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What A Welcome Surprise!

still tiredofdoctors

By still tiredofdoctors
in Doctors

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still tiredofdoctors Rookie
still tiredofdoctors
Posted

My son, Brandon, is 27 and just moved to Houston, TX at the beginning of the month. He has been having some GI difficulty for the past few months, and a few days ago when I spoke with him it had gotten REALLY bad. I told him that he really needed to find a GI doc in Houston and have a work-up.

He was able to schedule an appointment within two days of calling -- unbelievable -- and this guy didn't make him see a primary care doctor first, blah, blah, blah. But here is the even MORE unbelievable part and the incredibly GOOD part: When the doctor was taking his history, including his symptoms the doctor actually listened and acknowledged them. One of the more unusual symptoms is that my son has begun sweating profusely -- something entirely unlike him -- within the last few months.

Brandon then told the doctor that "my mother has neurogenic celiac disease". The doctor said, "Oh -- then she has . . . " and started listing my symptoms! He then said, "Profuse sweating is autonomic -- I already know that I want to do a celiac panel on you. You could be developing neurogenic celiac as well. It is hereditary."

HALLELUJAH! There is a physician in this world who LISTENS TO THE PATIENT, who INCORPORATES THAT INFORMATION into his thought process, and THEN DOES SOMETHING ABOUT IT!

I am so pleased about this doctor that I just needed to share the news . . .

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mushroom Proficient
mushroom
Posted

Isn't it amazing to find someone like that?!!! Shouldn't be, but it is :o:lol::D I am so glad for your son.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

WOW????

Can your son ask this doctor for a list of other doctors he might know around the country who have either as much sense or the same training???

We need more doctors like this!!!

A thought about the profuse sweating--that is often a symptom of overactive thyroid. I wonder if they will eventually figure out a causative link between neuro celiac (or any celiac) and overactive thyroid?

Wolicki Enthusiast
Wolicki
Posted

Wow :D!!! :D

great for you and your son!!!!

ang1e0251 Contributor
ang1e0251
Posted

Best news ever!

Mtndog Collaborator
Mtndog
Posted

Wow- sorry Brandon's sick but AMEN to doctors like that!!!!!!

still tiredofdoctors Rookie
still tiredofdoctors
Posted
  • Author

I had really started getting concerned. His doctor here did all the "perfunctory" tests: thyroid, CMP . . those things. Wouldn't take into account the celiac component, though.

Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!

The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.

I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING? :lol:

P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME ;)

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  • 2 weeks later...
purrcep4 Newbie
purrcep4
Posted

Hi,

I am a newly diagnosed celiac with DC. Can you tell me more about neuro celiac? I'm thinking I may have this type.

Thanks in Advance,

Annie

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi,

I am a newly diagnosed celiac with DC. Can you tell me more about neuro celiac? I'm thinking I may have this type.

Thanks in Advance,

Annie

When celiac attacks the brain it can do a number of things. Gluten ataxia is one, that is a feeling of being off balance. For me that means I feel like I am falling to the right even if I am not. It also interferes with nerve conduction, I lost reflexes in my legs when I was still a child but 2 years after going gluten free I now have reflexes again in my 50's. It can also cause a variety of mental illnesses, depression and anxiety and has even been linked to schitzophrenia (sp?). It can also make thinking clearly tough, what many of us call brain fog. That interferes with our ability to process or remember information. At my worst I couldn't remember well enough to even read a book. I wouldn't be able to keep characters straight and then couldn't remember one sentence long enough to be able to make sense of the next. It also effected my ability to do things like math in my head. Given a string of 5 numbers I would forget the total of the first two before I could add in the third. All of these issues have improved since I have been gluten free. I can even put a book down now and remember enough of it to be able to pick it back up and finish reading it.

If you do a search using the words celiac and neurological there should be quite a bit of info that comes up.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

still tiredofdoctors!,

Could you find out the doctors name, then post it under a new topic:" Houston, TX Doctor" so other people in the Houston area will know who to make an appointment with, it is so hard to find a good doctor. He really hit a gold mind!!!

