Semi Freaking Out NCGS

[MichaelH]

Hello all. Just joined and my goal is to be educated by the people who actually have gluten problem experience. Ill try to keep this somewhat short; Im a 57 year old male who approximately 20 years ago I started having GI problems. My symptoms were extreme painful bloating, I started to experience a blood sugar crash a couple times a week where I needed to eat "anything" to not feel like I was going to pass out. The heartburn I had daily was pretty bad and I was given Nexium daily. I was somewhat muscular, not in horrible shape (was in law enforcement)and was pretty active. My PCP did an exam, pressed on my left lower abdomen and I almost hit the ceiling. Went to see my wife's GI doc. Every test known to man was conducted, colonoscopy, endoscopy, celiac, gastric emptying test where I drank some nasty goo, sat around a few hours then inverted for more scans. Doc was completely stumped. I had nothing wrong with me that she could find. She knew I was in pain and could feel my belly when it acted up, as my gut was hard as a rock. I was able to figure out why my guts blew up, it was because I wasn't passing ANY gas. When I wasn't having issues, my belly was pretty hard still and I just thought it was visceral fat. Y'all know what she told me to do, follow FODMAP and/or elimination of certain foods. First to go was dairy, then all meat. Although we felt better, that wasn't causing my problems. Retired, moved to another state all while this continued. New GI doctor had zero ideas and pretty much pushed me out the door. Side note; not one Dr or anybody in the healthcare fields I dealt with mentioned Gluten unless it was related to celiac, which I don't have (at least the one test I had). What I knew of Gluten was "if you've been cleared of having celiac then Gluten isn't the problem" Uh-Huh. Fast forward to about 18 months ago. We still weren't eating meat for the most part, the wife made us a dinner where the main portion was made from vital wheat gluten. Two-three bites in and I was floored with instant hard bloat and pain. The Ahh Ha moment. Have not had any food with Gluten in it since. All that "visceral fat" wasn't, it was massive amounts of inflammation. The weight started coming off pretty fast and steady. I went for my routine physical and my PCP (PA) did not like the weight loss. I explained everything to her that y'all just read. Nope, doesn't add up she said. She sent me for all kinds of tests, CT scans, neck to my butt. Scared the life outta me, but everything came back normal. Since that Ah-ha moment Ive had ZERO heartburn, zero, not once since then have I experienced any blood sugar crashes. Literally not once. I feel pretty much the healthiest Ive ever felt, lost all the inflammation from everywhere, head to toe. This is all good for sure, but Im still losing weight. Since quitting Gluten, its like my whole physiology changed, my appetite has gone way down as I rarely get super hungry. Im assuming the continued weight loss (fat and muscle) could be from a simple lack of calories. I mean, my sit bones hurt sometimes because I have no butt anymore. (Didn't have much there to begin with). I still find myself scared that I have some horrible cancer or something. Ive read online people who had similar experiences, but almost all the "experts" don't agree. Finally broke down and decided to join y'all here and see what I can find out. Am I becoming a hypochondriac? Am I dying? Is it possible for my GI physiology to completely change? Still not eating meat or wheat. This is kind of freaking me out............. So sorry for the length of this, but nobody else seems to listen. Y'all have a great holiday season. 

[trents]

Welcome to the forum, Michael!

Besides celiac disease, there is another gluten disorder known as NCGS (Non Celiac Gluten Sensitivity) as you indicate you are aware of from your post's subject line. It shares many of the same symptoms with celiac disease but there is no test for it yet. Celiac disease must first be ruled out. But NCGS is 10x more common than celiac disease. Having said that, I would like to know what kind of tests were run when you were tested for celiac disease in the first place. Usually, there are blood antibody tests ordered, of which there are several different ones but many physicians will only order the tTG-IGA instead of a "full celiac panel". The full celiac panel can catch celiac disease when for whatever reason the tTG-IGA throws a false negative. But the tests will be invalid of a low gluten or gluten free diet is already in place. At the end of the day, however, both have the same antidote, namely, total life-long avoidance of gluten.

May I ask why you are not eating meat anymore? That could be the reason you are losing weight. Meat is a nutritionally high density food and it may be difficult to get the protein you need and some of the B vitamins (especially B112) without it. Do you feel better after cutting out meat?

Edited November 17, 2023 by trents

[plumbago]

Hi,

What do you mean by blood sugar crashes? These usually occur with people taking certain medications for diabetes. Unless you are having hyperinsulemia, which precedes diabetes.

How much less are you eating, do you think? Would that be enough to account for the weight loss? What are you eating exactly?

You say you know why your guts blew up - because you weren't able to pass gas. What about stool? Were you moving your bowels regularly during the time you were not passing gas? What about other times - do you have regular BMs? Diarrhea?

You say you've had a lot of tests - and that they all came back normal. Have you requested the reports to see exactly what they were looking for and what the reports did say? The hard abdomen concerned me a bit - how is your abdomen when you are feeling ok? Still hard? Or not.?

Lots of questions - good luck, and keep us posted.

[knitty kitty]

Welcome to the forum!

Have you had a genetic test to see if you carry any known genes for Celiac Disease?

Have you been checked for vitamin and mineral deficiencies?

[Wheatwacked]

1 hour ago, plumbago said:

blood sugar crashes

I totally forgot that I used to get that.  That brings my total symptoms of gluten up to 20.  I don't think it is actually low glucose but suddenly you are drained of all energy, shakey and ready to collapse.  It's been a while and memory is vague but very disconcerting and any food in a storm.

If I were to guess I would say Thiamine Deficiency. Especially since I drank a ton of coffee.  Pediatrition started me on coffee in 5th grade for ADD and as an adult I regularly drank 10 cups of coffee a day.  If I can't sleep I have coffee and nodding off shortly after.  Coffee depletes Thiamine.  Thiamine is essential for carbohydrate metabolism.  The backup system, fat metabolism to glucose, requires Choline and less than 10% of the western world eats enough of it since Liver, eggs and beef have been accused of causing high cholesterol.

Dr Davis, Wheat Belly, refers to Toxic Hunger.

With the gluten addiction out of the way your body will naturally gravitate towards optimum weight, as opposed to socially acceptable weight.  "you're too skinny".  Look at pictures of people pre 1970.  You usally see 1 fat person and one skinny person in a group.  Current nutrition guidelines are a cruel joke, leading to growing infertility.

MichaelH, thanks for this post.

[Scott Adams]

If you can get copies of your celiac disease blood test results, and your endoscopy results, please share them here. Sometimes the antibody levels are elevated, but just below the marker for celiac disease, and many doctors just assume it's safe for such a person to continue eating gluten, when in fact they may have an issue with gluten. 

Also, did your doctor make sure you were eating at least 2 slices of wheat bread for 6-8 weeks leading up to the celiac disease tests? This is standard protocol, but isn't always followed.