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

School Problems Again


mouth

Recommended Posts

mouth Enthusiast

hI, ALL. You can read if you want. I just really need to blow off nasty steam. My daughter has had a 2 day field trip planned with school since January. They asked for Dietary needs, and of course I listed the Celiac and all SHE CAN NOT EAT. Do you want to know, that I didn't get a call until last week, and was emailed the menu last friday night. The person at the school sends it to me and says if there is a problem,to call her. I called yesterday, 1st thing (Monday 4/23) and she doesn't call back. Then yesterday I also talked to her guidance counsellor, then today I get a voice mail from the teacher who set up the trip telling me to call all the places myself and set up food for my daughter or send her with food. HOW CAN YOU SEND A CHILD ON A 2 DAY FIELD TRIP WITH FOOD FOR 5 MEALS???!!!!!!!!!!!!!!!! :angry: EVEN BETTER THE TRIP IS 1 WEEK AWAY!!!!!!!! TRIP WAS PAID FOR LAST MONTH :angry: SORRY ALL I JUST HAD TO BLOW OFF THIS STEAM???

HAS ANYBODY ELSE EVER RUN INTO SOMETHING LIKE THIS??? I PLAN TO CALL HER GUIDANCE COUNSELLOR 1ST THING IN THE MORNING AND TELL HER WHAT I WAS TOLD. I DIDN'T ERASE THE MESSAGE- I KEPT AND GET THIS-- THERE IS NOT 1 SINGLE THING ON THE MENU THAT SHE CAN EAT. EXCEPT, MAYBE 1 MEAL- LUNCH THE 2ND DAY, THEY WILL BE IN A TREMENDOUS FOOD COUR (40 PLACES TO EAT) AND THERE IS A DANNON YOUGART PLACE. EVERY ITEM ON THE FOOD LIST FOR THIS TRIP IS A NO-NO!!!!! CAN YOU SEE HER EATING AND ME HAVING TO DRIVE TO BOSTON TO GET HER BECAUSE SHE ENDS UP SICK?????????!!!!!!!!!!!! :angry:

SORRY ALL-- LIKE I SAID I JUST HAD TO BLOW OFF THIS STEAM!!!!!!!!!!!!!!!!!!!!!!!!


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

How old is your daughter? If she makes sure to order or look for fresh fruit or salads and takes a few things in a bag she should be fine for two days. That's the best way to ensure she does not get sick. Hopefully, it will all be okay regardless and she should have a lot of fun on her trip. Good luck!

blueeyedmanda Community Regular

I am sorry to hear you are having trouble at school. It is hard when they won't work with you. I think the only way to assure your daughter is safe is to send the meals with her.

Juliebove Rising Star

That's a tough one. You could send some food with her for two days although I'm sure it won't necessarily be what she wants to eat. I keep 2 slice packs of Ener-G bread onhand. I buy them straight from Ener-G. Not sure if those are available anywhere else. I also keep single serve packages of whatever I can find that my daughter isn't allergic to. Alas she has 7 food allergies so some things are difficult. Perhaps you could send in some single serves of peanut butter and jelly (if you can get them) or a small jar of peanut butter. If you can't get the bread then perhaps you could send a package of rice crackers or some rice cakes?

My daughter likes Boomi Bars and pumpkinseed bars. Either of these things can be a meal substitute in a pinch. She also likes Shelton's turkey sticks. You can get tubes of applesauce, fruit bars or leather that are small and portable. You can mix up bags of trail mix with nuts, seeds and chocolate chips or other small candies. You could put cereal in a bag.

Another person pointed out that she could get salad and fruit. Just be sure she knows to beware of salads with meat on them. My daughter just got sick from a chicken salad at a snack bar. Most of the chicken on those salads comes frozen and has additives in it.

That's really too bad that the school allowed it to get this close to the date before they informed you. This would certainly be more doable if you had more time to plan things.

Cheri A Contributor

((Hugs)) That's ridiculous to leave it to the last minute like this! I'm very interested in how this all turns out. In our district, all the 5th graders go on a week long trip too. Not a problem for my son, who will go next fall. But it will be a huge problem for my dd in a few years. I've already been thinking about it.

