Discussions By Condition: I cannot get a diagnosis.

Fearful of starting my family until helped. Please!

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: abby_sender
  • December 3, 2008
  • 01:41 AM

Hi. I am 24, and thought I was healthy. I have always been active and for the last two years have had some serious health problems. Recently I went to the gastroenterologist and blood work and stool samples were fine. These are my symptoms:

SEVERE abdominal cramps with sudden onset followed by extreme sleepiness and diarrhea

Chronic Migraines

Dizziness every single day and it feels like my ears are stopped up but they aren't

Joint achiness and heaviness (It is hard to hold a phone sometimes)

Loss of appetite

Shakiness and light-headedness

Rapid heart palpitations for no reason

My neck and upper shoulders have hurt for 2 years

Temp. drops to 95.5 when I get the severe stomach cramps, shakiness, and diarrhea, tiredness, etc.

I have the following treatments:

Botox shots for migraines in my nerves

Anti-Spasmatic meds for intestines

Tons of migraine meds that don't work

Blood work and stool sample that is all fine

Allergy tests that came back fine

WHAT COULD BE WRONG? WHO DO I NEED TO SEE? I am fearful of starting a family until my life is stable and uninterrupted. Thanks for your time.

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17 Replies:

  • You should ask for your thyroid results and post them here or on a thyroid board. Many of your symptoms could be caused by hyperthyroidism. You should also ask to have a colonscopy done if you are having chronic diarreah. Blood and fecal tests can be normal even when you do have inflammation or ulcers in your intestines. Also, both Ulcerative colitis and Crohns disease can present itself with jointpain years before a diagnosis of colitis is made. Kiera
    Anonymous 42789 Replies
    • December 3, 2008
    • 01:22 PM
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  • Get checked for celiac disease. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies
    • December 3, 2008
    • 05:15 PM
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  • THanks for the tips. They said that my thyroid is normal. THe celiac symptoms sound pretty on point, but I also have headaches, Could they be caused by an iron deficiency? My iron tested normal in my blood work as well. I am waiting on the blood test results to arrive in the mail, but the doctors told me everything was normal. I will post them when I get them. Will I be able to tell if they tested for celiac? I did six blood tests. I am not sure what they all were. Thanks for your help.
    abby_sender 9 Replies
    • December 4, 2008
    • 02:24 AM
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  • Im glad to hear that you are hanging off trying to get your health right BEFORE starting a family. Are you still able to live a full life?? or are you also having issues with tiredness and exhaustion??? maybe memory or concentration issues??.. and possibly sleep issues????????? IF you also have some of these issues occuring too.. i then suggest to check out chronic fatigue immunity dysfunction syndrome (as that can cause all your symptoms but currently not enough has been said for me to think this is what you may have) .. or it is possible that you are at the start of this illness (and maybe will get more symptoms developing.. so yes .. hold off before starting to family) .................... I too say.. make sure you have celiac disease ruled out. Another thing you maybe should get ruled out is food intollerances.. food intollerances are different to food allergies. ................. Do you have low BP?? Is your dizziness worst when upright????
    taniaaust1 2267 Replies
    • December 4, 2008
    • 07:29 AM
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  • Consider an alternative approach to your illness - a good acupuncturist, naturopath, kinesiologist or other practitioner may help shed new light on your problems. Acupuncture especially is brilliant for migraines! Please don't take the docs word that your blood work is normal - get copies and look it over yourself. Make sure they test your vitamin D and B12 levels - often not done and can point to a lot of your current symptoms. If they tested you for B12 find out what your levels are and please post here. Make sure they specifically tested you for CLOSTRIDIUM DIFFICILE INFECTION. This is VERY important and is not included in a typical stool exam. C. Difficile is becoming a huge problem and can cause severe colitis.Make sure they ruled this out. What meds are you currently taking? Are you on any hormonal bc? What are your periods like? Where exactly are your stomach cramps - are they always in the same spot or do they move around? On sided? Best wishesDOM
    acuann 3080 Replies
    • December 4, 2008
    • 06:46 PM
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  • Headaches (migraines especially) are associated with celiac disease. http://www.webmd.com/migraines-headaches/news/20030321/migraine-linked-to-celiac-disease
    aquila 1263 Replies
    • December 4, 2008
    • 08:11 PM
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  • I am getting the test for celiac at the beginning of next week. I will post my blood test results when I receive them by mail soon. The pain in my stomach normally hurts to the left of my belly button (my left, looking at me it is the right). I hear a lot of gurgling and stuff even when I am not hurting per say. I am on Bentyl and it helps some but I still have problems with overwhelming cramps at times. I have not tried accupressure, etc. but I have been to the chiropractor for the headaches. I always feel really tired in the mornings but by evening I normally feel pretty good. I feel the dizziness either way but more so in the mornings for a few hours. Thanks for the help!
    abby_sender 9 Replies
    • December 4, 2008
    • 11:38 PM
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  • I have had allergy tests and they came back fine as well. How do I get tested for food intolerrances?
    abby_sender 9 Replies
    • December 4, 2008
    • 11:39 PM
    • 0
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  • I am getting the test for celiac at the beginning of next week. I will post my blood test results when I receive them by mail soon. The pain in my stomach normally hurts to the left of my belly button (my left, looking at me it is the right). I hear a lot of gurgling and stuff even when I am not hurting per say. I am on Bentyl and it helps some but I still have problems with overwhelming cramps at times. I have not tried accupressure, etc. but I have been to the chiropractor for the headaches. I always feel really tired in the mornings but by evening I normally feel pretty good. I feel the dizziness either way but more so in the mornings for a few hours. Thanks for the help! Again, could you talk about your periods? ARe they regular or do you have heavy periods? Any bc?DOM
