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

Blood Results Received

julie5914

Recommended Posts

julie5914 Contributor
julie5914
Posted

So, I was very surprised to have positive blood results and honestly I need to be told by somebody that this means I do in fact have Celiac before I can be gluten free. My symptoms:

-bloating

-weight gain

-sluggishness

-brain fog

-anemia (may have been because of ulcer)

-IBS symptoms - totally spastic large intestine

Here are my results:

- Gliadin IGG 106.3

- Gliadin IGA 61.2

- Edomysl IGA positive

I am a carbaholic! If this really does mean that I have celiac, can you recommend any good books for learning to be gluten free and to scare me into sticking to it?

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Yep you have it....the EMA which you tested positive for is a very specific test and is almost unheard of to have a false positive there. Your results are overwhelmingly high.

There is a statistic thread on here now. If you do not adhere to the diet it knocks an average of 10 years off of your life and increases your chance of cancer by 40-100 times. It also increases chances of other life threatening and disabling illnesses. If that's not enough to scare you into following it then I don't know what is.

Guest nini
Guest nini
Posted

Julie, your blood test results are like mine. Unusually high. YES you have Celiac and Gluten is POISON to your body. Just remind yourself every time you start to doubt this that GLUTEN IS POISON, GLUTEN IS POISON, IF I EAT GLUTEN I AM KILLING MYSELF WITH POISON.

Your symptoms are also like mine BEFORE the celiac kicked into full gear and almost killed me. I had a year of living in hell, rushing to the emergency room, heart pain, severe vomiting and big "d", dehydration, anemia, hypoglycemia, high blood pressure, hypothyroid, high cholesterol , and on and on.

julie5914 Contributor
julie5914
Posted
  • Author

Why do so many doctors feel that the blood test is not good enough? I happened to have my OB/GYN appt. yesterday, so I told her about it - she seems quite knowledgeable- her sister is celiac, but she said I need to go see a gastro specialist to make sure it is celiac because no one is sure how accurate those blood tests are for diagnosing. She mentioned that the false positives are not too high, but if they tested everyone for the anitbodies, they might have a lot more false positives. She is a great doctor and I respect her very much, so I am trying to get a specialist now to get his opininon on it. She also of course mentioned that she was probably not the best person to talk about it with, seeing as how she specializes in other things. :) Good news is that it is definitely not a cyst causing the trouble. Yay!

I was gluten free this weekend and didn't feel great or awful. Then I got worried that I would get a false neg. on a endoscopy (which for some reason I think will happen anyway) and started eating a bunch of gluten. I started falling asleep during my favorite show at 9pm and am now completely stopped up. :( I hope I get whatever tests he may want soon so that I can go back to gluten-free.

julie5914 Contributor
julie5914
Posted
  • Author

Uff, I can't get in to see the specialist's nurse praticioner even until June 17th, and they want me to keep eating wheat until then! (And probably after then, cause I imagne they are not doing a scope that day!)

egardner Newbie
egardner
Posted

Julie, I went through what you went through with not being able to see doctors quickly and having some tell me the blood test doenst mean you have celiac disease. I cancelled my scope at the last minute and decided my symptoms were serious enough that I was goint to take action. Nearly two weeks gluten free, life is beautiful. At my follow up, the GI guy acted like he had totally agreed with me all along. Because I am responding so well to the diet, he said it was obvious I had celiac disease when you couple that with my blood tests. (similar to your results) It is so funny how doctors cant admit that sometimes you dont need to do tons of crazy tests, just go with it. Good luck to you, I know how miserable the waiting can get. And remember what Kaiti said about the cancer, I know three people in my family alone who died of rare stomach cancers, and now that is being linked to celiac disease as a result of my tests.

Guest nini
Guest nini
Posted

Julie, my GI doc based on my blood test results (like yours) told me to start the gluten-free diet IMMEDIATELY. No waiting around for scopes, no gluten challenges, no cheating ever, he said that it was definite based on my symptoms and the positive blood test result that I have celiac... I'm so thankful that he did that because I was able to start feeling better much sooner.

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

Celiac.com Sponsor (A8-M):


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. par18
      - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free...
    2. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

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

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    4. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    5. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
×
×
  • 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.