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

Specialist Says 'while I'm Reactive, I Don't Need To Be Extremely Careful To Avoid Gluten'


Bananas

Recommended Posts

Bananas Newbie

Hello! I'm a newbie to this forum and I'm really impressed by all the information and knowledge members are sharing. Thank you!

I am very confident I've got gluten intolerance but I have a few questions. I'm 26, female and have 'belly issues'. However, I've been told that I don't need to be very careful to avoid gluten.

I had the endo & colonoscopy last week to rule out ulcerative colitis, crones, celiac disease, ulcers and all the other things.

Apparently my bowels are beautiful and although I almost certainly had an ulcer at some stage, it has healed itself (apparently this is from all the neurophen and aspirin I took). I've got 'IBS' - which means that I've destroyed my savings and Christmas for absolutely no reason!

We're still waiting on the biopsy results for celiac disease, but I am certain they'll come back negative. I didn't eat enough gluten for the test as I was scheduled two weeks later and I struggled to consume the 2 sandwiches a day. Also, (and please correct me if I'm wrong) as I'm still not at the extremely sick end of the disease yet, it's unlikely that they'll be able to find the diseased tissue in the random selection of the biopsy. My blood tests (taken about 3 months before I saw the specialist) came back as borderline, which is interesting as I eat hardly any gluten and was having a day when I didn't feel so bad.

My gastroenterologist told me that if the biopsy comes back as negative, then I'm likely to not have an extreme reaction to gluten and therefore I don't need to go out of my way to avoid it. However, I do have a reaction to gluten and since the procedure, I've become extremely sensitive. Is there such a thing as being only 'a little bit sensitive?' to gluten as his opinion is very different to what I've heard?

My sister is celiac and is the runt of the family. My mother and another sister also have reactions when they eat certain foods.

Excuse the long post, but I would like to know if it is ok to eat gluten sometimes when one isn't at 'deaths door'.

If you need symptoms or any other information, please let me know.

Thank you!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Excuse the long post, but I would like to know if it is ok to eat gluten sometimes when one isn't at 'deaths door'.

No it's not safe to only eat it sometimes. But I think your body is going to let you know that anyway once you have been strict with the diet for a bit and have healed. If you are forming antibodies to gluten even a small amount will flare those antibodies into action.

Now that you have had your testing done do give the diet a good strict try. I hope your feeling better soon.

Bananas Newbie

Thank you very much. When I was strictly gluten free and enjoyed lots of exercise I was very healthy.

frieze Community Regular

A "little bit" celiac, is like being a little bit pregnant....

quakenbake Rookie

If you were very healthy while on a strict gluten-free diet and exercising, then you should go back to that. Since there is so much food sensitivity (including actual Celiac) in your family and you're done with your tests, it just seems like a good choice all around to avoid gluten.

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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

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

    • Total Members
      132,912
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      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
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.