Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Does Your Church's Children's Ministry Deal With Your Kid's Food "allergies"


tgrand

Recommended Posts

tgrand Apprentice

My nearly 3 year old daughter, E, has Celiac like me. We are also Casein intolerant. Thankfully, we are doing so much better since our diet change. I was super sick with a laundry list of symptoms, multiple vitamin defs, and Sjogren's to boot. My DD's growth was stunted and she has since been catching up.

Anyway, my issue is with the children's ministry at my church. We have had a few issues with them since her diagnosis. They don't have a real system in place to prevent the accidental feeding of goldfish and animal crackers, other than writing it "on the board". I have tried to express the serious of this problem. (Hello! Her growth was stunted and this has been well documented with her pedi.) I have offered suggestions of how to prevent the problems. They, at one time, started to put a colored sticker on her name tag which was to indicate food allergies, but that didn't last long. This was after she was given goldfish by mistake. Thankfully, she only ate one, before they realized, but... Then, they had an end of summer party where they served hot dogs and other off limit foods. They didn't give anything to her, but now the issue was her feeling totally left out. When I found out (the day of) I gently asked if there was any way I could be informed in advance in the future about such parties and what will be served so that I can bring safe alternatives for E. They said they honestly had never dealt with this before, that E was the only kid they had EVER had that has food allergies and that they would get back to me. That was about 2 months ago. Well, last Wed night she was given animal crackers. A whole serving! God knows how many! She was gassy by the time we got home. She didn't sleep well at all that night and actually was screaming most of the time when she was awake. She hasn't slept through the night since. She's very constipated too. My husband and I were very upset, of course. I know accidents happen. I want to be graceful when people make mistakes, BUT this is serious. Thank God she doesn't have anaphylaxis allergy to wheat or the deadly peanut allergy! So, I am at a loss. I don't know what to do. In our opinion, while we need to be gracious, they haven't exactly shown any real indication that they are working to get a system in place. And doesn't everyone know that food allergies are rising among children? While I find it hard to believe E is the only one they have had to deal with thus far, I KNOW she won't be the last.

So, I'm venting, but also I am looking for tips and suggestions. Perhaps you could even briefly share how your church handles food allergies with kids. I visited my friend's church when her baby was baptized and they didn't do ANY snacks b/c of food allergies and because it was only for 1 hour. (Aren't snacks just a time killer for them? Well, that's another gripe for another day...)

By the way, I did find and order these wristbands online at Open Original Shared Link. They are bright in color and have the words severe food allergy on them. I will use this for sure, but plan to also tell the church so they can get something like this as well for any other kids that may come under their care in the future.

Thanks in advance!

TGrand

Concerned mother in Houston!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

Oh, I'm so sorry.

Our synagogue has been great--they tell me in advance, and my kids (who aren't nearly as severe-reacting as your daughter) bring snacks or gluten-free pizza to Sunday school.

I know this wouldn't be the wisest thing, necessarily, but I'd be AWFULLY tempted to call your Sunday School Director (or whoever the "they" is that you refer to) at home in the middle of the night so she can HEAR your daughter screaming her head off, and say, very calmly, "THIS is why I really need you not to feed my daughter gluten, and if you want us to remain, you need to make sure this doesn't happen again. Churches and synagogues all over the country have been dealing with this sort of thing with peanut-allergic children for years; they are now having to deal with gluten "allergy" as well."

I suppose it would be wiser to print out info from the internet, both about celiac, gluten, and the awful reactions that can happen, AND about how other churches and synagogues are dealing with this, and give it to "them." You can also call other churches and synagogues in your part of town and ask how they deal with it.

With 1/133 affected, they have to be dealing with this.

The more I think about it, the more I think that "they" are either lying, or that anyone with food allergies has left the church for one that handles it better, and "they" like it that way because they don't have to deal with it.

Sorry to be so judgmental about your church--I'm angry with them on your behalf!!!! :ph34r:

taweavmo3 Enthusiast

Ugh, I feel for you! We actually found a new church b/c of this issue. The last church we went to always had a different person in the childcare area w/my daughter, and it became too risky.

