Complications of Celiac and the Covid Vaccine; collagenous sprue, collagenous colitis

[Rejoycin]

Hello, 

I am hoping to get in touch with Jefferson Adams or a doctor that can support us in this:

We are seeking resources resources for my 21 year old daughter with severe celiac. She is a senior at a Phila University and has been diagnosed with Collagenous Colitis and Collagenous Spru rooted in Celiac. She has undergone endoscopy and colonoscopy, presently on meds for the past 3+ months.
With the condition active she is not comfortable taking the covid vaccine. Our family doctor has supported her in not having the covid shot, or "vaccine", since she is on a steroid and very particular about what she is putting in her body during this time of study. Regardless, the University did not grant an exception but a deferment because they said her condition was not a contraindication according to the CDC guideline (which change daily).
We need help to find support for her present condition and a specialist that will also support her decision to not take the jab at this time.
I will post this is several forums on this site.

DC

[Scott Adams]

So if I understand your post, she has celiac disease, which can cause the lesions often referred to as "collagenous sprue," and you are wanting to use this as an excuse not to get vaccinated? I believe that this is a very poor choice, especially if she's going to a university in the Fall. The vaccine may save her from being hospitalized or even dying from covid-19, as the data shows that around 99% of those in hospitals or are dying from it now are unvaccinated:
https://apnews.com/article/coronavirus-pandemic-health-941fcf43d9731c76c16e7354f5d5e187 

Also, can I assume that she is on a gluten-free diet to treat her celiac disease? Normally steroids are not required to treat celiac disease, and her gut should heal after going gluten-free.

[Rejoycin]

Thank you for your opinion. 
Your judgement is not accurate. My daughter has been on a gluten-free diet over 7 years. Sometimes the disease does not respond to gluten-free diet. My daughter has been to specialists and treated at Philadelphia’s highly respected celiac resources. 
We have already decided the direction we want to take in regard to the shot, and were looking for support in addition to her family doctor (who understands her medical responses). The covid shot is more a risk to young people than the disease and that is not the direction she will choose. Good luck with your forum. 
 

[Scott Adams]

Thanks for clarifying her situation, and it sounds like she's been diagnosed with refractory celiac disease, and she's not recovered with a gluten-free diet. We have articles on this here:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

and this article indicates that Tioguinine is a possible treatment:

and stem cell infusions:

 Additionally, it seems you're willing to accept science to help with your daughter's situation, while you are ignoring scientific facts with regard to the risks of covid-19 vaccines in young people...this is not just my opinion, but the opinion of infectious disease doctors worldwide, including those at the CDC:

https://www.cdc.gov/vaccines/acip/meetings/downloads/slides-2021-06/05-COVID-Wallace-508.pdf

[Rejoycin]

Thank you. I will look through this information. As for the science, there are doctors and scientist of different opinions.

[Admin removed a link to a non-scientific, anti-vaccine site]

[Scott Adams]

Sorry, but the link you shared doesn't cut it. It's too bad you can't differentiate between scientific publications and good data vs. non-scientific and bad data. I wish you and your daughter well, and that if you get covid-19 you will be in the group of those who have minor symptoms.

[Posterboy]

Rejoycin,

Here is a good thread on Refractory Celiac disease....it might help you to read it. Be sure to read it when you get a chance....it has  a lot of good resources in it.

I also wanted to say to be sure to take your daughter off of Milk/Casein/Lactose for a good 3 or 4 months to see if she doesn't improve.

It is linked in the above thread but I will quote it below for easy reference....

Milk has now been shown to be a trigger in Celiac's for those on a gluten free diet who are still suffering from Refractory Celiac disease....

Here is a great article about it...

Your daughter might also be reacting to Corn in her gluten free diet....

Here is nice article and thread that might help you.

You might want to check for Xanthan Gum in her diet as well.....some Celiac's react to it as well.

See this  thread and follow the link on Celiac Rash still happening on Gluten free Sorghum Floor mixes...

It explains well how Corn and Sorghum both can affect some Celiac's...

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

Posterboy,

[Rejoycin]

Thank you for the good wishes. I hope that for everyone and that the treatment will be available if anyone should become ill. Personally, we have ivermectin at home. 

