Is this gluten sensitivity, celiac or maybe IBS?

[heyyy]

Hi, swedish young adult here.

Been having a really rough time the last year, with all kinds of disturbing and uncomfortable symptoms. Things I've experienced are:

Diarrhea/constipation (rarely anything inbetween), Severe peripheral neuropathy, intense abdominal pains along with pregnant-ish bloating, depression/anxiety, eczema in my face, mouth ulcers and also acid reflux. Pretty much all of this at the same time, constantly for a year. 

After i felt extra sick from eating pasta and bread one day, I decided to get bloodwork for Celiac, which came back negative. One doctor suspected IBS, another just thought I needed more exercise and probiotics (since I had a ton of antibiotics last year). I tried his advice, but just got worse. I still decided to go gluten free, and one month in I feel relief from ALL of the above mentioned symptoms. Every single one. No more mouth ulcers, eczema or neuropathy among other things feels amazing. Now, as I've tested negative for Celiac, could this be Non-celiac gluten sensitivity? Or is it only Celiac that causes symptoms this severe?

I called in sick for school and work several times during the last year when things were really bad, and this relief from not eating gluten is pretty overwhelming. I have a really hard time believing it's IBS, since IBS-triggering foods are no problem for me. Would you suggest that I get further testing for Celiac or is it just not worth it (since I'd have to start eating gluten again)? 

[Scott Adams]

If you went gluten-free for a long period of time before you got tested, your test results will likely be a false negative. Normally you must eat gluten daily for at least two months before you can be tested for celiac disease, and this goes for either blood tests or a biopsy.

That said, given how certain you are that Gluten is causing all of your problems, do you really want to go through this process to get the official diagnosis? That is a question you will need to answer.

[heyyy]

two months daily?? yikes... my doctor didn't tell me that. I did have a lot of gluten before the tests, but not daily.

[Fenrir]

5 minutes ago, heyyy said:

two months daily?? yikes... my doctor didn't tell me that. I did have a lot of gluten before the tests, but not daily.

Yes, if you don't have consistent gluten intake prior to the blood tests they are almost useless.  My antibody levels went from very high to normal in one month gluten-free. 

[Nel]

Hi - thank you for your question and the answer. I had a blood test but it came back as inconclusive. I had stopped eating gluten for a few months before the test because I felt better and couldn’t bear to eat it for 6-8 weeks prior to the test. Instead I binged on bread for a couple of days before the test. The upshot was neither one thing nor the other for the test. It is better to follow the instructions, although going to the bathroom 6 or 7 times every morning didn’t seem like a good option at the time. I often wonder if the inconclusive test would have been positive if I’d followed procedure since it wasn’t negative.  Now I will always wonder but don’t see the point in going back, although it would be nice to k ow if I am a celiac or just sensitive to gluten. 

Edited January 23, 2020 by Nel
Typo

[Fenrir]

13 minutes ago, Nel said:

Hi - thank you for your question and the answer. I had a blood test but it came back as inconclusive. I had stopped eating gluten for a few months before the test because I felt better and couldn’t bear to eat it for 6-8 weeks prior to the test. Instead I binged on bread for a couple of days before the test. The upshot was neither one thing nor the other for the test. It is better to follow the instructions, although going to the bathroom 6 or 7 times every morning didn’t seem like a good option at the time. I often wonder if the inconclusive test would have been positive if I’d followed procedure since it wasn’t negative.  Now I will always wonder but don’t see the point in going back, although it would be nice to k ow if I am a celiac or just sensitive to gluten. 

Well the tests can't really be "inconclusive" they are positive or negative. There's no such thing as weak positive or inconclusive. 

Do you have the lab results? A lot of Drs. tell patients a mildly elevated TTG is inconclusive but that's not true. 

[Nel]

That’s interesting. Thanks for your reply. No I don’t have the values, but I’ll ask for them. I was recently diagnosed as folate deficient which suggest malabsorption because I eat a healthy diet, but again I didn’t ask for the values. I will do when I have my follow-up test. I think you make a valid point here because my GP just says something is normal or not and I am becoming aware that we should all ask for specifics. Perhaps something on the low side of normal is biologically important. Anyway, he definitely said it was inconclusive. 

[Fenrir]

35 minutes ago, Nel said:

That’s interesting. Thanks for your reply. No I don’t have the values, but I’ll ask for them. I was recently diagnosed as folate deficient which suggest malabsorption because I eat a healthy diet, but again I didn’t ask for the values. I will do when I have my follow-up test. I think you make a valid point here because my GP just says something is normal or not and I am becoming aware that we should all ask for specifics. Perhaps something on the low side of normal is biologically important. Anyway, he definitely said it was inconclusive. 

Yes, my TTG was only 8 (negative is 0-3), this is "weak positive" according to many GPs. 

Problem is, positive is positive. Even if it's 4, it's positive. At the very least other blood work should be ordered (deamidated tests) and probably have an EGD done. 

With my "weak positive" I was found to have a Marsh grade 3b which is pretty significant damage to my intestine. 

Also, my deaminated tests were:

deamidated gliadin abs, igg     42  Range: 0-19 units

deamidated gliadin abs, iga     73  Range: 0-19 units

And these were after being gluten-free for a week or so. 

So TTG may be weak positive and you can still have significant damage and very high deamidated tests. 

[Nel]

Hi Fenrir - thank you for sharing your test results. This is very useful information. I’ll definitely ask for my numbers - with hindsight you’re probably right. My GP does have a tendency to say things are OK when sub-normal or just not problematic in his mind. It would fit if my numbers were low positives - and I guess even weak negatives doesn’t mean there isn’t damage. Everything is black and white to my GP, yet it’s clear from reading these posts that there are grey areas and several tests need doing with careful study of the numbers. 

Because nothing was conclusive I let the gluten-free diet slip over Christmas so as not to be awkward as I was staying with family and was away last week and had two gluten filled meals and it was clearly all too much. Symptoms came back with a vengeance so there’s something gluten-related going on.

I guess the moral is always get the actual numbers from our GPs, listen to our own bodies and learn from the experiences and knowledge of people who have experience of it.