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Can celiac come on suddenly?


Orshi

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Orshi Rookie

Hi,

I was wondering if experiences like mine exist.

Apologies for the TMI. For a few months now I have started burping these weird airy burps, that aren't connected to any eating and drinking.

Then a week ago I woke up with extreme unrelenting nausea. I could hardly eat. They are chalking it up to either high stomach acid or anxiety, or both. But i know that's not what I feel like when I have acid problems. Also I've been really bloated.

I thought about checking 23&me for markers and I guess I have one of the genetic markers for celiac disease. I know it's not a given that I'll get it, but I just wonder.

Today I'm on day 3 without eating gluten and I feel like maybe I'm slightly less bloated. 

Anyone out there who had a sudden onset illness? 

Also, I'm 38.


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trents Grand Master

Welcome to the forum, Orshi!

You say, "I thought about checking 23&me for markers and I guess I have one of the genetic markers for celiac disease." Are you saying you have not yet checked with 23&me but your best guess is that you do have at least one celiac genetic marker? The way you phrased it makes it difficult to decide if you do have a marker or just guessing you do.

Your GI distress could also be caused by SIBO (Small Intestine Bacterial Overgrowth).

If you do decide to get tested for celiac disease you will need to go back to eating regular amounts of gluten for 6-8 weeks or the tests won't be valid.

Orshi Rookie
2 minutes ago, trents said:

Welcome to the forum, Orshi!

You say, "I thought about checking 23&me for markers and I guess I have one of the genetic markers for celiac disease." Are you saying you have not yet checked with 23&me but your best guess is that you do have at least one celiac genetic marker? The way you phrased it makes it difficult to decide if you do have a marker or just guessing you do.

Your GI distress could also be caused by SIBO (Small Intestine Bacterial Overgrowth).

If you do decide to get tested for celiac disease you will need to go back to eating regular amounts of gluten for 6-8 weeks or the tests won't be valid.

Hi! 

Thank you for your reply!

Sorry about the confusion. Yes, I do have one of the genetic markers for celiac disease.

I have had my 23&me for probably a decade now but I have been bad at checking everything they send me because there's a lot like "you likely have curly hair and might not like broccoli", and I got bored with it after a while.

But after this week's episode I went in there to check and sure enough, that's what I found.

I understand about the tests but right now Im just giving it a shot because we will be traveling, starting next week, until early October and I just need to get better. So Im just throwing this at the wall and see if it sticks.

 

 

Jody Lukasik Newbie
1 hour ago, Orshi said:

Hi,

I was wondering if experiences like mine exist.

Apologies for the TMI. For a few months now I have started burping these weird airy burps, that aren't connected to any eating and drinking.

Then a week ago I woke up with extreme unrelenting nausea. I could hardly eat. They are chalking it up to either high stomach acid or anxiety, or both. But i know that's not what I feel like when I have acid problems. Also I've been really bloated.

I thought about checking 23&me for markers and I guess I have one of the genetic markers for celiac disease. I know it's not a given that I'll get it, but I just wonder.

Today I'm on day 3 without eating gluten and I feel like maybe I'm slightly less bloated. 

Anyone out there who had a sudden onset illness? 

Also, I'm 38.

I'm so sorry for your suffering, it is so hard to go through when you don't feel well allll the time.  Eating is what we do to live, we nourish our bodies with every bite and when every bite we take makes us sick, it can become hard to deal with fast, not just physically but emotionally.  

I would suggest reading up on as much as you can with the symptoms you have and use the internet to your advantage while making the appointments you need with your doctors.  I would think a Gastroenterologist would be where you would want to end up, but your primary doctor may have different suggestions after a full work up and closer look at symptoms you may not even be aware of, ie., blood work, vital signs, etc.  

