Study Shows Worrisome Gut Changes in Seemingly Healthy Gluten-Free Celiac Patients

The mystery effect upregulated genes in celiac patients will protect celiacs from the zombie virus!

I think to have an alarmist headline that there are "Worrisome Gut Changes" is not doing a service to the celiac disease community.  The scientists certainly identified a different pattern of RNA expression in patients with and without celiac disease, which would be expected.  The gluten-free diet does not cure celiac disease, and we would still anticipate differences that we can measure on a molecular level.  However, to scare the community that "molecular damage may be ongoing in seemingly healthy, gluten-free celiacs" is misleading and a gross misinterpretation of the data.

On the contrary, many celiacs spend decades feeling unhealthy even though they are on 100% gluten-free diets, and many are even on grain-free and other very restrictive diets. Some feel like they are going crazy and cannot even venture outside or do any travel without bringing their own food. This "alarming" headline is for those celiacs who are not recovering on a gluten-free diet, and it is alarming because the results of this study are alarming. Many celiacs simply won't recover on the gluten-free diet, and will likely need additional treatment to deal with the disease. What treatment that will be remains to be seen. Will it be Larazotide Acetate? Will there be genetic or other tests to determine which celiacs won't recover on a GFD? If you fall into the category of people in this study who will not recover by diet alone, you may also find its results alarming.

On 10/2/2020 at 9:42 AM, GFinDC said:

The mystery effect upregulated genes in celiac patients will protect celiacs from the zombie virus!

I really appreciate this humorous comment from a local celiac and will relay it to my family, who are doing all they can to prevent a zombie take-over. Tell me, can masked zombies get covid or only un-masked?? 

Thanks again for a much needed chuckle, since who has any idea what these findings actually mean?

Hello, I have been searching the internet trying to figure out what is wrong with me. I was diagnosed with celiac disease at 2 years old after lots of testing. I am 19 years old and have been on a strict gluten free diet for the last 17 years. However, during the past 4-5 years I have had increasingly worse symptoms(symptoms of celiac) while following the diet. My cousin(17 years old) has the exact same symptoms as me and is also following a gluten free diet. I am trying to figure this out before too much long term damage is done. The fact that this is a recent study without any foreseeable solutions is worrisome. 

1 hour ago, Guest Sam said:

Hello, I have been searching the internet trying to figure out what is wrong with me. I was diagnosed with celiac disease at 2 years old after lots of testing. I am 19 years old and have been on a strict gluten free diet for the last 17 years. However, during the past 4-5 years I have had increasingly worse symptoms(symptoms of celiac) while following the diet. My cousin(17 years old) has the exact same symptoms as me and is also following a gluten free diet. I am trying to figure this out before too much long term damage is done. The fact that this is a recent study without any foreseeable solutions is worrisome. 

You should see your GI.  Your celiac disease might be active due to gluten exposures or you could have another illness.  Once you have one autoimmune disorder, you can develop more.  Your GI can help you figure this out.  

2 hours ago, cyclinglady said:

You should see your GI.  Your celiac disease might be active due to gluten exposures or you could have another illness.  Once you have one autoimmune disorder, you can develop more.  Your GI can help you figure this out.  

I have made multiple trips to the GI. Taken a stool, blood, allergy, and SIBO test. Everything looks normal besides high allergen antibodies. 

7 hours ago, Guest Sam said:

I have made multiple trips to the GI. Taken a stool, blood, allergy, and SIBO test. Everything looks normal besides high allergen antibodies. 

Look at Mast Cell Activation Disease which requires immediate cooling of urine and blood to test properly. Much has been learned about it this past 2 years, but may have autoimmune links. 12 yrs gluten-free, 5 yrs dairy free, but 10 days of MCAD treatment is giving me my life back! 

9 hours ago, Guest Sam said:

I have made multiple trips to the GI. Taken a stool, blood, allergy, and SIBO test. Everything looks normal besides high allergen antibodies. 

9 hours ago, Guest Sam said:

I have made multiple trips to the GI. Taken a stool, blood, allergy, and SIBO test. Everything looks normal besides high allergen antibodies. 

Have you looked into Mast Cell Activation Syndrome?

I have this now, after not getting better on the gluten-free diet. (Not officially diagnosed as Celiac).

gluten sensitivity & celiac disease is complex to say the least. is celiac really even a disease? there's not a day i feel good although i have days when i feel better provided i have eaten very sparingly for a few days. thank God gluten does come out of the system but, even then i'm not feeling 100. so, whats my point? i really don't even know anymore. it's been a long and exhausting journey dealing with a problem as simple as food consumption. 

Symptoms vary so widely in celiacs', I think, because we have often developed some of the other autoimmune diseases that go in tandem with Celiac, and we focus on those instead of the "hidden" celiac.  What seems strange, is that you have been addressing the celiac from a young age, yet still seem to be vulnerable to developing those other autoimmune diseases.  My celiac lay hidden for years, allowing the others to develop.  I thought if I had known I had celiac from the beginning, they would not have developed, now that theory is blown.  

Since discovering the celiac and treating it, the other autoimmune diseases have lessened but I still have them.  Maybe hearing some of my mysteries might help you because no one would say what I had for about 3 years.  Finally going to a naturopath, we discovered, EPI (Exocrine Pancreatitis Insufficiency)  I could not digest my fats well, and I had horrific attacks from it, landing me in the hospital every time.  During one of those attacks they ran a blood test for celiac and told me it was negative so I was safe from that.  Later, after more attacks, they did a biopsy which was negative.

The NP and I, after researching the internet and my symptoms started treating the EPI with very low fat diet and enzymes.  I went 6 months and no violent attacks.  Then I started having them again, to my horror, very painful!  ???  What now?  Finally did another biopsy because another doctor wanted to.  It came back positive for Celiac.  I was angry and in denial. I said why was the first one negative.  He said because the intestines are long and she took from an uninfected area.  I still did not believe till I went to my 23 & me ancestry health and there it was, my family carries a variatn for celiac.  OK!  So I started treating that.  

Still had a few more attacks.  Read a book called the "The Plant Paradox" by Dr. Steven Gundry, which really helped solve a big part of the mystery too, LECTINS!"  It described what they do, causing white blood cell counts to increase, which happened during every attack and no onle knew why.  I cannot explain the thrill of understanding what was still causing problems.  I remember many of my attacks occurred after ingesting foods high in lectins like beans, cherry tomatoes, mostly "skin" where lectins are concentrated.  My husband can eat foods high in lectins all day long, some of us cannot.  

Now that I watch my wheat, keep fats low, and low lectins, I still take enzymes, I do not have any more gruesome attacks.  I have low thyroid, and some other smaller issues from the celiac.  I learned about a lot of them in a book every celiac should have, "Celiac, The Hidden Disease."  I think a lot of people have this but it goes undetected, wrecking havoc  with their system, much because of the varied symptoms caused by the OTHER issues.  I also think glyphosate has a big role in food damaging our systems now days too.  

Again, at my age, in my 60's, all these things had been cooking for some time and finally my body said no more.  You, on the other hand, starting out when they know more about Celiac now, have been able to start treating it, but even in doing so, it sounds like you are still susceptible to developing the other autoimmune diseases.  I would get those 2 books and research on the computer, that is what I had to do.  Doctors do not have the time to monitor every patient as closely as you can yourself and also investigate.  I am sorry you have had to deal with this at such a young age.  Family health history is important.  I have learned about the cousins, aunts, etc, that have had the similar health issues.  I believe my mother had celiac but it was not well known enough back then to detect it.  Good luck.