Getting tested a second time years later

[Universal G]

Hi all! Wondering if you could give me some input? I will try and keep this as short as possible.

To start, here is where I come from:

CIRCA the age of 15 I've been having issues with pain in my gut, especially after eating white pasta (white pasta is my kryptonite). At one point I didn't have a bowel movement for 2 weeks! Up until the age of 28 I had no idea what the cause was. I never heard of gluten, didn't know what it was. A friend of my introduced me to the Paleo diet which I tried for a while. I started to feel great. When I stopped the diet and started to eat the same, especially wheat/pasta, I noticed all the symptoms come back. Bloating, abdominal pain, passing gas very often, constipation. I ended up changing to a mostly gluten free diet. I still drank beer and ate certain things I didn't know had gluten (like soy sauce). I also noticed that changing to spelt pasta helped and didn't cause symptoms. A few years later while on a mostly gluten free diet, I went to get a blood test done for celiac disease. The problem was, my Dr didn't tell me I had to be on a gluten diet when doing the test. The test came back negative. I am now 40. About a month ago I got a 23 and me test done and it came back positive for a variant of Celiac disease. Once again I contacted my Dr to get another blood test, but this time I told him about me not really eating gluten at the time of the first test. For the past 5 years I have been on a very strict gluten free diet. This time my Dr put me on the gluten challenge. I started on Tuesday of last week. I have got to say I am very surprised at what is going on. I have been able to eat pizza, bread, bagels, butter tarts, a Boston cream doughnut without any reactions. This morning however I had a 3 glazed doughnuts with a little cows milk and about an hour later I got a mild reaction of abdominal pain/bloating.  I also want to mention that for the past couple of years I have also stopped drinking cows milk and drink mainly oat milk. (I still eat and love all other dairy products without any problems).  I had the milk this morning because my 2 year old didn't want to finish it. 

Here are my questions:

I know that different grains/flours have different concentrations of gluten. Is it possible that I only have a problem with high concentrations? For example semolina flour which is what they make white pasta out of. 

Are there any people out there with confirmed celiac disease that can eat all or certain gluten products without any symptoms? Similar to how I was able to have the foods I stated above without symptoms.

Do you have any other information/tips that could help me with my problem/history?

One more side question, I start getting random esophagus spasms if I drink coffee on a daily basis for a few weeks. Switched to decaf, same issue, cut coffee all together and drink tea with caffeine and I am fine. Wondering it people with celiac disease have coffee sensitivity?

 

Thanks

 

[trents]

8 minutes ago, Universal G said:

Hi all! Wondering if you could give me some input? I will try and keep this as short as possible.

To start, here is where I come from:

CIRCA the age of 15 I've been having issues with pain in my gut, especially after eating white pasta (white pasta is my kryptonite). At one point I didn't have a bowel movement for 2 weeks! Up until the age of 28 I had no idea what the cause was. I never heard of gluten, didn't know what it was. A friend of my introduced me to the Paleo diet which I tried for a while. I started to feel great. When I stopped the diet and started to eat the same, especially wheat/pasta, I noticed all the symptoms come back. Bloating, abdominal pain, passing gas very often, constipation. I ended up changing to a mostly gluten free diet. I still drank beer and ate certain things I didn't know had gluten (like soy sauce). I also noticed that changing to spelt pasta helped and didn't cause symptoms. A few years later while on a mostly gluten free diet, I went to get a blood test done for celiac disease. The problem was, my Dr didn't tell me I had to be on a gluten diet when doing the test. The test came back negative. I am now 40. About a month ago I got a 23 and me test done and it came back positive for a variant of Celiac disease. Once again I contacted my Dr to get another blood test, but this time I told him about me not really eating gluten at the time of the first test. For the past 5 years I have been on a very strict gluten free diet. This time my Dr put me on the gluten challenge. I started on Tuesday of last week. I have got to say I am very surprised at what is going on. I have been able to eat pizza, bread, bagels, butter tarts, a Boston cream doughnut without any reactions. This morning however I had a 3 glazed doughnuts with a little cows milk and about an hour later I got a mild reaction of abdominal pain/bloating.  I also want to mention that for the past couple of years I have also stopped drinking cows milk and drink mainly oat milk. (I still eat and love all other dairy products without any problems).  I had the milk this morning because my 2 year old didn't want to finish it. 

Here are my questions:

I know that different grains/flours have different concentrations of gluten. Is it possible that I only have a problem with high concentrations? For example semolina flour which is what they make white pasta out of. 

