Jump to content
  • 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
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.