Glutensensitive? or something else?

[badastronaut]

Dear forum members,

for as long as I can remember I have had stomach and digestive problems as wel as anxiety and (light) depression type symptoms.  I have had my gallblader removed due to stones, but that didn't change my symptoms. I have been tested for celiac twice but both times the test result was negative. According to my doctor I have severe IBS. About a year ago I thought to myself, I might aswell try a gluten free (or almost gluten free) diet since I always had quite severe stomach problems after eating pasta, pancakes or bread (and peanuts,apples, union, garlic etc. for that matter).  The results where that my stool changed quite a bit, from yellow and loose to normal (albeit a bit constipated at times). Sometimes I still can't believe that it is actually a gluten sensitivity that is my problem, so last week I tried to eat  some bread every day to see what would happen. I got some mild stomach cramps during the day that became worse at night but the biggest thing I noticed was that my anxiety became quite bad (horrible actually) while I had been feeling relatively good for months. I still don't feel normal again even though it has been 4 days since eating bread.

My question is the following, how big is the change of me havind Non Celica Gluten Sensitivity even though the test results for celiac were negative? If my intestines behave so different when not eating gluten, could that mean anything? And would it be possible to become even les anxious/depressed if I change to a really strict gluten free diet? At the moment I still use the same butter as the rest of my family does, and I probably ingest some gluten here and there. My mother and brother (and nephew and niece too)  all have trouble with the indigestion but have also been told to have IBS and don't believe it could be a gluten thing.

I'm curious to hear what your opion is since my doctor isn't much of a help. Her reaction is always ' oh it's just IBS, take some extra fibres, bye'.

cheers from the Netherlands!

[cristiana]

Hello @badastronaut and welcome to the forum!

Can I start by asking a couple of questions:  when you were tested for celiac disease, did that include a biopsy?   Sometimes it takes a biopsy to be 100 percent sure as a small percentage of coeliacs do not have positive blood tests.   And for your previous blood tests, were you consuming gluten regularly for at least six weeks before the blood test?

Regarding your anxiety, consuming gluten for people with non-coeliac gluten sensitivity can affect mood, so you could definitely try following the diet much more strictly to see what happens. 

But going back to my first points, if you did want to repeat testing for coeliac disease it would mean consuming at least the equivalent of two slices of normal glutinous bread for six weeks and two weeks before a biopsy.  It is a tough call if gluten makes you feel so unwell and a lot of people decide against it. 

I am not sure what the state healthcare support for coeliacs is in the Netherlands but in the UK it is good, so this is why some people feel it is worth pursuing a  formal diagnosis despite the gluten trial.

Cristiana

Edited January 8 by cristiana

[trents]

Welcome to the forum, @badastronaut!

You say you were tested for celiac disease twice? Do you know what test or tests were run? Do you know if one of the tests was total IGA? Do you have access to the test records and can you post them along with reference ranges? For negative vs. positive. By any chance when the blood was drawn for the tests were you already practicing a gluten restricted diet?

But yes, it is certainly possible that you have NCGS and not celiac disease.

Edited January 8 by trents

[badastronaut]

Thanks for the replies. I never had a biopsy for celiac only the bloodtest. My IGA was 1,72 and 2 the second time.I was eating bread at the time but not much. Eating much bread always made me nauseous. Are there more markers in a blood test that are important for celiac testing? I have all the reports but don't know what to look for. 

I don't know if I'm willing (or brave enough) to start eating bread again for a new test. I'll definitely start to be way more conscience about gluten and to really make sure to not eat any gluten whatsoever. Curious to find what that will bring me. 

[badastronaut]

Btw. There are no healthcare benefits in the Netherlands when diagnosed with celiac disease.. 

[trents]

There are a number of blood antibody tests that can be run that are designed to detect celiac disease: 

The most popular one doctors run is the tTG-IGA but that is not the only IGA-based test that can be run and there are other tests that are not IGA-based. Total IGA is not a test for celiac disease per se but a measure of the collection of of various types of IGA antibodies. If this one is low it can mean that individual IGA tests scores will be artificially low and may produce false negatives. Reduction of gluten consumption before testing, whether by blood antibodies or by endoscopy/biopsy can sabotage test results. There is no test for NCGS (Non Celiac Gluten Sensitivity) so for this diagnosis, celiac disease must first be ruled out. If you are eating a gluten free or low gluten diet, it is a waste of time to be retested. 

[badastronaut]

I indeed had the tTG-IGA test twice. I will stick with my gluten free diet for sure since it definately does benefit me. A shame that there is no test for NCGS.

[cristiana]

34 minutes ago, badastronaut said:

Btw. There are no healthcare benefits in the Netherlands when diagnosed with celiac disease.. 

This is an important consideration. 

Interesting how things vary in Europe, I think there are benefits to having a diagnosis in Italy as well as in Britain.

[RachelC.]