Are there any people out there with confirmed celiac disease that can eat all or certain gluten products without any symptoms? Similar to how I was able to have the foods I stated above without symptoms.

Do you have any other information/tips that could help me with my problem/history?

One more side question, I start getting random esophagus spasms if I drink coffee on a daily basis for a few weeks. Switched to decaf, same issue, cut coffee all together and drink tea with caffeine and I am fine. Wondering it people with celiac disease have coffee sensitivity?

 

Thanks

 

Welcome to the forum, Universal G.

1. We do reports from time to time that some with celiac disease or Non Celiac Gluten Sensitivity (NCGS) are able to tolerate ancient wheat varieties such as spelt. We do not know if this is actually safe or if it is just a matter of a lesser, muted reaction that is not discernible. We do not recommend spelt because of that. There are also cases of celiac remission periods but they seem not to last indefinitely.

2. Studies have shown that CMP (cows milk protein) causes small bowel villi blunting in some individuals with celiac disease just like gluten does. Dairy intolerance is common among celiacs. The protein casein is the culprit in that case. Some dairy products alter the casein in aging and fermentation processes I believe such that there is less casein and less reaction.

3. If you have celiac disease don't fool yourself into thinking cutting down on gluten is safe. You must eliminate it entirely. Just because you may feel asymptomatic doesn't mean there is no damage being done to villi.

4. Yes, you can have an allergy to the protein in coffee, just like to any other food protein. Also, coffee is a highly acidic beverage and if you have esophagial erosion going on, the spasms may be due to irritation from the coffee.

[Universal G]

Hi trents! 

Thanks so much for the reply. That is great information. As for if I actually have celiac disease, I guess I will have to wait and see what my blood test comes back with. I know something has definitely been going on all these years. Question is, what. I think I will do the full 8 weeks to make sure I get an accurate reading on my blood test this time. While I am at it, I figure I might as well enjoy all the foods I've been missing out on while I am at it. EXCEPT white pasta, and semolina bread, it is brutal. 

[trents]

Hang in there! The Mayo Clinic pretest gluten challenge is the amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks and for the endoscopy/biopsy 2 weeks. Be aware the doc may want to not only do the blood antibody test but also the endoscopy/biopsy for confirmation.

[Universal G]

I actually mentioned that to him, and his reply was "I think that is too drastic, lets do a blood test for now." 

[trents]

58 minutes ago, Universal G said:

I actually mentioned that to him, and his reply was "I think that is too drastic, lets do a blood test for now." 

Makes sense but if the doc does decide to go for an endoscopy/biopsy I hope for your sake he schedules it as soon as possible following the blood antibody results. That way you don't have to torture yourself twice with the pretest gluten challenge.

[Universal G]

Yeah I hear ya. To be honest though, aside from the episode I had today with those glazed doughnuts, I've been fine. No problems at all. Very strange...

[Universal G]

Sorry to double post, there is no edit option. Lets say it comes back negative. What would you do after that? Keeping in mind the fact that I can eat most things and feel fine (to my surprise). If that's the case, maybe its something else all together? 

[Onegiantcrunchie]

Hi Universal. Before I got my first positive blood test I went back and forth to gluten for months at a time. Even when I didn't think I was having symptoms, other people would tell me that I did. They used to tell me that under my eyes would get all blue/purple tinged (like 'dark circles') whenever I'd eaten bread.

So just because you haven't noticed symptoms might not necessarily mean you aren't having any. So yeah I think a lot of people keep eating gluten because they don't make the connection. Damage is still being done to the villi though. I'm not saying you're wrong but I am saying to be sure.

Does the 23andme test look for coeliac antibodies, or the presence of the coeliac gene?

Replying to your last post, if your test comes back negative then they'll probably not diagnose you with coeliac, considering you say you feel fine. But you may have non-coeliac gluten sensitivity.

~Thanks for posting, I found your post v interesting.

[trents]

41 minutes ago, Onegiantcrunchie said:

Hi Universal. Before I got my first positive blood test I went back and forth to gluten for months at a time. Even when I didn't think I was having symptoms, other people would tell me that I did. They used to tell me that under my eyes would get all blue/purple tinged (like 'dark circles') whenever I'd eaten bread.

So just because you haven't noticed symptoms might not necessarily mean you aren't having any. So yeah I think a lot of people keep eating gluten because they don't make the connection. Damage is still being done to the villi though. I'm not saying you're wrong but I am saying to be sure.

Does the 23andme test look for coeliac antibodies, or the presence of the coeliac gene?

