Can celiac suddenly 'occur'?

[sezza61]

Hey there, I'm new! I've spent quite some time on this site reading up and thought I'd ask the experts.

In end of November I started experiencing symptoms (toilet and gas focus) which in January really started escalating enough to send me to the doctor. I explained my symptoms and got a blood test and results about 10 days ago. My 'Deamidated Gliadin IgA was high at 31 U/mL (normal being <15) while the other results were all normal. Doc told me to go to GI for endoscopy, although stated this isn't a 'huge' increase. Meanwhile my symptoms started escalating to the occasional vomit, massive fatigue and feeling like I would collapse while walking to work. I'm reading a lot about this now (though still don't feel knowledgeable at all), and I'm wondering 1) does this number give any indication of celiac as a stand alone?  No family history. 2) Is it possible that if it could be celiac, that it can happen so quickly?  It just seems to be so sudden so I'm quite confused. 

I'm seeing the GI next week for next steps. It's just been a tough couple of weeks and I don't seem to get much help from the GP. Any tips would be appreciated! 

[Ennis-TX]

For me most my life I had tale tale symptoms, and stuff was happening for so long I considered many things to be "Normal" I did something stupid in my early 20s that shocked my immune system and made my symptoms change to things much more noticeable as puking, worsened fatigue, gut pain so bad I sometimes could not leave the bed, random bouts of extreme confusion where my mind would just start looping leading to anger and violent outburts, constipation lasting over a week,...Everyone is different symptom wise with this disease and it shows in various ways always changing. Shocks to the immune system can sometimes cause changes or even bring a dormant gene for the disease out and make it suddenly just appear.

For now just keep eating gluten daily so your test will be accurate, get the testing done and go from there. Just incase might consider doing your food bucketlist of stuff you will have to stop eating now if you come back positive.

Fatigue can be addressed by figuring out the cause, many cases it is related to a nutrient deficiency in combination with your body fighting something. Look into perhaps B-Vitamin supplements like Liquid Health Stress & Energy and a magnesium is another common on, a glycinate like doctors best if you have a bowel movement daily. If you have hard stools, or constipation look like Natural Vitality Calm and dose small 1/4tsp at first and work up to full dose or you get loose stools then back down the dose.

[cyclinglady]

6 hours ago, sezza61 said:

Hey there, I'm new! I've spent quite some time on this site reading up and thought I'd ask the experts.

In end of November I started experiencing symptoms (toilet and gas focus) which in January really started escalating enough to send me to the doctor. I explained my symptoms and got a blood test and results about 10 days ago. My 'Deamidated Gliadin IgA was high at 31 U/mL (normal being <15) while the other results were all normal. Doc told me to go to GI for endoscopy, although stated this isn't a 'huge' increase. Meanwhile my symptoms started escalating to the occasional vomit, massive fatigue and feeling like I would collapse while walking to work. I'm reading a lot about this now (though still don't feel knowledgeable at all), and I'm wondering 1) does this number give any indication of celiac as a stand alone?  No family history. 2) Is it possible that if it could be celiac, that it can happen so quickly?  It just seems to be so sudden so I'm quite confused. 

I'm seeing the GI next week for next steps. It's just been a tough couple of weeks and I don't seem to get much help from the GP. Any tips would be appreciated! 

Keep eating gluten until  you see your GI or your test results (biopsies via endoscopy) may be inconclusive.  Consider taking this time to bid a fond farewell to some of your gluten favorites.  That is what I did.  I just had anemia when my doctor suggested celiac disease testing.  I waited seven weeks for my endoscopy due to work constraints.  By the end of seven weeks (and a loaf of sourdough bread a day — I kid you not!), I knew in my head and gut that gluten was making me sick.   You really only have to eat a slice of bread or two a day (or equivalent).  Sometimes a few crackers are enough, but I lean (like the University of Chicago) towards a more conservative amount because the goal is to insure a firm diagnosis.  

