Curious as to others symptoms

[Rose2010]

I'm in my late 20s and since I've remembered, I've always had some sort of stomach issue. As a kid my mom said it was IBS, and as I grew older I chalked it up to lactose intolerance. Lately though, I've been eating almost dairy free, and it's honestly not better, which brings me to a thought I've been mulling for a while: gluten intolerance/sensitivity?

Then I started reading up on Celiac's and symptoms, which check check check. Of course, common symptoms, but symptoms that haven't been explained or checked through other diseases/syndromes. But I also know there is just the regular intolerance of wheat/gluten, too, which is more common and may be more likely. 

For the last week or two, I won't say I went 100% gluten free, but I did a lot of gluten free meals. My lunches were chickpea pasta or meat with potato, or salads, my breakfast shakes are already vegan & gluten free. Dinner is usually the same as lunch, if I eat a dinner.  But my guts are in an upset beyond belief,this week has been a week from absolute down under, everytime I go to pee, I also poop, and it's not pleasant, at all. It's like this every so often, but I can't say I actually keep track,  but I don't know if food has any correlation or not, if I'm being honest here. My bathroom breaks aren't always the prettiest, but they aren't usually this awful, and definitely not this frequent unless I'm in one of the every so often flare ups of an unknown reason... I'm helpful, I know...

Another thing I found interesting was irregular and light periods - until I started on BC pills, I had extremely irregular periods - 38-60 day cycles, sometimes going missing for 3-7 months at a time, and always being very light, 2-3 days. No doctor has been concerned. Tested negative for PCOS in every way possible.

A few years ago, I somehow dropped about 25-30 pounds. I wasn't trying, I can't even tell you how I did it ("I stopped snacking?"). Then I slowly gained it back, the rapidly gained extra weight. Now I'm working on safely losing that weight. 🤦‍♀️

Headaches, anxiety, depression, adult ache, acid reflux & heart burn, constant hiccups, awful gas.

I also get weird pre-syncope episodes where my blood pressure drops unexplainably, at random. They aren't frequent enough to make note of, though I did have a cluster two years ago and  went to the cardiologist and he was like, lose weight and exercise more 🤷 (lol thanks guy, it happened when I was 115 pounds too, and when I was an active teenager, but ok.)

Not that it means a whole lot, but 23andme has the variant detected in the hla-dqa1 gene. My albumin was *slightly* low on my last blood work but not enough for the doctor's to concern. 

I'm probably just crazy and looking for something, but I did order that blood test from the website that is linked -- I read around that for best results 2 pieces of wheat bread should be eaten a day for 6-8 weeks? Is the correct? 

I'm just curious for other people's experiences, as I read through the forum too.

[trents]

Welcome to the forum, Rose2010!

Yes, regular amounts of gluten for 6-8 weeks pretest.

The term you are looking for early in your post was NCGS (Non Celiac Gluten Sensitivity). 10x more common than celiac disease. They share many of the same symptoms and the antidote is the same. There is no test for NCGS so that dx is arrived at by first ruling out celiac disease for which there are two kinds of diagnostic testing.

Low albumin and low total protein is experienced by some celiacs. That is my experience in fact. Even though I have been eating gluten-free for many years albumin/total protein is still borderline low.

I would not at all be surprised if you test positive for celiac disease. But you must realize you cannot expect to improve unless you make a total commitment to eating gluten-free after all testing is done.

Perhaps this will help:

Going gluten-free includes checking all pills and supplements for gluten. Even small amounts of gluten can keep the inflammation smoldering in the small bowel.

Also, oat protein, avenin, (even gluten-free oats) and dairy protein, casein, cause similar reactions to gluten in many celiacs. Eggs, soy and corn also give some celiacs issues. So, sometimes it's not as simple as cutting out gluten.

In addition, many celics suffer from SIBO (Small Intestine Bacterial Overgrowth) so there are some related medical conditions that may need to be checked into.

[Rose2010]

9 hours ago, trents said:

Going gluten-free includes checking all pills and supplements for gluten. Even small amounts of gluten can keep the inflammation smoldering in the small bowel

Thanks for this tidbit - I check my stuff for dairy because once I used a probiotic with dairy in it and I was MISERABLE. All of my meds I take are gluten & dairy free (with an exception of my birth control, it's got dairy, all of them do, it's inevitable, and I'm not allergic so it's fine), my probiotic is vegan & gluten free. The daily vitamin I started taking a few weeks ago isn't gluten free, so I found one that is and I'm going to switch. Not that is quite matters at the moment with the test, but, just preparing.

 

Thanks for that information- I'll be checking it out.

[Awol cast iron stomach]

On 3/13/2022 at 9:22 AM, Rose2010 said:

Thanks for this tidbit - I check my stuff for dairy because once I used a probiotic with dairy in it and I was MISERABLE. All of my meds I take are gluten & dairy free (with an exception of my birth control, it's got dairy, all of them do, it's inevitable, and I'm not allergic so it's fine), my probiotic is vegan & gluten free. The daily vitamin I started taking a few weeks ago isn't gluten free, so I found one that is and I'm going to switch. Not that is quite matters at the moment with the test, but, just preparing.

 

Thanks for that information- I'll be checking it out.

You have many symptoms similar to mine.  After undergoing my gluten challenge I was diagnosed NCGS. As a child my Dr told my mom my symptoms was just childhood anxiety, and she should teach me to be calm. Then as my GI symptoms became even worse in my early  20s I was diagnosed as IBS by symptoms only.

I broke out in a horrible PUPPP rash after giving birth to my first child. (PUPPP can be found in undiagnosed celiac/gluten intolerant ) My OB/GYN just have me cream,band was annoyed to do that. As it was the nurse who called her in, and said your patient is covered in a rash epigastric to ankles. 

It was another 12 years before I was diagnosed officially NCGS. My cousin a celiac also was not properly diagnosed until adulthood, and after having children as well 

I am also intolerant of milk and corn. I avoid many additives, stabilizers, and dyes in foods as well.

Trent gave you excellent information.

I wish you luck in your gluten challenge and diagnosis. The earliest someone can get diagnosed the better. My misdiagnosis has wreak havoc on my mind, body, and spirit for many ages/stages of my life for too long.

This website and forum helped me very much in the early stages.  I often still find the new research,  updates, and product information as well.

Best wishes.

Edit I forgot to add I also do not tolerate gluten-free oats either

Edited March 20, 2022 by Awol cast iron stomach
Oats comment