Do my symptoms and their trajectory appear to point to celiac?

[KatyV93]

Hi everyone, I’ve recently joined this group because I’ve been experiencing symptoms for the past 6 weeks or so upon returning to the US from a trip to the UK that I feel could possibly point to celiac. I know symptoms associated with this disease are numerous and that presentation in adults can vary widely, but I just wanted to reach out to see whether anyone else has experienced anything vaguely similar.

-2nd day before returning home, started feeling extremely bloated after eating. Nothing else, just overall very uncomfortable for several hours until it somewhat passed. Admittedly, I did eat a lot these last two days of the trip.

-Once home, bloating continually got worse after every meal, and was soon accompanied by nausea, cramps, acid reflux, headaches, and worse constipation than my usual.

-Symptoms continued for several weeks, along with decreased appetite.

-Eventually, gastro symptoms abated slowly until my appetite mostly returned, though these symptoms still come and go, just to a lesser degree.

-As gastro symptoms improved, the rest of my body seemed to go downhill. Worsened headaches, dizzy spells, and intense brain fog took over and affected my quality of life.

-Have felt itchy all over my body on and off, but no signs of rash (could be a seasonal allergy thing, though?)

-Started having occasional numbness in hands, knees, lower legs, and even lips.

-Trouble sleeping (more so than usual), inattention, and forgetfulness from the brain fog caused difficulties when returning to work for the new school year (I’m a teacher)

-Have had diarrhea twice, but the rest of the time is constipation

-Just an overall feeling of “weirdness” that’s very hard for me to explain.

What’s bothering me is that many of these symptoms kind of come and go, and it has me wondering if it’s all just in my head. I genuinely don’t feel as though it’s all due to anxiety, but I suppose anything’s possible. Anyway, I’ve met with a new doctor who’s ordered a celiac panel as well as an ultrasound, but won’t get the results until two weeks from now. I’m going to listen to whatever my doctor believes it is, of course, but until I know for sure, I’m just sort of twiddling my thumbs and wondering what else it could be if I do test negative.

Does this sound at all like any of you who have been diagnosed celiac, NCGS, etc? Any other thoughts or suggestions you might have for me?

Thanks so much for taking the time to read and comment.

[trents]

Welcome to the forum, KatyV93!

All of the symptoms you describe are common to the celiac community as a whole, though as you say, personal celiac experience as far as symptoms go varies enormously from person to person.

When you say your doctor ordered a "celiac panel", what specific tests did that include or do you know? That term is used loosely and can include only one or two celiac antibody tests or a broader range of antibody tests.

If you are positive for any of the celiac antibody tests, you may get a referral to a GI doc for an endoscopy and a biopsy of the small bowel villous lining for confirmation of the antibody results. It is important that you don't start a gluten free diet until all testing is complete.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease but the two have overlapping symptoms. There is no test for NCGS. Celiac disease must first be ruled out. NCGS does not cause damage to the small bowel lining as does celiac disease. Both require abstinence from gluten. Some experts feel that NCGS can be a precursor to celiac disease.

Edited August 11, 2023 by trents

[Scott Adams]

Welcome to the forum! Your symptoms definitely could be consistent with either celiac disease or NCGS, and of course it's possible it could be something else. It's great that you got a celiac blood test panel, and were you eating gluten daily (normally you should be eating at least 2 slices of wheat bread for 6-8 weeks beforehand).

More info about the blood tests:

 

 

[KatyV93]

4 hours ago, trents said:

Welcome to the forum, KatyV93!

All of the symptoms you describe are common to the celiac community as a whole, though as you say, personal celiac experience as far as symptoms go varies enormously from person to person.

When you say your doctor ordered a "celiac panel", what specific tests did that include or do you know? That term is used loosely and can include only one or two celiac antibody tests or a broader range of antibody tests.

