Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

manasota

Recommended Posts

Gemini Experienced

You will find that notme! has a very finely tuned sense of humor, which we appreciate.  Doesn't hurt to laugh at things because if you don't, your head would explode!  Ha, Ha!

 

I used to have a Buddha belly but that is long gone.  I have to ask....are you dairy free also?  I know you have cut out a lot of foods from your diet but dairy intolerance often goes hand in hand with Celiac.  It can be permanent or temporary, depending on how your gut heals.  Mine is semi permanent so I have to eat dairy lite.  Dairy will cause bloating as badly as celiac.Really think about what foods you are cutting out and ask yourself if you really need to.  I hate to see people cut out foods that they don't have to because it makes weight gain harder.  But dairy can be a huge problem for Celiac's and I did not discover that issue until 2 years into the gluten-free diet. That might explain the Buddha belly problem.

 

Also, as a fellow thyroid disease sufferer, I know how fatigued and draggy one can feel when the thyroid is off.  That might explain some of your fatigue and body pain. If my thyroid gets too low, I have joint pain in my fingers (I don't have arthritis) and I can barely get my butt out of bed in the morning to go to work.  I will also get sick and I never get sick anymore....only when my thyroid is wonky.  I think part of your problem is that you haven't been able to finely tune food and meds enough yet and it can take a while to do. Things change as you heal so it's very tricky in the beginning to attain balance. You also have to realize that as you start absorbing better, thyroid meds need adjusting.  Then if you get stressed, that can throw things off. We don't have the capacity to have our bodies adjust to stress as well because we have to do it manually by taking thyroid hormone as we don't make enough.  With other people without thyroid disease, their thyroid pumps it out on demand.  It only made me appreciate how well the human body is designed to work...only mine and yours and many other's don't work that smoothly.  Just keep doing the things you have been doing but think about the dairy issue.  Test your thyroid more often and make sure they do a complete panel on you every time until your thyroid is in a happy place and stable.  Not just the TSH but the Free T3 and T4.....always good to know what the actual hormone levels are.  Those are the ones readily available for use by your body.

 

About your eyes.......One of the other AI diseases I have is Sjogren's Syndrome.  It occurs frequently with Celiac and, as you were diagnosed older, odds are it could be a problem.  If a doc has told you that you probably have dry eye, it could be Sjogren's.  Is your mouth dry or do you have a lot of dental problems?  Do you have trouble swallowing food, especially bread?  There is a blood test for Sjogren's so it's an easy test but they are testing for antibodies so it can be like Celiac.....you can test negative and still have it.  Might be something to look into if you have symptoms because the docs won't look for it.

 

That's enough for now and I hope your head isn't ready to explode!  :)   Any questions, just keep posting....... ;)


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



Celiac.com Sponsor (A8-M):



manasota Explorer

I don't think my Buddha Belly is from dairy because I was totally off dairy for years & still had the BB.  I have restarted the SCD yogurt daily to get the giant probiotic doses recommended.  The BB has not increased.  (Maybe the SCD yogurt will help.)

 

I don't think I have Sjogren's because my mouth is not dry & I do not have dental problems.  Also, my eye issues are "only" intermittent.

 

My plan is to "just keep going" --like Churchill!  At my next MD appt., I'll get all the bloodwork you all have recommended.  My guess is that my continuing pain & fatigue are from a combo of the Graves and Celiac healing.  I will just keep going!

 

I might mention that my doc gave me zinc to treat the peripheral neuropathy (tingling in extremities) that I was having.  It worked for me!  I almost never have the tingling anymore.  YEA!

 

Just Keep Going!

Archived

This topic is now archived and is closed to further replies.

  • 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 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      New Study Reveals Hidden Gut Damage in Celiac Disease—Even Without Gluten (+Video)

    2. - Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease
      6

      The Struggle Has Overtaken Me

    3. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    4. - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    5. - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

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

    • Total Members
      134,197
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
×
×
  • Create New...