    acuann 3080 Replies
    • December 5, 2008
    • 01:08 AM
    • 0
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  • I am getting the test for celiac at the beginning of next week. I will post my blood test results when I receive them by mail soon. The pain in my stomach normally hurts to the left of my belly button (my left, looking at me it is the right). I hear a lot of gurgling and stuff even when I am not hurting per say. I am on Bentyl and it helps some but I still have problems with overwhelming cramps at times. I have not tried accupressure, etc. but I have been to the chiropractor for the headaches. I always feel really tired in the mornings but by evening I normally feel pretty good. I feel the dizziness either way but more so in the mornings for a few hours. Thanks for the help! With the morning tiredness which picks up later.. im wondering if you could have a cortisol issue. I suggest to get your morning cortisol level tested to see if that's giving you issue. (low cortisol will also cause other issues eg diarhearr too). Most doctors will not test for food intollerances as they seem mostly focused on food allergies. Food intollerance testing can be done via a certain type of blood tests .. maybe seek out a naturopath to arrange that kind of testing if you cant find a doctor.
    taniaaust1 2267 Replies
    • December 5, 2008
    • 02:49 AM
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  • What is the difference in food intolerance and food allergy? Also, I can still have stomach issues all day regardless of the fatigue, dizziness, and shakiness wearing away. Could that be related to cortisol? I was thinking about some times when I ate flour in large dosages because I normally don't eat bread. I got flu-like symptoms back in May after I ate two biscuits. I slept all day and felt awful with stomach cramps. That sounds crazy, but it may be a part of the celiac. Who knows at this point. Thanks for the help though.:)
    abby_sender 9 Replies
    • December 5, 2008
    • 03:37 AM
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  • What is the difference in food intolerance and food allergy? Also, I can still have stomach issues all day regardless of the fatigue, dizziness, and shakiness wearing away. Could that be related to cortisol? I was thinking about some times when I ate flour in large dosages because I normally don't eat bread. I got flu-like symptoms back in May after I ate two biscuits. I slept all day and felt awful with stomach cramps. That sounds crazy, but it may be a part of the celiac. Who knows at this point. Thanks for the help though.:) If you do indeed have celiac, then I guarantee you also have a host of nutritional deficiencies, most important B12 deficiency. It can cause your fatigue, dizziness, shakiness, stomach issues, AND migraines. Please research and post your symptoms on the B12 misdiagnosis thread. It is an invaluable thread. Best wishesDOM
    acuann 3080 Replies
    • December 5, 2008
    • 03:58 AM
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  • My period were for the most part normal, maybe a day or two late or early, for the past 12 years. I bleed heavily but normally it is not painful. I did not start having menstrual cramps until I had migraines. Last month, my period was very late for the first time ever. I had started on Oct. 3rd. I did not start again until Nov. 19th.
    abby_sender 9 Replies
    • December 5, 2008
    • 03:45 PM
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  • Again, could you talk about your periods? ARe they regular or do you have heavy periods? Any bc?DOM My periods were for the most part normal, maybe a day or two late or early, for the past 12 years. I bleed heavily but normally it is not painful. I did not start having menstrual cramps until I had migraines. Last month, my period was very late for the first time ever. I had started on Oct. 3rd. I did not start again until Nov. 19th. No blood clots that I know of.
    abby_sender 9 Replies
    • December 5, 2008
    • 03:48 PM
    • 0
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  • My periods were for the most part normal, maybe a day or two late or early, for the past 12 years. I bleed heavily but normally it is not painful. I did not start having menstrual cramps until I had migraines. Last month, my period was very late for the first time ever. I had started on Oct. 3rd. I did not start again until Nov. 19th. No blood clots that I know of.I do get a migraine the night before I start though. I have been told I have pre-menstrual migraines but no testing has been done to find out why.
    abby_sender 9 Replies
    • December 5, 2008
    • 05:06 PM
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  • A lot happened today! I found out that I was never ever tested for any food allergies, so all along I thought I had no allergies at all. They told me that I was allergy free ,but when I called today to get results on paper they told me I only was tested for airborne allergies. Therefore, I could be allergic to wheat and have never known. They should have went over the results with me! Also, I went for the celiac test so I will have results soon. I got my blood test results. They only ones that are low or high are listed as:Glucose 106 HighSGPT (alt) 10 LowOSMO (calculated) 281 LowRBC 3.96 LowHCT 36.9 LowMCH 33 High *** These were also not gone over with me so I have no clue what these mean besides the RBC and glucose. Thanks!
    abby_sender 9 Replies
    • December 5, 2008
    • 11:18 PM
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  • With the morning tiredness which picks up later.. im wondering if you could have a cortisol issue. I suggest to get your morning cortisol level tested to see if that's giving you issue. (low cortisol will also cause other issues eg diarhearr too). Most doctors will not test for food intollerances as they seem mostly focused on food allergies. Food intollerance testing can be done via a certain type of blood tests .. maybe seek out a naturopath to arrange that kind of testing if you cant find a doctor. A lot happened today! I found out that I was never ever tested for any food allergies, so all along I thought I had no allergies at all. They told me that I was allergy free ,but when I called today to get results on paper they told me I only was tested for airborne allergies. Therefore, I could be allergic to wheat and have never known. They should have went over the results with me! Also, I went for the celiac test so I will have results soon. I got my blood test results. They only ones that are low or high are listed as:Glucose 106 HighSGPT (alt) 10 LowOSMO (calculated) 281 LowRBC 3.96 LowHCT 36.9 LowMCH 33 High*** These were also not gone over with me so I have no clue what these mean besides the RBC and glucose. Thanks!
    abby_sender 9 Replies
    • December 5, 2008
    • 11:20 PM
    • 0
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