Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Questions


Michmap

Recommended Posts

Michmap Rookie

Hi, 

I've been gluten free for 15 months after diagnosis from very high blood levels (iGA I think). There was no question from doctors or consultants that I am celiac, so I didn't have the camera investigation. Now my new consultant seems concerned that I am not 100% better. I still get discomfort below my ribs sometimes; I have oesophigal burning; my stomach can be uncomfortable and I get bloating. All of the above is manageable (apart from when I accidentally get glutened) and part of what I expected as a celiac. It's not getting in the way of my everyday life that I still have these low-level issues. My new consultant has different ideas to consultant 1 and wants me to have the camera investigation which would mean eatting gluten for 6 weeks. I get very strong reactions to ingesting gluten so I really don't want to do that. My questions are: 

1) How realistic is it that I would have no digestive issues at all after 15 months of being gluten free (with occasional accidents)? 

2) How realistic is it that I would ever fully feel 100% healthy when off gluten even years after? 

3) I read on a blog here that I shouldn't touch gluten. Is that right? Is that because I might then touch my mouth or because it is ingested through skin? How far do I need to go with kissing my kids/ husband? Where do I draw the line? 

 

Thanks in advance


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



Celiac.com Sponsor (A8-M):



RMJ Mentor

It can take some time to heal on the gluten free diet, especially if you’ve had occasional accidents.

That said, I don’t see why your new consultant would want you to do a gluten challenge before the camera (endoscopy). Some doctors just don’t seem to believe other doctors celiac diagnoses and want to do tests themselves.  It sounds like you know gluten bothers you, since you’ve said you’ve been accidentally glutened.  So you know you need to be on a gluten free diet for life. Your current symptoms could be from celiac disease still, or something else.  If you do a gluten challenge and have an endoscopy there will likely be celiac damage but what would it tell you about your current symptoms?

RMJ Mentor

I didn’t answer your questions!

1. Not realistic, especially since you’ve had gluten accidentally.

2. Fairly realistic, as long as any nutritional deficiencies have been addressed.

3. Touching gluten should not be a problem for most with celiac disease, unless you then put your fingers into your mouth before washing them. Kissing someone on the mouth who has eaten gluten can be a problem until that person has brushed their teeth. 

Hope this helps.

Michmap Rookie

Thank you. That is really helpful and your thoughts about the endoscopy were my thinking too. I don't understand how it will help since I know I'm celiac. Your answers to the other questions are also really helpful. I think my ongoing issues might be a reult of the amount of time I've been off gluten, other intolerances (I am definitely intolerant to cow's milk, yeast, egg yolk and citrus...) and potentially other things. Thanks again. 

Mari Contributor

Hi Mitchmap,

I've been gluten-free for 18 years. The Dr. did not tell me about the gluten challenge before taking the Celiac Panel blood test. The IgA was elevated but the TTG was in the normal range. I was eating very little gluten foods at that time.

When I see a new provider they want to do the endoscopy (camera) but I tell them that if I'm glutened I get painful lower abdominal cramps and diarrhea. Also have the DQ8 gene which predisposes me to Celiacs.

Michmap Rookie

Thank you. My TtG was very high too even though I'd started a gluten-free diet. I'm hoping it will have improved. I think I will tell him I don't want the endoscopy. 

 

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Opinions on my test results/symptoms

    2. - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    3. - Wheatwacked replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?

    4. - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      3

      Anyone else with very high HDL?

    5. - Nicbent35 replied to Nicbent35's topic in Introduce Yourself / Share Stuff
      4

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,889
    • Most Online (within 30 mins)
      7,748

    Missymid
    Newest Member
    Missymid
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
×
×
  • Create New...