Confused by diagnosis and symptoms

[Dr Aunt Sue]

I will try to keep this short. My story: I kept a basic food diary for 2 years and narrowed down to gluten. Did a gluten and dairy free diet for 6 weeks and felt great. I added dairy for a few weeks and still felt great. So my doctor did the blood test. Ttg was 8.6, and the threshold for celiac is 14.9. Doc said my test was negative. I wanted to do a gluten challenge and doc refused. So I ate gluten free. But I wasn't really gluten free because I didn't know about sauces, broths, cross contamination etc. But I still felt way better. A lot less pain. No more diahhrea or gas. I got sick sometimes and learned about cross contamination (iron skillets, wooden spoons, plastic, crumbs) and purged my kitchen. I felt even better. When I got sick, I could trace it back to accidental gluten. Seemed like problem solved  Doc said proceed as if I have celiac. Fast forward to a month ago. I cut my granddaughter's sandwich and didn't wash my hands well enough. I didn't clean up the crumbs well enough. At the same time I bought shampoo with wheat in it. And I moved into a new office. I cannot fully recover. I feel a little better, then sick again, and now I wonder if I was wrong all along. I have been careful and just got rid of some skin and hair care. But now it feels like there is less gluten in my life and I am sick more often! Any idea what's going on? 

[cristiana]

Hello Dr Aunt Sue and welcome to the forum

This is a very frustrating situation for you, I'm sorry for what you are going through.  Obviously, coeliac or not, gluten is a big issue for you.  It seems to me that you have coeliac disease, or have Non-Celiac Gluten Sensitivity (a condition where the body reacts to gluten, but the villi in your gut are not damaged in the way they would be if you had coeliac disease.)

It is difficult to know which is affecting you because, normally, before a coeliac blood test, it is recommended that the patient eats the equivalent of two slices of normal gluten containing bread for between 6-8 weeks.   It is just possible that because you dropped gluten for roughly that period your antibodies may have dropped in your blood to normal levels.   

But addressing the fact that you now feel ill a month after exposure to gluten.   In the past, I found that if I was exposed to trace amounts of gluten for a few days, it could take me many weeks to feel better again.  So perhaps that is what you are suffering at the moment and just need a bit more time? 

In my own case, I've found something that helps me to recover more quickly.   I ate some gluten containing Minstrel chocolates by mistake the other day which I am sure didn't used to contain gluten, they now "may contain traces of wheat or barley" - I forgot to read the label. I felt so sick a couple of hours later, my face flushed, and I had to go to bed with stomach pain.  I realised my error the next day.  Anyway, I then employed my quick fix:  one 20mg  omeprazole at breakfast the next day  It really helped with the soreness in my stomach and I do feel so much better now.  I find a "stitch in time saves nine" with this approach: a PPI really helps me bounce back when my gut is feeling tender after being glutened.  In the past I tried to soldier on and it took much longer to heal. 

I wonder if you might wish to just eat really bland food for a few days, such as well cooked chicken, banana, rice etc and see if this helps, to just rest your gut.  Or perhaps try an over the counter PPI for a few days, if you are medically able to do so?   If the issue doesn't resolve, please do speak to your doctor.

Cristiana

Edited September 10, 2022 by cristiana

[Rogol72]

1 hour ago, cristiana said:

Hello Dr Aunt Sue and welcome to the forum

This is a very frustrating situation for you, I'm sorry for what you are going through.  Obviously, coeliac or not, gluten is a big issue for you.  It seems to me that you have coeliac disease, or have Non-Celiac Gluten Sensitivity (a condition where the body reacts to gluten, but the villi in your gut are not damaged in the way they would be if you had coeliac disease.)

It is difficult to know which is affecting you because, normally, before a coeliac blood test, it is recommended that the patient eats the equivalent of two slices of normal gluten containing bread for between 6-8 weeks.   It is just possible that because you dropped gluten for roughly that period your antibodies may have dropped in your blood to normal levels.   

But addressing the fact that you now feel ill a month after exposure to gluten.   In the past, I found that if I was exposed to trace amounts of gluten for a few days, it could take me many weeks to feel better again.  So perhaps that is what you are suffering at the moment and just need a bit more time? 

In my own case, I've found something that helps me to recover more quickly.   I ate some gluten containing Minstrel chocolates by mistake the other day which I am sure didn't used to contain gluten, they now "may contain traces of wheat or barley" - I forgot to read the label. I felt so sick a couple of hours later, my face flushed, and I had to go to bed with stomach pain.  I realised my error the next day.  Anyway, I then employed my quick fix:  one 20mg  omeprazole at breakfast the next day  It really helped with the soreness in my stomach and I do feel so much better now.  I find a "stitch in time saves nine" with this approach: a PPI really helps me bounce back when my gut is feeling tender after being glutened.  In the past I tried to soldier on and it took much longer to heal. 

I wonder if you might wish to just eat really bland food for a few days, such as well cooked chicken, banana, rice etc and see if this helps, to just rest your gut.  Or perhaps try an over the counter PPI for a few days, if you are medically able to do so?   If the issue doesn't resolve, please do speak to your doctor.

Cristiana

That's really interesting. It stands to reason that the high acidity of chyme from the stomach entering the small intestine when it's sore and tender would help.

[cristiana]

@Rogol72, wow! That is interesting.  Not having any scientific qualification beyond those I took when I was 15 at school, I have often wondered why I get relief from PPIs.   Thank you so much for explaining!  It only seems to take a few days and things get better - sometimes just the one PPI makes a difference, sometimes a short course of OTC (i.e. less than a week, or taking one every other day for a week).    I get through approximately 30 tabs a year.  Not just for glutening, but also if I have taken an aspirin or a particular antibiotic, Trimethoprim, which most people tolerate well but for some reason seems to feel like battery acid in my gut after a couple of doses!