I love the church we are at now, and we haven't had any issues. Each kid gets a ticket, and any allergies are printed for them to see. Plus, we send in their own snack and talk to whoever is going to be watching the kids. But, like you mentioned, WHY they actually do snack right before lunch, when it is only an hour, still bugs me. My 6 year old daughter, who gets the sickest w/gluten, actually just goes to regular church with us now instead of her class. She said she was worried about getting sick :( . The teachers are great, and I'm not sure why she worries at church and not at school, except that maybe having to navigate her way around a new crowd of kids is too much. I'm sure, like me, she gets tired of explaining to new people why she can't eat regular food, lol.

Good luck with everything.....I think church can be harder to deal with sometimes than schools when it comes to allergies.

ryebaby0 Enthusiast

I was the Christian Ed director at our church of 450+ for about 10 years, so here's my perspective and some unsolicited honesty...

..Churches have extremely variable and inconsistent volunteers, and policy "enforcement" because of that. Because you tell one person something in no way assures that everyone "knows". Because they try a strategy doesn't mean they'll stick to it, be able to find people to understand it, or otherwise make it effective. Also, in all those years, we had 3 children with serious food issues, and one was mine. It's really possible they've never done this before, and are trying. Also, the litigation issues involved in attempting and failing are HUGE. Many congregations opt to let you leave, rather than face the possibility that you are a vengeful person who will take their building (the result of a lawsuit loss, inevitably) because of a perceived "guarantee of safety" that fails. Vengeful, btw, would look like calling up someone late at night to listen to a child scream....

That being said, they clearly need to do better. (There are several churches in our area that are completely "peanut free", for example!) Our church does not do snacks, both because of cost, and the rising allergy issue. When we do, someone calls anyone identified with an allergy to let them know. (Snacks tend to be jello, apples, and popcorn). We ask any new child's family for medical info. We log it in an attendance book, but honestly we rely on knowing our kids personally. Not a good strategy, imho, but I'm not in charge any more! My advice to first become a regular attendee. Someone who comes sporadically is just not going to get anyone's attention or consistency. Secondly, I would attend with your child until you are sure they've got it figured out. Your presence indicates how seriously you take this. Thirdly, I would arrange for a safe-and-secure stash of snacks for your child, and start e-mailing whomever is in charge each week "Hi, I'm just checking in about snack for this week". The gentle thorn-in-the-side....

People don't have any idea what it takes to manage food issues. They aren't mean, or unkind, or insensitive, they are just clueless. It's our job to gently educate them, which will always take more patience than we feel is necessary (or even available!).

And if none of that works, talk to your pastor, and if that doesn't work, find another church.

Amyleigh0007 Enthusiast

I'm sorry if this is blunt but I feel strongly about these types of situations. You are a parent. It is your job to keep your kids safe. If someone has given your child gluten (poison) several times despite warnings not to I would immediately remove my child from that situation. I would not tolerate it. Why would you want irresponsible people watching your child? I can see one mistake happening but several times is not acceptable. Gluten is poison to your child. Protect your daughter and remove her from that situation. I am sorry ryebaby0 but I disagree with using patience in some situations. When it involves my children being given poison (after many, many warnings) I can't muster up patience. My kids are my top concern.

Swansonjohnson Newbie

We have been on the hunt for a new church because of this exact problem...our 3 year old is gluten-free and we cannot seem to find a "safe" environment for him...any suggestions?

ryebaby0 Enthusiast

I don't think these people are irresponsible, giving them the benefit of the doubt (which they may or may not warrant). I think they are ignorant. And if we, as parents of children with specific issues, get nasty and remove our children from every situation that isn't working perfectly, they will spend their lives at home, or never without us, or tagged as "that difficult child with the difficult parents". Worse, every OTHER child who comes along will be met with apprehension. None of that works to our advantage or our children's safety. It doesn't, imho, have to be an either/or situation. You can correct people, teach people, without resorting to ultimatums, and I do believe that takes patience and a ridiculous amount of time. The ol' honey or vinegar axiom is largely true. I agree it isn't fair, or easy, or ideal, but in my experience at least, it works better.