If you are positive for any of the celiac antibody tests, you may get a referral to a GI doc for an endoscopy and a biopsy of the small bowel villous lining for confirmation of the antibody results. It is important that you don't start a gluten free diet until all testing is complete.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease but the two have overlapping symptoms. There is no test for NCGS. Celiac disease must first be ruled out. NCGS does not cause damage to the small bowel lining as does celiac disease. Both require abstinence from gluten. Some experts feel that NCGS can be a precursor to celiac disease.

Thanks trents!

Honestly I don’t know what specific tests he was including, I didn’t think to ask. I’ll get a copy of the report at my next appointment though so I know what they were. I’ll definitely continue eating gluten in case I do get a GI referral as well. And I didn’t realize ncgs was so much more common than celiac! So you can technically have ncgs and test negative for celiac, but still test positive for celiac in the future if activated?

Thanks so much for your help!

[KatyV93]

4 hours ago, Scott Adams said:

Welcome to the forum! Your symptoms definitely could be consistent with either celiac disease or NCGS, and of course it's possible it could be something else. It's great that you got a celiac blood test panel, and were you eating gluten daily (normally you should be eating at least 2 slices of wheat bread for 6-8 weeks beforehand).

More info about the blood tests:

 

 

Thanks so much, Scott! This will be extremely helpful whenever I get my blood work back. I haven’t stopped eating gluten at all yet, so hopefully the tests will be accurate. Thanks again!

[trents]

1 minute ago, KatyV93 said:

Thanks trents!

Honestly I don’t know what specific tests he was including, I didn’t think to ask. I’ll get a copy of the report at my next appointment though so I know what they were. I’ll definitely continue eating gluten in case I do get a GI referral as well. And I didn’t realize ncgs was so much more common than celiac! So you can technically have ncgs and test negative for celiac, but still test positive for celiac in the future if activated?

Thanks so much for your help!

Yes. If you have one or more celiac genes, they can be activated at any point in life. Takes some kind of stress event, like a viral infection. 40% of the population has genetic potential for developing celiac disease but only 1% or so of the population actually develops celiac disease. Building on that, if your testing is negative for celiac disease, you might consider getting genetic testing done to see if you have the potential for transitioning to celiac disease. If you don't have any of the two or three genes, you can rest easy. That is, unless they find more celiac genes in the future.

[KatyV93]

3 minutes ago, trents said:

Yes. If you have one or more celiac genes, they can be activated at any point in life. Takes some kind of stress event, like a viral infection. 40% of the population has genetic potential for developing celiac disease but only 1% or so of the population actually develops celiac disease. Building on that, if your testing is negative for celiac disease, you might consider getting genetic testing done to see if you have the potential for transitioning to celiac disease. If you don't have any of the two or three genes, you can rest easy. That is, unless they find more celiac genes in the future.

This is such great info, and I’ll definitely look into genetic testing if I do test negative. No wonder this disease can be so difficult to diagnose!

[Wheatwacked]

On 8/11/2023 at 6:16 PM, KatyV93 said:

wondering if it’s all just in my head. I genuinely don’t feel as though it’s all due to anxiety,

Waiting for test results can be excruciating.

Even anxiety has nutritional roots.  Low D and low Lithium can cause it.

Many trace their symptoms to an infection as the trigger for acute Celiac.  The bacteria in the UK is different.  Many jokes have been told of the result of drinking water in foreign countries.

 

[KatyV93]

45 minutes ago, Wheatwacked said:

Waiting for test results can be excruciating.

Even anxiety has nutritional roots.  Low D and low Lithium can cause it.

Many trace their symptoms to an infection as the trigger for acute Celiac.  The bacteria in the UK is different.  Many jokes have been told of the result of drinking water in foreign countries.

 

Yes, waiting for results is awful for sure. And I absolutely believe that anxiety can cause a multitude of physical symptoms, including the ones I’m experiencing, I just feel as though there’s something more to my situation than that. If anything, I feel symptoms due to anxiety would’ve started in the weeks leading up to my trip as I was much more anxious during that time, just trying to be prepared and whatnot. Again, though, anything is possible.

