10 year old boy, Celiac, gluten-free diet, elevated TTG IgA and iron deficiency anemia

[chiefsilverback]

My son was diagnosed with Celiac last year after developing quite severe iron deficiency anaemia, Haemoglobin was 5.9g/dl. He got blood transfusions and then was tested (TTG IgA 12u/ml) and finally scoped to confirm Celiac.

He had follow up labs a couple of weeks ago prior to his 6 month check up with his Gastroenterologist and his TTG IgA has increase to 48.4u/ml and his Haemoglobin has dropped to 8.6g/dL. We have been pretty strict with a gluten-free diet for him since he was diagnosed, and he is very good about checking anything before he eats it, but his Dr thinks he could still be getting some gluten, possibly through cross-contamination as we haven't gone fully gluten-free in the house.

He hasn't complained about feeling like he's eaten gluten for months, so as a test he ate a single Joe's O (Trader Joe's 'Cheerio' containing wheat) and he was up for half the night and didn't feel well enough to go to school the next day. I don't know how gluten exposure is/can be measured, but it's hard to imagine he's consuming enough gluten to cause the elevated TTG IgA and iron deficiency anaemia, but without triggering any stomach pain.

Has anyone else experienced similar?

[Scott Adams]

Can I ask what the reference range is for the tTg test he took? Different companies have different ranges, so it's hard to know where he falls just with his current measurement. Also, what was his initial tTg result at the time of his diagnosis--did it go down at all?

It's very important that his diet is 100% gluten-free, and even tiny amounts of gluten can add up and trigger the autoimmune reaction that can damage his villi. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

  This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

 

 

[Wheatwacked]

On 1/15/2024 at 9:00 PM, chiefsilverback said:

iron deficiency anaemia

Are you boosting his vitamins?  Tested for deficiencies?  Low vitamin D can cause poor B12 or Folate (B9) intake which can cause anemia.  Gluten Free processed foods are not required to fortify with folic acid.  Work around is to eat lots of leafy greens and other low omega 6 foods with folate.

       Eating more food with Choline like eggs, beef, liver, milk reduces folate needed to methylate homocysteine.  Safe to use choline supplement pills.  Folic acid; synthetic folate added to gluten supplement folate; has been shown to cause increased prostate cancer compared to placebo in double blind clinical trials. I was diagnosed with prostate hypertrophy at 21 years old and it resolved at 63 years old when I started GFD.  Food sourced folate does not so that is a protential advantage to the gluten free diet.

     Get tested for vitamin D, B12, B6 and Homocysteine.  High homocysteine can be caused by insufficient absorption of B12, Choline, B6, Folate and/or Taurine, an antioxidant amino acid.  Homocysteine is associated with inflammation and is considered an independent indicator of cardiovascular inflammation.

Any specific symptoms other than anemia?  

[chiefsilverback]

Thanks for the replies. His doc ordered repeat labs last week and his TTG IgA came back at 8.3 so a significant decrease from 48.4 a month ago. I don't know how quickly TTG IgA level change, but it could be that there was an error with the test that showed elevated levels?

[Scott Adams]

It's doubtful that his original test results were incorrect, and younger people recover more quickly, so once gluten has been eliminated his villi should heal, and the tTg-IgA antibodies should decrease, if his diet has been 100% gluten-free. It sounds like you're doing a good job with his diet, so keep up the good work.

[chiefsilverback]

1 minute ago, Scott Adams said:

It's doubtful that his original test results were incorrect, and younger people recover more quickly, so once gluten has been eliminated his villi should heal, and the tTg-IgA antibodies should decrease, if his diet has been 100% gluten-free. It sounds like you're doing a good job with his diet, so keep up the good work.

Hi Scott - he's been gluten free since July 2023, but his TTG IgA increased from 12 to 48 over the course of 5 months, and then dropped from 48 to 8 in the space of 3 weeks. It makes me wonder if that 48 result was some sort of error?

[Bev in Milw]

On 1/15/2024 at 8:00 PM, chiefsilverback said:

My son was diagnosed with Celiac last year after developing quite severe iron deficiency anaemia, Haemoglobin was 5.9g/dl. He got blood transfusions and then was tested (TTG IgA 12u/ml) and finally scoped to confirm Celiac.

He had follow up labs a couple of weeks ago prior to his 6 month check up with his Gastroenterologist and his TTG IgA has increase to 48.4u/ml and his Haemoglobin has dropped to 8.6g/dL. We have been pretty strict with a gluten-free diet for him since he was diagnosed, and he is very good about checking anything before he eats it, but his Dr thinks he could still be getting some gluten, possibly through cross-contamination as we haven't gone fully gluten-free in the house.

He hasn't complained about feeling like he's eaten gluten for months, so as a test he ate a single Joe's O (Trader Joe's 'Cheerio' containing wheat) and he was up for half the night and didn't feel well enough to go to school the next day. I don't know how gluten exposure is/can be measured, but it's hard to imagine he's consuming enough gluten to cause the elevated TTG IgA and iron deficiency anaemia, but without triggering any stomach pain.

Has anyone else experienced similar?

After starting gluten-free diet, it’s not uncommon to have a worse reaction to much less gluten than before one’s dx….