As for the non-scientific and bad data, the reference I provided, Dr Peter McCullough,  is professor of medicine and vice chief of internal medicine at Baylor University and also teaches at Texas A & M. He is a epidemiologist, cardiologist and internist and has testified before the Texas State Senate related to Covid 19  treatments. He holds the distinction of being the most widely cited physician in the treatment of COVID-19 with more that 600 citation in the National Library of Medicine. 
 

46 minutes ago, Posterboy said:

Rejoycin,

Here is a good thread on Refractory Celiac disease....it might help you to read it. Be sure to read it when you get a chance....it has  a lot of good resources in it.

I also wanted to say to be sure to take your daughter off of Milk/Casein/Lactose for a good 3 or 4 months to see if she doesn't improve.

It is linked in the above thread but I will quote it below for easy reference....

Milk has now been shown to be a trigger in Celiac's for those on a gluten free diet who are still suffering from Refractory Celiac disease....

Here is a great article about it...

Your daughter might also be reacting to Corn in her gluten free diet....

Here is nice article and thread that might help you.

You might want to check for Xanthan Gum in her diet as well.....some Celiac's react to it as well.

See this  thread and follow the link on Celiac Rash still happening on Gluten free Sorghum Floor mixes...

It explains well how Corn and Sorghum both can affect some Celiac's...

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

Posterboy,

Thank you so much. I will have her read this information. She has been taken of milk/dairy products and has improved. I will have her read the additional information. I really appreciate this.

[deltron80]

On 7/22/2021 at 12:00 AM, Rejoycin said:

The covid shot is more a risk to young people than the disease and that is not the direction she will choose.

I agree & you have a smart daughter

[Scott Adams]

Dr Peter McCullough, according to his own bio anyway, is an internist and cardiologist, not a virologist or infectious disease doctor. His bio does not mention being an epidemiologist, but, even it he is, that still would not give him the expertise needed to be taken seriously in the field of virology.

His opinion on the topic of virology is one of a non-expert, and just like you would not consult with him regarding a knee surgery, no experts in virology or infectious diseases would consult with him regarding vaccines. This site debunks most of his positions:
https://healthfeedback.org/claimreview/vaccines-are-a-safer-alternative-for-acquiring-immunity-compared-to-natural-infection-and-covid-19-survivors-benefit-from-getting-vaccinated-contrary-to-claims-by-peter-mccullough/

The vaccines are safe, and (just like paying taxes) everyone needs to get one to protect not just themselves, but those around them from what is clearly a deadly virus that is highly contagious. 

[Rejoycin]

19 hours ago, Scott Adams said:

Sorry, but the link you shared doesn't cut it. It's too bad you can't differentiate between scientific publications and good data vs. non-scientific and bad data. I wish you and your daughter well, and that if you get covid-19 you will be in the group of those who have minor symptoms.

Scot, Let’s agree to disagree. Check the doctor’s Linked-In profile, he is an epidemiologist. We can go back and forth posting articles but, obviously, your mind is set. I don’t pretend to know everything, but it is unfortunate many communicate so confidently this vaccine is safe when it has not undergone the standard tests and benefit of time to know this in confidence. Of course, if I share links they will be removed since the forum will not post contrary to your belief. Censorship is an entirely different subject. 
My daughter has studied pharmocology and vaccines, along with others who have long histories and experience with vaccines and they are not in agreement it is safe— specifically weighing out it against the risk benefits of contacting covid for her age bracket. And, there is treatment if someone does does get ill that is effective. That information is also suppressed. 
 

[Scott Adams]

Your daughter is no expert on vaccines, sorry. But let's not forget--you are here seeking to find a doctor who will write you a note to excuse your daughter from getting a vaccine when she goes back to a university, where she will be interacting with dozens of people daily. The reason you will have a hard time finding a doctor to do this is because you could turn around and sue them if she later gets covid-19 and has a poor outcome (given that she has clear autoimmune issues that include refractory celiac disease, this is a possibility). I would be surprised if you are able to find a medical doctor who will do this for you, but perhaps start with Dr Peter McCullough--why would he not do this for you?