The DGP IgA?  Yep, mine was elevated like yours.  All other tests on my celiac panel were negative, even in follow-up testing.  The TTG is good, but does not catch all celiacs (most doctors do not know this fact).   My biopsies revealed moderate to severe damage.  So, just because your number is not “off the charts”, it does not correlate necessarily with the amount of intestinal damage.  I had no family history.  I am the first diagnosed celiac.  Finally, celiac disease is like a chameleon, symptoms can change or ebb and flow.   It is why testing is necessary as so many symptoms overlap with other illnesses.  

Worried about not eating gluten for the rest of your life?  Don’t be.  There is a gluten-free (gluten free) substitute for everything.  

Welcome!  

[sezza61]

Thanks so much @Ennis_TX and @cyclinglady, really appreciate your responses. I'll put together a binge gluten bucket list and see how I go  

[David Stockman]

As Ennis had said, I had telltale signs got sick from eating different foods, which looking back they all were gluten foods, but I thought everyone had these problems eating them that's just the way it was....my doctors told me they didn't know what was causing my GI problems, and had basically said that it was in my head and nothing wrong, years later I became so ill that I couldn't function in a normal way, fatigue,  nerve pain, bloat , constipation, my body started to shut down, was told I was terminal w/ 6 months to live if that. I left the hospital to never return, I did my own research and diagnosed myself,  went to my GI doctor and told him what I thought and I wanted to be tested for Celiac,  he asked about my diet, I told him that I hadn't consumed gluten since had diagnosed myself 6 months earlier ....he laughed and said I needed to start eating gluten for the test to be acurate, I told him that there was NO way I would, he said the test would be negative and it would be a waste of his time. I said to him to prove me wrong, he agreed... test was an absolute positive.....he didn't know what to say, he looked quite embarrassed,  he wanted me to do a whole bunch of other test as he thought this was a false positive I refused and told him I no longer would need him or any other doctors ......this was 6 years ago, take the gluten free challenge.....it's a lot less painful and harmless to your body. I am now 100+ lbs lighter, lost 20" in waist, my body is still healing, I honestly think if I had done the gluten challenge to appease him I would be dead.

Bottom line you know your body better than ANYONE , listen to it.

Edited February 7, 2018 by David Stockman
Typo

[Juca]

I also felt the disease came suddenly. I was already in my 30s. I guess you need the right constelation of factor to allign and make you vulnerable enough for it to manifest itself. This seems to match the views of Dr. Alessio Fasano, a very respected specialist in celiac disease (check out some of his interviews on youtube). 

In my case, I had moved to a different country, where I started to eat more wheat and where my sun exposure was much lower (low vit.D, low immunity). This lead to multiple URT infections, for which I was always prescribed antibiotics. The antibiotics devastated my microbiome and made me even more vulnerable. The tipping point was a stomach flu, a bad one. By then my insides must have been leakier than a colander. I never was the same again. 

Two years after that stomach flu and a lot of complaining I was finally tested and diagnosed. 

 

 

[Scp]

Is this thread still open? I have a lot of questions and nowhere to really turn because doctors seem to be very useless nowadays

[trents]

1 hour ago, Scp said:

Is this thread still open? I have a lot of questions and nowhere to really turn because doctors seem to be very useless nowadays

Yes, the thread is still open. Let's here your questions.

[Scp]

3 hours ago, trents said:

Yes, the thread is still open. Let's here your questions.

Ok great,

I do have a lot of questions but the main thing I’m curious about is celiac symptoms.

I got a blood test done because I’m experiencing GI issues. The test came back with a TTG level of 100, From the research I’ve done it seams like that’s pretty much a sure thing but they want to do an upper endoscopy as well. That test isn’t for a couple weeks so to say I’m anxious/stressed would be an under statement. ofcoarse with any online research there is always 10x the amount of serious/negative results VS non urgent/less serious illness associated with the symptoms I’m experiencing. 
 

