Not Your Typical Celiac?

[Susan MacGlashan]

Due to a mild wheat allergy, I decided to go largely gluten-free several years ago but hadn’t been 100% diligent…until recently.

Several months ago and at the same time a sibling was diagnosed with celiac, I started experiencing upper and lower GI pain, unintended weight loss, a change in bowel habit, mildly elevated liver enzymes, and a high IgA. I’ve had many blood tests and procedures done to eliminate possible conditions/diseases. So far, none of these tests/procedures have revealed anything to explain my symptoms. My tTG was negative (no surprise since I’m gluten-free) as was my duodenal biopsy. Before these were done, I informed the doctor I was largely gluten-free and he said not to worry because the biopsy would tell the full story. (I haven’t specifically asked him if he’s a believer that only a positive biopsy confirms celiac, but I suspect as much.) 

Because of my sibling’s diagnosis, at my request he did run the genetic test and it turns out I have the genetic profile that puts me in the category of highest risk for developing celiac. Since getting those results, I’ve been scouring my diet to eliminate hidden sources of gluten and my symptoms have started to improve. When I have a setback, I can usually tie it to something I’ve ingested where cross-contamination was likely. So I’m playing it safe and remaining gluten-free for now.

My questions are: 1) Can you have a high IgA, which I still do, but not a high tTG or gliadin result while on a gluten-free diet? Is this possibly just part of the healing process, I.e., it takes a while for the IgA to come down? Other possible causes of a high IgA have been eliminated and the IgA level is only about 15% above the upper limit of normal. 2) I’ve read about possible nutritional deficiencies due to celiac disease but nothing about a copper deficiency, which is what I have. Does anyone know anything about celiac disease and a copper deficiency? 3) I’ve read at least one research paper on a connection between celiac disease and mildly elevated liver enzymes. I’ve also read it can take 6-12 months for the enzymes to normalize. Has anyone experienced this symptom and/or its resolution? 4) Finally, has anyone had their jejunum examined for lesions? I’ve read of celiac disease cases where lesions occur in the jejunum and not the duodenum.

Thanks for any insight/advice as I’m hoping to share with my doctor so we can get to the right diagnosis, whatever might be causing my symptoms.

[trents]

Welcome to the forum, Susan. 

My celiac journey began with a quest to find out why my liver enzymes were mildly elevated. I went for seven years without any GP checking me for celiac disease. Finally, I went to a GI doc and he checked me for celiac disease via serum antibody tests and biopsy, which were positive. About 18% of people with celiac disease have elevated liver enzymes. My liver enzymes normalized within a few months of going gluten free.

How long had you been cutting back on gluten before your antibody tests? That will definitely risk invalidating the tests. Your doc may have given you a bum steer on that one. We hear this same story over and over on the forum. Many docs are poorly informed about gluten-related disorders.

The Mayo clinic guidelines for pretest celiac serum antibody screening is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the serum antibody tests and for at least two weeks leading up to the endoscopy/biopsy.

Did you doctor order any tests besides the tTG-IGA? Next time ask for a full celiac panel. Some celiacs have immune systems that don't trigger elevated tTG-IGA but other antibody tests will be positive.

During the biopsy, do you know how many samples were taken? Were both the duodenum and the duodenum sampled? Damage can be patchy.

[Scott Adams]

Welcome to the forum, more and more celiac disease is being diagnosed without a biopsy if your tTg levels are 5-10x the cut off level for a positive test:

 

[Susan MacGlashan]

19 hours ago, trents said:

Welcome to the forum, Susan. 

My celiac journey began with a quest to find out why my liver enzymes were mildly elevated. I went for seven years without any GP checking me for celiac disease. Finally, I went to a GI doc and he checked me for celiac disease via serum antibody tests and biopsy, which were positive. About 18% of people with celiac disease have elevated liver enzymes. My liver enzymes normalized within a few months of going gluten free.

How long had you been cutting back on gluten before your antibody tests? That will definitely risk invalidating the tests. Your doc may have given you a bum steer on that one. We hear this same story over and over on the forum. Many docs are poorly informed about gluten-related disorders.

The Mayo clinic guidelines for pretest celiac serum antibody screening is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the serum antibody tests and for at least two weeks leading up to the endoscopy/biopsy.

Did you doctor order any tests besides the tTG-IGA? Next time ask for a full celiac panel. Some celiacs have immune systems that don't trigger elevated tTG-IGA but other antibody tests will be positive.

During the biopsy, do you know how many samples were taken? Were both the duodenum and the duodenum sampled? Damage can be patchy.