By using the excuse that because your daughter is young and therefore doesn't need the vaccine because her risks are lower (yes, this information is technically correct and the data does back this up), you are totally ignoring her risk to other vulnerable people should she get it (around 10% of people can't get vaccinated for health reasons), and you are ignoring the more serious virus variants that are now becoming more dominant. Your daughter is likely to spread covid-19 to others if she gets it, as she may have zero symptoms. Being a responsible member of society, just like paying taxes, means getting vaccinated--you're doing it for others and not just for yourself.

Given the vast amount of junk science and false claims out there about covid-19 vaccines, for example that they have caused people to become magnetic or that they include a microchip that lets Bill Gates control them (yes, both are real claims!), it is definitely necessary for forums like this one to censor junk science about vaccines so the bad ideas will not spread further. Too bad Facebook hasn't done a better job of censoring bad vaccine claims, as that is where most of the really bad ideas are now circulating.

 

[AlwaysLearning]

Rejoycin, I am sorry to hear that your daughter is on steroids and hope she won't need them for long. And it is great to hear that she is doing well with her gluten-free diet after seven years.

But I fear that both you and your daughter may have been exposed to some misinformation about the risks concerning the covid vaccine. In your posts I see that you believe that there are greater risks for young people being vaccinated than old. My understanding is that young people simply have stronger reactions because they have more robust immune systems. This is a good thing because they are more likely to get all of the benefits of being vaccinated. These stronger reactions are compared to older people whose immune systems are in decline and are not as good at "learning" to recognize the new invaders into their bodies. But I can understand how this could easily be misconstrued by someone who was purposefully trying to share an anti-vaccine message.

I do not want to argue with you, but I do want to urge you to consider the possibility that your sources of information are playing on your fears rather than your intellect. It is not your fault that you have fallen prey to misinformation. Humans are born with this weird thing where we are more likely to believe information if we are in a state of fear. After the year we've had, it would be difficult not to have at least a little fear. And it is also a part of human nature not to want to believe information that others tell us, but to want to be the ones to discover information on our own.

So here is what I would do if I were looking for scientific information. I would do an internet search for the topic along with the word "study". Look for original source information from the researchers who actually conducted the studies if you have biases against any particular news agencies. This way, you can be informed from credible sources and have discovered the information yourself. Also, make sure not to only look for information that confirms what you already think. The goal is to start with a clean slate and seek out information without any bias.

But I do hope that you can reconsider your current stance because your life and the lives of your family members could depend on it. If you come down with covid and become hospitalized, it will be too late to get a vaccine.

Also, if you do decide to get the covid vaccine, I would recommend getting it on a Friday and plan not to do much that weekend. After the first shot, you can expect a lot of arm soreness on the first day, and then some fatigue for a day or two. After the second shot, you can expect a fairly high fever but it should break pretty quickly. You will want to stay home for a day or two. But no matter how bad the arm pain or fever, they are a good sign and indicate that your immune system is doing exactly what it is supposed to be doing. 

Also, my understanding is that the Moderna vaccine contains a higher amount of the vaccine "ingredient" than the Pfizer, which would explain why it doesn't require the super cold storage that Pfizer's does but does have stronger reported reactions, though the vaccines are otherwise very similar. If you are concerned about a younger person having a stronger reaction, then you can look around until you find a source that offers the Pfizer jab.

I see videos all of the time from people who were against getting vaccinated and then caught covid and were hospitalized or had a loved one die of covid, now begging people to change their thinking and to get vaccinated. Perhaps you can do an internet search for a few of those as well. It is also human nature to want to group ourselves with people who are most similar to ourselves, so perhaps you can find it easier to change your opinion if you hear their message.

When it comes to finding a doctor who would go against medical guidelines to excuse your daughter despite that neither celiac or steroids are an issue for getting vaccinated, it might be difficult to find one simply because they would be opening themselves up to a lawsuit if your daughter ended up getting covid and dying.

If you continue to choose to take the risk of not being vaccinated, I wish you luck in avoiding Covid, the Delta variant or any future variants that could be even scarier. You're probably going to want to also research some really effective face masks to help keep you safe.

