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 Explorer
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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.