-Burping after every meal

-Bloated after every meal

-sometimes sharp pains in lower abdomen  (not  crippling) 

-gurgling in stomach 

-slight acidic taste when burping

-left side of abdomen both front and around my back feels sore, almost like a pulled muscle

What I’m trying to determine to ease my mind is how much would these symptoms be affected by gluten intake? I understand not two cases will be identical but I was under the assumption that (if you have celiac) no gluten you feel fine, yes gluten you feel bad. 
 

if I do in fact have celiac then why when I eat anything would I have these symptoms. Is it because I haven’t cut gluten for long enough to notice a difference. I’m not completely cutting it out so I don’t mess up the endoscopy results but I was hoping I’d see some differences depending on my meals 

 

 

 

[trents]

Realize that both celiac disease and NCGS (Non Celiac Gluten Sensitivity) do not necessarily occur in a vacuum. By that I mean there are many "spinoff" diseases that often accrue from having either of these conditions. But lets just focus on celiac disease since your antibody tests strongly suggest that is what you are dealing with. By the time you begin experiencing symptoms you have likely actually had celiac disease for longer than you realize. The inflammation gluten causes in your small bowel damages the villi which is the nutrient absorbing area of the intestinal track. By the time you experience symptoms you likely have developed nutritional deficiencies that lead to other medical problems. One of the medical issues commonly associated with celiac disease is SIBO (Small Intestine Bacterial Overgrowth) which causes symptoms like you describe. Another problem commonly associated with celiac disease is fatty stools since the fat in your diet is not being digested properly. That means more fat than usual will get into your large bowel and probably upset the balance of microbiota present, leading to various digestive irregularities. 

By the way, the Mayo Clinic advises the daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks leading up to the endoscopy/biopsy.

[Scp]

4 minutes ago, trents said:

Realize that both celiac disease and NCGS (Non Celiac Gluten Sensitivity) do not necessarily occur in a vacuum. By that I mean there are many "spinoff" diseases that often accrue from having either of these conditions. But lets just focus on celiac disease since your antibody tests strongly suggest that is what you are dealing with. By the time you begin experiencing symptoms you have likely actually had celiac disease for longer than you realize. The inflammation gluten causes in your small bowel damages the villi which is the nutrient absorbing area of the intestinal track. By the time you experience symptoms you likely have developed nutritional deficiencies that lead to other medical problems. One of the medical issues commonly associated with celiac disease is SIBO (Small Intestine Bacterial Overgrowth) which causes symptoms like you describe. Another problem commonly associated with celiac disease is fatty stools since the fat in your diet is not being digested properly. That means more fat than usual will get into your large bowel and probably upset the balance of microbiota present, leading to various digestive irregularities. 

By the way, the Mayo Clinic advises the daily consumption of an amount of gluten equivalent to two slices of wheat bread for at least two weeks leading up to the endoscopy/biopsy.

That makes sense for sure, thank you.

im 36 years old, besides excessive burping the last 8 months after meals I have had zero symptoms like I have now. Can celiac pop up that quickly? It’s like there was nothing then all of the sudden I have issues. 
 

as for my stool it appears normal. Normally I go twice a day without problems. Lately (I’m sure due to stress) it’s been a more random schedule. I also attribute that to my diet changing. Sometimes immediately after eating I have the urge to have a bowel movement but I can’t go   

[trents]

50 minutes ago, Scp said:

That makes sense for sure, thank you.

im 36 years old, besides excessive burping the last 8 months after meals I have had zero symptoms like I have now. Can celiac pop up that quickly? It’s like there was nothing then all of the sudden I have issues. 
 

as for my stool it appears normal. Normally I go twice a day without problems. Lately (I’m sure due to stress) it’s been a more random schedule. I also attribute that to my diet changing. Sometimes immediately after eating I have the urge to have a bowel movement but I can’t go   

Our perception of medical problems "popping up quickly" can often be misleading. It's like an earthquake. The subterranean pressures of shifting tectonic plates are probably building for a long time before the big one hits that we perceive as the beginning of the event. With celiac disease there is a genetic component that remains latent until some biological stressful triggering event happens such as a viral illness that converts it to an active form. That's when the damage to the villi starts. But the damage may be slow in developing such that you don't experience symptoms for quite a while and then one day you become aware of it.

