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Gluten-Free Daughter In College


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16 replies to this topic

#1 atzmmommy

 
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Posted 01 October 2011 - 02:39 AM

I need advice.

My daughter has been following a gluten free diet for more than 2 years. She has suffered from bowel pain since birth, but it took 15 years of trials of diet change and different medications/supplements before she did a gluten free trial. Within a week of going gluten free, her moods had lightened and the pain had almost vanished. She has never been formally diagnosed with celiac disease because her pediatrician took the stand that we could do a biopsy to confirm our self-diagnosis, or, if not eating gluten alleviated her symptoms and made her feel better, she should simply not eat gluten. I thought that was a better choice than an invasive biopsy.

She just started college, at a very un-supportive campus. She has found that the dining hall staff is uneducated about gluten -- they can't tell her if something is made with it because they don't know what it is -- and most entrees are made with sauce and/or breading. She is eating fresh fruit, salads with beans and cheese, peanuts and peanut butter, yogurt, etc. She does well at breakfast where there are eggs, grits, and a few other gluten free dishes. There is a place on campus that is serving gluten free products, but it is not available with the meal plan swipes and is not in a convenient location for daily visits. She has tried to get gluten free bread from the dining hall, but it takes them too long to get it for her. By the time they have retrieved it, her friends have finished their meal and are ready to leave.

All that being said, she is having a hard time keeping weight on. She lost some weight over the summer after working at a church camp where the food options were limited also. She is 5'8" and is down to around 115. She is an athlete -- loves working out, running, etc. She grew up as a competitive figure skater, has a black belt in karate, and dances. She has joined the ultimate frisbee team and loves it.

The problem is that she jammed her finger during move-in weekend. When she sought help from the health center, they said there was something terribly wrong with her, drew a lot of blood -- found nothing wrong, of course. Now they are forcing her to seek help for her "eating disorder." They have told her that if she doesn't comply with gaining weight, they will remove her from the school. She is maintaining that she has no eating disorder. She has not seen a doctor to give that diagnosis, but has been sent to nutritionists and counselors at a local eating disorder clinic. She is being forced to make these appointments even when they conflict with classes and yesterday missed a test and is having to take a zero.

Any advice???
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#2 ravenwoodglass

 
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Posted 01 October 2011 - 04:50 AM

Would her doctor write a note stating that for her the gluten free diet is a medical need? The disability office at the college may be able to help so do contact them and explain what is going on. The school needs to make safe food available for her. Some schools will let her put a microwave and small frig in her room and allow you to opt out of the meal plan and refund that money so she can use it to purchase her own food.
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celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 pricklypear1971

 
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Posted 01 October 2011 - 05:50 AM

Get a letter from her Pediatrician detailing the situation. Wave it in the faces of those who are harassing her.

Teach her to carry her own bread to the cafeteria.

She's going to have to start taking food to the cafeteria or eating at other places, other times. She has to eat - and eat healthily. She has to learn how to manage her food. It's tough, especially at that age, at school.

If she isn't taking supplements now would be a good time to start.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 frieze

 
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Posted 01 October 2011 - 07:05 AM

Lawyer up, these false dx will follow her for the rest of her life. You need to get her record cleaned up as well as the harassment to stop. I think it would be a "cease and disist" letter.
get on it now.
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#5 atzmmommy

 
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Posted 01 October 2011 - 10:43 AM

Thank you for all the advice. I will make these suggestions to her, especially taking her own bread.

What kind of lawyer would help here?? I'm not sure we could get an accurate diagnosis at this point since it has been 2.5 years since she has eaten much gluten.

Does anyone have ideas on how she can put on pounds?




Lawyer up, these false dx will follow her for the rest of her life. You need to get her record cleaned up as well as the harassment to stop. I think it would be a "cease and disist" letter.
get on it now.