Can she have access to a microwave & a section of the frig for some things? Then you could send some things either pre-made by you or packaged and she could heat it up. You could also make some tinkyada pasta salad with fresh veggies for lunches and a couple of dinners. Maybe some packaged cereal for her breakfasts. The pre-packaged applesauce, fruit cups, safe chips or pretzels and some safe cookies for desserts.

I'm not sure I would want to trust that they would know enough to keep her safe eating *their* food.

ryebaby0 Enthusiast

Booooo to the school! Argh, what a pain! But this illustrates perfectly the first principle of parenting celiacs --- We Do It Ourselves. The school assumed you would contact them and tell them what you had planned to do. You assumed they would contact you and make accomodations. It would be nice if we could count on outside help, but we can't. At least be glad they didn't outright forbid you to send food!

In fairness to the school (I work in a school) they really can't do anything about the lack of celiac options at a destination. And I gotta tell you that if my son's schools ever said "Oh, we'll make sure he eats something that's okay" I'd stay awake wondering if someone checked the salad dressing, the rice cereal, the soy sauce....they just can't know the details the way you (and your child) do.

In the end, we have to choose to keep our children home, or close to it, where we've learned what is safe and have stuff available, OR we develop a standing "travel food" routine so they can travel with classmates. My child's school expects us to send a cooler along, and for their part, they take precautions to keep that food safe and separate.I even found an insulated tote bag that carries like a purse, so a teacher can bring his food along if they are not near the cooler. My son's job is to eat, and not complain that it's boring to eat the same stuff all the time.

So he travels with: diamond nut crackers and a jar of peanut butter. KIND bars. Genisoys. Cheese sticks. Gogurt. Trail mix (gorilla munch, mini-m&ms, raisins, sunflower seeds). water. Dole fruit cups. Everythign that is disposable, crush-proof, calorie dense. It's no McDonald's, but at least he gets to go too.....

mandasmom Rookie
Booooo to the school! Argh, what a pain! But this illustrates perfectly the first principle of parenting celiacs --- We Do It Ourselves. The school assumed you would contact them and tell them what you had planned to do. You assumed they would contact you and make accomodations. It would be nice if we could count on outside help, but we can't. At least be glad they didn't outright forbid you to send food!

In fairness to the school (I work in a school) they really can't do anything about the lack of celiac options at a destination. And I gotta tell you that if my son's schools ever said "Oh, we'll make sure he eats something that's okay" I'd stay awake wondering if someone checked the salad dressing, the rice cereal, the soy sauce....they just can't know the details the way you (and your child) do.

In the end, we have to choose to keep our children home, or close to it, where we've learned what is safe and have stuff available, OR we develop a standing "travel food" routine so they can travel with classmates. My child's school expects us to send a cooler along, and for their part, they take precautions to keep that food safe and separate.I even found an insulated tote bag that carries like a purse, so a teacher can bring his food along if they are not near the cooler. My son's job is to eat, and not complain that it's boring to eat the same stuff all the time.

So he travels with: diamond nut crackers and a jar of peanut butter. KIND bars. Genisoys. Cheese sticks. Gogurt. Trail mix (gorilla munch, mini-m&ms, raisins, sunflower seeds). water. Dole fruit cups. Everythign that is disposable, crush-proof, calorie dense. It's no McDonald's, but at least he gets to go too.....

I always hated the idea of my child missing out on an enrichment experience becouse of her celiac..and of course you cant blame the school for its choice of destinations..but a bit more warning is cetainly in order..I think sending a cooler along should work great for 2 days and I would prepare a wonderful gluten-free meal full of favorites as a reward when the trip returns. Lots of postive encouragement to our children when they demonstrate postiive coping skills in high stress eating situations. Its part of the unique parenting responsiblites of raising happy gluten-free kids!!!!!!


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



Celiac.com Sponsor (A8-M):



2kids4me Contributor

We have to do this all the time for scout camp - dried fruits travel well, Thai noodles (I take out the flavour packet they send and substitute chicken bovril powder -its gluten free in Canada). All you need is hot water then. I have dehydrated turkey from a hiking store - add some to the noodles and the hot water plumps them up. Cereal in a baggie / send some disposable bowls.

Glucerna bars, carnation breakfast to go. Pack some homemade treats.

If you have cooler - cheese / yogurt / Grimms pepperoni sticks (if she likes stuff like that)

I like the cooler idea - but an adult should be in charge of it so other children dont raid it.