[Kate333]

Hi Rejoycin.

If not yet done, I would recommend an updated TTG blood test to assess the current level of your daughter's G antibodies.  It's not unusual for college students to have ongoing G exposure, no matter how careful they think they are since they often have little control over food purchased/served in places like dorms, co-ops, other shared housing, etc. where group meals are the norm.  Or she may just be regularly letting her guard down a bit for a group trek to a favorite restaurant because ....well, human temptation being what it is...and she is sick of the celiac disease diet fears/routine, tired of feeling sad/self-conscious because she "can't eat like her  friends," and/or perhaps she's just too young to realize the long-term consequences of even small amounts of G exposure over time.  That's not a dig against you/your daughter, just a recognition of "the real world".  

Speaking of which, I grew up in TX, so I was curious about that guy in TX you mentioned, so I googled his name.  Perhaps you aren't aware, but apparently this guy holds and spreads some really "far, far, over the top, way out there" fringe views on vaccines, including labeling Covid vaccines "bioweapons" that have killed 50,000 people.  

I'm not going to argue with you over vaxxes or anything else because, frankly, that's not my style, and I think that's just counterproductive.  Also, I you strike me as a concerned parent who, deep down, is genuinely worried for your daughter's wellbeing and confused by the blizzard of "info." you encounter in the media, social and otherwise, including the CDC pronouncements which, as you note seem to change each day.  Ditto.  I can only share my own experience and views, and you are welcome to take them with a HUGE grain of salt, laugh, roll your eyes, or discard, as you wish.

I held off getting "the jab" until mid-March.  I was just beginning to recover from the shock of newly diagnosed celiac disease when along comes this pandemic which, of course, only magnified my already bad anxiety about food, etc. LOL  I waited a few months after the vaccines were first rolled out in Dec/Jan. and watched my health care providers line up first and get their shots.  And I interviewed all of them about their experiences.  I finally decided to just go and get the shot because I was tired of being (as they say in TX) scared "pea-green" of ending up on a respirator or  worse from Covid.  Also, I wanted to ease the burden on exhausted front-line ER/ICU doctors/nurses I knew who have suffered the brunt of this pandemic.  I also wanted to do all I could to prevent even a remote chance of getting Covid, let alone a Covid "long-hauler" (if I was lucky enough to survive) because that additional condition would further stress my immune system/body already trying to cope with Celiac disease.   So I just prayed, worked up my courage, and got the shot at a super-convenient "drive through" clinic in the community.  Didn't even have to leave the car.  Was I scared?  Yep.  I even stocked up on aspirin, throat lozenges, decongestant to cope with the minor side-effects I expected.  But, much to my surprise, I had ZERO side effects, not even a sore arm!

BTW, I was concerned when CDC announced that going indoors without a mask is low risk.  I disagree with that assessment and STILL wear a mask in crowded places (grocery shopping), esp. since the rapid emergence/spread of the Delta variant and reports of "breakthrough" infections among people who have gotten shots.   But, viruses mutate as long as they find easy opportunities (large #s of unvaccinated, unprotected hosts--people) to do so.   If they have no opportunities to mutate & spread, they usually, eventually burn themselves out.  But we all need to do what we can to CRUSH it (getting shots or wearing masks in public, crowded places).  My greatest fear is that unless more people more quickly get brave enough to get shots, the Delta variant will soon be a mere prelude to a far stronger, worse, and more long-lasting variant that renders ANY vaccines developed useless to stop the pandemic.  That would truly be tragic because WE have the power and means to PREVENT that from happening.

Whatever path you choose, I wish you and your daughter the best.  And whatever you do, I urge you to use utmost caution in crowds.  PLEASE wear masks and socially distance, if not for yourselves, but to protect others and stop the virus from spreading and growing stronger.  

[Kate333]

Rejoycin,

I forgot to add a note of caution about your comment, thinking Ivermectin could be used would treat or cure Covid infections.  Nope...It is a medication commonly prescribed by veterinarians to treat cattle infested with intestinal parasites.🐮

Covid is caused by a virus, not parasites.  So if I were you, unless you live on a cattle ranch, I would just toss it in the trash😉 and stop running out and wasting money on every pseudo-cure touted in social media.  That's why people promote these crazy things on social media:  to GET. YOUR. MONEY. 