I suffered my whole life till 40 years old terribly with gluten issues, with over $100k in copays, more doctors visits than you could ever imagine, more meds than most 80 years old all through my 20's and 30's, and doctors kept telling me it wasn't gluten, even though I told them my mother was gluten intolerant. My organs even started shutting down, then I tried a gluten free diet and then my life changed for about a year and I felt much better.  I was symptom free as long as I was at home. 

I found that whenever I went out and especially when I went to work I would start with some symptoms, but they never returned like they did unless I accidentally had a food with gluten in it, which only happened a couple times in the last 2 years.  Then I found out that the reason that when I went out I would get sick is because the toilet paper, paper towels and paper plates I would use have gluten in them. Who freaking knew, my mom has been gluten free for 10 years and never knew this. 

As I said previously, my life changed for about a year after going gluten free, and then everything changed when I got covid.  I have had chest pain since I had covid in 2020 and it's been getting worse because now when someone else eats gluten around me, I get real sick, with shortness of breath, chest pain, hives head to toe, inside my ears in my throat in my eye lids, tingling in my extremities, ringing in my ears, my nose just closes up.  It's terrible at work being around other people brining in their food.  So an answer to your question, if it can come on suddenly, YES, it can.  Especially if you have had covid or more particularly the covid shot.  There's a documentary out on the covid shot and it explains how it can change your chemistry.

I pray you can get this figured out and find a way to treat it if not get rid of it entirely.  Have a blessed day.

plumbago Experienced
1 minute ago, Jody Lukasik said:

There's a documentary out on the covid shot and it explains how it can change your chemistry.

Hi,

I am a moderator on this site, and I approved your comment, but I wanted to say that the Covid vaccine does not "change your chemistry." I am not sure what you mean by that comment and may turn readers off of the vaccine - I hope not, but to my eyes at least it does border on misinformation.

Plumbago

Orshi Rookie
2 hours ago, Jody Lukasik said:

I'm so sorry for your suffering, it is so hard to go through when you don't feel well allll the time.  Eating is what we do to live, we nourish our bodies with every bite and when every bite we take makes us sick, it can become hard to deal with fast, not just physically but emotionally.  

I would suggest reading up on as much as you can with the symptoms you have and use the internet to your advantage while making the appointments you need with your doctors.  I would think a Gastroenterologist would be where you would want to end up, but your primary doctor may have different suggestions after a full work up and closer look at symptoms you may not even be aware of, ie., blood work, vital signs, etc.  

I suffered my whole life till 40 years old terribly with gluten issues, with over $100k in copays, more doctors visits than you could ever imagine, more meds than most 80 years old all through my 20's and 30's, and doctors kept telling me it wasn't gluten, even though I told them my mother was gluten intolerant. My organs even started shutting down, then I tried a gluten free diet and then my life changed for about a year and I felt much better.  I was symptom free as long as I was at home. 

I found that whenever I went out and especially when I went to work I would start with some symptoms, but they never returned like they did unless I accidentally had a food with gluten in it, which only happened a couple times in the last 2 years.  Then I found out that the reason that when I went out I would get sick is because the toilet paper, paper towels and paper plates I would use have gluten in them. Who freaking knew, my mom has been gluten free for 10 years and never knew this. 

As I said previously, my life changed for about a year after going gluten free, and then everything changed when I got covid.  I have had chest pain since I had covid in 2020 and it's been getting worse because now when someone else eats gluten around me, I get real sick, with shortness of breath, chest pain, hives head to toe, inside my ears in my throat in my eye lids, tingling in my extremities, ringing in my ears, my nose just closes up.  It's terrible at work being around other people brining in their food.  So an answer to your question, if it can come on suddenly, YES, it can.  Especially if you have had covid or more particularly the covid shot.  There's a documentary out on the covid shot and it explains how it can change your chemistry.

I pray you can get this figured out and find a way to treat it if not get rid of it entirely.  Have a blessed day.

Thank you for your message! I for now will skip gluten, see what happens. It's been 2 days and I feel slightly better, less nausea and bloating. I know it's not necessarily "it", but I'm going to do it for a while because I won't be able to see the gastroenterologist until October. 