Once you have done it a few times, its not as hard. It is what we have to do to keep the kids safe.

*A teacher at school, who I thought understood celiac - tried to get my daughter to accept a cone yesterday. I have already fired off a letter explaining how wrong it was. The teacher was handing out ice cream cones ( no one notified me ahead of time)... Kathryn declined and said - I cant eat the cone ...the teacher: " just lick the ice cream off the top", Kathryn said no again..they discussed cc issues and the teacher was saying it's not a problem and to take the cone.

I was so proud of my daughter, and it was kinda cute how she said " the teacher talked to me like I was kid and SHE was explaining contamination, hmmphh, I know what gluten cross contamination is better than her!!"

I got this response from school:

I appreciated her polite refusal and her explanation. It's great that she can be responsible for her own health.

If I do this again in future, I'll grab a bowl and scoop hers first, from a new container, or remind her to bring a cone of her own!

Sounds like I got through to at least one!

Sandy

ryebaby0 Enthusiast

The Scout reference reminded me:

There's a company called Harmony House Foods in NC -- they sell dehydrated food meant for backpacking but it is great stuff for travelling too (or camping). The part that is great is that these are single ingredient packages -- ONLY spinach, ONLY carrots, ONLY broccoli, etc. -- so you can buy just the things on your personal OK list. A sturdy .5 oz package comes with a zip-lock top and the prices vary by item, but all in all it's very reasonable. You can find these guys on the web and order what you want, too. My son is also in Scouts and with a JetBoil, we no longer have to agonize over what will withstand a hike.

joanna

mouth Enthusiast
How old is your daughter? If she makes sure to order or look for fresh fruit or salads and takes a few things in a bag she should be fine for two days. That's the best way to ensure she does not get sick. Hopefully, it will all be okay regardless and she should have a lot of fun on her trip. Good luck!

Dear Turtle & Every body who responded: My daughter is 13, but we are still really new at this. Only 3 months, and I am doing all of the checking. She is a little immature. But, know what ? I spent like 3 hrs on the phone with the restaurants and they were all great!! One refused to let me send a sandwich, even though that is whats being served there-- another a big resturant offered for her more than the budget but she doesnt eat meat asked me to send them her favorite pasta with cooking directions.. All the others were a piece of cake.. Know what ? I feel relieved just like the teacher said i would doing it myself!! It was a little nerve racking but I DID IT!! tHANKS FOR ALL THE SUPPORT!! lyNN

PS the trip is May 3 & 4th.

mouth Enthusiast
The Scout reference reminded me:

There's a company called Harmony House Foods in NC -- they sell dehydrated food meant for backpacking but it is great stuff for travelling too (or camping). The part that is great is that these are single ingredient packages -- ONLY spinach, ONLY carrots, ONLY broccoli, etc. -- so you can buy just the things on your personal OK list. A sturdy .5 oz package comes with a zip-lock top and the prices vary by item, but all in all it's very reasonable. You can find these guys on the web and order what you want, too. My son is also in Scouts and with a JetBoil, we no longer have to agonize over what will withstand a hike.

joanna

Dear Joanna,

Thanks for the new info on Harmony house. IF you look you will find a big thank you. IT IS TO ALL OF YOU WHO HAVE RESPONDED. Under the response for Suicidal Turtle EVERY RESPONSE TEACHES ME MORE...

LYnn

mouth Enthusiast
We have to do this all the time for scout camp - dried fruits travel well, Thai noodles (I take out the flavour packet they send and substitute chicken bovril powder -its gluten free in Canada). All you need is hot water then. I have dehydrated turkey from a hiking store - add some to the noodles and the hot water plumps them up. Cereal in a baggie / send some disposable bowls.

Glucerna bars, carnation breakfast to go. Pack some homemade treats.

If you have cooler - cheese / yogurt / Grimms pepperoni sticks (if she likes stuff like that)

I like the cooler idea - but an adult should be in charge of it so other children dont raid it.

Once you have done it a few times, its not as hard. It is what we have to do to keep the kids safe.

*A teacher at school, who I thought understood celiac - tried to get my daughter to accept a cone yesterday. I have already fired off a letter explaining how wrong it was. The teacher was handing out ice cream cones ( no one notified me ahead of time)... Kathryn declined and said - I cant eat the cone ...the teacher: " just lick the ice cream off the top", Kathryn said no again..they discussed cc issues and the teacher was saying it's not a problem and to take the cone.