If nothing else, ask your personal family doctor and thoroughly research these "easy solution" claims BEFORE wasting your money.  

[Rejoycin]

Thank you for taking the time to respond and share your experience. 

[Rejoycin]

On 7/24/2021 at 12:04 AM, AlwaysLearning said:

Rejoycin, I am sorry to hear that your daughter is on steroids and hope she won't need them for long. And it is great to hear that she is doing well with her gluten-free diet after seven years.

But I fear that both you and your daughter may have been exposed to some misinformation about the risks concerning the covid vaccine. In your posts I see that you believe that there are greater risks for young people being vaccinated than old. My understanding is that young people simply have stronger reactions because they have more robust immune systems. This is a good thing because they are more likely to get all of the benefits of being vaccinated. These stronger reactions are compared to older people whose immune systems are in decline and are not as good at "learning" to recognize the new invaders into their bodies. But I can understand how this could easily be misconstrued by someone who was purposefully trying to share an anti-vaccine message.

I do not want to argue with you, but I do want to urge you to consider the possibility that your sources of information are playing on your fears rather than your intellect. It is not your fault that you have fallen prey to misinformation. Humans are born with this weird thing where we are more likely to believe information if we are in a state of fear. After the year we've had, it would be difficult not to have at least a little fear. And it is also a part of human nature not to want to believe information that others tell us, but to want to be the ones to discover information on our own.

So here is what I would do if I were looking for scientific information. I would do an internet search for the topic along with the word "study". Look for original source information from the researchers who actually conducted the studies if you have biases against any particular news agencies. This way, you can be informed from credible sources and have discovered the information yourself. Also, make sure not to only look for information that confirms what you already think. The goal is to start with a clean slate and seek out information without any bias.

But I do hope that you can reconsider your current stance because your life and the lives of your family members could depend on it. If you come down with covid and become hospitalized, it will be too late to get a vaccine.

Also, if you do decide to get the covid vaccine, I would recommend getting it on a Friday and plan not to do much that weekend. After the first shot, you can expect a lot of arm soreness on the first day, and then some fatigue for a day or two. After the second shot, you can expect a fairly high fever but it should break pretty quickly. You will want to stay home for a day or two. But no matter how bad the arm pain or fever, they are a good sign and indicate that your immune system is doing exactly what it is supposed to be doing. 

Also, my understanding is that the Moderna vaccine contains a higher amount of the vaccine "ingredient" than the Pfizer, which would explain why it doesn't require the super cold storage that Pfizer's does but does have stronger reported reactions, though the vaccines are otherwise very similar. If you are concerned about a younger person having a stronger reaction, then you can look around until you find a source that offers the Pfizer jab.

I see videos all of the time from people who were against getting vaccinated and then caught covid and were hospitalized or had a loved one die of covid, now begging people to change their thinking and to get vaccinated. Perhaps you can do an internet search for a few of those as well. It is also human nature to want to group ourselves with people who are most similar to ourselves, so perhaps you can find it easier to change your opinion if you hear their message.

When it comes to finding a doctor who would go against medical guidelines to excuse your daughter despite that neither celiac or steroids are an issue for getting vaccinated, it might be difficult to find one simply because they would be opening themselves up to a lawsuit if your daughter ended up getting covid and dying.

If you continue to choose to take the risk of not being vaccinated, I wish you luck in avoiding Covid, the Delta variant or any future variants that could be even scarier. You're probably going to want to also research some really effective face masks to help keep you safe.

Thank you for sharing your thoughts and concern. 

[Rejoycin]

On 7/22/2021 at 6:53 PM, Posterboy said:

Rejoycin,

Here is a good thread on Refractory Celiac disease....it might help you to read it. Be sure to read it when you get a chance....it has  a lot of good resources in it.

I also wanted to say to be sure to take your daughter off of Milk/Casein/Lactose for a good 3 or 4 months to see if she doesn't improve.