I received 3 Covid vaccines and also had Covid, but the timeline doesn't line up with this particular problem.

Thank you for your message,

Orshi

 

 

notme Experienced

@Judy Lukasik - which brands of toilet paper, paper towels and paper plates have gluten in them??


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ShaunaTX Rookie
5 hours ago, Orshi said:

Hi,

I was wondering if experiences like mine exist.

Apologies for the TMI. For a few months now I have started burping these weird airy burps, that aren't connected to any eating and drinking.

Then a week ago I woke up with extreme unrelenting nausea. I could hardly eat. They are chalking it up to either high stomach acid or anxiety, or both. But i know that's not what I feel like when I have acid problems. Also I've been really bloated.

I thought about checking 23&me for markers and I guess I have one of the genetic markers for celiac disease. I know it's not a given that I'll get it, but I just wonder.

Today I'm on day 3 without eating gluten and I feel like maybe I'm slightly less bloated. 

Anyone out there who had a sudden onset illness? 

Also, I'm 38.


 

I had some bloating after eating foods for years and chalked it up to a sensitivity to a food but it never bothered me enough to take a deep dive into the cause. I also have Hashimoto’s and for over 20 years kept having to change my dose of meds every 4-6 months until I had a functional medicine doctor suggest me having gluten intolerance and try a gluten free diet. So I did and my thyroid medication dose had only been changed a few times in the past 6 years. I also have a marker for celiac found on 23&me. Three years ago I had an EGD with biopsy and my GI doctor asked if I have ever been tested for celiac as there were signs of celiac disease. I told him I was sensitive and we went with that. Since I really don’t have symptoms I was cheating about once a year when I went on vacation. But since I haven’t been on vacation in over 2 years I haven’t cheated. I had another EGD with biopsy last October and my GI doctor said without a doubt I have celiac disease.. I told him I’ve been strict gluten-free for over 2 years but he said I must be getting CC somewhere.  :(   I was 35 when I had my first EGD and 38 when I was diagnosed with celiac disease. So one I’ve always had celiac disease but never knew it since I’m more of a “silent celiac,” or since I had a gene and higher risk for celiac disease with already having 2 other autoimmune problems and am ANA positive, I had just the right conditions trigger my celiac disease. Since all diseases require the perfect situation to be created… 
Too bad we can’t find a way to turn it off just as it is turned on.

Not sure if that helps at all… 

Good luck! 

Posterboy Mentor
5 hours ago, Orshi said:

Apologies for the TMI. For a few months now I have started burping these weird airy burps, that aren't connected to any eating and drinking.

Then a week ago I woke up with extreme unrelenting nausea. I could hardly eat. They are chalking it up to either high stomach acid or anxiety, or both. But i know that's not what I feel like when I have acid problems. Also I've been really bloated.

Orshi et Al,

You might have an ulcer?

It is probably actually from "Too Low Stomach Acid"......instead of high stomach acid instead.

A lot of stress in life can trigger low stomach acid and Heartburn.

See this research about it entitled "The effect of life stress on symptoms of heartburn"

https://pubmed.ncbi.nlm.nih.gov/15184707/

quoting from the abstract

"Results: The presence of a severe, sustained life stress during the previous 6 months significantly predicted increased heartburn symptoms during the following 4 months."

And "Conclusions: As with other chronic conditions such as irritable bowel syndrome (IBS), heartburn severity appears to be most responsive to major life events" IE shock and trauma in ones life.

This because we burn a lot of  energy when we have a trauma in life.....depleting our ability to make stomach acid and......heartburn often ucler's develop there after....because the production of Stomach acid is an energy intensive activity.....low stomach acid develops after our stressor's make us low in our ability to make enough energy to produce stomach acid.

HHMI hash done good quality research on this topic....