Yes I know people joke about that but I’ve actually wondered if the differences in things like bacteria to the way food is prepared in the uk could’ve been what triggered it. Are you saying you feel like that’s possible as well?

[Wheatwacked]

Yes.  All the prep for the trip and the excitement uses up nutrients. Then a batch of microbes new to you and voila.

Nutrients Depleted When You Are Stressed

 

[DanMc]

While you're waiting for an outcome, it couldn't hurt to take probiotics, *especially* if you think you've picked something up while in the UK. They should settle your tum a little, and some (myself included) find they help with the processing of gluten in the gut/assist in the digestion of nutrients.

[KatyV93]

4 hours ago, DanMc said:

While you're waiting for an outcome, it couldn't hurt to take probiotics, *especially* if you think you've picked something up while in the UK. They should settle your tum a little, and some (myself included) find they help with the processing of gluten in the gut/assist in the digestion of nutrients.

Great idea, I'll definitely look at doing that. Thank you!

[knitty kitty]

@KatyV93,

Could you possibly have a low level carbon monoxide leak at your home?  Carbon monoxide poisoning can cause brain fog, headaches, nausea, digestive problems, skin rashes and paresthesia (pins and needles feeling).  

Perhaps a traveler's bug was caught prior to your return home.  A low level carbon monoxide leak won't be picked up by CO detectors (those are for acute leaks).  

Have you tried increasing your B Complex supplement?

[KatyV93]

On 8/11/2023 at 5:49 PM, trents said:

Welcome to the forum, KatyV93!

All of the symptoms you describe are common to the celiac community as a whole, though as you say, personal celiac experience as far as symptoms go varies enormously from person to person.

When you say your doctor ordered a "celiac panel", what specific tests did that include or do you know? That term is used loosely and can include only one or two celiac antibody tests or a broader range of antibody tests.

If you are positive for any of the celiac antibody tests, you may get a referral to a GI doc for an endoscopy and a biopsy of the small bowel villous lining for confirmation of the antibody results. It is important that you don't start a gluten free diet until all testing is complete.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which is 10x more common than celiac disease but the two have overlapping symptoms. There is no test for NCGS. Celiac disease must first be ruled out. NCGS does not cause damage to the small bowel lining as does celiac disease. Both require abstinence from gluten. Some experts feel that NCGS can be a precursor to celiac disease.

Hey trents, I just received these results in the mail and will talk to my doctor about them on Friday. But to you does it look like they tested for pretty much everything celiac related and I can pretty much conclusively say I don’t have it?

[trents]

16 minutes ago, KatyV93 said:

Hey trents, I just received these results in the mail and will talk to my doctor about them on Friday. But to you does it look like they tested for pretty much everything celiac related and I can pretty much conclusively say I don’t have it?

No. They only ran two tests for celiac disease and one for total serum IGA (Immuglobulin A). If total serum IGA is low it can cause false negatives in the actual celiac IGA tests. Your total serum IGA is not low. However, there are a number of other tests that can be run to detect celiac disease. Here is an overview:

No DGP and IGG tests were run.

[Scott Adams]

1 hour ago, KatyV93 said:

Hey trents, I just received these results in the mail and will talk to my doctor about them on Friday. But to you does it look like they tested for pretty much everything celiac related and I can pretty much conclusively say I don’t have it?

Actually, to me it looks like two tests were done for celiac disease:

• Endomysial Antibodies IgA - Negative
• Tissue Transglutaminase IgA - Result <2 ??? (I believe the result is the first column, although it isn't clearly indicated here. If this is correct the result is negative).