The question isn't "can I make these people get it" it's "do we want to her to participate so much that we are willing to do whatever it takes to make her safe here". (Not that I am at ALL saying our original post-er isn't doing everything). Each experience will have a different answer. But your mileage may vary :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



taweavmo3 Enthusiast
I don't think these people are irresponsible, giving them the benefit of the doubt (which they may or may not warrant). I think they are ignorant. And if we, as parents of children with specific issues, get nasty and remove our children from every situation that isn't working perfectly, they will spend their lives at home, or never without us, or tagged as "that difficult child with the difficult parents". Worse, every OTHER child who comes along will be met with apprehension. None of that works to our advantage or our children's safety. It doesn't, imho, have to be an either/or situation. You can correct people, teach people, without resorting to ultimatums, and I do believe that takes patience and a ridiculous amount of time. The ol' honey or vinegar axiom is largely true. I agree it isn't fair, or easy, or ideal, but in my experience at least, it works better.

The question isn't "can I make these people get it" it's "do we want to her to participate so much that we are willing to do whatever it takes to make her safe here". (Not that I am at ALL saying our original post-er isn't doing everything). Each experience will have a different answer. But your mileage may vary :)

As for us, I removed my daughter from the last situation b/c there are people who do not care to do things differently. I don't believe everyone is teachable, and they aren't going to learn at my child's expense. It would have been great to have blazed a trail for all food intolerant children who came after us, but sometimes that is just not possible when people choose to remain ingnorant.

Rook's Mommy Apprentice

Saddly we have stopped going. I have been a member of the same church my whole life. And now we don't go expect for holidays. The church nursery staff answer was " we just won't feed the treats to him." When I asked if they could stop doing treats in the play area. Rook had picked up a goldfish off the floor I didn't catch. Twice I snached a cookie out of his hand that a sweet well meaning lady handed him. One woman told me I was being me by doin "this" my son. The kicker when our pastor left and the new one refused to buy the special host. He said that little of a amount can't hurt. :angry:

I hope you can find a better option then me.

AndreaB Contributor

Our old church where we attended when we found out about the problems with gluten still served the gluten treats. We brought something for our children to snack on and they were told to never eat anything unless they cleared it with us. My youngest, who is now 3, wasn't a problem in that church....we were in his class.

Our next church we only attended for a few months, but with my youngest, we were told the crackers were gluten free. I never saw the ingredients to those so I'm not sure of that.....found out some people think pastry flour is safe. :o

We now go to a home church and they don't do treats. We've been told the bread for communion is safe. The lady actually makes it herself most times I believe and she does use rice flour or other thickener in food she cooks for us. They have been great! We do eat meals over there and another person is even making gluten free goodies to bring for us to eat now. She's not gluten free but is trying to include us, which is really nice.

B'sgirl Explorer

At my church they have the same people in every week so they all know about Barrett and his intolerances (he is 2). They keep a bag of his own snacks in the closet so I don't have to worry about bringing them. At church activities I just send his own food with him and inform the leaders. There are a few other kids with Celiac who go to my church and so we just bring our own bread for the sacrament. I wouldn't expect others to provide the food for you. I would just bring it all myself and then you know for sure that it is safe.

Amyleigh0007 Enthusiast
I don't think these people are irresponsible, giving them the benefit of the doubt (which they may or may not warrant). I think they are ignorant. And if we, as parents of children with specific issues, get nasty and remove our children from every situation that isn't working perfectly, they will spend their lives at home, or never without us, or tagged as "that difficult child with the difficult parents". Worse, every OTHER child who comes along will be met with apprehension. None of that works to our advantage or our children's safety. It doesn't, imho, have to be an either/or situation. You can correct people, teach people, without resorting to ultimatums, and I do believe that takes patience and a ridiculous amount of time. The ol' honey or vinegar axiom is largely true. I agree it isn't fair, or easy, or ideal, but in my experience at least, it works better.

The question isn't "can I make these people get it" it's "do we want to her to participate so much that we are willing to do whatever it takes to make her safe here". (Not that I am at ALL saying our original post-er isn't doing everything). Each experience will have a different answer. But your mileage may vary :)

I agree. They are ignornant, but I did not suggest getting nasty. I simply would not leave my child in a dangerous situation. Being given gluten is dangerous. I would not tolerate it. These people were told many times how to handle food for the child but they couldn't do it correctly. I would remove my child. I wouldn't risk my child's health so that others can learn. If the church loses memebers because of irresponsible caregivers then I think maybe things will change and they will hire people who are more capable.

mmcdaniels Apprentice

Our experience at church has been mostly very positive. It has helped tremendously that the special needs ministry director volunteer who works closely with my son and all his volunteers also has Celiac and has become a good friend. He has his own snacks, given by someone with understanding of the issues. Now and then there is a special food reward in our elementary worship service and we haven't been warned in advance. The first time I spent the Sunday School hour hunting for a safe alternative. Last time I didn't find our until later but my friend ended up missing worship service to take care of the situation.

