TTG level post diagnosis

[ladyfood]

I am a Registered Dietitian who was diagnosed with celiac at the age of 58, (1 year and 4 months ago). At the time, my GI doc informed me that the TTG was 250+ which he said could be in the thousands. One year after diagnosis, my TTG was down to 114.5. (Disappointing because I am very strict and have NEVER eaten anything knowingly with gluten since diagnosis.)  I waited another 4 months and repeated with a result of 109.2. (devastated.)  I eat whole foods. Has anyone else had this much difficulty reducing TTG on a strict gluten-free regimen? 

[tessa25]

I am 54 and was diagnosed 2 1/2 years ago. Had no improvement the first 3 months and decided to get my blood tested monthly while I figured out what I can eat. That was 2 1/2 years ago.  I only get better on a spice free low acid liquid diet. When I stuck with just mashed potato soup and vanilla ice cream my numbers dropped by 10 points or more in a month of no cheating. I went from >100 to 32 that way. Then I got a temporary milk allergy and now chocolate almond milk is the liquid along with coconut milk. It's harder to do all liquid many consecutive days in a row, but some chicken doesn't make me worse.

Anyway if I were you I'd get checked monthly and try a simple diet of eggs, homemade soup and stew to see if avoiding crunchy spicy food helps. Based on results you could add on from there.

 

 

 

[kareng]

Look up the Fasano diet for Celiacs with numbers that won't come down.  

[cyclinglady]

I too am in my 50’s and was diagnosed with an elevated DGP IgA (all other tests on the panel were negative) and biopsies revealing a Marsh Stage IIIB.  Because My hubby had been gluten free for 12 years, I was confident that I knew the diet well.   My anemia resolved within a few months.  I made the mistake of not returning to my GI.  My PCP checked for bone density (osteoporosis) and vitamin deficiencies (good) based on a follow-up guideline I found.  We did not run antibodies tests.  After a major glutening the second year (suspected two products that did not contain gluten and were not consumed by my hubby, but never tried them again), I went to a new GI (insurance change).  My new GI tested ordered the complete blood panel which showed my DGP IgA was off the charts and the others still negative.  I did not go back again until the following year when I was somehow glutened again!  My DGP IgA was off the charts again, and I was very sick.  It seems that vacationing was the culprit despite being very careful. 

I became sick with a tooth infection, flu, a cold, all within month or so last January 2017. .  This time, my reaction was even worse.  I developed daily chronic hives (not DH), reflux, vertigo and had episodes of passing out.  My GI, Allergist and PCP suspected autoimmune since my antibodies (both DGP and TPO (thyroid)) were off the charts.  Mast Cell Activation is also a consideration, but there is no cure for that except to be on a cocktail of antihistamines which I am doing.  Six months and things resolved for the most part after going on a modified gluten-free diet (Fasano) but did not eliminate  all processed foods (e.g. plain yogurt, hard cheeses, gluten-free nuts, coffee, gluten-free marked ice cream and no grains).  My diabetes finally went into the normal range, but my DGP is still elevated a lot.  Is it coming down or going up?  

So, I am getting an endoscopy  next week to determine if celiac disease is the cause or another AI issue.  I am going crazy trying to figure out why I seem to get glutened.  Was it the three courses of antibiotics for my tooth infection last winter that contained gluten despite my checking?  Am I super sensitive?  Is 20 ppm too much for me?  Is there something else that can elevated DGP? Am I a refractory celiac?  Is it a new autoimmune issue?  

So, I get your frustration.   I have not eaten out in a year (even a year ago it was at a reputable 100% gluten free restaurant).  I am the gluten Police.  I do not even eat gluten free foods that I prepare for my family.   The exception being those gluten-free Christmas Cookies baked with Pamela’s Flour under 5 ppm) and I vomited those up the night before Christmas Eve and my stomach is pinching (a tell tail sign) because heck, I am getting that endoscopy!  

So, maybe I have Crohn’s, another AI or I have refractory or hopefully just super sensitive.    My research has revealed little and my GI is perplexed.  Soon, I will find out.  

You are not alone!  

Note:  I rattled out this fast.  I hope my timeframe is correct!  

[RMJ]

Welcome to the forum!  How strict is strict?  I started by reading labels and avoiding anything where the ingredients indicated gluten.  Antibody testing said it was not enough.  Then I only ate things labeled gluten free.  Not enough.  Now I eat mainly whole foods, with small amounts of certified gluten free foods.  Even my vitamin D is certified gluten free.  Rarely eat out, and then only if restaurant is completely gluten free or has certified gluten free procedures for some dishes.  Latest blood test says that after five years it is finally enough.  I am also very careful about contamination in a shared kitchen. Separate food storage and prep areas, separate dishes and utensils, separate dish scrubber, separate hand soap and hand towel.  No kissing unless my husband has brushed his teeth.  

[Posterboy]

10 hours ago, ladyfood said:

I am a Registered Dietitian who was diagnosed with celiac at the age of 58, (1 year and 4 months ago). At the time, my GI doc informed me that the TTG was 250+ which he said could be in the thousands. One year after diagnosis, my TTG was down to 114.5. (Disappointing because I am very strict and have NEVER eaten anything knowingly with gluten since diagnosis.)  I waited another 4 months and repeated with a result of 109.2. (devastated.)  I eat whole foods. Has anyone else had this much difficulty reducing TTG on a strict gluten-free regimen? 

ladyfood,

 you might want to read this thread.  cristina had some of the questions you had with her Ttg levels still being elevated.

you might also relook at your some of your medicines.  I found I was having issues with my BP medicine.

the/these things (medicine in my case) we consider "safe" sometimes turn out to bother us more than we realize sometimes.

I hope this is helpful.

posterboy by the grace of God,

[cristiana]

12 hours ago, RMJ said:

Welcome to the forum!  How strict is strict?  I started by reading labels and avoiding anything where the ingredients indicated gluten.  Antibody testing said it was not enough.  Then I only ate things labeled gluten free.  Not enough.  Now I eat mainly whole foods, with small amounts of certified gluten free foods.  Even my vitamin D is certified gluten free.  Rarely eat out, and then only if restaurant is completely gluten free or has certified gluten free procedures for some dishes.  Latest blood test says that after five years it is finally enough.  I am also very careful about contamination in a shared kitchen. Separate food storage and prep areas, separate dishes and utensils, separate dish scrubber, separate hand soap and hand towel.  No kissing unless my husband has brushed his teeth.  

RMJ - this is great.  Thank you.  Documented on another thread, I too have had the disappointing news that I wasn't doing enough because after four years of what I thought was being super strict it was not enough.  I take heart that at least my numbers are on a downward trend.  Come the New Year I'm going to do exactly what you are saying.