I was so proud of my daughter, and it was kinda cute how she said " the teacher talked to me like I was kid and SHE was explaining contamination, hmmphh, I know what gluten cross contamination is better than her!!"

I got this response from school:

I appreciated her polite refusal and her explanation. It's great that she can be responsible for her own health.

If I do this again in future, I'll grab a bowl and scoop hers first, from a new container, or remind her to bring a cone of her own!

Sounds like I got through to at least one!

Sandy

Dear Sandy

You got a real smart one there!! I just learned that there was a boy at my daughters school now in HS that has Celiac and was diagnosed as a baby that he was so bad that when there is a school trip, ALL FOOD IS PACKED FOR HIM FROM HOME IN A COOLER, AND YES, we use a tour company and there are like 4 or more teachers to a bus, and they are in charge of the cooler, so no theft occurs. They even got a microwave put in the roomfor himso he could have an evening snack.. If you look below to Suicidal Turtle you will see a big thank you it is to all of you who have responeded with help.

Thanx! Lynn

mouth Enthusiast
I am sorry to hear you are having trouble at school. It is hard when they won't work with you. I think the only way to assure your daughter is safe is to send the meals with her.

Thanks for your help. Actually, if you look below at my answer to Suicidal Turtle it is meant for all of you who were helpful.. It wasn't that they wouldn't work with me, it was that they dropped this bomb of me calling the restaurants or sending the food a little more than a week before the trip. I was so panicked. But it all has come togethor.

thanx!

Lynn

mouth Enthusiast
That's a tough one. You could send some food with her for two days although I'm sure it won't necessarily be what she wants to eat. I keep 2 slice packs of Ener-G bread onhand. I buy them straight from Ener-G. Not sure if those are available anywhere else. I also keep single serve packages of whatever I can find that my daughter isn't allergic to. Alas she has 7 food allergies so some things are difficult. Perhaps you could send in some single serves of peanut butter and jelly (if you can get them) or a small jar of peanut butter. If you can't get the bread then perhaps you could send a package of rice crackers or some rice cakes?

My daughter likes Boomi Bars and pumpkinseed bars. Either of these things can be a meal substitute in a pinch. She also likes Shelton's turkey sticks. You can get tubes of applesauce, fruit bars or leather that are small and portable. You can mix up bags of trail mix with nuts, seeds and chocolate chips or other small candies. You could put cereal in a bag.

Another person pointed out that she could get salad and fruit. Just be sure she knows to beware of salads with meat on them. My daughter just got sick from a chicken salad at a snack bar. Most of the chicken on those salads comes frozen and has additives in it.

That's really too bad that the school allowed it to get this close to the date before they informed you. This would certainly be more doable if you had more time to plan things.

Hi, thanks for allyour help too. That was the main thing.. That it was last minute. It is also hard because we are so new to this. I WAS panicking.. BUT I DID IT. All taken care of.. Look to my response to Suicidal Turtle. THIS thank you is to all of you who helped.

Thanx!

Lynn

mouth Enthusiast
I always hated the idea of my child missing out on an enrichment experience becouse of her celiac..and of course you cant blame the school for its choice of destinations..but a bit more warning is cetainly in order..I think sending a cooler along should work great for 2 days and I would prepare a wonderful gluten-free meal full of favorites as a reward when the trip returns. Lots of postive encouragement to our children when they demonstrate postiive coping skills in high stress eating situations. Its part of the unique parenting responsiblites of raising happy gluten-free kids!!!!!!

Thanx. It worked out. It was that I panicked because they didnt give me the list of restaurants until last minute. The hard thing is that she eats so few foods.. Always was really picky.. We are still new to this. All she is eating for dinner is gluten-free pasta, gluten-free nuggets, fries, w/veggies, she eats the gluten-free cereal.

anyway if you lookto Suicidal Turtle you will see a thank you that is to all of you who helped me

Lynn

mouth Enthusiast
((Hugs)) That's ridiculous to leave it to the last minute like this! I'm very interested in how this all turns out. In our district, all the 5th graders go on a week long trip too. Not a problem for my son, who will go next fall. But it will be a huge problem for my dd in a few years. I've already been thinking about it.