It is linked in the above thread but I will quote it below for easy reference....

Milk has now been shown to be a trigger in Celiac's for those on a gluten free diet who are still suffering from Refractory Celiac disease....

Here is a great article about it...

Your daughter might also be reacting to Corn in her gluten free diet....

Here is nice article and thread that might help you.

You might want to check for Xanthan Gum in her diet as well.....some Celiac's react to it as well.

See this  thread and follow the link on Celiac Rash still happening on Gluten free Sorghum Floor mixes...

It explains well how Corn and Sorghum both can affect some Celiac's...

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

Posterboy,

Thank you. I had my daughter login and look at the info posted. Appreciate. 

[PlanetJanet]

Ivermectin is also what’s in shampoos and treatments for head lice.  Not likely effective on COVID-19.

[RdHd]

I usually enjoy reading the forum, but this one annoyed me. This person had a simple question and was blasted because of her stance on the covid vaccine. By doing so, it undermines any other responses and, more than likely, the possibility of them returning with any problems. Whether anyone agrees with them about it or not does not matter. Be helpful, and more than anything, be kind. 

[Scott Adams]

5 hours ago, RdHd said:

Whether anyone agrees with them about it or not does not matter. 

It matters because this forum is about helping people make good health choices, and not bad ones. We regularly tell people with celiac disease who eat gluten and cheat on their diets that they should not do this because it could lead to all types of health problems and health risks, including cancer. Is this unkind?

Likewise, if it's unkind to point out to a parent that sending their child who has a compromised immune system back to college during a pandemic without taking a safe and effective vaccine, and thinking that they can simply treat her with Ivermectin if she gets covid-19, then perhaps we're unkind. Sometimes reality is unkind. 

 

 

[trents]

On 7/27/2021 at 4:59 AM, RdHd said:

I usually enjoy reading the forum, but this one annoyed me. This person had a simple question and was blasted because of her stance on the covid vaccine. By doing so, it undermines any other responses and, more than likely, the possibility of them returning with any problems. Whether anyone agrees with them about it or not does not matter. Be helpful, and more than anything, be kind. 

I agree in this case. The OP's original post and request for help was largely ignored by several responders who got side-tracked on the vaccine issue. Obviously, those responders have strong opinions about the vaccine issue and their buttons were pushed. I would note that the OP has consulted with a physician about this issue and has followed the physician's advice which considered the fact that the OP's daughter is currently on an immunosuppressant med. I am speaking as someone who is fully vaccinated. I am not antivax. I do believe that from the beginning, the medical experts have in fact said that the vaccine is not appropriate for people with certain medical conditions.

[Scott Adams]

On 7/22/2021 at 4:40 PM, Rejoycin said:

As for the non-scientific and bad data, the reference I provided, Dr Peter McCullough,  is professor of medicine and vice chief of internal medicine at Baylor University and also teaches at Texas A & M. He is a epidemiologist, cardiologist and internist and has testified before the Texas State Senate related to Covid 19  treatments. He holds the distinction of being the most widely cited physician in the treatment of COVID-19 with more that 600 citation in the National Library of Medicine. 

It looks like Dr. McCullough is no longer affiliated with any of the universities that you believed him to be...they clearly want nothing to do with him given his anti-vaccine positions:

Source:

https://www.medscape.com/viewarticle/958916

Quote

Baylor Gets Restraining Order Against COVID Vaccine Skeptic Doc

The largest nonprofit health system in Texas has secured a temporary restraining order against cardiologist Peter A. McCullough, MD, MPH, a COVID-19 vaccine skeptic who allegedly continued to claim an affiliation with Baylor Scott & White Health months after he entered into a confidential separation agreement in which he agreed to stop mentioning his prior leadership and academic appointments.

Baylor was the first institution to cut ties with McCullough, who has promoted the use of therapies seen as unproven for the treatment of COVID-19 and has questioned the effectiveness of COVID-19 vaccines. Since the Baylor suit, the Texas A&M College of Medicine, and the Texas Christian University (TCU) and University of North Texas Health Science Center (UNTHSC) School of Medicine have both removed McCullough from their faculties.