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

Help Do I Have Celiac


charmaine broxton

Recommended Posts

charmaine broxton Newbie
:( I'm so fed up. I had the blood test for celiac but it came back negative however when I eat anything with wheat or barley in I swell up like a pregnant lady. I get very tired and very depressed. I sometimes get sore bones and I go to the toilet a lot. My doctor said he's not going to send me for the biopsy as the blood was negative. Please can anyone help i'm so fed up and I can't get out of this viscious circle. Help! Charmaine.x :(

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



Celiac.com Sponsor (A8-M):



Mango04 Enthusiast

Hi - :)

You could definitely have celiac or gluten intolerance. If you know you feel better on a gluten-free diet, then go gluten-free! The test results could be wrong. You can simply eliminate gluten from your diet, and see how you feel. Or, if you'd like to pursue further testing, you might look into something such as Enterolab.

PS - I don't have any positive test results either - just a positive gene test. Sometimes experimenting with your diet is the best way to go.

Ursa Major Collaborator

Hi Charmaine, and welcome to this board. It sounds very much like you may at least be gluten intolerant. If you want official testing done, have it done by Enterolab if you can afford it. Open Original Shared Link

It's not cheap, but accurate, painless and would give you the answers you need. Since you don't have to be on gluten when doing their test (it's a stool test), I suggest you simply go on the gluten-free diet, to see if it helps you feel better. The diet really is the ultimate test, not the biopsy (even though that's what the ignorant doctors would like you to believe).

judy05 Apprentice
:( I'm so fed up. I had the blood test for celiac but it came back negative however when I eat anything with wheat or barley in I swell up like a pregnant lady. I get very tired and very depressed. I sometimes get sore bones and I go to the toilet a lot. My doctor said he's not going to send me for the biopsy as the blood was negative. Please can anyone help i'm so fed up and I can't get out of this viscious circle. Help! Charmaine.x :(

I had a negative biopsy and negative gene test. I was positive on one blood test ( IGA) which dropped when I went gluten free. My doctor insists that I can eat both wheat and dairy. We went round and round on this, it is my body and I know what I can eat and what I can't. That's why I don't see him anymore. I am gluten intolerant and you could be too.

par18 Apprentice
Hi - :)

You could definitely have celiac or gluten intolerance. If you know you feel better on a gluten-free diet, then go gluten-free! The test results could be wrong. You can simply eliminate gluten from your diet, and see how you feel. Or, if you'd like to pursue further testing, you might look into something such as Enterolab.

PS - I don't have any positive test results either - just a positive gene test. Sometimes experimenting with your diet is the best way to go.

Could not have said it any better.

Tom

AndreaB Contributor

If you can swing it I would also recommend enterolab. I had our family done after my allergy tests came back with moderate wheat/gluten/gliadin/soy allergies. Out of the 4 of us that got tested 3 of us have an active intolerance. We had no blood work done or anything since no one had any obvious symptoms. My oldest son has a mild malabsorption also and 2 of us are also intolerant to soy. Enterolab also does a gene test.

GlutenWrangler Contributor

Charmaine,

Doctors can be useless sometimes. Don't take what he says as fact. If you suspect celiac, pursue it yourself. My doctor was dead-set on IBS, and he was wrong. Enterolab is a great way to get a diagnosis if you can afford it. You can go gluten-free now if you want and it won't affect the test results. If you can't afford Enterolab, just try the gluten-free diet. If you feel better, you will know that it is celiac. Just don't put everything into your doctor's hands. He may not be looking out for what's best for you. Good luck!

-Brian


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



Celiac.com Sponsor (A8-M):



taz sharratt Enthusiast
:( I'm so fed up. I had the blood test for celiac but it came back negative however when I eat anything with wheat or barley in I swell up like a pregnant lady. I get very tired and very depressed. I sometimes get sore bones and I go to the toilet a lot. My doctor said he's not going to send me for the biopsy as the blood was negative. Please can anyone help i'm so fed up and I can't get out of this viscious circle. Help! Charmaine.x :(

you can still have celiac and have a negative blood test, go on a gluten free diet for a while and see what happens, in my opinion its the most accurate test possible for celiac. you got nothing to lose.

taz sharratt Enthusiast
Hi Charmaine, and welcome to this board. It sounds very much like you may at least be gluten intolerant. If you want official testing done, have it done by Enterolab if you can afford it. Open Original Shared Link

It's not cheap, but accurate, painless and would give you the answers you need. Since you don't have to be on gluten when doing their test (it's a stool test), I suggest you simply go on the gluten-free diet, to see if it helps you feel better. The diet really is the ultimate test, not the biopsy (even though that's what the ignorant doctors would like you to believe).

ursula, im in the uk and was wondering about entrolab, want the test as i dont want to go for biopsy and go back on gluten,do you know if entolab do tests in uk? have emailed them but no answer yet, also do you know about any other company that does this kind of testing and would do it for overseas customers? sorry for hijacking this thread but ive never heard of this company or this kind of testing before.

charmaine broxton Newbie

Hi Taz

I'm from the UK too. I had a response from enterolab. They do deal with the UK it will just be slightly more expensive as you will have to paye the shipping costs.xx :)

Ursa Major Collaborator

Right, I asked them a while back if they test people in Canada, and they said that they test internationally, but you have to pay to send your stool samples back by courier.

loraleena Contributor

There are a lot of false negatives on those tests. You could have a stool test done by Enterolabs. Or, you could just go gluten free and see how you are. Good luck.

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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.