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any advice would be helpful

Jane07
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Jane07 Enthusiast
Jane07
Posted

i have been gluten free for about 2 yrs i had a ttg recently done my blood test was .7 higher then last time.

i must be doing something wrong im still not in the normal range.

What advice would anyone give?

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RMJ Mentor
RMJ
Posted

Were the two tests done by the same lab? Do the tests have the same normal ranges?  Each test manufacturer uses their own system of units when reporting results.

Have your results gone down at all since diagnosis? 

Are you sure you’re gluten free? Do you eat at restaurants? I would recommend that you take a really good look at your gluten free diet.

It took six years for me to get all my results down to the normal range (I was originally positive for TTG IgA, TTG IgG, DGP IgA, DGP IgG and EMA). I started just avoiding wheat, rye and barley.  My results came down but one was still high.  Then I made sure any processed foods were labeled gluten free.  My results came down more but one was stubbornly positive.  Then I would only eat processed foods if certified gluten free or from a manufacturer with an excellent reputation among those with celiac disease.  All my results were finally normal.

My results went back up a little when I started doing a lot of baking with a reputable but not certified gluten free flour.  When I switched to certified gluten free flour my results went back down to normal.

 

Jane07 Enthusiast
Jane07
Posted
  • Author

they gone down alot since my diagnosis .  the ttg test was done in a hospital

it still not in the normal range 2 yrs later. the last time went up by the one before a little.

maybe it just takes more time really trying to be careful

i need to look at everything i eat to make sure 

knitty kitty Grand Master
knitty kitty
Posted

@Jane07, welcome to the forum!

Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients is common in Celiac Disease.  Supplementing with vitamins and minerals that are commonly low in the newly diagnosed can help immensely with recovery.  

Vitamin D is frequently low.  Vitamin D helps regulate the immune system and calm it down.  The eight essential B vitamins help repair and maintain our body's health.  Magnesium, calcium, zinc and other minerals are necessary, too.  Vitamin C helps, as well.  Benfotiamine, A form of Thiamine, has been shown to promote intestinal healing.

Are you still consuming dairy?  Eliminating dairy may bring some improvements.  Have you tried the low histamine Autoimmune Protocol diet?  Developed by a Celiac, Dr. Sarah Ballantyne, the AIP diet can improve symptoms while healing.  

Jane07 Enthusiast
Jane07
Posted
  • Author

im do have low zinc and iron i know.

thanks for the feedback.

maybe i should be off dairy i feel i need dairy for calcium 

im also a vegetarian. 

knitty kitty Grand Master
knitty kitty
Posted

There's a Vegetarian version of the Autoimmune Protocol Diet.

There are vegetables that can provide Calcium...broccoli, kale, lentils, tofu.  Talking to a nutritionist can help identify vegetables that can provide you with the minerals and vitamins you need.  Getting dietary advice is part of proper follow up care for people with Celiac disease.

tTg testing is used for diagnostic purposes.  It should not be used to signify compliance or healing.  

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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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