Rapid Weight Loss and malabsorbtion issues

[DemonKnight]

Just wondering if anyone has any input on advice for continued and rapid weight loss and malabsorption issues. I'm obviously aware damaged Villi results in absorption issues, but I'm pretty concerned at this point. In 2018 and before I was a health 164 lbs, but ever since the Celiac symptoms and currently I weight about 127 lbs. That's almost 40 lbs lost. I've heard of weight loss with Celiac people, but never that much. 10 of those lbs, I've lost since May 1st of this year alone so it's been speeding up recently. 

For background information, when diagnosed in 7/20 , I was told I was a Lev 3/ the worst type of damage that could be done to the Villi/Celiac people. I tried to get the TTG levels under control, but always hovered around 25 for a while. I started The paleo diet mid May of this year, and finally started getting them dropped. Last blood test was 15, and waiting now for new results from a recent blood test. I'm convinced going Paleo will take care of the TTG problem at this point. 

I've done a lot of research. Did a stool test for parasites which is still pending for 2 weeks. Checked pancreas enzyme production which was normal, did a abdominal CT scan which they said everything looked good. Currently doing SIBO/ bacteria overgrowth test tomorrow. So I'm trying to test for things that may be consuming my nutrients. 

I did a 2nd Endoscopy, and they actually said things looked better than the year prior. The villi were in tact and were regenerating, and they described me as I  looked like a person who was staying away from Gluten from a biopsy perspective. 

 

To me, this seems like a problem where literally something in my body is stealing these nutrients away from me, or I'm just not able to absorb them. I have a little theory I may have low stomach acid because of my losing ability to digest certain foods and also meat. There are random times I get almost a feeling like a ball of food is stuck in different parts of my stomach. I have rotating pains around my stomach. I usually get severe pains in the left lower side, but when food seems traveling slow and stuck up in the high abdomen, then the pains going away in the side, and vice versa. I've actually done the baking soda test for those familiar with it to test your stomach acid levels. It's not guaranteed, but it seems like that may be a problem. It is possible, my body is not breaking down food well enough to absorb and stomach acid HCL could be  a cause, I don't know. I've just purchased a digestive enzyme with HCL to help test this theory and see if it makes a difference.

But the research is starting to drive me crazy. I don't know what else to look for. I'm signed up to see a functional doctor, but they are so booked it won't be until early August. I've just lost so much damn weight. And these pains I describe weren't always there as frequently. They seemed to kick in early May, which is why I started changing up the diet and also help with the TTG problems. Constipation was always an issue with me and I take Linzess a stomach medication, which floods the intestines with water to facilitate bowel movement. I was never comfortable with this constipation not eventually clearing up on it's own, and me being reliant on this stomach medication. It's actually what let me to find SIBO/IMO type stuff. I do go to the bathroom regularly every morning FYI, but only because of this medication. 

I've also starting doing healing supplements for my gut lining. Taking about 7-10 grams of Glutamine a day, Collegen peptides, and bone broth which there are a lot of testimonials that this helps people with stomach lining repair and leaky gut type symptoms. 

[Scott Adams]

you might want to go down the checklist in this article and try to make sure that your diet is 100% gluten-free, including all medications, skin care products, etc.

Many celiac’s have additional food intolerance issues, so you might want to keep a food diary to find any other foods that might cost you issues. Casein or cows milk intolerance is a very common issue with many celiacs.

Definitely continue to consult with your doctor about the situation because obviously it can be dangerous.

 

[DemonKnight]

That's a good list Scott, thank you. Looks like I think that's naturally where I was heading, but it looks like there are a few things on that list I'll pursue. I'm not too worried anymore about gluten exposure though, If I posted my diet it's really just super Paleo/whole foods. Meats, poultry, fruits, and vegetables. I'm just more worried something is happening in conjunction with Celiac at this point. No reason why my weight loss should be excellerating if my 2nd endoscopy showed the villi are regenerating and were not flattened anymore. Just doesn't make sense. I'll starting hitting these checkboxes as soon as I can. 

[Tee L]

3 hours ago, DemonKnight said:

That's a good list Scott, thank you. Looks like I think that's naturally where I was heading, but it looks like there are a few things on that list I'll pursue. I'm not too worried anymore about gluten exposure though, If I posted my diet it's really just super Paleo/whole foods. Meats, poultry, fruits, and vegetables. I'm just more worried something is happening in conjunction with Celiac at this point. No reason why my weight loss should be excellerating if my 2nd endoscopy showed the villi are regenerating and were not flattened anymore. Just doesn't make sense. I'll starting hitting these checkboxes as soon as I can. 

Hi,

I have severe gluten intolerance.  I did FODMAP at wits end and discovered intolerance to mushrooms.  I also can’t eat dairy unless really cooked, and no tree nuts (itching).  I highly recommend searching for other triggers.

[DemonKnight]

Will do Tee. Thank you 

[Joanie1]

Hi, I feel your pain!

I was diagnosed in Dec 2020 with celiac disease after months of nausea, constipation, and ongoing weight loss.   After the diagnosis, I was extremely careful about going gluten free as I live alone, prepared my own food, and did not eat out.   The same severe symptoms continued and in April 2021 I was told by my gastroenterologist that I was not being patient enough and should seek a celiac expert.   He never followed up with any panels to look at the gluten status in my body and I had already been tested for other digestive issues.

In May 2021 I followed a recommendation to a new gastroenterologist, who surmised that celiac was not the current culprit as I was being so careful, and blood tests confirmed that gluten is not in my body.   We did perform a gastric emptying test showing significant delays in stomach emptying and gastroparesis.   Sounds strange but I was so happy to finally get a diagnosis in addition to celiac!

I am on a strong medication, Reglan, which has severe side effects but mine have been mild and we are monitoring it.  Three weeks into it and I am not vomiting and am eating much more.   So different from throwing up everything that I could never figure out what to eliminate!

So there may be another answer for you.  I also ordered a cookbook from Amazon written for gluten free and gastroparesis diets which  has been very helpful.  The gastroparesis diet is very low fiber and fat.

Since gastroparesis is more common than celiac, it is possible that you should be tested for that.  I do not see it mentioned much in this forum as an adjunct disease but it should be considered.

I wish you much good luck and healing.