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

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

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

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

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

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.

  • 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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.