I would suggest to anyone who is concerned about the children's ministry and how they do things is to volunteer, get involved and get to know people. You'll soon find out whether or not you can work with people.

Many families are at our church from 9:45 until after Noon, some from 8:30 until after noon. Not having a snack isn't a viable option, especially with some kids not having breakfast at home. I am a bit concerned about my son's middle and high school years when donuts are provided for all the kids, but he's in 2nd grade so we'll cross that bridge when we get there.

tgrand Apprentice

Thanks to everyone who has offered their opinion, experiences and ideas.

Just to clarify a few things....When we took E to class, we always brought an appropriate snack for her and we would remind the child care worker (annoyingly every time) that she has food "allergies" and that there was a safe snack in her bag. The two specific incidents that occured were when they were short handed and did a switch out of people. I would drop her off with someone and remind them of her special needs. But, then we'd pick her up from someone else who didn't know her and wasn't told at the switch or moved to another room with different workers due to over crowding. I don't like these scenarios even without the food issues, but that's another problem...

So, my husband and I met with the nursery area leader and the children's pastor on Tuesday. They were as nice as they could be - very respectful, listened to us and never made us feel rushed to get the meeting over with. I graciously explained Celiac and how it hurts E. We reminded them that she had experienced stunted growth as a result. We brought an article from GIG called "Understanding Your Student" as a reference. We also brought a copy of an article about the rising number of food allergies among kids, print outs of various resources for food allergies, such as alert stickers, bracelets, etc. AND I included a note from her doctor (not originally for them, but provided for situations in which we need to bring special food) so that they would know this wasn't a fad for us, but a true documented medical condition. We said a lot, but particularly shared MANY ideas/suggestions and so on about changes that could be made to lessen the likelyhood of future problems. We wanted some system to be implemented. There is no perfect system, but having none certainly isn't perfect either. And hey - what they were doing wasn't working. Well, all in all they shot down ALL of our ideas and said this won't work b/c of this reason and that won't work b/c of that. They said it was all too complicated and too much to put on the childcare volunteers. They want to minister to her, but they can't guarantee 100%. They just wanted to keep things as they were. As we have discussed in this thread, some are ignorant and need to learn, but some don't want to learn or change. We offered to do whatever to make it work, including training people. We would have been happy to serve in a capacity to educate teachers, create a system and so on. But, what do you do when they don't care enough to do anything? We have been overwhelmed with such a sense of disappointment and sadness. We love our pastor and his teaching, but I can not continue to take my kid into harm's way week after week. Yes, I agree with a previous poster. Gluten is poison to this family and church is the most dangerous place she goes right now! I just don't get it. I guess it comes down to not truly understanding (ignorance) AND not wanting to change or be inconvenienced. We got our answers, but not the one we wanted to hear. We wanted E to be, from the church's perspective, as valuable and as important to God as any of the other children - someone of great value who's special needs can/should be met.

Please pray for us as we search for a new church home. I know there are churches out there that do a better job. We want to continue to worship God and hope and pray we can find a place where E will be safe too.

Blessings,

TGrand

ptkds Community Regular

I am LDS (mormon) and our church is wonderful! They normally serve fruit, popcorn, and/or cheese. They asked me for a safe list, and they have passed it out to all the people that bring food to church. If they have a question, they call me and ask if something is safe or not. When we had our Halloween party, they made sure that EVERYTHING was safe for my kids! When we have potlucks, they make sure the main dish is safe (turkey, brisket, or whatever meat it is) and I just make sure we have a side and dessert.

I love our little church and the people who do so much for us. They really care for my kids and want them to be safe and feel normal at church. Since 2 of my kids are so young, they make sure to keep an eye on them if there is gluten around and remind the other kids not to share their food.

