Feeling lost, what to do?

[Quen]

So. I've had some digestive symptoms off and on my whole life. And I've always been pale, underweight, etc. Ate a poor diet growing up because we were poor and didn't know better, and then in my teens, felt myself slowly start to feel worse until my system seemed to "break" after going out for a huge Chinese buffet dinner with family. For months afterwards, was struck with nausea, high heart rate/palpitations, constant gurgling in my digestive system, poor sleep, and so on. But I changed my diet and started eating more healthy and whole foods, started taking vitamins and probiotics, and aside from some "off" days every now and then, seemed to do much better. Went into my 30s and got married, had five kids, seemed to have relatively decent health and energy. Then had baby #5 with heavy blood loss afterwards. And then everything seemed to go wrong. In the months that followed, had more fatigue, kept getting sick, had more and more digestive issues (usually loose stools in the morning) about once a week or so. And then about six months postpartum, the kids picked up a stomach bug, I got it, too, and it seemed I never really came back from it.

After going to the doctor several times and being told it was just the leftovers from the tummy bug or IBS, I ended up in the ER with heart palpitations and was told my thyroid had gone slightly hyper. Was put on medication for it, slowly started to feel better, though many of the digestive issues never really let me go. So about a year ago (eight months after the ER trip) went to a naturopath who checked for parasites (negative) and checked my nutrients and found I was low in a lot of things, especially iron and B vitamins. So I started taking vitamins, changed my diet even more (cut out gluten, dairy except for an occasional lactose-free yogurt, processed foods) and started to feel better slowly again, but still with some lingering issues. Went to the doctor in June of 2020 (six months after the naturopath) to find that my MCV/MCH were high on my blood tests, and that I had macrocytic anemia, and that I wasn't absorbing B12. So I was put on B12 injections (since pills didn't seem to be doing the trick) and AGAIN started to slowly improve. I started to improve enough that I began branching out with my diet and started sneaking in more gluten again. I went a bit nuts over the holidays this year, having cookies or something every day for several weeks, and then all of a sudden my system crashed right around New Years.

I realized it was probably the baked goods, so I went for the blood test for celiac. They did igA and TTIGA and both were normal/negative. So they won't do a biopsy because the blood tests were fine.

So now I don't know what to do. I'm planning on making an appointment with a functional medicine doctor to see if they can dig deeper.

My symptoms now are off and on nausea, gas (sometimes smelly, but not all the time), feeling worse (nauseated, just overall gross) when I have to pass gas or use the bathroom, upper abdominal pain (but it seems to be centered around the edge of the ribcage, as if it's the bone itself that hurts), poor sleep, weight loss, having to go the bathroom urgently usually first thing in the morning (around 3am-5am), cold hands and chills. All of those symptoms worsened after having more gluten/baked goods over the holidays. 

Odd things that I can't seem to make heads or tails of are that I wake up around the same time every morning having to use the bathroom and feeling generally ill. Sometimes that feeling returns in the afternoon around 3:30pm. Usually by evening a lot of the symptoms seem to fade out and I start to not feel as bad. I can lie down and go to sleep and not feel terrible, but then start waking up in the middle of the night with gas and then needing to go to the bathroom at that same 3-5am time. And symptoms also always worsen around my cycle. 

So is it hormonal? Is it a gluten sensitivity? Is the gluten messing with my hormones? Am I losing my mind? I just want to feel better and I feel like ever since I had my last baby 2 1/2 years ago I can't get on top of it. 

[Quen]

Oh! I also want to add that my two oldest kids are exhibiting some similar symptoms (abdominal pain, fatigue, muscle aches, moodiness, nausea, poor sleep, etc.) and they also came up normal/negative on the blood tests. And my cortisol was checked as well and I was tested for adrenal insufficiency and those came back normal as well. And we've cut out dairy before for my oldest daughter and it made no difference. 

[trents]

Your gluten relapse over the holidays may not have been long enough to give a valid blood antibody test for celiac disease. Six to eight weeks eating a significant amount of gluten daily (equivalent of 1-2 slices of bread) is the guideline for pretesting gluten ingestion in order to ensure a valid antibody test.

You might also look into SIBO testing.

Edited January 11, 2021 by trents

[Scott Adams]

I agree with @trents that if you were gluten-free, or mostly gluten-free, for the months leading up to the blood test you cannot trust the results.

Since you did seem to get some relief when you cut out gluten, and seem to also have linked large doses of gluten to periods where you have these "crashes," to me it sounds like you need to pursue the gluten-free diet fully for a few months to see if this approach will improve your health.