When you say "pop up that quickly" I assume you are not referring to what you experience immediately after eating a meal. That is just a response to an underlying problem, not the problem itself.

Also, realize that celiac disease is not a food allergy. It is an autoimmune disease whose triggered by the ingestion of gluten. Gluten is misinterpreted as an invader or a threat and the body attacks it as it is interacting with the cells that make up the villi that line the small bowel. The attack causes the inflammation which, over time, damages the villi. The inflammation also produces antibodies which is what the serum tests you have had done are designed to detect.

Edited July 2, 2022 by trents

[Scp]

10 minutes ago, trents said:

Our perception of medical problems "popping up quickly" can often be misleading. It's like an earthquake. The subterranean pressures of shifting tectonic plates are probably building for a long time before the big one hits that we perceive as the beginning of the event. With celiac disease there is a genetic component that remains latent until some biological stressful triggering event happens such as a viral illness that converts it to an active form. That's when the damage to the villi starts. But the damage may be slow in developing such that you don't experience symptoms for quite a while and then one day you become aware of it.

When you say "pop up that quickly" I assume you are not referring to what you experience immediately after eating a meal. That is just a response to an underlying problem, not the problem itself.

Also, realize that celiac disease is not a food allergy. It is an autoimmune disease whose triggered by the ingestion of gluten. Gluten is misinterpreted as an invader or a threat and the body attacks it as it is interacting with the cells that make up the villi that line the small bowel. The attack causes the inflammation which, over time, damages the villi. The inflammation also produces antibodies which is what the serum tests you have had done are designed to detect.

This all makes complete sense. To rule out very serious conditions (some sort of cancer) I’ve been focusing on the fact that the blood test didn’t raise any flags other than the TTG levels. It’s my understanding that even if not looking specifically at white blood cell counts they would show abnormal if my body was fighting something off

[trents]

12 minutes ago, Scp said:

This all makes complete sense. To rule out very serious conditions (some sort of cancer) I’ve been focusing on the fact that the blood test didn’t raise any flags other than the TTG levels. It’s my understanding that even if not looking specifically at white blood cell counts they would show abnormal if my body was fighting something off

The immune system is very complex with a number of different pathways representing different ways of dealing with different threats. White blood cell counts become elevated when an infection is being battled. Celiac disease is not an infection (not a bacteria or virus) but an autoimmune condition that does not involve the white blood cells responding.

[Posterboy]

Scp et Al,

Trents has given you some good advice.

Scp it sounds like you have an ulcer.......

Mastic Gum can help it. 

Often heartburn is triggered by a stress(er) 6 months before it happens?  Have you had a lot stressful moments in the last couple of years you can identify with as you look back on your life over that time.

Here is the research that shows how stress can trigger heartburn

Entitled "The effect of life stress on symptoms of heartburn"

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

If you have been taken an acid reducer a H2 Blocker or PPI it could be triggering your symptom's espcially bloating etc.

Howard Hughes Medical Institute showed why this is and how H.Pylori can cause an ulcer when your stomach acid gets low.

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

Celiac has been shown to be triggered by your Environment/Stress/Lifestyle before you develop NCGS and/or Celiac disease.

Here are some articles about it.

Entitled "Lifestyle a risk factor for celiac disease"

https://www.sciencedaily.com/releases/2015/11/151102100302.htm

And this one that shows the stress of life like a pregnancy can trigger either a NCGS or Celiac diagnosis.

https://www.verywellhealth.com/can-pregnancy-trigger-celiac-disease-562302

They say it well......first comes the stress (Baby) then comes the Celiac diagnosis.

The Low Stomach acid you might now be experiencing occurs at a high rate in Celiac's.

See this research entitled "Gastric morphology and function in dermatitis herpetiformis and in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/3992169/

Taking some Baking Soda in water (see the below article) can be a nice home test to see how low your stomach acid really is???

You might be surprised to find out how really low it is....

