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Dealing With Fatigue And Lack Of Stamina

jymles

By jymles
in Coping with Celiac Disease

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kabowman Explorer
kabowman
Posted

I take multi vitamins (don't care for the liquid), plus 500 C, 1000 calcium, and the B vitamin-complex/complete.

Blood sugar is a problem but I keep that pretty controlled because of a yeast intolerance too which elimates almost everything sweet and I eat protein with most carbs for balance. Discussed with dietition.

I have been gluten-free since July 2004, soy, peanut, and corn free since August 2004, almond and garbonzo bean free since September 2004, yeast free since October 2004, and lactose/casein and MSG free for more than 5 years

My thyroid has been checked within the last 6 months. My iron, last we checked about 6 months ago was OK too...and the doc said I don't have all the points for (sp) fibremyalga.

I have NOT been formerly dx with celiac disease. I was gluten-free for several months before my doc checked and by then (not before) I knew there was a danger of no visible signs for a positive ID and I told the docs that I REFUSED to go back in order for a positive ID and no definitive signs of damage were found.

-Kate

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mela14 Enthusiast
mela14
Posted

Hi Kate,

Boy you sound a lot like me with all the intolerances. How do you do it? I am still having a hard time and often find myself eating something I think is safe and then reacting to it. Vitamins are a little problematic for me as they irritate the heck out of my gut. I just started cutting my vitamins in quarters. Let's see how that works for me. All my blood tests were good....not showing any vit deficiencies.

I am going to columbia presbyterian tomorrow for a consult ....just in case someone is missing something. I know I will NOT go back on gluten for an endoscopy so let's see what they have to say about that. I thought I was doing a good job watching the gluten but test results yesterday showed a number of 35.....still high but at least nowhere near 66 from 4 months ago.

My dr also ran other tests and of course soooooo many more intolerances...ones that I have been reacting to. What do you eat? I am having a hard time with variety and often find myself craving something sweet. I have given into raisins, and some fruits and apple sauce but now...the Candida is in flare! back on a round of Nystatin to help me along. With my immune deficiencies it is hard to keep things in check.

OH WELL................more chicken tonght for dinner!

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    1. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Coeliac or not coeliac

      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...
    2. CC90
      - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Coeliac or not coeliac

      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.
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      - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Coeliac or not coeliac

      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 o...
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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      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
      Coeliac or not coeliac

      By CC90 · Posted

      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
      Coeliac or not coeliac

      By Wheatwacked · Posted

      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
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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