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

You can test your stomach acid levels by trying the home "Baking Soda Test" to see if your stomach acid is really too low instead...

https://drjockers.com/5-ways-test-stomach-acid-levels/

I wrote a blog post that might be of help to you....that summarizes some of these connections in more detail..

this is a nice article series that explains how Low stomach acid is often being diagnosed as high stomach acid instead...

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

And would probably help you to read it...

First comes the STRESS then we get maimed!.....everybody knows stress kills us but it maims us first! ......IE life gives us heartburn etc....

I hope this is helpful but it is not medical advice.

Good luck on your continued journey!

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the grace of God,

Orshi Rookie
1 hour ago, Posterboy said:

Orshi et Al,

You might have an ulcer?

It is probably actually from "Too Low Stomach Acid"......instead of high stomach acid instead.

A lot of stress in life can trigger low stomach acid and Heartburn.

See this research about it entitled "The effect of life stress on symptoms of heartburn"

https://pubmed.ncbi.nlm.nih.gov/15184707/

quoting from the abstract

"Results: The presence of a severe, sustained life stress during the previous 6 months significantly predicted increased heartburn symptoms during the following 4 months."

And "Conclusions: As with other chronic conditions such as irritable bowel syndrome (IBS), heartburn severity appears to be most responsive to major life events" IE shock and trauma in ones life.

This because we burn a lot of  energy when we have a trauma in life.....depleting our ability to make stomach acid and......heartburn often ucler's develop there after....because the production of Stomach acid is an energy intensive activity.....low stomach acid develops after our stressor's make us low in our ability to make enough energy to produce stomach acid.

HHMI hash done good quality research on this topic....

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

You can test your stomach acid levels by trying the home "Baking Soda Test" to see if your stomach acid is really too low instead...

https://drjockers.com/5-ways-test-stomach-acid-levels/

I wrote a blog post that might be of help to you....that summarizes some of these connections in more detail..

this is a nice article series that explains how Low stomach acid is often being diagnosed as high stomach acid instead...

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

And would probably help you to read it...

First comes the STRESS then we get maimed!.....everybody knows stress kills us but it maims us first! ......IE life gives us heartburn etc....

I hope this is helpful but it is not medical advice.

Good luck on your continued journey!

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the grace of God,

Hi there,

Thank you for the informative reply! I definitely have to reduce stress in my life. I may have an ulcer but I won't know that until I get an endoscopy and if I'm lucky I can get one later this month, but more likely it will be in October. So I am trying to change my diet and manage my anxiety better to make it until then! 

Best,

Orshi

 

 

Orshi Rookie
1 hour ago, ShaunaTX said:


 

I had some bloating after eating foods for years and chalked it up to a sensitivity to a food but it never bothered me enough to take a deep dive into the cause. I also have Hashimoto’s and for over 20 years kept having to change my dose of meds every 4-6 months until I had a functional medicine doctor suggest me having gluten intolerance and try a gluten free diet. So I did and my thyroid medication dose had only been changed a few times in the past 6 years. I also have a marker for celiac found on 23&me. Three years ago I had an EGD with biopsy and my GI doctor asked if I have ever been tested for celiac as there were signs of celiac disease. I told him I was sensitive and we went with that. Since I really don’t have symptoms I was cheating about once a year when I went on vacation. But since I haven’t been on vacation in over 2 years I haven’t cheated. I had another EGD with biopsy last October and my GI doctor said without a doubt I have celiac disease.. I told him I’ve been strict gluten-free for over 2 years but he said I must be getting CC somewhere.  :(   I was 35 when I had my first EGD and 38 when I was diagnosed with celiac disease. So one I’ve always had celiac disease but never knew it since I’m more of a “silent celiac,” or since I had a gene and higher risk for celiac disease with already having 2 other autoimmune problems and am ANA positive, I had just the right conditions trigger my celiac disease. Since all diseases require the perfect situation to be created… 
Too bad we can’t find a way to turn it off just as it is turned on.

