Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Taking A Road Trip


Lisa

Recommended Posts

Lisa Mentor

We feel it's time to bug out of here and take a road trip. We want to leave home and slowly take the scenic route up to Maine. :rolleyes:

Any suggestions for stops along the way?

Thanks Lisa


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

I can't remember our stops along the way to New Hampshire . . . I know on the way home we took the back roads and instead of a straight shot up there (were visiting my cousin), decided to take the leisurely way home . . . went through Maine, Vermont -- all small streets, beautiful places. My memory being basically -- well, NOTHING -- I'll ask Dave. He may have some insight as to some places that we stopped. I ENVY YOU!! This is THE most beautiful time to go up that way! The trees are AWE-INSPIRING. I hope you have a GREAT trip . . . . you deserve it, my friend.

Lisa Mentor

We always love it up there after the nasty hot summers here.

Lynne, going to the Dr.'s office now for him the interpret my blood work. Let ya know later. With me luck.

tiredofdoctors Enthusiast

My thoughts and prayers are with you . . . . let me know ASAP! PM or e-mail me . . . REALLY want to know. xxxooo Lynne

Turtle Enthusiast

Lisa: I'm jealous...I wanna go on a road trip!!!!

Hope your blood work came out okay! Thinking of you!

mouse Enthusiast

Lisa, let me know later too, please. Hugs.

Lisa Mentor

OK:

Current symptoms: Arm tremors, hair loss, fatigue, lack of concentration, memory issues, brusing, no interest in food.

Most everything was below the average, WBC, Platelets,Folic, B-12. He said that the blood panel was not normal for a 51 year old, but he doesn't know where to go with it. Pushed Lexipro, as if the fatigue is depression, gheshhhhh.

Suggested seeing a rhumotologist and asked if there was a Celiac Research Center. I suggest Dr. Peter Green at the Univ of MD. I had a pros biopsy a year ago August, but he did the blood test 3 months later, and I was gluten free by then so I think that he is not sure it is Celiac. Every darn doctor wants to do their own test!!! :angry:

I guess that it is nothing to get concerned, just have to eat better, drink less

I still cannot understand why more doctors don't know anything about all this by now. <_<<_<

Lisa


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Thanks Lisa for letting us know. I think you need to find a new doctor who will address the vitamin deficiencies. First doctors say, that the blood test being positive means nothing and that you have to have a biopsy. Now your doctor is saying the biopsy being positive means nothing and that you might not have Celiac. Of course you have Celiac because of the positive biopsy. All of those things you are expieriencing are not normal and need to be addressed. I am not a doctor, but I would think that not having the right amount of certain vitamins would cause some of them. Hopefully someone will post with more ideas then I have. But, don't give up the ship. You need to find a doctor who will hear you. Many hugs. PS - how is your thyroid?

tiredofdoctors Enthusiast

Yeah, I was going to mention that, too, but didn't want to blame everything on thyroid issues!!!! I think you're on the right track, though, Metta.

Lisa Mentor

Maybe you all can make sense of this, thyroid:

Free T4 - 0.85 (range 0.70 - 1.53)

TSH (high Sensitive test) - 0.89 (range0.49 - 4.87) ......sounds low to me??

Dr. had no concerns about this. So what do you all think.

L

To clarify, I may have confused people. Five years of loosing unexplained weight (size 12 pants to a size 4). A period of high stress kicked in my symptoms. I can even remember the date it began. After two months of being held up in the bathroom with "molten poop", went to my GP. He recommended a GI. Had endoscopy and colonoscopy. Endo, indicated flattened villi. Concluded Celiac Sprue. Went gluten free. Aggravated with my GP of years, and I went to an Osteopathic DR. He did the Celiac Panel (after two months gluten free), which was negative, duh

I have lost alot of padding on my bod. No butt, and wake up in the am with aching legs as no more padding on my feet. And I don't know how to get that back.

Ok, ok, enough about me. I don't feel comfortable being "out-there", but I sure did it to myself tonight. :ph34r:

Judyin Philly Enthusiast

Lisa

Missed this post in the afternoon. I'm not here much anymore but did post on the other thread.

About tests, don't know about those, sorry but came one cause I might have some ideas about your trip.

Jim and I did a conference in Maine and came home the scenic way and it was 'breathtaking' I'll try to find out from Jim what routes we took as like Lynne, we like to take the back roads and scenic ways. We went to Kennybunkport whick i love. I worked for 2 summers in college there and know some cool places to see. Also there is a neat new hotel in Oqunquite (?) that is on this point where the old hotel i worked in was.

I'll try to find the name of a neat other hotel that we loved so much as so much to do and see close by and it had a jacuzzi in the room. I find if i can get rooms that have that...I feel so much better and can do more in a day re: walking etc.

I'll be in touch.

Love

Judy

Going to PM you another idea. Have to get something out of the oven. will get back to you later.

hugs

judy

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748

    Ozz lock
    Newest Member
    Ozz lock
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...