The nursery is run by 1 or 2 leaders, and sometimes have helpers. But the leaders are in charge of the snacks.

Swansonjohnson - If you are truly searching, go to Open Original Shared Link

I am not pushing religion on anyone, but she asked for suggestions, so I gave her one! So PLEASE don't turn this into a religion fight!

Fiddle-Faddle Community Regular

No worries, ptkds!

I am not searching, but appreciate the link nonetheless. I had no idea that such a link existed, and it's always a good thing to learn about religions other than one's own.

It's also nice to hear that some churches are handling food allergies well! :)

Thanks for sharing.

B'sgirl Explorer
I am LDS (mormon) and our church is wonderful! They normally serve fruit, popcorn, and/or cheese. They asked me for a safe list, and they have passed it out to all the people that bring food to church. If they have a question, they call me and ask if something is safe or not. When we had our Halloween party, they made sure that EVERYTHING was safe for my kids! When we have potlucks, they make sure the main dish is safe (turkey, brisket, or whatever meat it is) and I just make sure we have a side and dessert.

I love our little church and the people who do so much for us. They really care for my kids and want them to be safe and feel normal at church. Since 2 of my kids are so young, they make sure to keep an eye on them if there is gluten around and remind the other kids not to share their food.

The nursery is run by 1 or 2 leaders, and sometimes have helpers. But the leaders are in charge of the snacks.

Swansonjohnson - If you are truly searching, go to Open Original Shared Link

I am not pushing religion on anyone, but she asked for suggestions, so I gave her one! So PLEASE don't turn this into a religion fight!

I am Mormon too! (I posted earlier on this topic) and that was the church I was referring to when I said we had stable nursery leaders. They have been really good about everything down to cross-contamination. They wipe down the table and have B sit in the same spot every time, far enough from the other kids so he doesn't steal their snacks. They watch to make sure he doesn't pick anything up off the floor. They prepare his food before touching anyone elses so that he doesn't get any kind of cross-contamination. It is so nice to be able to enjoy church without worrying about him!

  • 2 weeks later...
Cheri A Contributor

I'm coming to read this thread late, but I wanted to encourage you that I think that you have done all of the right things in your meeting. It is sad that they do not want to keep your dd safe and let you help come up with a system to keep her safe. They WILL have to deal with this again.

I am sure that you will find another church that will meet all of your needs and be able to keep her safe.

I work at church part-time, but we attend another one because I wanted my kids to have a local connection. The one that I work with is farther away, and I have great friends there. I haven't found another church that had paid part-time child care workers in the nursery, toddler, and preschool rooms, either. That said, we used to serve animal crackers, juice, etc. My dd is now a 9-year-old, but she has had allergies her whole life. It was really difficult to keep an eye on her all the toddler years and she picked up many crackers that she shouldn't have, even with me in the room. It gets easier as they get older and can take responsibility. By the time she was in preschool, she KNEW that it made her sick to eat the other food and she wasn't tempted. She could also explain to the leader in the room that she had her own snack, etc. Anyway, all of that to say that until a Children's Ministry employee had a child diagnosed with food allergies, it was very difficult. Once her child was diagnosed, everything changed. They now buy bright yellow round stickers that say "I am allergic to _____" I can get the website for you if you want. We also do NOT even allow food in the rooms anymore. If a child needs a snack, his or her parent can bring it and come and get them out of the room to let them eat it, and then they bring them back. Of course, babies can have bottles of milk. When they reach the toddler room, sippy cups can only have water in them OR we have to sit with them to have the milk bottle. There is no walking around with cups of milk. I'm sure that it offends some because of the no food rule, but it ensures safety for those with allergies. Most people seem to be fine with it.

My dd has gotten good at delayed gratification. They give candy sometimes and they have communion in Children's Church once/month. I send her a bread cube or a cracker and she takes that with everyone else. We attend a large church and there is no way that they could accomodate that. I bring her own food with us to church events, just like I do anywhere else. It is just easier that way to make sure that she is safe. We belong to a small group, and I did ask that they not have peanut products out or served, and they were happy to do that.

pickle Newbie

It sounds like you have done everything you can do to communicate with the people in charge. It makes me so :(:angry::o to hear how they responded.

