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Help/advice

Swd

By Swd
in Coping with Celiac Disease

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Swd Newbie
Swd
Posted

Hello, this is my first ever post to please bare with if this is in the wrong category.. been diagnosed since jan this year after multiple test last year .. do my best to stick to a gluten-free diet and dont eat what i shouldn't.. if i am consuming gluten cross contamination could be only reason id say. In the last 7 days i have jad a real bad stomach, a tight, gripping feeling getting worse when I eat .. last few days constipation .. finally ph9ned docs today and have had a blood test oit off given the current world situation but feel my constant worrying and anxiety probably not helping me and my mood with family. Hooe this is ok.any advice or others suffered similar. Male 32 years old.

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notme Experienced
notme
Posted

what sort of blood test did you put off?  how were you diagnosed with celiac?  are you eating out at restaurants/getting take out very much?    

i have had blood work done during this health crisis with no problems.  my doctor's office has strict protocols in place limiting their office capacity.  i only interacted with the 'vampire' lolz 

Swd Newbie
Swd
Posted
  • Author

I was diagnosed with a biopsy in January.. when i said put off that was only phoning the doctors this time thinking my symptoms in the last week would improve but unfortunately it has lasted a week now. I have been for my bloods taking today. Don't get takeouts often at all as there is very limited foods you can have from such places. Thanks for your reply

notme Experienced
notme
Posted

here is a helpful place to start looking for ways to manage our diet better.  it takes a bit to get "good" at it, lolz, don't feel alone.  the struggle is real, but not impossible.  i think i didn't eat out/take out for a solid year.  yeah, at first i was like:  o, yeah, no big deal, i'll just order off the gluten-free menu.  haaaa ha ha, there are a million and one ways to get cross contaminated when you're trusting somebody else to feed you safely!  

also, maybe start a food journal - everything you eat, and how you feel - you may need to skip dairy for awhile, and you might be sensitive to raw fruits/veggies for a while until you heal some.  depending on how long you went undiagnosed it may take some time.  i am still seeing improvements (mostly neurological now, it's the last to leave the party lolz) after 10 years on the gluten-free diet.  take heart and have patience.  welcome to the club you never wanted to join ;) 

Swd Newbie
Swd
Posted
  • Author

Thanks for your reply again, the diary a good idea.. i do think milk doesn't help me i must admit for some strange reason so will avoid for a while .. have also given up on the gluten free oats for breakfast as a possible cause for my recent discomfort  .. trusting others to cook gluten-free meals without cross contamination is hard

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    • Russ H
      Coeliac or not coeliac

      By Russ H · Posted

      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      The Struggle Has Overtaken Me

      By Wheatwacked · Posted

      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
      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.
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