If you need to be 100% sure before going gluten-free then take this up with your doctor, explain that you were gluten-free for a time leading up to your blood test, and ask them if they might be willing to have you retested in 6 weeks. If they are willing to do this for you, then you would need to eat a slice of bread daily until the tests are completed. If not, you could do a mail order test on your own which costs ~$100.

It is really up to you whether or not you need a formal diagnosis. A nutritionally balanced gluten-free diet isn't harmful to you in any way, and if you do have celiac disease and/or gluten sensitivity it will help you recover (and a formal diagnosis, although helpful, isn't required unless you can't stay on the diet without it).

 

[MariaGF]

On 1/11/2021 at 4:33 AM, Quen said:

So. I've had some digestive symptoms off and on my whole life. And I've always been pale, underweight, etc. Ate a poor diet growing up because we were poor and didn't know better, and then in my teens, felt myself slowly start to feel worse until my system seemed to "break" after going out for a huge Chinese buffet dinner with family. For months afterwards, was struck with nausea, high heart rate/palpitations, constant gurgling in my digestive system, poor sleep, and so on. But I changed my diet and started eating more healthy and whole foods, started taking vitamins and probiotics, and aside from some "off" days every now and then, seemed to do much better. Went into my 30s and got married, had five kids, seemed to have relatively decent health and energy. Then had baby #5 with heavy blood loss afterwards. And then everything seemed to go wrong. In the months that followed, had more fatigue, kept getting sick, had more and more digestive issues (usually loose stools in the morning) about once a week or so. And then about six months postpartum, the kids picked up a stomach bug, I got it, too, and it seemed I never really came back from it.

After going to the doctor several times and being told it was just the leftovers from the tummy bug or IBS, I ended up in the ER with heart palpitations and was told my thyroid had gone slightly hyper. Was put on medication for it, slowly started to feel better, though many of the digestive issues never really let me go. So about a year ago (eight months after the ER trip) went to a naturopath who checked for parasites (negative) and checked my nutrients and found I was low in a lot of things, especially iron and B vitamins. So I started taking vitamins, changed my diet even more (cut out gluten, dairy except for an occasional lactose-free yogurt, processed foods) and started to feel better slowly again, but still with some lingering issues. Went to the doctor in June of 2020 (six months after the naturopath) to find that my MCV/MCH were high on my blood tests, and that I had macrocytic anemia, and that I wasn't absorbing B12. So I was put on B12 injections (since pills didn't seem to be doing the trick) and AGAIN started to slowly improve. I started to improve enough that I began branching out with my diet and started sneaking in more gluten again. I went a bit nuts over the holidays this year, having cookies or something every day for several weeks, and then all of a sudden my system crashed right around New Years.

I realized it was probably the baked goods, so I went for the blood test for celiac. They did igA and TTIGA and both were normal/negative. So they won't do a biopsy because the blood tests were fine.

So now I don't know what to do. I'm planning on making an appointment with a functional medicine doctor to see if they can dig deeper.

My symptoms now are off and on nausea, gas (sometimes smelly, but not all the time), feeling worse (nauseated, just overall gross) when I have to pass gas or use the bathroom, upper abdominal pain (but it seems to be centered around the edge of the ribcage, as if it's the bone itself that hurts), poor sleep, weight loss, having to go the bathroom urgently usually first thing in the morning (around 3am-5am), cold hands and chills. All of those symptoms worsened after having more gluten/baked goods over the holidays. 

Odd things that I can't seem to make heads or tails of are that I wake up around the same time every morning having to use the bathroom and feeling generally ill. Sometimes that feeling returns in the afternoon around 3:30pm. Usually by evening a lot of the symptoms seem to fade out and I start to not feel as bad. I can lie down and go to sleep and not feel terrible, but then start waking up in the middle of the night with gas and then needing to go to the bathroom at that same 3-5am time. And symptoms also always worsen around my cycle. 

So is it hormonal? Is it a gluten sensitivity? Is the gluten messing with my hormones? Am I losing my mind? I just want to feel better and I feel like ever since I had my last baby 2 1/2 years ago I can't get on top of it. 

Quen, did you ever figure out what was wrong? My symptoms are similar, although I am completely gluten free. I even have problems with getting up in the middle of the night to pee and urgently go every morning. My GI said she can’t test me unless I start eating gluten again. I recently had what seems like a relapse and have anemia, weight loss and bad bloating / diarrhea. So far blood tests except anemia are all normal. It’s baffling