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

You should start taking a B-Complex with meals if you don't already......many people will begin to notice a a difference in the 2nd month.  But do take it at least 2/day for best results.

B-Vitamins are water soluble and levels will begin to go down after 4 hours normally.....and why 3/day is 50 percent better than 2/day and 3/day is 3x better than once a day.

If you only take them once a day you will probably not get the benefit you seek for nearly 3 months or more.

Once your urine becomes a bright yellow or almost a lurid color then you are now bypassing through your kidneys excess B-Vitamins and should cut back on the frequency and dose you are taking.

You can test this by only taking 2x (Morning and evening) and see your urine color change over the course of the day. If your your urine doesn't become bright yellow in the first 6 hours after taking a B-Complex you are still low in B-2 (the Vitamin changing the color of your urine).....

Don't stop the B-Vitamin until your color is bright yellow......not just a little yellow.....people who pass a lot of Riboflavin in their urine.....their urine will being to glow at night (it is florescent) and a sign you have enough B2 aka Riboflavin.

Good luck on your continued journey!

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

Posterboy by the grace of God,

[Scp]

1 hour ago, trents said:

The immune system is very complex with a number of different pathways representing different ways of dealing with different threats. White blood cell counts become elevated when an infection is being battled. Celiac disease is not an infection (not a bacteria or virus) but an autoimmune condition that does not involve the white blood cells responding.

Exactly what I’ve read. Thank you. 
 

as far as something like a cancer the white blood cell count would be elevated?

[trents]

1 hour ago, Scp said:

Exactly what I’ve read. Thank you. 
 

as far as something like a cancer the white blood cell count would be elevated?

Yes, with some cancers (like leukemia) the white blood cells can be elevated, I believe. Did your blood work include other tests besides those specific to celiac disease? It is not common for doctors to order celiac blood antibody tests along with the usual things that would be included in a CBC (Complete Blood Count) and a CMP (Complete Metabolic Panel). Most of us have found that we celiac disease is just not on most physician's radar and we have difficulty getting them to even look at that possibility.

Perhaps, I'm reading between the lines here but I get the feeling you are more concerned about the possibility of having cancer than the probability of having celiac disease.

Edited July 2, 2022 by trents

[Scp]

47 minutes ago, trents said:

Yes, with some cancers (like leukemia) the white blood cells can be elevated, I believe. Did your blood work include other tests besides those specific to celiac disease? It is not common for doctors to order celiac blood antibody tests along with the usual things that would be included in a CBC (Complete Blood Count) and a CMP (Complete Metabolic Panel). Most of us have found that we celiac disease is just not on most physician's radar and we have difficulty getting them to even look at that possibility.

Perhaps, I'm reading between the lines here but I get the feeling you are more concerned about the possibility of having cancer than the probability of having celiac disease.

Yes you nailed it. I stress about everything by nature but after having our first child this year it gave me a new sense of responsibility. Would that said the thought of something serious happening to me worries me a lot. It’s unfortunate mentality I have but I can’t disregard it. 
 

of course I don’t want to commit to a lifelong battle with celiac disease but if it’s the better of two evils I’d be OK with it. What I’m trying to achieve by messaging on this forum is to

A: find out more info about celiac in case that’s what it is.

B:have my focus be on celiac rather than the worst possible scenario I could have as far as G.I. problems go. I would not be feeling this way if my doctors did not switch my appointment and push it out three weeks. I was completely content with going with the celiac diagnosis and then confirming it a couple days later. Now that I have to wait three more weeks I’ve already been down the WebMD rabbit hole and have started panicking. I’d rather divert my attention towards a forum like this then constantly talk about it with my wife and get her worried 

so to answer your question it’s a little bit of both. I do want to know more about celiac in general but I’m also trying to move my mind away from the worst possible scenario. The fact of the symptoms are so similar make it very difficult to not think of both at the same time

 

 

[trents]

You said, "as for my stool it appears normal. Normally I go twice a day without problems. Lately (I’m sure due to stress) it’s been a more random schedule. I also attribute that to my diet changing. Sometimes immediately after eating I have the urge to have a bowel movement but I can’t go"

When you say your diet changed do you mean you have already started eliminating gluten? Please realize that you need to consume regular amounts of gluten until all testing is complete. You've already had the antibody testing done and it was positive. Now you are awaiting the endoscopy with biopsy. The Mayo clinic guidelines for a pretest gluten "challenge" is the daily consumption of two slices of wheat bread (or the equivalent) for at least two weeks up to the day of the procedure. 