It's so hard being the momma bear protecting our cubs! I hope you find a solution that works for you!

home-based-mom Contributor

I find it particularly sad and also disturbing that some churches don't make the effort to meet the needs of people who actually *have* needs! Remember that churches are made up of imperfect people. :( Our church has lost people whose needs we didn't meet and gained people whose needs we did meet. Somewhere out there is a church where you can plug in and feel at home.

I work in the nursery once a month. I brought in a box of Gorilla Munch to protect ME from their gluteny slobber! :lol::lol::lol: We now have a toddler who is totally off dairy. His mom reminds us every time and also writes it down in the "special instructions." The other lady I work with has several celiac relatives so at least in our case we are highly aware of food intolerances.

In AWANA part of the registration is to list anything we need to know about the child, including food issues. That way we just buy candy on the "safe" list and that is what everyone gets. They don't need to know why we have one kind and not another. ;)

  • 2 weeks later...
aprilleigh1624 Newbie
My nearly 3 year old daughter, E, has Celiac like me. We are also Casein intolerant. Thankfully, we are doing so much better since our diet change. I was super sick with a laundry list of symptoms, multiple vitamin defs, and Sjogren's to boot. My DD's growth was stunted and she has since been catching up.

Anyway, my issue is with the children's ministry at my church. We have had a few issues with them since her diagnosis. They don't have a real system in place to prevent the accidental feeding of goldfish and animal crackers, other than writing it "on the board". I have tried to express the serious of this problem. (Hello! Her growth was stunted and this has been well documented with her pedi.) I have offered suggestions of how to prevent the problems. They, at one time, started to put a colored sticker on her name tag which was to indicate food allergies, but that didn't last long. This was after she was given goldfish by mistake. Thankfully, she only ate one, before they realized, but... Then, they had an end of summer party where they served hot dogs and other off limit foods. They didn't give anything to her, but now the issue was her feeling totally left out. When I found out (the day of) I gently asked if there was any way I could be informed in advance in the future about such parties and what will be served so that I can bring safe alternatives for E. They said they honestly had never dealt with this before, that E was the only kid they had EVER had that has food allergies and that they would get back to me. That was about 2 months ago. Well, last Wed night she was given animal crackers. A whole serving! God knows how many! She was gassy by the time we got home. She didn't sleep well at all that night and actually was screaming most of the time when she was awake. She hasn't slept through the night since. She's very constipated too. My husband and I were very upset, of course. I know accidents happen. I want to be graceful when people make mistakes, BUT this is serious. Thank God she doesn't have anaphylaxis allergy to wheat or the deadly peanut allergy! So, I am at a loss. I don't know what to do. In our opinion, while we need to be gracious, they haven't exactly shown any real indication that they are working to get a system in place. And doesn't everyone know that food allergies are rising among children? While I find it hard to believe E is the only one they have had to deal with thus far, I KNOW she won't be the last.

So, I'm venting, but also I am looking for tips and suggestions. Perhaps you could even briefly share how your church handles food allergies with kids. I visited my friend's church when her baby was baptized and they didn't do ANY snacks b/c of food allergies and because it was only for 1 hour. (Aren't snacks just a time killer for them? Well, that's another gripe for another day...)

By the way, I did find and order these wristbands online at Open Original Shared Link. They are bright in color and have the words severe food allergy on them. I will use this for sure, but plan to also tell the church so they can get something like this as well for any other kids that may come under their care in the future.

Thanks in advance!

TGrand

Concerned mother in Houston!

I know just how you feel. We have different people in the toddler room (rachel is 2) each week and I always bring my own snacks for her. But I feel like most of the time they are feeding the kids the whole hour i am in church. When there are t ladies in there that gave her gold fish on time ieither dont go to church or I take her in with me. But I am concerned because we had to just put rachel on an all liquid diet - peptamen jr and they are practicing for the christmas show so i dont want her to miss going to church before christmas but i also dont know what to do. I dont trust anyone outside of my family with her. I am soory that you are having these same problems. I guess all i can say is try to have a sit down and ask them if they can hear you out and possibly stop snakc time. (i am waiting to hear back from my church on that).

Good Luck

April

mom to rachel leigh dx 4-08

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748

    Stephanie94
    Newest Member
    Stephanie94
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.