Not celiacs but told by doctor to treat it like Celiacs

[DKG]

Hello Everyone,

So a year ago I woke up one night horribly bloated and in pain from cramping. It left me nauseous and unable to sleep and constipated. The nausea lasted for 2 months, I couldn't lay down to sleep because of nausea, I couldn't eat much either. Everything I ate made me bloated and constipated. Several visits to the ER and doctor, I finally got my referral for a GI specialist approved. By this time I had lost 30 lbs in 2 months and felt incredibly weak. After extensive testing, they determined I had gut hypersensitivity and celiac like symptoms but my celiacs gene wasn't active nor did my colon have damage from celiacs. Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs.

Over time, through trial and error I was finally able to start eating reasonably healthy food with supplements but I can't eat a lot anymore otherwise I get too bloated and I'm so uncomfortable all the time. Sometimes even normal food like eggplants or okra can get me burping for hours after eating. The only medicine I take now is miralax for the constipation. But I need to stop using it because it's not meant for longterm use. I was thinking of psyllium but since it has bulk forming properties that's just the opposite of what I want. Anyone had any experience with psyllium or similar situation to mine? I'm vegetarian and eating a lot of greens isn't gonna help if my meal size is small to begin with and greens don't provide a lot of calories. My normal meal is white rice,assorted veggies, and Ensure protein shake.

I hate that I can never tell what my body is gonna do. It makes it so hard to hang out with friends. And I'm still deciding whether to move for university or keep staying home. With my symptoms I'd be annoying any roommates I might have. 

Any suggestions/advice will help!

[trents]

5 minutes ago, DKG said:

After extensive testing, they determined I had gut hypersensitivity and celiac like symptoms but my celiacs gene wasn't active nor did my colon have damage from celiacs. Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs.

" . . .but my celiacs gene wasn't active." Have you had genetic testing done and if so, did it turn up that you have either or both of the genes for celiac disease that have been identified with the disease so far? The only way to know if your celiac genes are currently actively expressing themselves is to get proper testing to rule out celiac disease as the reason for your current symptoms, which, by the way are classic for celiac disease.

" . . . nor did my colon have damage from celiacs." Celiac disease doesn't damage the colon. It damages the villi lining the small bowel. 

"Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs." By another way to diagnose celiac disease are you referring to the blood antibody tests vs. the endoscopy/biopsy or are you referring to IgG vs. IGA antibody tests? And there are several different IGA and IGG tests that can be run. Which ones did you have done? Can you post the actual results align with reference ranges? Here is a primer dealing with using blood antibody tests to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ High IGG can indicate celiac disease. Here's an excerpt: 

Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency, which affects 2-3% of patients with celiac disease, or people who test negative for tTg or EMA antibodies. IgA deficiency in a patient may be indicative of other diseases that may cause villus atrophy, such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).

Based on what you shared I'm not convinced you don't have celiac disease or that you have gotten correct information about genes and testing.

[DKG]

19 minutes ago, trents said:

" . . .but my celiacs gene wasn't active." Have you had genetic testing done and if so, did it turn up that you have either or both of the genes for celiac disease that have been identified with the disease so far? The only way to know if your celiac genes are currently actively expressing themselves is to get proper testing to rule out celiac disease as the reason for your current symptoms, which, by the way are classic for celiac disease.

" . . . nor did my colon have damage from celiacs." Celiac disease doesn't damage the colon. It damages the villi lining the small bowel. 

"Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs." By another way to diagnose celiac disease are you referring to the blood antibody tests vs. the endoscopy/biopsy or are you referring to IgG vs. IGA antibody tests? And there are several different IGA and IGG tests that can be run. Which ones did you have done? Can you post the actual results align with reference ranges? Here is a primer dealing with using blood antibody tests to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ High IGG can indicate celiac disease. Here's an excerpt: 

Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency, which affects 2-3% of patients with celiac disease, or people who test negative for tTg or EMA antibodies. IgA deficiency in a patient may be indicative of other diseases that may cause villus atrophy, such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).

Based on what you shared I'm not convinced you don't have celiac disease or that you have gotten correct information about genes and testing.

