Celiac Remission Possible?

[Mikeymike93]

Over 2yrs ago I was having unknown issues related to immune system. Itching, swollen glands, and also digestive issues. I got a blood test that showed very positive celiac, however the endoscopy scope did not show damage. Some symptoms got better over time and some did not. After 2 yrs I went on a gluten diet of 2 slices of bread for 4weeks and had a repeat blood test. The blood test came back negative and I didn't feel unwell during the 2weeks. Why would I not have a reaction or a positive test? And would this mean I might only react if I eat large amounts for a long period of time?

Anyone else experience anything similar or know of situations like this? 

[ravenwoodglass]

It can take some time for the antibodies to build up enough to cause symptoms or a positive blood test. If you had a positive blood test and saw a remission of symptoms gluten free I would advise you to get back on the diet.

Interesingly in the last century celiac was thought of as just a childrens disease that could be outgrown. We now know that is not the case.

[Mikeymike93]

2 minutes ago, ravenwoodglass said:

It can take some time for the antibodies to build up enough to cause symptoms or a positive blood test. If you had a positive blood test and saw a remission of symptoms gluten free I would advise you to get back on the diet.

Interesingly in the last century celiac was thought of as just a childrens disease that could be outgrown. We now know that is not the case.

Thanks. Yes I continued gluten free after after 4weeks based in advise from my gastro doc. So if that's the case what wrong with cheating every once in a while? Especially if my first endoscopy shown no damage being on a gluten diet. I have always been told you can't even ingest traces of it. 

[ravenwoodglass]

Your gut damage may have been patchy and been missed. That happens. You have a good GI and if I were you I would heed their advice. Celiac antibodies can be sneaky.  They can attack the brain and nervous system causing mood and movement issues and can impact learning. The antibodies can attack pretty much any organ. Glad to hear you are back on the diet.

[Phosis]

Only you can make a decision like that. But understand there are many factors involved in Celiac, and if it is not kept under strict control, it can lead to worse problems down the road, such as cancer.

IEL elevation is one of the markers of Celiac disease along with villous atrophy. TTG-IGA markers can be low or 0 in people with Celiac. Blood is not a fantastic way to gauge the prevalence of it.

You talk about "cheating" like you are on a diet, and you want a "break" from the diet.

Celiac disease and the gluten free diet is not keto, or some other fad. It is what you follow in order to ensure your immune system does not start ATTACKING YOUR BODY. 

If you are at a stage where you are questioning if you can have the odd sandwich, I would seriously consider spending some time reading about the disease in detail so that you understand how irresponsible such behavior is, and the gravity of what this disease can do to your body if you allow it too.

[Wheatwacked]

As an infant in 1976, around 6 months, my son was diagnosed with Celiac Disease. He had the bloated belly, colic, bad. He looked like a Biafra Famine baby. He was biopsy diagnosed and ate only Nutramigen for six months. He was strictly gluten free until at 5 years old he started sneaking bread. Not understanding, we allowed it. His original doctor was not available and the pediatrition saw no reason to continue gluten free. By kindergarden the teachers asked us to put him on Ritalin, as his doctor 5 years earlier had predicted. He swam everyday and is at 43 a professional lifeguard. In 2014 I got very sick (63 years old) and noticed that I was now the spitting image of him (although much larger) at six months. I now had the Biafra Baby Belly. After 6 years of gluten free, and one by one correcting numerous vitamin deficiencies I am approaching what I consider feeling well. Going gluten free I counted 18 symptoms that had bothered me my entire life, but had always been told, nothing wrong. Some people are just that way. I am now watching as more and more my son is showing signs of those same issues that I had finally cleared.

Your issues that did not get better could be vitamin and mineral deficiencies that are a result of what we Americans, and as more countries mimic our diet, the world, don't get enough of, and the medical proffessional are not concerned about. Most believe it a lifestyle fad. Consider your Celiac Disease a wake up call. Remember how bad it was. Be glad you can tolerate small amounts of cross contamination so you can eat out, but don't think that you are cured. Our modern wheat is highly addictive and companies spend billions to make you want it. No one knows what triggers an acute bout so if you choose to not be gluten free, it's a shakey tightrope you are walking.

[Kate333]

 

On 7/30/2021 at 12:32 PM, Mikeymike93 said:

Thanks. Yes I continued gluten free after after 4weeks based in advise from my gastro doc. So if that's the case what wrong with cheating every once in a while? Especially if my first endoscopy shown no damage being on a gluten diet. I have always been told you can't even ingest traces of it. 

Hi Mikeymike.  

IMO that's like saying, "Well, what's wrong with smoking, drinking, drugging 'every once in while'?  Nothing bad has happened to me so far?" 🙃  I work in the health care field and hear that line ALOT!  LOL

But, seriously speaking, this condition is lifelong (at least until a cure is found--hopefully soon).  But the good news is, unlike with many other chronic conditions/illnesses, you can PREVENT FUTURE harm by doing something far easier than having to take insulin shots or pills every day: just changing your diet a bit to exclude a few things made with gluten. So what's the big loss or sacrifice? Dude, if someone hands you a gift like that, why NOT gladly accept and use it to remain healthy?!