Not sure if that helps at all… 

Good luck! 

Thank you that is very interesting. I also have only been experiencing the bloating and then the nausea kicked in, but it came on quite literally overnight (I'm not pregnant). I was surprised to see the genetic marker and thought, why not try it for a few weeks, it's not a big deal. 

trents Grand Master
7 minutes ago, Orshi said:

Thank you that is very interesting. I also have only been experiencing the bloating and then the nausea kicked in, but it came on quite literally overnight (I'm not pregnant). I was surprised to see the genetic marker and thought, why not try it for a few weeks, it's not a big deal. 

Which genetic marker do you have?

Orshi Rookie
3 hours ago, trents said:

Which genetic marker do you have?

The HLA-DQB1 gene.

plumbago Experienced

I find the comments about Covid vaccination disturbing and disappointing. Science is not about feeling or belief or persuasion.

I work as a nurse, and there is simply no comparison between pre-vaccine times and post. The difference is life and death, and I thank goodness for the vaccines every day. And though it’s a pain, I know my mask helps me keep working, and I am not overworking other staff by getting infected and having to isolate. Masks and vaccinations work.

Stephen Malthouse apparently issued fake vaccination and masking exemptions. Unsurprisingly, he thinks masks are useless.

He reminds me of US-based Peter McCullough MD, a known mask skeptic and Covid-vax denier who spread misinformation and promoted treatments that have either been proven to not work or are untested. McCullough is a crank who is angry about something and wants to spread his negativity around. He’s had a restraining order against him filed by a hospital system he claims he is still a part of (but is not). Talk about the “system” or “elites” or “intellectuals” or “narratives” all you want, I thank goodness science is science. But, I worry a lot that people try to use this forum to seed anti-vax, anti-science sentiment, which is part of a larger anti-government platform in general, and that’s all they care about. I want no part of these kinds of efforts; purveyors of misinformation are truly the ones who are the slick masters of getting people to come back again and again to their message.

trents Grand Master
(edited)

Yes, I agree that science is not about feeling or belief or persuasion. That's why I'm open to the science that is contrary to the establishment's narrative which in reality contradicts the actual scientific data at many points. There are many medical professionals and scientists who have arrived at the same conclusion, renowned neurosurgeon, Dr. Ben Carson, being one of them: https://www.newsmax.com/newsmax-tv/ben-carson-cdc-nih/2022/08/13/id/1082955/

Edited by trents
cristiana Veteran
4 hours ago, plumbago said:

 

I work as a nurse, and there is simply no comparison between pre-vaccine times and post. The difference is life and death, and I thank goodness for the vaccines every day. And though it’s a pain, I know my mask helps me keep working, and I am not overworking other staff by getting infected and having to isolate. Masks and vaccinations work.

 

I couldn't agree more.

I've just lost a dear friend  in her 50s who was struck down with Covid in pre-vaccination times, and this led to long Covid, and ultimately all sorts of terrible complications as a result.  I have a neighbour in his early 30s with scarred lungs who will never be the same because he got Covid at the same time.   It was a terrible time, both would have dearly loved there to have been a vaccine to have limited the effects of the virus when they caught it.  Masks and vaccinations do work. 

Orshi Rookie
7 hours ago, plumbago said:

I find the comments about Covid vaccination disturbing and disappointing. Science is not about feeling or belief or persuasion.

I work as a nurse, and there is simply no comparison between pre-vaccine times and post. The difference is life and death, and I thank goodness for the vaccines every day. And though it’s a pain, I know my mask helps me keep working, and I am not overworking other staff by getting infected and having to isolate. Masks and vaccinations work.

Stephen Malthouse apparently issued fake vaccination and masking exemptions. Unsurprisingly, he thinks masks are useless.

