do you think this is going to get better as your get older?
Cut the stuff out of your diet. If you dont improve AT ALL after 3-6 months then just start eating it again. Or you could get on adrenal support, testosterone, anti depressants, and whatever else and just patch fix this thing until the situation becomes really bad.

Tye gold standard for celiac and gluten sensitivty is eliminating it from your diet. As I said previously, if you are lucky it may be the source of your ill health.

I know I have serious health issues. Yes, I am 21 as of today. This is all very weird. Of course I am willing to cut it out. I am willing to do anything to get over this. I know it is the gold standard too. The only thing holding me back is the placebo effect. I'd rather test further into Celiac's first before making such a decision. I know that sounds like a lame reason, but I've studying Psychology, I know what the Placebo Effect can do. In addition, what if a month from now I visit a doctor whom wants me to eat gluten for a test. Then I have to eat gluten for a time period before I can even take the test.

You really think it is gluten causing my problems? How could I have not had an issue until about the age of 12?

 

[chemman]

I know I have serious health issues. Yes, I am 21 as of today. This is all very weird. Of course I am willing to cut it out. I am willing to do anything to get over this. I know it is the gold standard too. The only thing holding me back is the placebo effect. I'd rather test further into Celiac's first before making such a decision. I know that sounds like a lame reason, but I've studying Psychology, I know what the Placebo Effect can do. In addition, what if a month from now I visit a doctor whom wants me to eat gluten for a test. Then I have to eat gluten for a time period before I can even take the test.

You really think it is gluten causing my problems? How could I have not had an issue until about the age of 12?

You can take our advice that you asked for or argue with us. Your choice. And yes gluten sensitivity can cause a significant deterioration of health.

Why don't you go back to the doc and demand to be tested inside and out for celiac? Then cut the gluten even if they say you are fine. It certainly won't hurt you to go gluten free, and then you won't have to worry about it. Knock one thing off the list. If anything it will keep you from eating processed crap, which is always a good thing. Try cutting out dairy too. The general theme here is reducing the amount of inflammation in your body.

And the placebo effect is better than no effect! [)]

Also...get your vitamin D levels up my friend. Start out with 4,000iu/day and retest in 3 months.

 

[Nate92]

You can take our advice that you asked for or argue with us. Your choice. And yes gluten sensitivity can cause a significant deterioration of health.

I'm never arguing! Don't want it to seem that way. I am just a very thorough person! And I would be shocked if it deteriorate that much! Happy! But shocked.

Why don't you go back to the doc and demand to be tested inside and out for celiac? Then cut the gluten even if they say you are fine. It certainly won't hurt you to go gluten free, and then you won't have to worry about it. Knock one thing off the list. If anything it will keep you from eating processed crap, which is always a good thing. Try cutting out dairy too. The general theme here is reducing the amount of inflammation in your body.

And the placebo effect is better than no effect! [)]

I will! No I plan on cutting it at some point no matter what. I guess what I want to know is: (1) Do you honestly think that from those results it could be problem? I know it's speculation, but I'd like your input. (2) Are there any crucial tests I should have done before I go on the gluten-free diet? (3) After 3-6 months will my well-being be obviously effected enough that I won't need confirmation tests?

Also...get your vitamin D levels up my friend. Start out with 4,000iu/day and retest in 3 months.

Already on it! Except I don't feel much better on it. Oddly, I don't seem to feel better with much of anything I take like that.

 

[chemman]

I'm never arguing! Don't want it to seem that way. I am just a very thorough person! And I would be shocked if it deteriorate that much! Happy! But shocked.



I will! No I plan on cutting it at some point no matter what. I guess what I want to know is: (1) Do you honestly think that from those results it could be problem? I know it's speculation, but I'd like your input. (2) Are there any crucial tests I should have done before I go on the gluten-free diet? (3) After 3-6 months will my well-being be obviously effected enough that I won't need confirmation tests?

I am not a doctor, and I don't know much about celiac...but If I were in your situation I would definitely be investigating that out of range value. I would imagine that after several months of the right diet, you would start feeling better. It can take time to heal, though. Think of how many years you have been feeling unwell. Bottom line, get to the doc and get tested. Then cut the gluten. Cut dairy while you are at it too.

Already on it! Except I don't feel much better on it. Oddly, I don't seem to feel better with much of anything I take like that.

You weren't super low, so I wouldn't expect vitamin D supplements to solve your issues. It's more about longterm health outcomes. BUT...you haven't verified that the supplement has actually raised your levels. Some people need big doses of vitamin D for whatever reason(s).

Another point I want to make is that in order to feel your absolute best...you really need to have everything optimized. So this means proper hormone levels, clean diet along with eliminating foods that you are sensitive to, proper sleep, limited or no alcohol/caffeine/drug intake, find and eliminate nutritional deficiencies, vitamin D levels, reduce inflammation, etc. etc.

Start with your diet and the gluten issue first, though.

Have you had your testosterone levels checked since you started androgel?

 

[foreveryoung]

you are acting like going gluten free is a super difficult thing or something, sheesh

I've been doing it for a year now and it's not that difficult, in fact there are the benefits that it forces you to think about your food choices and avoid crap fast food places that might be too convenient otherwise

 

[1erCru]

I said it plain and simple. If you are lucky, cutting gluten will relieve many of your symptoms. If it doesnt, or doesnt do anything, you are dealing with something that will end up being far more complicated.
So put hope that gluten is causal cause the solution is easy. Can gluten do this type of thing? The answer is a big yes but most doctors will tell you you are fine if you dont have celiac.
Also the placebo affect wont hold for 6 months. If it does your problems are psycho sematic which I very highly doubt.
Id get the tests done but even if they are negative Id still consider an elimination diet just to be thorough.