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
charmaine broxton
Posted
:( 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
Mango04
Posted

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
Ursa Major
Posted

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
judy05
Posted
:( 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
par18
Posted
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
AndreaB
Posted

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
GlutenWrangler
Posted

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
taz sharratt
Posted
:( 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
taz sharratt
Posted
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
charmaine broxton
Posted
  • Author

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
Ursa Major
Posted

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
loraleena
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.