Since you don't have IgA deficiency, the 3rd result, then the blood tests indicate that you likely don't have celiac disease.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[KatyV93]

9 hours ago, trents said:

No. They only ran two tests for celiac disease and one for total serum IGA (Immuglobulin A). If total serum IGA is low it can cause false negatives in the actual celiac IGA tests. Your total serum IGA is not low. However, there are a number of other tests that can be run to detect celiac disease. Here is an overview:

No DGP and IGG tests were run.

Hmm ok thank you, I may ask my dr about it then. Hopefully it’s just low vitamin d but we’ll see. Thanks again for your help.

[KatyV93]

8 hours ago, Scott Adams said:

Actually, to me it looks like two tests were done for celiac disease:

• Endomysial Antibodies IgA - Negative
• Tissue Transglutaminase IgA - Result <2 ??? (I believe the result is the first column, although it isn't clearly indicated here. If this is correct the result is negative).

Since you don't have IgA deficiency, the 3rd result, then the blood tests indicate that you likely don't have celiac disease.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Yes the <2 was the result, sorry, the top of the paper where it said got cut off. So obviously the 105 for the third test is within normal range, but it’s definitely on the low side of normal. Is that something that could potentially cause concern you think?

[knitty kitty]

Have you had a genetic test done to determine whether or not you have any Celiac genes?

[KatyV93]

23 hours ago, knitty kitty said:

@KatyV93,

Could you possibly have a low level carbon monoxide leak at your home?  Carbon monoxide poisoning can cause brain fog, headaches, nausea, digestive problems, skin rashes and paresthesia (pins and needles feeling).  

Perhaps a traveler's bug was caught prior to your return home.  A low level carbon monoxide leak won't be picked up by CO detectors (those are for acute leaks).  

Have you tried increasing your B Complex supplement?

I hadn’t even thought of this! Definitely worth looking into. And no I haven’t increased b complex, was just kind of waiting for results from the dr but I’ll definitely start looking into what changes I need to make. And to answer your other question, no I haven’t had genetic testing for celiac but am definitely interested in knowing now so I’ll probably do that soon. Thank you for your help!

[DALTE04]

There are more blood tests they can run. Some people believe that some of your symptoms are more likely seen with positive results to IGG testing. You may need to find a Functional Medicine Doctor to order the labs. Check out Dr. Chris Kresser’s work. He has a podcast episode dedicated to gluten intolerance that is very informative. Also, you may want to look into Histamine intolerance and/or Mast Cell Activation Symdrome. Check out Dr. Becky Campbell’s work ok histamine intolerance. I’ve had many of the same symptoms you are experiencing. The tingling in my hands and feet led me to my Celiac Disease diagnosis. However, I eventually determined that I have a sensitivity to oxalates and histamines. Check out Sally K. Morton’s work on oxalates-she is the world expert in the field. It’s a work in progress. This forum is a fantastic resource. The folks I mentioned are very helpful too. Journal your foods and be patient, and you will figure it out! Good luck.

[KatyV93]

On 8/23/2023 at 11:25 PM, DALTE04 said:

There are more blood tests they can run. Some people believe that some of your symptoms are more likely seen with positive results to IGG testing. You may need to find a Functional Medicine Doctor to order the labs. Check out Dr. Chris Kresser’s work. He has a podcast episode dedicated to gluten intolerance that is very informative. Also, you may want to look into Histamine intolerance and/or Mast Cell Activation Symdrome. Check out Dr. Becky Campbell’s work ok histamine intolerance. I’ve had many of the same symptoms you are experiencing. The tingling in my hands and feet led me to my Celiac Disease diagnosis. However, I eventually determined that I have a sensitivity to oxalates and histamines. Check out Sally K. Morton’s work on oxalates-she is the world expert in the field. It’s a work in progress. This forum is a fantastic resource. The folks I mentioned are very helpful too. Journal your foods and be patient, and you will figure it out! Good luck.

Thank you so much for these suggestions, I will definitely look into everything you’ve said. I appreciate your help!!