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#6 kareng

 
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Posted 01 October 2011 - 11:03 AM

I know this won't be a popular post but -

I just want you to really think about this. What stood out to me was that she was this skinny looking on move- in day. Not 2 months after trying to eat at school. You even said she put herself in a position to not eat much all summer. She also participates in 2 activities that have a lot of eating disorders. I hope that's not the case.

I think she needs better food choices at school. Can she get to a grocery? She could get her own bread, crackers, cheese, cold cuts to supplement what she eats in the cafeteria. If she can get to a store, why isn't she?

Perhaps a note from you to the counselor to explain the gluten free thing might help.

Good luck.
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#7 pricklypear1971

 
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Posted 01 October 2011 - 11:06 AM

Everyone responds to different things (gaining weight). There are a few threads in here about it - search for them.

You need to get with the doctor you mentioned in your first post.

Any attorney could handle this. If you can find one that specializes in medical or education or psychiatric diseases (since that's what they are alleging) civil rights??? Discrimination??? The best is to find one that you feel comfortable with and doesn't create more problems - quiz him/her thoroughly.

Get your daughter's medical files from school, the referral clinic, etc. NOW before you do anything because it will be difficult once they receive contact from an attorney.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 pricklypear1971

 
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Posted 01 October 2011 - 11:16 AM

I know this won't be a popular post but -

I just want you to really think about this. What stood out to me was that she was this skinny looking on move- in day. Not 2 months after trying to eat at school. You even said she put herself in a position to not eat much all summer. She also participates in 2 activities that have a lot of eating disorders. I hope that's not the case.

I think she needs better food choices at school. Can she get to a grocery? She could get her own bread, crackers, cheese, cold cuts to supplement what she eats in the cafeteria. If she can get to a store, why isn't she?

Perhaps a note from you to the counselor to explain the gluten free thing might help.

Good luck.



I would think the explanation behind the referral and threats to remove her from school will be obvious in her medical records at school and the clinic which is why I advise getting them.

Also, check the school records - whoever is threatening to remove her from school should have written a letter, at least. Get those records.

After you read the records you should know more, and be able to help her as needed.

Good luck!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 eatmeat4good

 
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Posted 01 October 2011 - 06:33 PM

Wow! That should not be happening. Someone needs to be educated about Celiac Disease/Gluten Intolerance. have you talked to her therapist?? I would think the family could be included in therapy and if I was the mom I'd be mad as hell that they are giving her psychiatric diagnoses without consulting her Dr. as to whether there is in fact anything wrong with her. You never give a client a diagnosis of eating disorder if there is a medical explanation for the problem. I'd try to contact the therapist and the Eating Disorder Clinic to see if they have any knowledge of Celiac/Gluten Intolerance. If you have $ great...get a lawyer and let him ask the questions. This sounds outrageous to me. I'm sorry for your predicament. And more importantly for hers. That's terrible. Of course your daughter will have to sign the appropriate releases of information for you to be included...but my god...it sounds abusive to me. I'd be having some words with the college administrators, cooks, eating disorder cinic and whoever it was who referred her there. She is there for education that you are paying for. Omg!
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#10 Roda

 
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Posted 01 October 2011 - 07:02 PM

I think there is a very high chance that over the summer program and eating at the college cafeteria, that she is getting gluten and cross contamination. Both could be causing the weight loss/lack of weight gain. You need to advocate for her so she can eat safely either in the cafeteria or get a waiver for the meal program so she can cook/feed herself.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#11 mushroom

 
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Posted 01 October 2011 - 07:59 PM

Wow, that really stinks. They make her eat stuff that is probably gluten cc'd, makes her lose weight, and then claim she has an eating disorder?? She definitely needs a letter from her doc that she can't have any gluten and to opt out of the meal program. She needs a fridge and a microwave to cook for herself. It is definitely time for some good, old-fashioned mom intervention. Get copies of her records, send a letter of record to the school with the doctor's letter and threaten legal action if they don't straighten up. I don't think you actually have to do the legal thingy yet -- generally the threat of it wil get them to review what they are doing and come to some compromise.
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#12 Takala

 
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Posted 01 October 2011 - 09:56 PM

Sorry for the skepticism, but.... I am really having trouble with the entire premise of this post.