    Once immune system is no longer overwhelmed by a huge amount of gluten in typical diet, it can identify trace amounts & react swiftly at full force.   (As part of mass celiac screening  for the prevalence study published in 2003,  a member’s wife was dx with celiac.  While she had no symptoms prior to going gluten-free, she got significant reactions to trace amounts once she was gluten-free.))

  Since you mention O-s cereal from Trader’s Joe’s contain gluten, I’m wondering your son is eating GMills Cheerio-s?   Need to ask because even gluten-free oats can be problematic for some w/celiac.  Best to omit all oats initially to promote gut healinng.  Once absorption (measured by gains vitamin levels, weight, energy level) improves, oats can be added in on trial basis. With immune response normalized, reaction  to oats should be fairly obvious to spot.  
   While It’s possible that failure to response to GFD could be an issue with oats (or casein of lactose) in general, it could be problem specific to GMillls Cheerios.   The gluten-free status of GMills Cheerio-s  was questionable from the start.  Company originally used a ‘batch lot’ testing method & I haven’t seen anything to suggest that’s changed.    
   This method of testing involveds pulling several boxes cereal from the production line at various points during a run.  Instead of testing each box individually, the contents of all boxes are combined & a sample of the  mixture is tested. The results of  ‘batch lot ‘ testing is the average of gluten over the entire product run.  
   Unfortunately, cereal is sold by the box.  If gluten contamination in oats coming into system varies over the production run,  gluten in an individual box could be higher  or lower than average.
    This is especially problematic  if when celiac gets a box that’s higher than average & it lasts longer because he’s the only one eating it.   
   Trace amount ‘dosed’ over a long period of time can do more damage than an isolated but larger hit. The IgA response from a gluten hit takes about 6 weeks to resolve.  Each trace amount  initiates a new IgA response that added to whatever remains  from previous hits. When antibodies are being added quicker then body can clear them, they can accumulate to high levels quickly.  (Tracking sources of trace cross contamination can be very difficult & are esp problematic in Rx meds which are usually 30 days  or more.)

Hemoglobin is iron stored in red blood cells, which have life expectancy of ~4 month.  Their replacements are made in bone marrow & also take about 4 months to produce. (RBC-s  in transfused blood is mixed ages, youngest of which lasting ~4 mos. Could account got drop over time.) 
    Recipe for new RBC-s requires adequate intake of iron. Area  for optimal for iiron absorption is high in GI outside of stomach that’s  acidic.  Unfortunately, this area is the 1st to be damaged by celiac so will take longest to heal after going gluten-free.  
    Another essential in recipe is Vitamin B12.  This gets absorbed low in small intestine & requires an ‘intrinsic factor’.  Dietary sources of B12 are animal-based & supplement may be needed if child doesn’t eat meat, milk, eggs or is vegan.
   Members in our group needing supplements seen to do well with a ‘sublingual’ (under the tongue) form of B12.  It gets absorbed  directly into the blood, skipping a potentially damage GI tract gut or a lack of intrinsic factor. Walmart carried a 500 ui one similar to one previously from Rexall.) 

Good luck! Bev in Milwaukee 

   

 

 

[knitty kitty]

6 hours ago, chiefsilverback said:

Hi Scott - he's been gluten free since July 2023, but his TTG IgA increased from 12 to 48 over the course of 5 months, and then dropped from 48 to 8 in the space of 3 weeks. It makes me wonder if that 48 result was some sort of error?

This study found that some Celiacs on a gluten free diet have fluctuating tTg IgA levels, and some have decreasing levels.  

Riboflavin Vitamin B2 is as important in correcting iron deficiency anemia as B12, Pyridoxine B6, and Folate B9. 

 

Riboflavin intake and status and relationship to anemia

https://pubmed.ncbi.nlm.nih.gov/36018769/

Clinical Value of Tissue Transglutaminase Antibodies in Celiac Patients over a Long Term Follow-Up

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8465060/

[Scott Adams]

On 1/31/2024 at 8:10 AM, chiefsilverback said:

Thanks for the replies. His doc ordered repeat labs last week and his TTG IgA came back at 8.3 so a significant decrease from 48.4 a month ago. I don't know how quickly TTG IgA level change, but it could be that there was an error with the test that showed elevated levels?

In your first post you mentioned that his positive tTg-IgA blood test result was followed up with a positive biopsy result--so you have two positive tests that are both the gold standards of diagnosing celiac disease--he most likely has celiac disease and should be 100% gluten-free.

In your first post you also mention that you "have been pretty strict with a gluten-free diet." With celiac disease you can't be just "pretty strict"--you need to be very strict--and the likely reason his antibody levels went back up during that time might be that he was getting small amounts of gluten in his diet on a regular basis. Eating outside your home and especially at restaurants could account for this.

[Wheatwacked]

On 1/31/2024 at 10:11 PM, knitty kitty said:

Clinical Value of Tissue Transglutaminase Antibodies in Celiac Patients over a Long Term Follow-Up

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8465060/

I wonder what the vitamin deficiency status was in these groups.  I believe that GFD alone without improving vitamin and mineral intake will result in slow healing.  One needs higher vitamin D plasma levels to control autoimmune sensitivity, that is, control the ttgIga production.  More Iodine to breakdown defective cells and others like potassium, choline as raw materials for new cells to support replacement of the defective cells with new ones.