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

Testing Questions

wacky~jackie

Recommended Posts

wacky~jackie Rookie
wacky~jackie
Posted

Hi all! First I just want you to know that I have found this message board very informative.

Here's a short bio. Older sister diagnosed by positive blood tests and positive biopsy. She recommended that I be tested as I have many symptoms (bloating, joint pain, thyroid, depression, gall bladder, headaches - just to name a few!!). After much research I decided to ask my doctor to do blood tests. She really listened to what I had researched and my symptoms and ordered blood tests. After waiting almost 2 weeks for the results (which I didn't expect such a long wait.) they came back negative (IGG of 4 and IGA of 5, iron ok, B12 ok) but she only did those four tests.

My question is should I have her do further testing based on some of the posts I have read? Should I keep the appointment that I have scheduled with a GI and request a biopsy? Or do I just go gluten-free?

In the past I was on the Atkins diet and felt 100% better - which I now believe is because my gluten consumptions was definitely dramatically reduced (although probably not 100% gluten free). I'm ready to cut-out gluten completely to feel better but I don't want to do a gluten challenge for more tests so I just keep eating like I always have. I feel like I'm in limbo!!

Any suggestions?

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

It is your choice what to do next. Your bloodwork was negative, but that could mean that there just is not enough damage to show up. You can still get the biopsy if you want to. You say you felt better on the Atkins diet, so I recommend you try the gluten-free diet for 6 weeks. A doctor's diagnosis is not needed to eat gluten-free, so if you feel better on a gluten-free diet, there is no reason why you can't remain on it. The dietary response is a test in and of itself.

AndreaB Contributor
AndreaB
Posted

If you can swing the money I would recommend Enterolab. They can catch the intolerance before it hits the blood as they test stool. Open Original Shared Link for more info.

mle-ii Explorer
mle-ii
Posted

I too noticed how much my symptoms improved when doing Atkins, I didn't make the link to gluten until I found out I had Lymphocytic Colitis and found that others with my disease had improvement with going gluten free. I had Enterolab test me and found that I had gluten sensitivity as well as the genes.

wacky~jackie Rookie
wacky~jackie
Posted
  • Author
I too noticed how much my symptoms improved when doing Atkins, I didn't make the link to gluten until I found out I had Lymphocytic Colitis and found that others with my disease had improvement with going gluten free. I had Enterolab test me and found that I had gluten sensitivity as well as the genes.

It was amazing. I only ate when I was hungry. No more cravings. I had no bloating and my knees and back felt 100% better. I ended up going off it after some complications from my gall bladder removal and the hospital put me on a clear liquid diet (all sugar!!! which is a major no-no on Atkins) I tried to go back on it when I started gaining the weight back but I haven't had much success because it's too strict. At least on a gluten-free diet I can try corn, potatoes and rice and I can have fruit - none of that is allowed on Atkins. So I think I'll be able to stick to gluten-free pretty easily, especially if I feel better. I guess I was hoping for a definite positive diagnosis. I figured that I could stay away from the bread and stuff easier if I knew it would damage my intestine. I'm worried that I'll be more apt to cheat without the diagnosis. :(

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. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      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...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      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 s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    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

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • 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.
×
×
  • 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.