I can't imagine somebody letting any sort of private organization or business entity dictate when and what somebody else should eat, and when and what they should be "forced" to see a therapist - unless they were in a prison facility, not a school. This entire issue should have been dealt with before a dime was paid for the prison semester. (Yes, I know, mandatory freshman residence on campus, mandatory meal plan, blah, blah, yadda yadda. That's the point- this isn't appropriate and doesn't work. )

Missed a class and had to take a zero ? Something doesn't wash here. Perhaps it is time for a visit and a heart to heart sit down conversation about switching schools.
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#13 kareng

 
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Posted 02 October 2011 - 06:01 AM

Sorry for the skepticism, but.... I am really having trouble with the entire premise of this post.

I can't imagine somebody letting any sort of private organization or business entity dictate when and what somebody else should eat, and when and what they should be "forced" to see a therapist - unless they were in a prison facility, not a school. This entire issue should have been dealt with before a dime was paid for the prison semester. (Yes, I know, mandatory freshman residence on campus, mandatory meal plan, blah, blah, yadda yadda. That's the point- this isn't appropriate and doesn't work. )

Missed a class and had to take a zero ? Something doesn't wash here. Perhaps it is time for a visit and a heart to heart sit down conversation about switching schools.



I have kids this age. Your right, it sounds a bit off. That's why I told her to really think about what is going on. The mom only knows what the kid is telling her. Makes no sense that they didn't figure out the food thing before starting school. Its hard because colleges can't talk to the parents about some things because the kids are "adults". My kid is pretty far away for college, but if I thought his health was in trouble, I'ld get there & stick my nose in.

I could see a school might force someone to get treatment. But it would have to be an obvious problem. When a kid who is depressed, gets alcohol poisioning, eating disorders & then dies or gets hurt, people sue the school for not doing something,

I imagine her daughter weighed less than 115 - that's just what the girl told her mom. If they put every skinny freshman in therapy, it would just have to become a class. The fact that she came to the school on the first day looking anorexic, has nothing to do with the school food at that point.

Currently, I know 3 freshman girls in treatment for eating disorders whose mothers deny they have an issue. They are proud of how thin & what good self-control the girls have. I know one who always says something about how wonderful that her 5'4 daughter weighs less than 100 lbs.
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#14 dilettantesteph

 
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Posted 02 October 2011 - 07:02 AM

When my son was first diagnosed the school wouldn't accept the diagnosis despite doctors letters and meetings. This was middle school and not college. They kept exposing him to gluten in the classroom by not letting him leave when passing it around. He was required to handle it and he is sensitive enough that it made him sick. They took him out of classes to attend counseling sessions for the school phobia diagnosis that the school social worker had given him. I don't know how the social worker's diagnosis trumped the doctor's, but that is what happened. It took many more meetings and doctors letters, but it did get cleared up eventually.

This could be what is really happening, or there could be more to it.

My perfectly healthy athlete (cross country and track) daughter is just as skinny. I'm pretty thin myself, and so is my son. Some people are just built that way. Her doctor is totally accepting of it.

Good luck mom.
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#15 sariesue

 
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Posted 02 October 2011 - 06:56 PM

I'm sorry, something sounds really fishy about this situation, like the daughter isn't being truthful. Like, why the girl couldn't change the time of the counceling appt to a time that didn't conflict with her test. Or why she couldn't and DIDN'T talk to her teacher and make other arrangements for her test. Like taking the test at a different time. I was able to make up a test that I missed due to a dr appt in college, you do need to put in a little effort though by contacting the teacher, arranging a time outside of class, and providing a note. She could have easily gotten a note from the counseling center to prove she was there during the test. So why didn't she do any of that?
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