Gluten Free for 9 months but still have some symptoms

[SaintFlyer]

Hi everyone! 
 

I’m very new to this forum but am feeling very alone on my recovery journey and have many unanswered questions. Any advice or insight is very welcomed. I was diagnosed through blood work and biopsy after a very scary hospitalisation. I had so many very sever symptoms including organs getting ready to rupture. After going gluten free for 9 months my blood work is only slightly elevated but overall MUCH better than my starting point. My concern is I still feel extreme pressure at the base of my sternum (stomach area) and feel overly full after just a few almonds or apple slices. I’m not able to finish meals or eat more than half a cup of anything before feeling uncomfortable and lots of pressure. Has anyone else experienced this kind of an issue? Is this something that could potentially be outside of celiac?

Thank you so much for reading!

sincerely,

nervous clueless girl

[trents]

Welcome to the forum, SaintFlyer!

My feeling is the fullness symptom you describe after eating is something that is outside of celiac disease but something outside of it in the sense of possibly being indirectly connected to celiac disease. If I were you I'd be investigating the possibility of an H. Pylori infection or a peptic ulcer. I would also look into SIBO (Small Intestine Bacterial Overgrowth). Several of these things are more common in the celiac population and so there is likely some kind of connection.

[Scott Adams]

Have you noticed any connection with your symptoms and a certain food? I am wondering if you might have an additional food intolerance issue. Keeping a food diary could help discover if this is the case.

[Wheatwacked]

  On 3/12/2023 at 12:40 AM, SaintFlyer said:

I’m not able to finish meals or eat more than half a cup of anything before feeling uncomfortable and lots of pressure.

Expand Quote  

Celiac Disease causes malnutrion. That malnutrition causes other issues. There are other autoimmune effects on multiple systems that are largely ignored because they don't fit the required diagnostic criteria.

A build up of belly fat takes up space in your abdomin making you uncomfortable and feeling like you are full.

This cause me to lose 30 pounds of belly fat from July to October of this year: 

• Raise vitamin D blood level to 80 ng/ml. It actually took me from 2015 to 2020 to do this even at 10,000 IU a day. Autoimmune and mental health.
  • B1 Thiamine 500 mg per day. Transport of glucose.
  • B3 Nicotinic Acid 500 mg per day.
    • increases capillary flow. The flushing and itching goes away in a few days. It is not a medical emergency but very annoying. The safe upper limit was set to avoid this but otherwise there is no negative side effect.
  • Vitamin B5 Pantothenic Acid 500 mg per day.
    • B5 is the last step that actually creates the ATP our cells use for energy.
  • Vitamin B12
    •  Vitamin B12 is a nutrient that helps keep your body's blood and nerve cells healthy and helps make DNA, the genetic material in all of your cells. Vitamin B12 also helps prevent megaloblastic anemia, a blood condition that makes people tired and weak. I have been taking 1000 mcg a day for years.
  • 500 mg Choline a day.
    • Choline is ESSENTIAL to fat metabolism. It is the major component of mitochondrial membrane structure.

 

 

[Rick Sanchez]

  On 3/16/2023 at 2:03 PM, Wheatwacked said:

Celiac Disease causes malnutrion. That malnutrition causes other issues. There are other autoimmune effects on multiple systems that are largely ignored because they don't fit the required diagnostic criteria.

A build up of belly fat takes up space in your abdomin making you uncomfortable and feeling like you are full.

This cause me to lose 30 pounds of belly fat from July to October of this year: 

• Raise vitamin D blood level to 80 ng/ml. It actually took me from 2015 to 2020 to do this even at 10,000 IU a day. Autoimmune and mental health.
  • B1 Thiamine 500 mg per day. Transport of glucose.
  • B3 Nicotinic Acid 500 mg per day.
    • increases capillary flow. The flushing and itching goes away in a few days. It is not a medical emergency but very annoying. The safe upper limit was set to avoid this but otherwise there is no negative side effect.
  • Vitamin B5 Pantothenic Acid 500 mg per day.
    • B5 is the last step that actually creates the ATP our cells use for energy.
  • Vitamin B12
    •  Vitamin B12 is a nutrient that helps keep your body's blood and nerve cells healthy and helps make DNA, the genetic material in all of your cells. Vitamin B12 also helps prevent megaloblastic anemia, a blood condition that makes people tired and weak. I have been taking 1000 mcg a day for years.
  • 500 mg Choline a day.
    • Choline is ESSENTIAL to fat metabolism. It is the major component of mitochondrial membrane structure.

 

 

Expand Quote  

Yup. 100% Spirolina is a pretty good source for much of the above.

Unsupported by a double blind academic study, I might add, it seems like there can also be a colonitis like effect from coarse textured foods, such as nuts and seeds, physically hanging up maybe, higher in the damaged gut.  Horse or carriage, I don't know. I just know I am not the only one.

[Rick Sanchez]

  On 3/12/2023 at 12:40 AM, SaintFlyer said:

Hi everyone! 
 

I’m very new to this forum but am feeling very alone on my recovery journey and have many unanswered questions. Any advice or insight is very welcomed. I was diagnosed through blood work and biopsy after a very scary hospitalisation. I had so many very sever symptoms including organs getting ready to rupture. After going gluten free for 9 months my blood work is only slightly elevated but overall MUCH better than my starting point. My concern is I still feel extreme pressure at the base of my sternum (stomach area) and feel overly full after just a few almonds or apple slices. I’m not able to finish meals or eat more than half a cup of anything before feeling uncomfortable and lots of pressure. Has anyone else experienced this kind of an issue? Is this something that could potentially be outside of celiac?

Thank you so much for reading!

sincerely,

nervous clueless girl

Expand Quote  

It takes time, sounds like you were pretty far along.  It takes a long time to get that sick, it will take a long to get well. About 5 years for me to get to the point I could actually call myself well. A doctor who is a personal friend, not my doctor really made me mad right after being diagnosed. Me half dead and miserable, he very casually said "at least it's something you can fix". That tweaked my melon, buy, he was right.  It's one of the very few autoimmune diseases you can get better from.  

You know how you feel, keep an eye on things, see a doctor if something feels too far off.  I would avoid coarse, hard to digest stuff, like nuts and seeds for a while, basically what someone with colonitis can't eat.  That should get better and you can add them back in. The list of vitamins the other user posted is a good one. The B's and C are critical for nerve communication, and keeping your gut working, but yet harder to absorb because of damage. Irony, huh?

Don't starve yourself, make sure you get enough fiber, pumpkin, squash, brassica..... Asian food is a good substitute, but you have to cook it yourself, and watch soy sauce ingredients.  My advice, eat well, rich foods, greens, and meat, and squash, plenty of olive oil.

And as gross as it is to say publicly, I think most Celiacs will tell you, a good laxative flush every now and again, will have benefits, just don't over do it.