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

I Had To Suggest This To My Doctor?

Soonerman

Recommended Posts

Soonerman Rookie
Soonerman
Posted

Hi, I am new to this forum and I am pretty certain that I have Celiac Disease I hope that you all can help me more than doctors have. Years of visiting doctors and various attempts at diagnosing what was wrong with me, has led me to do my own research. The only thing doctors have found is low B12, low blood pressure, glucose/diabetes test (nothing found), spastic colon... no reasons, just symptoms. And they treated the low B12 with shots, but I have always asked what is the cause of the low b12, I mean I eat well, I am a young man and I am in good shape. My most recent doctor has run out of ideas and is sending me to Chronic Fatigue Specialist.

Well I just recently researched this disease and it fits my symptoms, so I had to bring this idea to my doctors attention. She is actually pretty familiar with the disease and says that it does fit, so I wonder why it didn't cross her mind and why I would have to bring it to her attention. Is it because I am a man, I noticed that women are more likely to have this, but how unlikely is it for a man to have it?

My main question is whether the blood tests are worth it and how conclusive they are? My doctor said it might be best for me to do the gluten-free diet and forget about the tests because they may not be conclusive and the only treatment is gluten-free. So i have started the gluten-free diet, and honestly so far I do feel alot better (although I do normally have worse days than others and it has only been about 2 weeks on the gluten-free so probably too early to tell). But I would like to know if the blood test(s) are positive, is that certain and what are the best blood test(s) to do? Also if I am currently doing the gluten-free thing and they do the test, will it affect my results or will it be positive regardless?

Thanks in advance

Ryan

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

Celiac.com Sponsor (A8-M):


Guest j_mommy
Guest j_mommy
Posted

Here is what I think :D

If you think that you will ever what a diagnosis through blood tests or a biopsy then I would do it now. Because if you start the gluten-free diet and then decide a month/year down the road you do want to go through the testing you would have to do a gluten challenge. And for me when I get glutened now after being gluten-free, the symptoms are even worse!

I personally wanted to know for sure so I had the testing done! If you are going to do that make sure they run teh full panel and take 8-10 samples atleast in teh biopsy!

Good Luck with whichever you choose!

gfpaperdoll Rookie
gfpaperdoll
Posted

or you can test thru Enterolab.com

one reason some doctors will not diagnose it is that you will then get well and not need to keep going to the doctor. You know if that doc diagnosed the 50% of her patients that probably have celiac then her practice would shrink to nothing... Also, docs are not wanting to "distress" their patients by telling them the truth, which is all the junk that they are eating everyday is slowly killing them... or not so slowly as the case may be.

Personally, if I died tomorrow I would not eat gluten today because I want to feel good every minute that I have on this planet...

mftnchn Explorer
mftnchn
Posted

The issue is that the blood tests and biopsy pick up the advanced level of damage in the intestines only. So once you go gluten free healing occurs and false negatives are the norm.

So yes, if you want a diagnosis, go back on gluten (significant amount) and do the tests now. Otherwise, sounds like you are on the right track and just stay on the diet.

BETTYBOO Newbie
BETTYBOO
Posted

You can not take the test if you are gluten free. It looks for antibodies in your blood and will not show them if you are gluten free. In England you take the blood test and then have a biopsy. I was told after I had the blood test that he was 99% certain that I had coeliac disease and then I had the biopsy and this confirmed it. In laymans terms for the biopsy there are villi in your gut that absorb vitamins. In a coeliac these get flattened and mean that you can not absorb certain vitamins. Therefore if you are on a gluten free diet the villi could possilbly have healed and then you might be tested negative. So my advice would be to carry on eating gluten but get the tests done asap. I have been gluten free for 4 years and I feel 100% better although it does take time. Good luck with your tests!

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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. 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/
    3. 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...
    4. 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...
    5. Scott Adams
      0

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

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,043
    • Most Online (within 30 mins)
      7,748
    Churro
    Newest Member
    Churro
    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.