Hello! Thank you for replying. I did mistakenly write colon, but yes I meant blunted villi were not detected. I am trying to figure out how to post pics on here.

[DKG]

https://hosting.photobucket.com/images/i/prettiepumpkin/celiac_HLA.webp

35 minutes ago, trents said:

" . . .but my celiacs gene wasn't active." Have you had genetic testing done and if so, did it turn up that you have either or both of the genes for celiac disease that have been identified with the disease so far? The only way to know if your celiac genes are currently actively expressing themselves is to get proper testing to rule out celiac disease as the reason for your current symptoms, which, by the way are classic for celiac disease.

" . . . nor did my colon have damage from celiacs." Celiac disease doesn't damage the colon. It damages the villi lining the small bowel. 

"Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs." By another way to diagnose celiac disease are you referring to the blood antibody tests vs. the endoscopy/biopsy or are you referring to IgG vs. IGA antibody tests? And there are several different IGA and IGG tests that can be run. Which ones did you have done? Can you post the actual results align with reference ranges? Here is a primer dealing with using blood antibody tests to detect celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ High IGG can indicate celiac disease. Here's an excerpt: 

Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency, which affects 2-3% of patients with celiac disease, or people who test negative for tTg or EMA antibodies. IgA deficiency in a patient may be indicative of other diseases that may cause villus atrophy, such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).

Based on what you shared I'm not convinced you don't have celiac disease or that you have gotten correct information about genes and testing.

Here are the blood tests pics.

lab test

lab test

lab test

lab test

most recent test  this pic was uploaded to my account slightly blurry.

[trents]

Thanks for the correction, clarification and additional information.

You can add pictures with any new post by clicking on the paperclip symbol in the lower left corner of the post text box before hitting the "Submit Reply" button. After a post is made you can add a picture later by clicking on the three horizontal dots in the upper right corner of the post and then choose "Edit" from the menu to see the paper clip again in the lower left corner.

You have one out of two gene markers we see for celiac disease potential. Having one celiac gene marker probably makes it less likely that you will develop celiac disease than if you had two. You can still develop celiac disease with only one marker and at any stage of life. Having the genes only establishes potential for having celiac disease, it does not guarantee that you do have it or will develop it. Many people with celiac genes never develop active celiac disease. It takes both genetic potential and some triggering stress event (such as a viral infection) for the genes to be expressed in active celiac disease.

The centerpiece of celiac antibody testing is the tTG-IGA and yours is negative. My guess would be that you have NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms as celiac disease and the antidote is the same. Namely, total abstinence from gluten for a life time.

[DKG]

Oh wow! Thank you for the in depth explanation! I had so many other tests done like pH probe, a smart pill, gastric emptying, etc. and most of them were normal. It's just weird that I can no longer eat as much as I used to and my calorie intake is around 1000. I tried exercising once and 20 mins later I was nauseous. I want to feel better and not tired all the time. But I don't know what to do anymore. Even for the constipation, I'm scared of stopping miralax. But I don't know any alternatives besides psyllium which I think will just add to my bloating.

[Jen1975]

10 hours ago, DKG said:

Hello Everyone,

So a year ago I woke up one night horribly bloated and in pain from cramping. It left me nauseous and unable to sleep and constipated. The nausea lasted for 2 months, I couldn't lay down to sleep because of nausea, I couldn't eat much either. Everything I ate made me bloated and constipated. Several visits to the ER and doctor, I finally got my referral for a GI specialist approved. By this time I had lost 30 lbs in 2 months and felt incredibly weak. After extensive testing, they determined I had gut hypersensitivity and celiac like symptoms but my celiacs gene wasn't active nor did my colon have damage from celiacs. Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs.

Over time, through trial and error I was finally able to start eating reasonably healthy food with supplements but I can't eat a lot anymore otherwise I get too bloated and I'm so uncomfortable all the time. Sometimes even normal food like eggplants or okra can get me burping for hours after eating. The only medicine I take now is miralax for the constipation. But I need to stop using it because it's not meant for longterm use. I was thinking of psyllium but since it has bulk forming properties that's just the opposite of what I want. Anyone had any experience with psyllium or similar situation to mine? I'm vegetarian and eating a lot of greens isn't gonna help if my meal size is small to begin with and greens don't provide a lot of calories. My normal meal is white rice,assorted veggies, and Ensure protein shake.