 

19 hours ago, trents said:

Welcome to the forum, Susan. 

My celiac journey began with a quest to find out why my liver enzymes were mildly elevated. I went for seven years without any GP checking me for celiac disease. Finally, I went to a GI doc and he checked me for celiac disease via serum antibody tests and biopsy, which were positive. About 18% of people with celiac disease have elevated liver enzymes. My liver enzymes normalized within a few months of going gluten free.

How long had you been cutting back on gluten before your antibody tests? That will definitely risk invalidating the tests. Your doc may have given you a bum steer on that one. We hear this same story over and over on the forum. Many docs are poorly informed about gluten-related disorders.

The Mayo clinic guidelines for pretest celiac serum antibody screening is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the serum antibody tests and for at least two weeks leading up to the endoscopy/biopsy.

Did you doctor order any tests besides the tTG-IGA? Next time ask for a full celiac panel. Some celiacs have immune systems that don't trigger elevated tTG-IGA but other antibody tests will be positive.

During the biopsy, do you know how many samples were taken? Were both the duodenum and the duodenum sampled? Damage can be patchy.

Thank you for your reply. Your description of the liver enzymes issue is very helpful.

At the time of the tTG-IgA and biopsy, I had been largely (but likely not 100%) gluten-free for several years, probably four. The doctor tested only for the tTG-IgA. As far as the biopsy, the post-procedure report indicates five samples were taken in total from the duodenal bulb and second part of the duodenum.

Since receiving the results of the genetic tests but no definitive diagnosis as of yet, just to be on the safe side, I continue to analyze my diet for hidden sources of gluten and make adjustments. My last liver enzymes test revealed a reduction in the levels - still mildly elevated but on a downward trajectory - so I’m hopeful these dietary tweaks will have a positive impact over time. (Never would have thought single spices could be a source of gluten!)
 
The quandary for me in asking for a comprehensive panel is having to ingest gluten for 6-8 weeks since I know my symptoms will get worse if I do. But I will ask my GI doc about it.

[Wheatwacked]

On 7/26/2022 at 9:42 PM, Susan MacGlashan said:

having to ingest gluten for 6-8 weeks since I know my symptoms will get worse if I do.

So what's the need?

Copper is definately one of the minerals affected by Celiac Disease.

  Copper Deficiency in Celiac Disease  Copper deficiency is an uncommonly reported complication of celiac disease that has not received much attention in recent years.

In addition choline is an essential nutritent that is largely ignored and can cause liver enzyme and gall bladder problems. Only 10% of the western population eats enough (the equivelant of three eggs a day). Elevated homocysteine can be an indication of deficiency in choline, folate, B6 and or B12.  Could we be overlooking a potential choline crisis in the United Kingdom?

[Susan MacGlashan]

On 8/4/2022 at 6:00 AM, Wheatwacked said:

So what's the need?

Copper is definately one of the minerals affected by Celiac Disease.

  Copper Deficiency in Celiac Disease  Copper deficiency is an uncommonly reported complication of celiac disease that has not received much attention in recent years.

In addition choline is an essential nutritent that is largely ignored and can cause liver enzyme and gall bladder problems. Only 10% of the western population eats enough (the equivelant of three eggs a day). Elevated homocysteine can be an indication of deficiency in choline, folate, B6 and or B12.  Could we be overlooking a potential choline crisis in the United Kingdom?

Thanks, Wheatwacked, for these links. 

Since following a strict gluten-free diet over the last few weeks, my liver enzymes have returned to well within the normal range. Interestingly, I’ve been supplementing with a small amount of choline over several months but was not seeing a significant change in the liver enzymes (they bounced around in the mildly elevated range). I’m convinced elimination of possible sources of cross-contamination is the reason for the return to normal.

As far as copper, I think a deficiency is considered rare and doesn’t receive the attention it deserves as far as an association with celiac. My level continues to be low but I’m hoping that, with healing over time, this will change. 

The remaining curiosity is my IgA level. It continues to be high although, on a strict gluten-free diet, it is declining. I’ve tested negative for tTG, gliadin and endomysial antibodies. This is no surprise since I have been largely gluten-free for four years and strictly gluten-free for several weeks now. But I’m wondering if the small amount of gluten I likely was ingesting previously from cross-contamination would cause a high IgA but not a detectable level of the specific antibodies? No one in the medical community has been able to pinpoint the reason for the IgA level. For reference, the upper end of the range is 350 and my level was as high as 450 and is now at around 400.

Thanks to all who have replied. This site is a great resource.

[trents]

Thanks for the update on your liver enzymes, Susan. That is good news.