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

So Mad!

LuvMoosic4life

Recommended Posts

LuvMoosic4life Collaborator
LuvMoosic4life
Posted

I've been gluten-free since may with OBVIOUS improvement. My primary sent me to a G.I to see about celiac even though I am gluten-free. The G.I said its not worth putting me through the testing for celiac since I've been gluten-free for so long....

I went back to my primary today for a follow-up and he got VERY upset that the G.I refused to test me. Now he wants me to find another G.I to get tested even after I told him the tests would most likely come back negative; he kept disagreeing with me. He told me all I need to do is go on gluten for 2 weeks and get the biopsy. He agrees that the blood work would still be negative, but he said the biopsy would definitly show damage after 2 weeks of gluten...I disagreed.

I know about the gene test so I asked him (acting as if I didnt know)if there is a gene test I could get done to at least rule it out first and he shook his said and said "NO" !!!!!!!! WT--!!!! Then he went on to say something like "you are so young (22) and I really dont think by the symptoms you told me you have celiac (which btw were C, D, anemia, fatigue, bloating, foul extreme gas to name a few)- you have your whole life ahead of you and there is nothing you can eat b/c gluten is in everything...blah blah blah...you shouldnt have to go through all that if you dont have to"

OMG I was fuming!!!!, but kept my cool.

EVEN IF I DONT HAVE CELIAC I AM STILL FOLLOWING THE DIET!!!!!! I love eating gluten-free. People dont understand that. I have never felt better!! I never thought there would be a day that I would find the cure to my problem and that I would live the rest of my life bloated and miserable. I would much rather go through the "burden" of eating gluten-free than go through the humiliation and discomfort I went through before!!!!!

I dont know what else my problem could be if it isnt gluten sensitiviity/celiac. I mean, what would they do?? give me a medicine??? I REFUSE to take medicine. I KNOW gluten bothers me so I DONT EAT IT!!! and unlike the doctor said there are lots of things I can eat!! GGGRRRR!!!!

also, my blood results from my last test showed my hemoglobin was 13.8- it hasnt been that high in years!!!! I was so happy. and my bp was 100/70. except my potassium was low.....but at least I'm not anemic anymore!!! you think that would tell the doc something..but nooooooo....

anyone have any suggestions??? I just got this doctor, and I like him b/c he actually does care, but grrr!!! celiac is not his specailty!!!! lol. Would it even be worth calling the G.I doc back and telling him what my primary told me?? I mean.. my primary told me "well, the g.i is probably busy and just didnt want to test you, he isnt a diligent doctor" I guess I could at least ask him about the gene test.....ughhhh!!!!!! I would like to know if I have celiac too, but at this point its not so easy to get tested and get true results...

sorry I just spent hours venting about this to my mom!!! and I could still vent forever!!! this seems to be endless.....I had to hold back tears in the doctors office. I mean, why would I even put myself though all of this if i know what the problem is. I would rather spend less money on food anyday and just go out and eat whatever and wherever I want, but i cant b/c it leads me to being bed riddena nd feeling like complete crap all the time!!!!!!!well, you all know what its like... :lol:

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

Celiac.com Sponsor (A8-M):


Gerri Explorer
Gerri
Posted

Been there done that. Going to see GASTRO tomorrow - if anything she will label me with Gluten intolerance. I have already been told I was celiac by a doctor at a urgent care.

Like you I will not be going back to eating gluten to satisfy doctors who don't have to live our life of the pain of celiac, and other health issues that come with it.

I feel I am already been label by the urgent care doctor. The main purpose I wanted the GASTRO to see the damage that gluten, and allergies has done to my esophogus, and stomach. Now I am just courious as to what she says, and scared of the biopsy to my esophogus and stomach.

My doctor said why take something that makes you sick, whether it be pain meds or gluten. I was extremely suprised when he said that.

I know how you feel. So many doctors can tell you how you feel without listening to what your symptoms are!!!!!!! I had a doctor give me a drug that I was allergic too. Their policy is to do no harm. She would not listen.

Some times I like to go into their office with a sheet of symptoms, and test the doctor to see if he would even come close to knowing how I am feeling. I tired of them saying your trying to self diagnose, or I am on the computer to much. I have been more right, and ordered more test from the doctor that come back positive, than the test the doctors have ordered out of the blue. Not everyone can follow a book with their health. Not everyone follows the rules to how they should react with medicine, and definitely not me. When I have breathing problems with a medicine, I don't take it. My doctor was shocked when I told him the increase in Vitamin D caused breathing problems, he didn't push. I know he is getting progressively more scare to prescibe anything. All I want is a diagnoses, for why I am falling apart, like you.

Some doctor, many don't have any positive bed side manner. They push through people, because here in Canada, there is thousands of people without doctors. People who are lucky to have a doctor, are getting less and less quality time with their doctor, because they have taken on many more they should have.

Vent now, and know your not alone.

Hugs

Gerri

Archived

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

Go to topic listing

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

      Positive biopsy

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

      Fruits & Veggies

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

      Positive biopsy

      @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...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

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

      Positive biopsy

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

  • Member Statistics

    • Total Members
      133,020
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      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
      Fruits & Veggies

      By knitty kitty · Posted

      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
      Positive biopsy

      By knitty kitty · Posted

      @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
      Positive biopsy

      By trents · Posted

      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
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.