He reminds me of US-based Peter McCullough MD, a known mask skeptic and Covid-vax denier who spread misinformation and promoted treatments that have either been proven to not work or are untested. McCullough is a crank who is angry about something and wants to spread his negativity around. He’s had a restraining order against him filed by a hospital system he claims he is still a part of (but is not). Talk about the “system” or “elites” or “intellectuals” or “narratives” all you want, I thank goodness science is science. But, I worry a lot that people try to use this forum to seed anti-vax, anti-science sentiment, which is part of a larger anti-government platform in general, and that’s all they care about. I want no part of these kinds of efforts; purveyors of misinformation are truly the ones who are the slick masters of getting people to come back again and again to their message.

Oh yah I didn't want to get into that part because it seemed irrelevant to me, since I don't share those worries he had about vaccinations and his reply was otherwise polite. We're triple vaxxed.

I don't think you can change anybody's mind on a forum like this and I came here because I have pretty bad stomach problems right now, which I almost solely attribute to stress. A big part of that stress is the circumstances of Covid (so in a way he's right, Covid might have caused my problem, just not in a way he thinks), and honestly I am just not going argue with people anymore. Everyone chooses their own reality these days and lives inside of that, regardless of what's actually happening. So I was trying to be respectful towards him because otherwise he didn't sound malicious and if we can be at least civil with one another that's a good step forward. That's why I didn't even want to start a vaccine discussion.

plumbago Experienced

Thanks for your perspective @Orshi.

As a moderator, I care how this site is used, and worry that people will create accounts just to seed statements like hers (or his) (Jody's) earlier. As a nurse, I find it critically important to call out misinformation when and where it occurs.

Scott Adams Grand Master
13 hours ago, trents said:

Yes, I agree that science is not about feeling or belief or persuasion. That's why I'm open to the science that is contrary to the establishment's narrative which in reality contradicts the actual scientific data at many points. There are many medical professionals and scientists who have arrived at the same conclusion, renowned neurosurgeon, Dr. Ben Carson, being one of them: https://www.newsmax.com/newsmax-tv/ben-carson-cdc-nih/2022/08/13/id/1082955/

Dr. Ben Carson is not an immunologist, infectious disease doctor, or vaccine expert, but this is not the place to debate vaccines. There is little doubt that America, out of all the wealthy 1st world countries, has suffered more death from covid than any other comparable country, primarily due misinformation around masks and vaccines, and I will not allow bad information on this topic to be spread here (warning).

RMJ Mentor
14 hours ago, trents said:

Yes, I agree that science is not about feeling or belief or persuasion. That's why I'm open to the science that is contrary to the establishment's narrative which in reality contradicts the actual scientific data at many points. There are many medical professionals and scientists who have arrived at the same conclusion, renowned neurosurgeon, Dr. Ben Carson, being one of them: https://www.newsmax.com/newsmax-tv/ben-carson-cdc-nih/2022/08/13/id/1082955/

I’m open to science that is contrary to the establishment’s narrative IF it is published in a reputable, peer-reviewed journal and replicated by other scientists who also publish in peer-reviewed journals.

ShaunaTX Rookie
20 hours ago, trents said:

Yes, I agree that science is not about feeling or belief or persuasion. That's why I'm open to the science that is contrary to the establishment's narrative which in reality contradicts the actual scientific data at many points. There are many medical professionals and scientists who have arrived at the same conclusion, renowned neurosurgeon, Dr. Ben Carson, being one of them: https://www.newsmax.com/newsmax-tv/ben-carson-cdc-nih/2022/08/13/id/1082955/

I’m not one to pick at someone because of their opinions; we all have the right to our own. What I don’t agree with is the spread of incorrect information and bad references. My degrees and profession are highly dependent upon evidence-based practice… meaning there is a lot of research to back up the guidelines we use to diagnose and treat patients. When a website such as the one you referenced has other stories such as ear wax causing memory loss and hearing loss, it’s hard to take seriously and would not be considered a good resource. Cerumen impaction can cause temporary conductive hearing loss until the impaction is removed. Cerumen is a natural defense mechanism so for it to cause memory loss is quite far-fetched. I would also agree with others in disagreeing with your post providing incorrect information on the Covid vaccination. Again, I not against opinions as long as there are reliable resources to back the information up. 