If it's any comfort, your symptoms strike me as aligning more closely with celiac disease rather than stomach or bowel cancer.

[Scp]

1 hour ago, trents said:

You said, "as for my stool it appears normal. Normally I go twice a day without problems. Lately (I’m sure due to stress) it’s been a more random schedule. I also attribute that to my diet changing. Sometimes immediately after eating I have the urge to have a bowel movement but I can’t go"

When you say your diet changed do you mean you have already started eliminating gluten? Please realize that you need to consume regular amounts of gluten until all testing is complete. You've already had the antibody testing done and it was positive. Now you are awaiting the endoscopy with biopsy. The Mayo clinic guidelines for a pretest gluten "challenge" is the daily consumption of two slices of wheat bread (or the equivalent) for at least two weeks up to the day of the procedure. 

If it's any comfort, your symptoms strike me as aligning more closely with celiac disease rather than stomach or bowel cancer.

Dietary changes meaning less consumption overall due to trying to eat less gluten. My house isn’t set up for it and I’ve defaulted to salad/rice chicken etc…. 
my wife is a chef thankfully so the meals have been healthy/hearty but without gluten the last couple days. It was a test I wanted to do for myself to see if anything changed. I am going back 100% to my regular diet starting tomorrow until my test. 
 

 

[Chloe Senora]

On 2/7/2018 at 8:37 AM, Juca said:

I also felt the disease came suddenly. I was already in my 30s. I guess you need the right constelation of factor to allign and make you vulnerable enough for it to manifest itself. This seems to match the views of Dr. Alessio Fasano, a very respected specialist in celiac disease (check out some of his interviews on youtube). 

In my case, I had moved to a different country, where I started to eat more wheat and where my sun exposure was much lower (low vit.D, low immunity). This lead to multiple URT infections, for which I was always prescribed antibiotics. The antibiotics devastated my microbiome and made me even more vulnerable. The tipping point was a stomach flu, a bad one. By then my insides must have been leakier than a colander. I never was the same again. 

Two years after that stomach flu and a lot of complaining I was finally tested and diagnosed. 

 

 

It’s interesting that you say this. I’ve been constipated all my life, fatigued since I got my first period, severely anemic for 2 and a half years, low vitamin D. But it wasn’t until after I got food poisoning a couple weeks ago, that I have not had a normal bowel movement since. And my drs told me to eat a lot of gluten because they want to test me for celiac, primarily because of the anemia and chronically low ferritin. Ferritin is supposed to be 14 but ideally 50-146. 2 and a half years ago it was 3.7, then 7.3, then 10.3, but now it’s 5. And a year ago I got on birth control so I don’t even get a period anymore. Almost all of my current health issues (much more than just celiac) either started or became a lot worse after I got Covid 2 years ago. If anyone has any tips for me it’d be greatly appreciated. Waiting on my blood test results, should get them in a day or 2. 

[Scott Adams]

Let us know how it turns out, but have you been eating gluten, lots of it, daily for at least 6 weeks? They usually recommend at least 2 slices of wheat bread daily, otherwise your results could be false negative if you've been gluten-free before the test.

[Chloe Senora]

54 minutes ago, Scott Adams said:

Let us know how it turns out, but have you been eating gluten, lots of it, daily for at least 6 weeks? They usually recommend at least 2 slices of wheat bread daily, otherwise your results could be false negative if you've been gluten-free before the test.

Yeah I have. 

[Scott Adams]

If you do end up with a negative test, approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.