I hate that I can never tell what my body is gonna do. It makes it so hard to hang out with friends. And I'm still deciding whether to move for university or keep staying home. With my symptoms I'd be annoying any roommates I might have. 

Any suggestions/advice will help!

We’re you eating gluten when they tested you for Celiac disease? If you weren’t actively eating gluten then the test would come back negative 

[trents]

Good input from Jen1975. You would need to have been eating regular amounts of gluten (defined as two slices of wheat bread daily or the equivalent amount of gluten) before testing for 6-8 weeks for the antibody tests and for at least 2 weeks before the endoscopy/biopsy.

[DKG]

8 hours ago, Jen1975 said:

We’re you eating gluten when they tested you for Celiac disease? If you weren’t actively eating gluten then the test would come back negative 

Yes, I was eating gluten when they tested for Celiac. I did start the gluten free diet 10 days before the endoscopy/colonoscopy. I'm not sure of the turnover rate of the cells in the gut so I was thinking that may be why damage wasn't detected.

 

[trents]

7 minutes ago, DKG said:

Yes, I was eating gluten when they tested for Celiac. I did start the gluten free diet 10 days before the endoscopy/colonoscopy. I'm not sure of the turnover rate of the cells in the gut so I was thinking that may be why damage wasn't detected.

 

Well, 10 days is the better part of the two week pretest gluten challenge given as the guideline. So, it could have impacted the test I'm thinking. And I would guess that there is a pretty rapid cell turnover rate in the intestinal trac just because of the mechanical wear and tear of stool constantly moving through it if nothing else.

So you had both an endoscopy and a colonoscopy done? 

Did they do a biopsy of the small bowel lining and send it off to a lab for analysis? Villi damage cannot always be observed during the endoscopy itself. If the damage is severe and if the resolution of the scope is high and if the one doing the scoping is experienced it can show during the endoscopy but those things don't always come together at the same time in the same place.

[Blue-Sky]

Psyllium husks help with both IBS-D or IBS-C.  I suspect that psyllium husks get mixed in with everything else fairly quickly and that the fibers block leaky gut. 

Insoluble fiber promotes the growth of good bacteria in the gut and speeds things up lower down. Soluble fiber slows down digestion but may get broken down fairly quickly in the digestive track. Fiber in general probably helps with water balance in the gut. This might be because of properties of the fiber itself, or just because it blocks inflammation in general. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548066/#b46-ijmm-40-03-0607

https://journals.lww.com/ajg/Citation/2013/09000/Clinical_Data_Support_that_Psyllium_Is_Not.35.aspx

[DKG]

3 hours ago, trents said:

Well, 10 days is the better part of the two week pretest gluten challenge given as the guideline. So, it could have impacted the test I'm thinking. And I would guess that there is a pretty rapid cell turnover rate in the intestinal trac just because of the mechanical wear and tear of stool constantly moving through it if nothing else.

So you had both an endoscopy and a colonoscopy done? 

Did they do a biopsy of the small bowel lining and send it off to a lab for analysis? Villi damage cannot always be observed during the endoscopy itself. If the damage is severe and if the resolution of the scope is high and if the one doing the scoping is experienced it can show during the endoscopy but those things don't always come together at the same time in the same place.

Yes, I had both procedures done. The results were negative for all biopsies, esophagus, stomach, duodenum, ileum, colon. They found and removed 1 sessile serrated adenoma in the colon but that was it. 

[DKG]

26 minutes ago, Blue_Sky said:

Psyllium husks help with both IBS-D or IBS-C.  I suspect that psyllium husks get mixed in with everything else fairly quickly and that the fibers block leaky gut. 

