Test Results Help

[maizzy]

Hi friends!

So I'm a bit confused as to what to do next. My story is this: I'm a 28 year old lady and I've been feeling bad for at least 8 months, possibly longer, but I can for sure say 8. I've been having chronic diarrhea all day, every day. It basically kicks in within 15 min of eating and even afterwards I'm left feeling all bloated and tangled up in my guts. Not constipated, though, so my doc said it likely wasn't an IBS thing. It's not lactose intolerance either, because I'm a strict vegan and have been for about 4 years. I'm also chronically iron deficient (always chalked it up to the vegetarian and now vegan thing) and have numbness in my thighs occasionally along with lots of tingling in my hands and feet always. 

I took it upon myself recently to cut gluten for 2 weeks just to see if I felt better. Lo and behold, I absolutely did. It took maybe 2-3 days after cutting it to feel fine, but I FINALLY did feel fine during those 2 weeks, which was kind of amazing after 8 months of feeling like s$#&. 

At the end of those two weeks, I had a UTI and had to get antibiotics from the doc. I wasn't going to mention the gluten thing just yet because, you know, global pandemic; bigger problems, but she asked me if there was anything else going on and I ended up telling her about feeling GOOD after no gluten. She signed me up for a bloodwork panel 2 weeks down the road to check for celiac. BUT, I had to eat gluten for the next 14 days. 

I did, it sucked. I noticed symptoms more clearly because I had the contrast of feeling good for a bit before feeling bad all over again. Bloating, cramping, diarrhea, but also exhaustion and like... my face is hot and feels kind of dry and tense, if that makes sense? My skin broke out too, though that's possibly unrelated. 

TLDR, here's my question:

Doc had me go back to eating gluten daily for 2 weeks, after having cut it completely for 2 weeks. I got my bloodwork done and just got the test results back. 

1) was 2 weeks of eating gluten enough before a blood test to not throw things off? I've been reading on here and it seems like these blood tests are finicky

2) only the tTG test and the IgA test were done, but I'm seeing something about a DGA test that people show positives on, even if they have a low tTG. Should I push to get that done?

3) there's a global pandemic. Should I just eat gluten-free and ride out the next couple of months and just not worry about this until the doctor's offices aren't so stretched thin? 

 

Any advice would be super welcome! Thank you!

 

Edited April 2, 2020 by maizzy

[cyclinglady]

7 hours ago, maizzy said:

Hi friends!

So I'm a bit confused as to what to do next. My story is this: I'm a 28 year old lady and I've been feeling bad for at least 8 months, possibly longer, but I can for sure say 8. I've been having chronic diarrhea all day, every day. It basically kicks in within 15 min of eating and even afterwards I'm left feeling all bloated and tangled up in my guts. Not constipated, though, so my doc said it likely wasn't an IBS thing. It's not lactose intolerance either, because I'm a strict vegan and have been for about 4 years. I'm also chronically iron deficient (always chalked it up to the vegetarian and now vegan thing) and have numbness in my thighs occasionally along with lots of tingling in my hands and feet always. 

I took it upon myself recently to cut gluten for 2 weeks just to see if I felt better. Lo and behold, I absolutely did. It took maybe 2-3 days after cutting it to feel fine, but I FINALLY did feel fine during those 2 weeks, which was kind of amazing after 8 months of feeling like s$#&. 

At the end of those two weeks, I had a UTI and had to get antibiotics from the doc. I wasn't going to mention the gluten thing just yet because, you know, global pandemic; bigger problems, but she asked me if there was anything else going on and I ended up telling her about feeling GOOD after no gluten. She signed me up for a bloodwork panel 2 weeks down the road to check for celiac. BUT, I had to eat gluten for the next 14 days. 

I did, it sucked. I noticed symptoms more clearly because I had the contrast of feeling good for a bit before feeling bad all over again. Bloating, cramping, diarrhea, but also exhaustion and like... my face is hot and feels kind of dry and tense, if that makes sense? My skin broke out too, though that's possibly unrelated. 

TLDR, here's my question:

Doc had me go back to eating gluten daily for 2 weeks, after having cut it completely for 2 weeks. I got my bloodwork done and just got the test results back. 

1) was 2 weeks of eating gluten enough before a blood test to not throw things off? I've been reading on here and it seems like these blood tests are finicky

2) only the tTG test and the IgA test were done, but I'm seeing something about a DGA test that people show positives on, even if they have a low tTG. Should I push to get that done?

3) there's a global pandemic. Should I just eat gluten-free and ride out the next couple of months and just not worry about this until the doctor's offices aren't so stretched thin? 

 

Any advice would be super welcome! Thank you!

 

All celiac disease testing does require you to be on a full gluten diet.   I am not sure if your results could be considered valid.  You are right on the border.  If I recall, in as little as two weeks the small intestine can heal on a strict gluten free diet.   But it usually takes much longer for serum antibodies to reduce (up to a year).    Some celiacs, like me, never test positive to the TTG or the EMA.  That is pretty rare.  But if you are willing to go back into a lab, you could get the DGP tests but  if you are sick, you might not want to pursue this.   Do you have any other autoimmune disorders?  

Iron-deficiency anemia was my main symptom too.    I had no GI issues.  I thought a B-12 deficiency was more common in vegans?  

I think you need more answers from your doctor.  I understand that the pandemic is going on.  You need to figure this out.  You could have something else like Crohn’s which can cause the exact same symptoms.  However, if you received relief from the diet, consider remaining gluten free until this is over.  A gluten diet has been helpful for some people who have IBD (like Crohn’s).   It certainly can not hurt.  

I hope this helps.  

Edited April 3, 2020 by cyclinglady

[maizzy]

20 hours ago, cyclinglady said:

All celiac disease testing does require you to be on a full gluten diet.   I am not sure if your results could be considered valid.  You are right on the border.  If I recall, in as little as two weeks the small intestine can heal on a strict gluten free diet.   But it usually takes much longer for serum antibodies to reduce (up to a year).    Some celiacs, like me, never test positive to the TTG or the EMA.  That is pretty rare.  But if you are willing to go back into a lab, you could get the DGP tests but  if you are sick, you might not want to pursue this.   Do you have any other autoimmune disorders?  

Iron-deficiency anemia was my main symptom too.    I had no GI issues.  I thought a B-12 deficiency was more common in vegans?  

I think you need more answers from your doctor.  I understand that the pandemic is going on.  You need to figure this out.  You could have something else like Crohn’s which can cause the exact same symptoms.  However, if you received relief from the diet, consider remaining gluten free until this is over.  A gluten diet has been helpful for some people who have IBD (like Crohn’s).   It certainly can not hurt.  

I hope this helps.  

Thank you thank you! It does help. 

I do not have any other autoimmune disorders to the best of my knowledge. I reached out to my doc to talk through the results a bit more with her and see what she thinks the next steps should be. In the mean time, might as well cut the gluten and see how that goes again. 

Also luckily, I'm not B12 deficient! I've taken supplements for that for years and been getting it checked regularly. Yes it is a problem on a vegan diet because the best plant source of B12 is some sort of kelp lol. Not the most common thing to eat on the regular. Nutritional yeast has some too, but that doesn't go quite far enough sometimes. Thus, the supplements. B12 is a body stockpile kind of vitamin. It builds up over years in your system and doesn't go down super quickly unless you're REALLY not getting any for extended periods of time. Makes sense deficiency-wise with untreated Celiac or in long term plant-based diets.