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Finally Some Answers Coming Soon

Swimmr

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Swimmr Contributor
Swimmr
Posted

It has been some time since I updated. As some of you know, I had a thread about my elimination diet. Good things there - I've maintained a weight of 135 lbs. I finally got the "ok" to go back to the gym this week. My ankle is healing very slowwwwly - had an MRI done and I've bruised the talus and tibia. There's extensive fluid still which is causing the pain and swelling. Maybe in 3 more months I'll be ok to run again.

Ok so now onto the subject.

I recently had a fight with Tricare to get authorized to see a neurologist. After going in to see my doctor about an onset of tingling in my left arm, left side of my face and head, with loud ringing and sensitivity in my left ear, I asked her for a referral to see Dr. Richard Serano here in my town. I had just had another bout of dizziness and nausea and a mild headache that lasted four days straight. I wanted to know if this is related to celiac - possible gluten ataxia. He's one of the best and is considered "strange" "unconventional" and "odd". Which fits the description of someone I'd love to see. I got TWO denials from Tricare because there are 15 other neurologists in the area specializing in dizziness and balance problems. Finally after realizing they did NOT include Celiac on the list of reasons, they added that one detail and within two days I received an authorization by phone. I was ecstatic!

So I saw him. I cannot begin to describe the information that is packed into that man's head. It's unbelievable. He started studying Celiac Disease 5 years ago after questioning why his patients weren't getting better. The majority of his office has some form of gluten intolerance or Celiac. It's amazing. His receptionist knows as much as he does and his nurse knows just as much. I've never been in the company of people so willing to listen and help and not riding me off like I'm some type of hypchondriac, because deep down I know something just isn't right and I'm going to get to the bottom of it.

On a side note he also does accupuncture/pressure, fertility, and practiced chinese medicine. This man is a Godsend.

So he ordered 18 different blood tests INCLUDING.... *drum roll please*

A DNA DETECTION FOR CELIAC/GLUTEN INTOLERANCE! And it's costing me NOTHING since the lab takes Tricare. Woo! I'm getting it done through Spectrum Laboratories. I can't remember all the different tests...I just know that it was A LOT of blood taken out of my body. 18 vials worth.

This past week I also had an EEG and a Baer Test. This was interesting. This goes hand in hand with the blood tests to rule out seizures and other strange occurrences in my brain. He was concerned about my brain stem because I'm having some things happening on the right side, but manifesting on the left...he said, "it's crossing over through the brain stem" and I have no idea what all this means.

May 11th I'll find out the results of all the testing.

I'm excited and I'm not sure if that is good, lol. Either way I'm getting some answers and to me, that means EVERYthing.

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gf-soph Apprentice
gf-soph
Posted

That's amazing, well done on fighting to get to the right person! It can make such a difference to just be taken seriously.

I'll be interested to hear what the testing shows, I've had a lot of balance problems and clumsiness for a while now, and I've no idea what area to pursue other than keeping gluten-free and trying to get decent nutrition.

Keep us updated!

Heidi S. Rookie
Heidi S.
Posted

I am very excited for you!! After 1 year of doctors I recently achieved a referral for Genetic celiac test! My sister who is a Marine Corp wife fought with Tricare and achieved it as well for her and her daughter, Free! My sister carries DQHLA2 and her daughter and I neither! First degree relatives of celiac with gluten intolerance for us! It is a slow process to get the tests and questions answered and find a doctor to not think you are a NUT! It was easier to get surgery and remove things than for me to get a competent doctor to give me the genetic tests!

Best of LUCK and I hope you get the answers you have been waiting for!

Thank you for your military spouse service! I was a military child and people do not realize what wives go through, especially with medical needs!

Swimmr Contributor
Swimmr
Posted
  • Author

I am very excited for you!! After 1 year of doctors I recently achieved a referral for Genetic celiac test! My sister who is a Marine Corp wife fought with Tricare and achieved it as well for her and her daughter, Free! My sister carries DQHLA2 and her daughter and I neither! First degree relatives of celiac with gluten intolerance for us! It is a slow process to get the tests and questions answered and find a doctor to not think you are a NUT! It was easier to get surgery and remove things than for me to get a competent doctor to give me the genetic tests!

Best of LUCK and I hope you get the answers you have been waiting for!

Thank you for your military spouse service! I was a military child and people do not realize what wives go through, especially with medical needs!

You're welcome first of all and yes, people don't realize what it's like for military wives, daughters, sons, etc.

It has taken me almost two years to finally get to where I am with these tests. The tingly/ear ringing episode I mentioned, I was told it was residual effects of a panic attack blink.gif I hate having that on my records. Anything they don't know they ride off as a panic attack symptom because I'm "way too young and too healthy" to have a stroke. Right. Technically, yes...but ANYthing can happen. It was a different doc than I'm used to seeing and on my way out, almost in tears, ran into MY doc who pulled me into an empty room and wrote up the referral right there on the spot.

You had surgery? Please tell me you didn't have intestines removed! I had lunch Saturday with my ex step family (don't ask...lol) and one of my cousins who we call Zot has a boy who is autistic and from a very young age he ended up having over half of his intestines removed because he just wasn't getting any better and noone thought about celiac or anything similar, just kept removing things. It's sad - this boy is now 11 and miraculously can tolerate gluten/wheat again after being on a Gluten-free Casein-free diet for three years. He was diagnosed autistic at 3 1/2 when he stopped communicating with his parents and closed up. I have read that sometimes when it's just an allergy or an intolerance that after being on the diet for some time you're able to tolerate it again. That seems so weird, but in his case he is perfectly ok. You would never guess he's autistic - not on ANY medications what-so-ever and she says the difference in behavior before and after the diet are like night and day. He's very well behaved - calm.

