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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,020
    • Most Online (within 30 mins)
      7,748

    Ericaa
    Newest Member
    Ericaa
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.