Replying to your last post, if your test comes back negative then they'll probably not diagnose you with coeliac, considering you say you feel fine. But you may have non-coeliac gluten sensitivity.

~Thanks for posting, I found your post v interesting.

23andme is genetic testing.

[Universal G]

6 hours ago, Onegiantcrunchie said:

Hi Universal. Before I got my first positive blood test I went back and forth to gluten for months at a time. Even when I didn't think I was having symptoms, other people would tell me that I did. They used to tell me that under my eyes would get all blue/purple tinged (like 'dark circles') whenever I'd eaten bread.

So just because you haven't noticed symptoms might not necessarily mean you aren't having any. So yeah I think a lot of people keep eating gluten because they don't make the connection. Damage is still being done to the villi though. I'm not saying you're wrong but I am saying to be sure.

Does the 23andme test look for coeliac antibodies, or the presence of the coeliac gene?

Replying to your last post, if your test comes back negative then they'll probably not diagnose you with coeliac, considering you say you feel fine. But you may have non-coeliac gluten sensitivity.

~Thanks for posting, I found your post v interesting.

Thanks Onegiantcrunchie

[Universal G]

Just preparing for when I get my results. If it comes back negative and lets say I have NCGS, would I be ok, occasionally eating foods that don't bother me? Since there is no damage being done to the intestines.

Is there anyone out there with NCGS that can also comment? 

Thanks again! 🙂 

[trents]

I have celiac disease, not NCGS. You may be correct in your thinking here but please be aware that there is some evidence that NCGS may be a precursor to celiac disease. And although gluten does not damage the SB villi in those with NCGS, it can damage other body systems, particularly from a nuerological stanpoint: https://www.foodsmatter.com/coeliac-disease/general-articles/ncgs-gluten-terminology-03-12.html

[Universal G]

Thanks

[AlwaysLearning]

I read a post a while back from someone else here that could explain your lack of reaction after five years of being gluten free. Apparently, your body produces little factories that make the antibodies that attack gluten. The longer you eat gluten, the more factories you have, the more antibodies that are produced. And it takes up to two years for all of those little factories to die off again.

This means that you can expect your reactions to gluten to get worse as your body produces more factories and more antibodies in the weeks leading up to your test. Then you can also expect strong reactions to trace amounts of gluten in your diet for a couple years after doing this gluten challenge, waiting for things to calm down again.

I will keep my fingers crossed that things don't get too bad for you. I expect toward the end, in the last two weeks before your test, things are going to get really bad. But before you consider quitting and not getting tested, I would see if you couldn't be more careful about how much gluten you're consuming. Like don't overdue it by consuming massive amounts of gluten if you're already having bad reactions and just stick to your minimum amount required for testing.

I'll send you big hugs now for what I expect is coming in your future.

 

[Universal G]

12 hours ago, AlwaysLearning said:

I read a post a while back from someone else here that could explain your lack of reaction after five years of being gluten free. Apparently, your body produces little factories that make the antibodies that attack gluten. The longer you eat gluten, the more factories you have, the more antibodies that are produced. And it takes up to two years for all of those little factories to die off again.

This means that you can expect your reactions to gluten to get worse as your body produces more factories and more antibodies in the weeks leading up to your test. Then you can also expect strong reactions to trace amounts of gluten in your diet for a couple years after doing this gluten challenge, waiting for things to calm down again.

I will keep my fingers crossed that things don't get too bad for you. I expect toward the end, in the last two weeks before your test, things are going to get really bad. But before you consider quitting and not getting tested, I would see if you couldn't be more careful about how much gluten you're consuming. Like don't overdue it by consuming massive amounts of gluten if you're already having bad reactions and just stick to your minimum amount required for testing.

I'll send you big hugs now for what I expect is coming in your future.

 

Thank you so much for your kind words and support. I will keep an eye out and keep you all posted on this thread. 

[Universal G]

Upon further review, my 23andMe test also shows that I am very likely to be Lactose intolerant. This is very strange since I can eat lots of dairy products without any issues. I do know that eating cheese that has 0 sugar means that it is very low in lactose. Either way, something else I will investigate and probably speak to my Dr about after my Celiac test results come back. 

[Universal G]

Hi all, long time no see.

Well, my results came back, and I am not a celiac. Turns out this entire time I've been mistaking lactose intolerance with gluten sensitivity... I've have tested this and I am indeed lactose intolerant. I just wanted to give you all an update and thank you for your support.

Cheers.

[trents]

Thanks for the update. Take care.