PhillyCeliacTriathlete Newbie
PhillyCeliacTriathlete
Posted
My son, Brandon, is 27 and just moved to Houston, TX at the beginning of the month. He has been having some GI difficulty for the past few months, and a few days ago when I spoke with him it had gotten REALLY bad. I told him that he really needed to find a GI doc in Houston and have a work-up.

He was able to schedule an appointment within two days of calling -- unbelievable -- and this guy didn't make him see a primary care doctor first, blah, blah, blah. But here is the even MORE unbelievable part and the incredibly GOOD part: When the doctor was taking his history, including his symptoms the doctor actually listened and acknowledged them. One of the more unusual symptoms is that my son has begun sweating profusely -- something entirely unlike him -- within the last few months.

Brandon then told the doctor that "my mother has neurogenic celiac disease". The doctor said, "Oh -- then she has . . . " and started listing my symptoms! He then said, "Profuse sweating is autonomic -- I already know that I want to do a celiac panel on you. You could be developing neurogenic celiac as well. It is hereditary."

HALLELUJAH! There is a physician in this world who LISTENS TO THE PATIENT, who INCORPORATES THAT INFORMATION into his thought process, and THEN DOES SOMETHING ABOUT IT!

I am so pleased about this doctor that I just needed to share the news . . .

Wow. It's not often you read good news about docs these days, so I was pleasantly surprised your son Brandon got the proper treatment he deserved. On top of this doctor, I would recommend some online reading by my personal holisitic doctor Simon Aslanian. He is located in South Jersey, where I lived for 22 years, and is a reknowned celiac expert and is newly ONLINE! :)

His website is Open Original Shared Link. I cannot tell you the difference he has made in my life in various ways in regards to celiac and gluten-free knowledge. He was teaching the gluten-free diet to anyone who would listen over 10 years ago when the world knew NOTHING about IT. Remember those days? Let's forget those days. :angry:

So good luck to you and your son and hats off to his newfound doctor for caring! :D

John

www.GlutenFreeTriathlete.com

momofcdson Rookie
momofcdson
Posted
I had really started getting concerned. His doctor here did all the "perfunctory" tests: thyroid, CMP . . those things. Wouldn't take into account the celiac component, though.

Even though he's 27, when he called from Houston and was SO sick, I had that incredibly scared feeling. I was so worried and felt helpless. I can't drive -- can't even travel right now -- so I was just stuck here giving advice over the phone. Thank goodness we talk & text a few times a day. (I guess you don't realize how much you talk to your kids until they move away . . . ) Thank goodness, too, that while I was telling him what I thought he should do, he took notes!

The relief I felt when this doctor IMMEDIATELY took that into consideration -- and incorporated it into his game plan -- was unbelievable. Celiac isn't the only test he is performing -- he is also doing antibody tests for thyroid, as well as a LOT more. He said from there he would then perform an endo and colonoscopy. He also talked about referring to other specialists should he not find anything.

I have to wonder: IS THIS GUY AN ALIEN OR SOMETHING? :lol:

P.S.: Beverly -- the professor I told you about who continually asked if I didn't want to be a writer vs. a PT? He was good friends with Hunter S. Thompson! I also love your other quote as well. I may have a LOT of diseases, but they define what's wrong with my body -- they don't define ME ;)

I loved reading your blog, as I too have a son who was recently just diagnosed with Celiac.

We live in Michigan, and he just recently moved to Georgia after graduating from College.

He immediately started feeling terrible once he arrived in GA, and we told him it was probably just stress from moving, not having a job yet, etc. His symptoms were stomach aches, diarrhea, hair loss, tired, etc. After about 3-4 months of this, he decided to get a doctor in GA, and thank god for that!

His doctor did blood work and ran the test for Celiac and it came back positive! I sent a note to the woman in charge of the Savannah Celiac Support Group asking for a recommendation of a good doctor who specialized in Celiac, and she gave me her own doctor. My son made an appointment with him, and had the biopsy done, and has gone gluten free since. He is doing great! However, still seems to get the cross contamination on and off. I think he may cheat here and there too, with a beer on and off. I keep telling him you can't do that! But at 24, I'm sure giving up beer is hard! He isn't crazy about the gluten free beers ;) LOL

Anyway, it is nice to see another mother writing about her son! Good luck to you.

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    • trents
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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