[Rogol72]

7 minutes ago, cristiana said:

@Rogol72, wow! That is interesting.  Not having any scientific qualification beyond those I took when I was 15 at school, I have often wondered why I get relief from PPIs.   Thank you so much for explaining!  It only seems to take a few days and things get better - sometimes just the one PPI makes a difference, sometimes a short course of OTC (i.e. less than a week, or taking one every other day for a week).    I get through approximately 30 tabs a year.  Not just for glutening, but also if I have taken an aspirin or a particular antibiotic, Trimethoprim, which most people tolerate well but for some reason seems to feel like battery acid in my gut after a couple of doses!

You're welcome! Always curious and like to know cause and effect. I take 20mg Opemrazole on rare similar occasions when glutened only as a last resort though. Anything acidic like coffee, citrus fruits etc. will add to the irritation. I can't remember the last time I consciously added black pepper of any kind to food.

[Dr Aunt Sue]

@Christiana thank you! This is really helpful. I was beginning to think I didn't have celiac or ncgs and something else was wrong. I didn't know you could be sick this long after. Also, I forgot!: the same time the other glutening happened (my granddaughter's sandwich, the shampoo), we had food cooked in our old glutened iron skillet. Could the effect be cumulative, which is why it is taking longer? 

I will try the omeprazole and bland diet. I took tolerase and IBgard, and felt better for a day. So that might help too. 

Sue

[cristiana]

Hi Dr Aunt Sue

Speaking purely for myself, I find it isn't always easy to be sure when a gluten incident has even occurred.   Sometimes I've felt very unwell seemingly for no apparent reason - I wrack my brain, and I can't figure out where the gluten has snuck in.   

This happened in France when we were on holiday in 2019 and after feeling pretty rubbish for most of the holiday I could only conclude that the food labelling wasn't as strict as it has become here in the UK.  Other times it's patently obvious -  like the time my poor relative baked me a cake with organic flour rather than gluten free, thinking they were one and the same.  I was very ill that night after eating a big slice of this cake, and she rang me the next morning when she discovered her mistake. 

In the past, it has snuck in in my supplements, and also when I've eaten out.  Do you still eat out because cross-contamination is a huge issue for a lot of coeliacs from ostensibly gluten free dishes cooked in mainstream restaurants?  I've more or less given eating out, apart from one trusted pub.  Another source for me was our dodgy old dishwasher.  I never thought it was rinsing properly, it kind of left a residue on things (I share a house with gluten eaters!) and when we replaced it, sure enough, my coeliac blood test improved enormously. So in a similar way, I should think your old glutened iron skillet might well be a source.

Are you still eating oats, even the ones that are safe for most coeliacs, i.e. pure oats?  For about seven years after diagnosis I couldn't eat the gluten free variety (pure oats) because they gave me the same symptoms as a glutening.  Now my TTG numbers are normal I do seem to be able to tolerate moderate amounts of them.   This could be an issue for you?

Anyway, as I say, if these measures don't help do come back to us, and do have a chat with your doctor.

 

Edited September 10, 2022 by cristiana

[Shann]

On 9/9/2022 at 10:57 PM, Dr Aunt Sue said:

I will try to keep this short. My story: I kept a basic food diary for 2 years and narrowed down to gluten. Did a gluten and dairy free diet for 6 weeks and felt great. I added dairy for a few weeks and still felt great. So my doctor did the blood test. Ttg was 8.6, and the threshold for celiac is 14.9. Doc said my test was negative. I wanted to do a gluten challenge and doc refused. So I ate gluten free. But I wasn't really gluten free because I didn't know about sauces, broths, cross contamination etc. But I still felt way better. A lot less pain. No more diahhrea or gas. I got sick sometimes and learned about cross contamination (iron skillets, wooden spoons, plastic, crumbs) and purged my kitchen. I felt even better. When I got sick, I could trace it back to accidental gluten. Seemed like problem solved  Doc said proceed as if I have celiac. Fast forward to a month ago. I cut my granddaughter's sandwich and didn't wash my hands well enough. I didn't clean up the crumbs well enough. At the same time I bought shampoo with wheat in it. And I moved into a new office. I cannot fully recover. I feel a little better, then sick again, and now I wonder if I was wrong all along. I have been careful and just got rid of some skin and hair care. But now it feels like there is less gluten in my life and I am sick more often! Any idea what's going on? 

I don't know if this is of any help to you, but prior to my diagnosis, I had unintentionally been ingesting only small amounts of gluten. My blood tests revealed that I had a "weak positive" (IgA 26, IgG 22, & tTG-IgA 4) and negative for tTG-IgG (2). Because everything I ate made me sick, my diet was primary comprised of High-Protein Boost drinks, fresh fruits, yogurt, eggs, applesauce, baby food fruits (don't judge lol... I was seriously very sick, all the time, for many months). There was literally only one microwave meal that my body could handle. ALL of those things were gluten free. I ate the occasional gluten-laden snack, but not daily. So I was given an endoscopy. And was provided a picture of my innards which showed fun things including "flattening of villi." Much was revealed. Several lil biopsies were performed, and I was then diagnosed with Celiac. 

So sometimes, numbers don't necessarily make or rule out a celiac diagnosis. Because my GI doctor just so happened to have celiac, she knew Boost drinks were gluten-free. 

I had to eat a lot of gluten for about 3 weeks prior to my endoscopy. Eating gluten and then having an endoscopy is the only way they can diagnose you. Maybe your doc can order one? 

Also... it's normal to accidentally cross gluten ourselves during the first year, especially in the first couple months. 

Best wishes to you!