I will keep ya'll updated :) I have to wait another week and it's killing me!

Heidi S. Rookie
Heidi S.
Posted

Long version warning!

I was diagnosed with IBS at the age of 8 and told that I was having panic attacks and stress from my father being deployed in desert storm. Went through all the testing put on every diet imaginable including high fiber and whole wheat! They found that I had inflammation and gave acid reflux medicine! With them not helping me AT ALL! I made it until high school when I became very ill. Again they diagnosed my problems IBS cause by stress! I was throwing up and sick so much my cheerleading coach turned me in for bulimia. Trying to convince a psychologist that I was stable and that I didn't want to throw up was just impossible. More testing, more inflammation and acid reflux meds. In college another round of sickness. A thyroid cancer scare, a lupus scare, fibromyalgia scare, hospitalized with a kidney infection, vitamin D deficiencies, RA scare with join pain, etc....

Then on my birthday last year, another major sickness. Scared my husband to death! Ate some left over Chinese food, said I wasn't feeling good and went to lay down. Woke up with the worse pain in my abdomen I have ever felt in my life! Taken to the doctor he was baffled, taken to the emergency room, pain so bad in my stomach and back I was vomiting. Intestinal infection in my terminal ileum. Another month in and out of the hospital and testing. Acid reflux meds, inflammation on all scopes. Crohn's meds and major steroids. Lost 26 pounds couldn't eat, became a vegetarian, only thing that didn't make me in pain. Had to take leave from work...at 24 years old... Removed my gallbladder, it was normal but they thought it was source of pain, surgery complication: pleurisy (very painful and slow recovery). Got worse... tested my appendix then Schedule for removal of a section of my intestines. Before the surgery went on a vacation with my husband's parents, sick the whole time. My father in-law an emergency room doctor convinced me to try a gluten free diet. Gave it 3 weeks and started improving, returned to the specialist and canceled the surgery and ask if I was tested for Celiacs... Not one time in my life and all the thousands of testing.... Military moved us everywhere not one doctor, specialist, etc helped me.

My life now totally different. My sister and mother diagnosed as celiac 3 months later! My 5 year old niece gluten intolerant too, thank GOD she will not live the life I did now, they were testing her for ADD and IBS but not anymore! They had done so many tests I couldn't get approvals for more and my body too weak to handle it. Now finally last month, I achieved genetic testing after a year gluten free and happy! So thankful I never went through with the second intestinal surgery! My husband and I hope to be able to have children soon with my vitamin levels rising!

Sorry for the long version! It will be worth the wait!

Swimmr Contributor
Swimmr
Posted
  • Author

Long version warning!

I was diagnosed with IBS at the age of 8 and told that I was having panic attacks and stress from my father being deployed in desert storm. Went through all the testing put on every diet imaginable including high fiber and whole wheat! They found that I had inflammation and gave acid reflux medicine! With them not helping me AT ALL! I made it until high school when I became very ill. Again they diagnosed my problems IBS cause by stress! I was throwing up and sick so much my cheerleading coach turned me in for bulimia. Trying to convince a psychologist that I was stable and that I didn't want to throw up was just impossible. More testing, more inflammation and acid reflux meds. In college another round of sickness. A thyroid cancer scare, a lupus scare, fibromyalgia scare, hospitalized with a kidney infection, vitamin D deficiencies, RA scare with join pain, etc....

Then on my birthday last year, another major sickness. Scared my husband to death! Ate some left over Chinese food, said I wasn't feeling good and went to lay down. Woke up with the worse pain in my abdomen I have ever felt in my life! Taken to the doctor he was baffled, taken to the emergency room, pain so bad in my stomach and back I was vomiting. Intestinal infection in my terminal ileum. Another month in and out of the hospital and testing. Acid reflux meds, inflammation on all scopes. Crohn's meds and major steroids. Lost 26 pounds couldn't eat, became a vegetarian, only thing that didn't make me in pain. Had to take leave from work...at 24 years old... Removed my gallbladder, it was normal but they thought it was source of pain, surgery complication: pleurisy (very painful and slow recovery). Got worse... tested my appendix then Schedule for removal of a section of my intestines. Before the surgery went on a vacation with my husband's parents, sick the whole time. My father in-law an emergency room doctor convinced me to try a gluten free diet. Gave it 3 weeks and started improving, returned to the specialist and canceled the surgery and ask if I was tested for Celiacs... Not one time in my life and all the thousands of testing.... Military moved us everywhere not one doctor, specialist, etc helped me.

My life now totally different. My sister and mother diagnosed as celiac 3 months later! My 5 year old niece gluten intolerant too, thank GOD she will not live the life I did now, they were testing her for ADD and IBS but not anymore! They had done so many tests I couldn't get approvals for more and my body too weak to handle it. Now finally last month, I achieved genetic testing after a year gluten free and happy! So thankful I never went through with the second intestinal surgery! My husband and I hope to be able to have children soon with my vitamin levels rising!

Sorry for the long version! It will be worth the wait!

Oh my goodness sweetie...I feel so sorry for your pain! I am happy though that you are improving. It makes you wonder why we have doctors sometimes. If only more docs were like House :)

Swimmr Contributor
Swimmr
Posted
  • Author

At 3:35 I will find out the results of all my testing!!!

I'm excited, yet nervous. Hubby is going with me for support in case I get bad news of any kind. Which I'm not hoping for, and really I'd like him to be there just so he hears what he has to say too.

fingers crossed that I'm positive for genes for Celiac (LOL!) because if it's negative I think I will literally flip a lid in his office...

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