Can she have access to a microwave & a section of the frig for some things? Then you could send some things either pre-made by you or packaged and she could heat it up. You could also make some tinkyada pasta salad with fresh veggies for lunches and a couple of dinners. Maybe some packaged cereal for her breakfasts. The pre-packaged applesauce, fruit cups, safe chips or pretzels and some safe cookies for desserts.

I'm not sure I would want to trust that they would know enough to keep her safe eating *their* food.

Our district has the 5 day trip for 5th graders. she didnt go on that. She also wasn't diagnosd yet. These are middle school trips and they are a marathon. Let me tell you. They stay 1 night at the hotel and they dont see it till bed that night. and they pack again in the am.. It turned out ok. All the restaurants had gluten-free meals!! I was so surprised. One I sent a pak of tinkydaya, they have a gluten-free menu, just not pasta so i mailed it up.. The tour company and teachers are AWARE and the restaurants have all asked me her name and who her group teacher was. They were all great.. Look to the note that I put at Suicidal turtle == general thank you to all who helped.. you are all wonderful..LYnn

  • 3 weeks later...
mouth Enthusiast
That's a tough one. You could send some food with her for two days although I'm sure it won't necessarily be what she wants to eat. I keep 2 slice packs of Ener-G bread onhand. I buy them straight from Ener-G. Not sure if those are available anywhere else. I also keep single serve packages of whatever I can find that my daughter isn't allergic to. Alas she has 7 food allergies so some things are difficult. Perhaps you could send in some single serves of peanut butter and jelly (if you can get them) or a small jar of peanut butter. If you can't get the bread then perhaps you could send a package of rice crackers or some rice cakes?

My daughter likes Boomi Bars and pumpkinseed bars. Either of these things can be a meal substitute in a pinch. She also likes Shelton's turkey sticks. You can get tubes of applesauce, fruit bars or leather that are small and portable. You can mix up bags of trail mix with nuts, seeds and chocolate chips or other small candies. You could put cereal in a bag.

Another person pointed out that she could get salad and fruit. Just be sure she knows to beware of salads with meat on them. My daughter just got sick from a chicken salad at a snack bar. Most of the chicken on those salads comes frozen and has additives in it.

That's really too bad that the school allowed it to get this close to the date before they informed you. This would certainly be more doable if you had more time to plan things.

Dear Julie & all

Thanks for all the support you gave me when I needed to scream. Well, everything turned out great.

ALL The restaurants Were Very Willing to help. One literally bent over backwards to help.. One asked me to send my daughters favorite pasta w/cooking directions, because she couldn't find it near her. My daughter said she did great!!! MY DAUGHTR HAD A WONDERFUL TIME ON THE TRIP!!!!!!!!!!!!

THANX AGAIN :D !!!!!!!!!!!!!!!!!!!! LYNN

Teacher1958 Apprentice

I am a second grade teacher, and I find it unbelievable that school officials would respond in this way. You gave them plenty of advance notice to make arrangements/provide you with information, and they really dropped the ball. So many times I have parents who spring things on me at the very last minute, and I can't tell you how much I appreciate parents like yourself who are proactive. All I have to say is 'shame on your school!' I'm glad, though, that everything is working out for you.

Brenda

mouth Enthusiast
I am a second grade teacher, and I find it unbelievable that school officials would respond in this way. You gave them plenty of advance notice to make arrangements/provide you with information, and they really dropped the ball. So many times I have parents who spring things on me at the very last minute, and I can't tell you how much I appreciate parents like yourself who are proactive. All I have to say is 'shame on your school!' I'm glad, though, that everything is working out for you.

Brenda

Dear Brenda,

Thanx much for the support too! I can't believe some of the teachers at my daughters school. When she was diagnosed, The Dr's office had to send a letter to the school nurse, and in return she had to hand it out to all my daughters' teachers. Then if something was going on in class with food, they were supposed to get in touch with me and see if she could eat what ever it was or if I had to bring in a replacement for her. Do you want to know NOT one teacher bothered to call, and would just let her eat the stuff that she shouldn't of?? And we are too new for her to know better or fully understand. The only one who did get in touch was the Home Ec teacher, because they cook, and she wants to make sure she doesn't eat what she shouldn't.

Any way, thanx again.

LYnn

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.