I can assure you that our offices are full of people struggling with the end-stage effects of morbid obesity, diabetes, heart disease and lung cancer, most of which was 100 percent preventable!  For decades, many of these patients told themselves, "Just one more piece of cake (or drink or cigarette) once in a while won't hurt me." 

Not trying to be preachy or scare you, but I can assure you that many patients say that they would have lived life quite differently had they realized in their youth what a lifetime of bad habits would ultimately do to their health.   Also, celiac disease is often a "silent disease" that damages your body while you continue eating G, and you won't even realize the extent of the damage until years/decades later when it's far harder or impossible to reverse.

I hope you take advantage of the gift of a diagnosis early in life and proactively protect yourself to ensure a healthy future.

[Mikeymike93]

2 minutes ago, Kate333 said:

 

Hi Mikeymike.  

IMO that's like saying, "Well, what's wrong with smoking, drinking, drugging 'every once in while'?  Nothing bad has happened to me so far?" 🙃  I work in the health care field and hear that line ALOT!  LOL

But, seriously speaking, this condition is lifelong (at least until a cure is found--hopefully soon).  But the good news is, unlike with many other chronic conditions/illnesses, you can PREVENT FUTURE harm by doing something far easier than having to take insulin shots or pills every day: just changing your diet a bit to exclude a few things made with gluten. So what's the big loss or sacrifice? Dude, if someone hands you a gift like that, why NOT gladly accept and use it to remain healthy?!

I can assure you that our offices are full of people struggling with the end-stage effects of morbid obesity, diabetes, heart disease and lung cancer, most of which was 100 percent preventable!  For decades, many of these patients told themselves, "Just one more piece of cake (or drink or cigarette) once in a while won't hurt me." 

Not trying to be preachy or scare you, but I can assure you that many patients say that they would have lived life quite differently had they realized in their youth what a lifetime of bad habits would ultimately do to their health.   Also, celiac disease is often a "silent disease" that damages your body while you continue eating G, and you won't even realize the extent of the damage until years/decades later when it's far harder or impossible to reverse.

I hope you take advantage of the gift of a diagnosis early in life and proactively protect yourself to ensure a healthy future.

Thanks. Yeah my questions are not meant to be asked in a smart-ass type of way, more trying to understand the disease more based on my experience. My gastro doc really couldn't answer my questions other than saying I had to make my own decision based on the first blood test. My confusion is really if I had no symptoms, no increased blood results on my second test and no sign of internal damage on my first test when the positive blood test came in, what is it doing to me in even small amounts. 

I know this isn't a thread for medical advice but my questions were what my doc could answer so seeing if anyone one went through the same thing and I haven't found one yet. 

[Kate333]

No worries, Mikeymike.  I didn't take your Qs that way.😉  Also, like I said, I didn't mean to be preachy.  I've just seen so many consequences of bad lifetime choices and often wonder why people sometimes seem so reluctant to make small, lifesaving changes.  But that is for another day, thread...   

I think what you ask is legitimate, the same Q I had when first diagnosed with celiac disease and knew little about this condition.  I, too, wondered (and was hoping) that once I went gluten-free and healed my gut, could I just return to eating G with no risk? Sadly, the answer for now is "no".  But, with advances in research, hopefully sooner rather than later, we will one day wake up to hear that celiac disease has been cured!

Regards,

Kate 

[Wheatwacked]

Giving up the gluten based diet I went through the same emotions. I had to go through the stages of grief.  Shock and Numbness, sadness, anger, anxiety, and confusion, barganing, longing, acceptance, apathy, anger, despair and hopelessness, withdrawal, return to a new state of "normal". This is a major change in your reality. Unfortunately a gluten free diet is considered a lifestyle choice by the majority. At one point I was even downright evangelical about GFD and in my family it is a forbidden topic to me in family gatherings, like politics. Your questioning is absolutely valid and this forum is a safe place. Thank you Scott for creating it.

[Iyeron]

I really want to try a diet without gduten, but I still can't make up my mind 

[trents]

4 hours ago, Iyeron said:

I really want to try a diet without gduten, but I still can't make up my mind 

Your statement is a contradiction. If you can't make up your mind about trying a gluten free diet then you really do no want to try it. What are you trying to say? And why are you considering this? Do you suspect gluten is causing you physical and medical problems? Have you been tested for celiac disease and found to have it?

[Wheatwacked]

7 hours ago, Iyeron said:

can't make up my mind 

Just do it for a month and find out.

There is no good reason to not eat gluten free. Fruits, vegetables, dairy and cheaper than many canned or boxed foods. Be aware that processed gluten free foods often are no healthier than processed gluten foods. Most wheat (including barley and rye) based products are mandated to be enriched. "These restored nutrients include iron and B vitamins (folic acid, riboflavin, niacin, and thiamine)." https://en.wikipedia.org/wiki/Enriched_flour;

4 oz. of mixed chick peas, pinto and small red beans has 136% of daily folate without the increased risk of prostate cancer from folic acid. "Participants were followed for up to 10.8 years...the estimated probability of being diagnosed with prostate cancer over a 10-year period was 9.7% ... in the folic acid group and 3.3% ...in the placebo group" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657096/.