Insoluble fiber promotes the growth of good bacteria in the gut and speeds things up lower down. Soluble fiber slows down digestion but may get broken down fairly quickly in the digestive track. Fiber in general probably helps with water balance in the gut. This might be because of properties of the fiber itself, or just because it blocks inflammation in general. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548066/#b46-ijmm-40-03-0607

https://journals.lww.com/ajg/Citation/2013/09000/Clinical_Data_Support_that_Psyllium_Is_Not.35.aspx

So psyllium husk should increase the transit time of the stools and promote regular bowel movement? I'm worried about the bulk forming property of psyllium. I don't want to get uncomfortably bloated. 

[Blue-Sky]

If you do decide take psyllium I would start with small amounts so that your body gets used to it. Also take it with water. I have read online that is is best to start out with small amounts of fiber mixed with water and then keep doing that for a week or so before you add more psyllium. It may take a while to get the right bacteria in the gut and for someones body to get used to it. 

 

 

[DKG]

43 minutes ago, Blue_Sky said:

If you do decide take psyllium I would start with small amounts so that your body gets used to it. Also take it with water. I have read online that is is best to start out with small amounts of fiber mixed with water and then keep doing that for a week or so before you add more psyllium. It may take a while to get the right bacteria in the gut and for someones body to get used to it. 

 

 

Guess I'll try and see how it works out. I might try to take some digestive enzymes too. Hopefully I won't get too bloated. 

[Russ H]

On 10/30/2021 at 2:09 AM, DKG said:

Guess I'll try and see how it works out. I might try to take some digestive enzymes too. Hopefully I won't get too bloated. 

When you say you get bloated, is it with gas? Does it make you burp? Do you get upper abdominal distention - just under the front of your rib cage? How about reflux?

[Scott Adams]

A word of caution regarding psyllium...be sure it says "gluten-free" on it, and most people use psyllium powder now, as it is easier to drink or add to a shake. I ordered some recently that did not have "gluten-free" on the package, only to test it for gluten using my Nima Sensor, and it tested positive for gluten. The cross-contamination likely happened at the mill.

[DKG]

1 hour ago, Russ314 said:

When you say you get bloated, is it with gas? Does it make you burp? Do you get upper abdominal distention - just under the front of your rib cage? How about reflux?

Hello,

I get bloated from gas. I burp way too much, many times for hours after meals. I haven't really paid attention to upper abdominal distension but I do get lower. Reflux is sometimes and doesn't really bother me. When I do get reflux I feel more of a burning in the lower abdominal region rather than upper. 

1 hour ago, Scott Adams said:

A word of caution regarding psyllium...be sure it says "gluten-free" on it, and most people use psyllium powder now, as it is easier to drink or add to a shake. I ordered some recently that did not have "gluten-free" on the package, only to test it for gluten using my Nima Sensor, and it tested positive for gluten. The cross-contamination likely happened at the mill.

Thank you! I'll take note of that!

[Russ H]

4 minutes ago, DKG said:

Hello,

I get bloated from gas. I burp way too much, many times for hours after meals. I haven't really paid attention to upper abdominal distension but I do get lower. Reflux is sometimes and doesn't really bother me. When I do get reflux I feel more of a burning in the lower abdominal region rather than upper. 

Thank you! I'll take note of that!

That is how I eventually narrowed down my problem. Bloating and burping is a symptom of fermentation in the small intestine, bacterial overgrowth where there should be few. This can be caused by a dysbiosis, leaky valves or coeliac disease. I used to burp for hours after every meal. When I went gluten free it took almost 3 months for the burping to resolve, and when it did it was fairly abrupt over 2 days. When I was eating gluten, my gut felt like it was raw from end to end. My reflux began to improve within a week of going gluten free and fully resolved when I stopped burping at 3 months.

Do you have milk intolerance? Mine disappeared after I went gluten free. Rice and pasta (gluten free) used to make me burp, but don't now. I am mainly vegetarian but eat fish, eggs and cheese as these are nutrient rich and historically have not exacerbated my symptoms. I regularly eat fermented foods as this is supposed to help improve the gut microbiome.