I was diagnosed with Celiac 4 years ago and went completely gluten free but still had issues with nausea, diarrhea and occasional sharp abdominal pain. Just by chance my sister told me she had tested positive for fructose malabsorption because she was having similar issues.  I decided to test and was also positive.  I had never heard of it, but once adjusting my diet to eliminate as much fructose as possible my symptoms reduced dramatically.  It's quite an adjustment, and I don't always catch things so still have occasional issues, but I recommend getting a fructose breath test for anyone who is still having issues despite having gone gluten free.  It's a life changer!

[knitty kitty]

Hello, @badastronaut,

I am seronegative on blood tests, but I have two genes for Celiac Disease.  With positive DNA and improvement on a gluten free diet, I finally had a diagnosis.  

Diabetes, anemia and Thiamine deficiency disorders can cause seronegative blood test results.  I had all of these, but only one is necessary to cause seronegative results.

Celiac Disease is genetic.  Having one gene is sufficient for the potential to develop Celiac Disease.  Resolution of symptoms on a gluten free diet means the Celiac genes are activated.  All first degree relatives (parents, siblings, children) should be tested if you have Celiac genes.  

Celiac Disease affects the absorption of vitamins and minerals.  Many Celiac health problems are related to nutritional deficiencies.  Once the deficiencies are corrected, health improves.  Most people with Celiac are lacking in the B vitamins, Vitamin D, and minerals like magnesium and zinc.  Correcting nutritional deficiencies is part of proper follow up care.  

I had to have my gallbladder out, too.  I had very bad anxiety and panic attacks while on gluten.  Gallbladder dysfunction is related to Thiamine deficiency disorders.  My anxiety has improved greatly.  Anxiety is also related to Thiamine deficiency disorders.  

Hope this helps!

[knitty kitty]

Here's some interesting reading...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

[trents]

5 hours ago, badastronaut said:

I indeed had the tTG-IGA test twice. I will stick with my gluten free diet for sure since it definately does benefit me. A shame that there is no test for NCGS.

 

[badastronaut]

I had another blood test done on Wednesday to check my minerals and vitamins. My vitamin D level was ok although lower that I thought it would considering I have been taking quite a high dose supplement. Vitamin b12 was also ok. Still waiting for zinc and the other vitamin b levels. What I did find curious is my folate level. Normal range here in the Netherlands is considered between 7,3 and 38,5 nmol/L. My level was 8,1. I dropped a lot since a blood test from a few years ago. Can gluten sensitivity cause a lower folate level? And should I try to supplement this? 

[trents]

Don't put too much trust in vitamin and mineral blood level tests because what is floating around in the blood does not necessarily equate to what is being taken up by the cells. How much D3 are you taking? 5000-1000IU is therapeutic and not excessive. Initial precautions from years ago about D3 toxicity from supplementation have since been proven overly conservative.

Edited January 12 by trents

[badastronaut]

Hmm never thought of it that way!  I take 2000 IU of vitamin D daily. Been doing so for years. My vitamin d level was 'only' 96 nmol/l. 

[trents]

Bump it up to 5000IU or 6000IU if your caps are 2000IU each.

[badastronaut]

Will give it a try! Thanks! 

[badastronaut]

And another blood level result just came in. This time zinc. Normal zinc levels are between 12 and 18 nnmol/l. My zinc level is 9,3 so it's pretty low. Is this common in glutensensitivity/IBS/celiac? and any tips on how to best supplement this deficiency?

[knitty kitty]

@badastronaut,

I like zinc picolinate for my zinc supplement.  

This may help....

https://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/

[trents]

15 minutes ago, badastronaut said:

And another blood level result just came in. This time zinc. Normal zinc levels are between 12 and 18 nnmol/l. My zinc level is 9,3 so it's pretty low. Is this common in glutensensitivity/IBS/celiac? and any tips on how to best supplement this deficiency?

Yes, zinc is commonly low with celiacs and is one of the minerals we commonly recommend as a supplement to newly diagnosed celiacs, especially those who have likely lived with the disease for years before being diagnosed.

[badastronaut]

interesting! I have never been tested on zinc before so it could very well be that I've indeed been deficient for years. 

[badastronaut]

Sorry to revive this old post. Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks. 

Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore). 

What to do??? Could this be gluten related? 

[trents]

Any testing for celiac disease done while on a gluten free or even a restricted gluten diet will not be valid. The blood antibody tests for celiac disease are designed to detect specific kinds of antibodies produced by the inflammation in the small bowel lining produced by gluten ingestion so when you remove gluten or restrict it you eliminate or reduce the inflammation to the point where it's levels fall below what can be detected by the tests. You say you had been eating "some gluten" in the weeks leading up to the testing. Recent guidelines for the pretesting "gluten challenge" call for the daily consumption of 10g of gluten for at least two weeks leading up to the day of the blood draw. 10g is about the amount in 4-6 slices of wheat bread and I would certainly give it more time than two weeks, say four, to be sure. 

You may have NCGS or celiac disease but you may also have IBS as well or SIBO (Small Intestine Bacterial Overgrowth) which are all more common among celiacs than in the general population.