 

ShaunaTX Rookie
On 8/13/2022 at 7:25 PM, Orshi said:

Thank you that is very interesting. I also have only been experiencing the bloating and then the nausea kicked in, but it came on quite literally overnight (I'm not pregnant). I was surprised to see the genetic marker and thought, why not try it for a few weeks, it's not a big deal. 

Orshi, 

 Of course we all have our suggestions on this forum, your symptoms can be many different things: celiac disease, imbalance of gut microbiota, a gastric ulcer, among others. The problem is many allopathic providers don’t believe in the imbalance of gut microbes and other alternative diagnoses so it’s hard to find a provider that will test for it. celiac disease and ulcers can easily be diagnosed by EGD but it may not be the first line intervention a provider picks. They may try you on a PPI like omeprazole for a couple months before going with a more invasive, costly diagnostic test. Or they may check your breath or stool for H. pylori bacteria (major cause of ulcers especially in certain populations), before starting on the PPI. Alternative providers may try you on a prebiotic and probiotic for a few months. A gluten free diet may take a few weeks to know if it’s helping or not, and a gluten free diet is not ideal for someone if they don’t need to be on one… especially if one doesn’t eat the healthiest of the gluten free options, there’s a lot more cholesterol and some lack of needed nutrients in a gluten-free diet if one does not find alternative ways to obtain these nutrients. BUT people with celiac disease can’t absorb nutrients as others if not on a gluten-free diet leading to vitamin D, B12 and other deficiencies or possibly iron deficiency anemia. Sadly, there are many people walking around with celiac disease that don’t even know it because they don’t have the “typical celiac disease symptoms that people think of.” Additionally, people on a gluten free diet have a higher risk of nonalcoholic fatty liver disease. So I recommend doing your research with reliable resources and speaking with a provider before making any long-term INFORMED decision for yourself. Look at the benefits and risks for each treatment too. 

Orshi Rookie
1 hour ago, ShaunaTX said:

Orshi, 

 Of course we all have our suggestions on this forum, your symptoms can be many different things: celiac disease, imbalance of gut microbiota, a gastric ulcer, among others. The problem is many allopathic providers don’t believe in the imbalance of gut microbes and other alternative diagnoses so it’s hard to find a provider that will test for it. celiac disease and ulcers can easily be diagnosed by EGD but it may not be the first line intervention a provider picks. They may try you on a PPI like omeprazole for a couple months before going with a more invasive, costly diagnostic test. Or they may check your breath or stool for H. pylori bacteria (major cause of ulcers especially in certain populations), before starting on the PPI. Alternative providers may try you on a prebiotic and probiotic for a few months. A gluten free diet may take a few weeks to know if it’s helping or not, and a gluten free diet is not ideal for someone if they don’t need to be on one… especially if one doesn’t eat the healthiest of the gluten free options, there’s a lot more cholesterol and some lack of needed nutrients in a gluten-free diet if one does not find alternative ways to obtain these nutrients. BUT people with celiac disease can’t absorb nutrients as others if not on a gluten-free diet leading to vitamin D, B12 and other deficiencies or possibly iron deficiency anemia. Sadly, there are many people walking around with celiac disease that don’t even know it because they don’t have the “typical celiac disease symptoms that people think of.” Additionally, people on a gluten free diet have a higher risk of nonalcoholic fatty liver disease. So I recommend doing your research with reliable resources and speaking with a provider before making any long-term INFORMED decision for yourself. Look at the benefits and risks for each treatment too. 

Thank you so much. Yes they have me on the antacids now for 2 weeks. I'm going to push for endoscopy after. We'll see where we get. Thank you for your in-depth reply.

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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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