Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Is celiac testing necessary?

Wise1
 Share

Recommended Posts

Wise1 Newbie
Wise1
Posted

Hi, I have been debating for some time on if I should get testing for celiac disease. It runs in my family, and I’m pretty sure I have it based on the symptoms I get when I eat gluten. I have been trying to follow a strict gluten free diet for about six months, and I’ve noticed the symptoms for about three years. For reference, I am 20 years old and female. My question I guess, is that if I already follow a gluten free diet and know about my symptoms, is testing for celiac really necessary? Are there benefits to being officially diagnosed? 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

In the UK there are certain government subsidies if you have an official diagnosis. But if that doesn't apply to you where you live then the only benefit would be psychological and social. Some people seem to require an official DX in order to stay on the wagon and not rationalize it all. Some report that their family and friends won't believe them without an official DX.

Scott Adams Grand Master
Scott Adams
Posted

There are also other things to consider, for example an official diagnosis would likely lead to increased costs for private life and/or medical insurance--life insurance for sure, but on the medical side it depends a lot on the type of insurance you have, where in the world you live, etc. Most people don't mention this, but it is a fact, so you may want to consider this as a possible downside.

The only major upside, at least in the USA, to a formal diagnosis might be that it would help to keep you 100% gluten-free, if that is something that you would need to help you stay gluten-free. Also there may be some follow up care that you might not be able to get if you don't have the formal diagnosis, but many celiacs, especially in the USA, are not offered regular follow up care for it anyway--I never was.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      35

      Struggling to get into a good pattern

      Yep,yep,yep, called it from experience. I've lived through SIBO and Candida myself. I get a different sorts of reactions to dairy, high sugar consumption, and gluten. I react to Casein, the protein in dairy. Try the AIP diet. Dr. Sarah Ballantyne designed it and is a Celiac herself. Her book, the Paleo Approach, has been most helpful.
    2. knitty kitty
      - knitty kitty replied to MMeade's topic in Coping with Celiac Disease
      7

      Gluten Allergy

      Yes, I know. Without sufficient Folate, Cobalamine, and Pyridoxine, the body can't get rid of high homocysteine levels. High homocysteine levels make one restless, interferes with sleep and resembles ADHD symptoms. High homocysteine levels occur in Celiac Disease. Chronic high histamine levels lead to high homocysteine levels. Impact of supplementation...
    3. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      35

      Struggling to get into a good pattern

      You called it @knitty kitty. I went to another health care provider for another opinion, and based on some tests they did, they suggested I might also be dealing with a fungal issue (candida and/or mold). I saw that you mentioned before in this chain that some people on this forum also get Candida infections. So it seems that I am possibly dealing that...
    4. lmemsm
      - lmemsm replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      38

      Supplements for those Diagnosed with Celiac Disease

      I'm concerned about calcium. I don't think I'm getting enough especially since I ended up having to get off dairy when I went gluten free. However, if you have too much calcium, it can deposit in the wrong places and you can get thinks like bone spurs. I'd like find a decent supplement for that. Was thinking of looking into the algae based calcium supplements...
    5. lmemsm
      - lmemsm posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      bread

      Wanted to tell someone, I finally made an edible gluten free bread. It took me several hours to make and it didn't taste like what I was trying to make, but it did taste like a bread. Was looking all over for bread machine recipes and I ran across this one on the Internet: https://www.snapcalorie.com/recipes/gluten_free_oat_challah_bread_machine.html ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,428
    • Most Online (within 30 mins)
      7,748
    Nancy lang adler
    Newest Member
    Nancy lang adler
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      Yep,yep,yep, called it from experience.  I've lived through SIBO and Candida myself.  I get a different sorts of reactions to dairy, high sugar consumption, and gluten.  I react to Casein, the protein in dairy.   Try the AIP diet.  Dr. Sarah Ballantyne designed it and is a Celiac herself.  Her book, the Paleo Approach, has been most helpful.
    • knitty kitty
      Gluten Allergy

      By knitty kitty · Posted

      Yes, I know.   Without sufficient Folate, Cobalamine, and Pyridoxine, the body can't get rid of high homocysteine levels.  High homocysteine levels make one restless, interferes with sleep and resembles ADHD symptoms.  High homocysteine levels occur in Celiac Disease.  Chronic high histamine levels lead to high homocysteine levels. Impact of supplementation with vitamins B6 , B12 , and/or folic acid on the reduction of homocysteine levels in patients with mild cognitive impairment: A systematic review https://pubmed.ncbi.nlm.nih.gov/34058062/ Homocysteine, Pyridoxine, Folate and Vitamin B12 Levels in Children with Attention Deficit Hyperactivity Disorder https://pubmed.ncbi.nlm.nih.gov/30267523/ 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/ Prevalence of hyperhomocysteinemia in adult gluten-sensitive enteropathy at diagnosis: role of B12, folate, and genetics https://pubmed.ncbi.nlm.nih.gov/15952099/ Homocysteine, Vitamins B6 and Folic Acid in Experimental Models of Myocardial Infarction and Heart Failure-How Strong Is That Link? https://pubmed.ncbi.nlm.nih.gov/35454125/
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      You called it @knitty kitty.  I went to another health care provider for another opinion, and based on some tests they did, they suggested I might also be dealing with a fungal issue (candida and/or mold).  I saw that you mentioned before in this chain that some people on this forum also get Candida infections.  So it seems that I am possibly dealing that issue in my gut as well. I think some of the symptoms that I've been not able to understand now make a lot of sense within this context (such as why eating dairy and sugar sometimes causes me to get headaches, joint pain, chills, feel like I have the flu... if these things are making the candida infection worse by feeding the candida, and then my body responds by trying to fight it off, then I basically am fighting off an infection, which is exactly what it feels like).  The flu-like reaction that I get when I eat dairy is a distinct reaction than the one I get from getting glutened (which is also bad, but different: headache, sharp abdominal pains, gas, diarrhea). That's what made me think there was something else at play. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I'm concerned about calcium.  I don't think I'm getting enough especially since I ended up having to get off dairy when I went gluten free.  However, if you have too much calcium, it can deposit in the wrong places and you can get thinks like bone spurs.  I'd like find a decent supplement for that.  Was thinking of looking into the algae based calcium supplements since they're more natural than some of the others available, but seem rather expensive.  When possible, I try supplement with food sources.  One or two Brazil nuts usually have the full RDA for selenium.  One Barbados cherry has the daily RDA for vitamin C.  I also use seaweed to help supplement iodine since I don't use iodized salt.
    • lmemsm
      bread

      By lmemsm · Posted

      Wanted to tell someone, I finally made an edible gluten free bread.  It took me several hours to make and it didn't taste like what I was trying to make, but it did taste like a bread.  Was looking all over for bread machine recipes and I ran across this one on the Internet:  https://www.snapcalorie.com/recipes/gluten_free_oat_challah_bread_machine.html  Used it as a starting point, but I swapped out the tapioca with arrowroot and the xanthan gum with guar gum and glucomannan.  I also made it using the gluten-free pizza mode on my Panasonic bread machine and then took the batter out and put it in a bread mold to give it some shape.  I let it rise another 20 minutes and baked it at 350 degrees Fahrenheit for 20 minutes in the oven.
×
×
  • Create New...