 

[DKG]

On 11/1/2021 at 1:03 PM, Russ314 said:

That is how I eventually narrowed down my problem. Bloating and burping is a symptom of fermentation in the small intestine, bacterial overgrowth where there should be few. This can be caused by a dysbiosis, leaky valves or coeliac disease. I used to burp for hours after every meal. When I went gluten free it took almost 3 months for the burping to resolve, and when it did it was fairly abrupt over 2 days. When I was eating gluten, my gut felt like it was raw from end to end. My reflux began to improve within a week of going gluten free and fully resolved when I stopped burping at 3 months.

Do you have milk intolerance? Mine disappeared after I went gluten free. Rice and pasta (gluten free) used to make me burp, but don't now. I am mainly vegetarian but eat fish, eggs and cheese as these are nutrient rich and historically have not exacerbated my symptoms. I regularly eat fermented foods as this is supposed to help improve the gut microbiome.

 

Interesting! I got tested for SIBO too but it was normal. I just avoid processed food and eat mostly homecooked. It helped. I just started using metamucil 4 in1 and digestive enzymes supplement, and I have noticed a decrease in the burping. I take a bit of metamucil after every meal and the enzymes morning and evening. 

Initially milk did make me burp a lot so I have been avoiding it. I'll try drinking milk again since the enzymes will definitely help.

[Berta1]

Hi, your symptoms sound very similar to mine and part of what they found with me was Gastroparesis, IBS mostly C sometimes D, severe Gluten Intolerance and once I had the gallbladder removed Bile Reflux. Triphala really helps with the bile reflux, I am prescribed Creon 24,000 enzymes prior to all meals and snacks (for Pancreatic Insufficiency) & Gliadin that’s advertised on this site has been phenomenal to be able to eat the occasional gluten or taken as a precaution when eating out. Pre and Probiotics are a necessity.  Lastly, Mayo Clinic has had me take Swiss Kriss, I use the pills, for the constipation. The Triphala helps that too. Swiss Kriss IF you use the pills I’d recommend cutting into quarters and start a quarter in the morning and one before bedtime. Once you tolerate that and if you think you need more then add more to your routine. They’re completely natural but can cause severe diarrhea if not taken in moderation.  Good luck to you & all the great souls on here ❤️

[Linda Hannibal]

On 10/28/2021 at 8:05 PM, DKG said:

Hello Everyone,

So a year ago I woke up one night horribly bloated and in pain from cramping. It left me nauseous and unable to sleep and constipated. The nausea lasted for 2 months, I couldn't lay down to sleep because of nausea, I couldn't eat much either. Everything I ate made me bloated and constipated. Several visits to the ER and doctor, I finally got my referral for a GI specialist approved. By this time I had lost 30 lbs in 2 months and felt incredibly weak. After extensive testing, they determined I had gut hypersensitivity and celiac like symptoms but my celiacs gene wasn't active nor did my colon have damage from celiacs. Apparently I had normal IgA levels but high IgG levels. They said it's another way to diagnose celiacs.

Over time, through trial and error I was finally able to start eating reasonably healthy food with supplements but I can't eat a lot anymore otherwise I get too bloated and I'm so uncomfortable all the time. Sometimes even normal food like eggplants or okra can get me burping for hours after eating. The only medicine I take now is miralax for the constipation. But I need to stop using it because it's not meant for longterm use. I was thinking of psyllium but since it has bulk forming properties that's just the opposite of what I want. Anyone had any experience with psyllium or similar situation to mine? I'm vegetarian and eating a lot of greens isn't gonna help if my meal size is small to begin with and greens don't provide a lot of calories. My normal meal is white rice,assorted veggies, and Ensure protein shake.

I hate that I can never tell what my body is gonna do. It makes it so hard to hang out with friends. And I'm still deciding whether to move for university or keep staying home. With my symptoms I'd be annoying any roommates I might have. 

Any suggestions/advice will help!

Try the elimination diet I was diagnosed with Celiacs 2015 but something else was also upsetting my stomach. Soy is my nemesis and causes me to bloat, have stomach upset and diarrhea. I met another person who had an issue with histamine in foods. There are different minds of IBD to consider. Hope you feel better