Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Daughter Freshman In College


wildwood

Recommended Posts

wildwood Apprentice

My daughter was told she likely has celiac disease. She found out in mid August two weeks before she went away to college. It has been difficult for her to say the least. Food services has been helpful to her, but she is finding out the hard way where gluten hides. For instance, they started offering gluten free pasta last week. She was thrilled and ordered a serving of the pasta with marinara sauce assuming the sauce would be safe. Well she felt horrible all the next day. She went to food services and checked with the manager. As it turns out the marinara has gluten in it as well as all the other sauces offered! She said now she eats it with just butter or oil on it. She went from being thrilled that her dorm was right next to the dining hall to feeling bad because now it is a constant reminder of all she cannot eat. She is keeping her chin up, but I know it gets her down.

I am going to visit her in a couple of weeks. I was thinking I would bring her some gluten-free pasta sauces. She said she is pretty sure they would heat them up for her in the dining hall. Can anyone recommend any? Does anyone have any unique ideas of what I can include in a care package that might help her with this transition and brighten up her day?

We are so new to this. It is overwhelming!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Ragu - If wheat or gluten are in the ingredients, they will list them. They do not hide ingredients.

Care Package: Thai Kitchen has some easy to prepare meals. Does she have access to a microwave?

Open Original Shared Link

Lara bars

Trail mix (make sure gluten free)

Pamela's cookies

I dont eat any processed food myself, but these come to mind.

Link to comment
Share on other sites
wildwood Apprentice
Ragu - If wheat or gluten are in the ingredients, they will list them. They do not hide ingredients.

Care Package: Thai Kitchen has some easy to prepare meals. Does she have access to a microwave?

Open Original Shared Link

Lara bars

Trail mix (make sure gluten free)

Pamela's cookies

I dont eat any processed food myself, but these come to mind.

Thanks, those are good ideas. She does have a microwave. We do not eat much processed food here at home, but unfortunately her options are very limited at school. Next year, I will try and make sure she get one of the dorm suites that has a small kitchen or something off campus so she can prepare her own food.

Link to comment
Share on other sites
Darn210 Enthusiast
Thanks, those are good ideas. She does have a microwave. We do not eat much processed food here at home, but unfortunately her options are very limited at school. Next year, I will try and make sure she get one of the dorm suites that has a small kitchen or something off campus so she can prepare her own food.

Is it possible to see if she can transfer into or get on a waiting list for one of the dorm suites for this year . . . there always seems to be a student fall out rate in the beginning. I think it would be much easier if she could be in control of her own food. Celiac disease is covered by the ADA. If she has an official diagnosis, I believe they are required to accomodate her . . . that may get you to the top of the list for a suite. I don't know the ins and outs, maybe somebody else can say what she is legally entitled to.

Classico red sauces are OK, too.

Link to comment
Share on other sites
purple Community Regular

Bertoli alfredo sauce and Prego Traditional style spaghetti sauce...careful of sauces with meat.

My dd was a freshman last year and we went thru this in Feb.

Chocolate

Refried beans and gluten-free tortilla chips

items and a dish to make layered mexican dip, veggies to go on it

Thai microwaved noodles

Popcorn

celery, apples, carrot six, other fruits and veggies

peanut butter, jelly

yogurt

nuts and seeds

homemade cookies

soft kleenex-lotion kind- very comforting during a crying spell or cold

fruit cups

gluten-free rice cakes (some people have trouble with Quaker)

gluten-free toiletries-lotion, shampoo, etc.

snacks to take to dorm/room parties and movie night

When I learned how to cook gluten-free I made entrees almost every day and put them in baggies and a plastic container and labeled them(still do). Then took my dd some when ever I could to put in her fridge and a couple for her freezer. It took a couple of days to thaw the fridge ones out so she could eat for a week.

Find out where the gluten-free restaurants are for her and list whats safe on the menu.

A gluten-free cake for her birthday to share with her new dormies.

Holidays are coming so I am looking for gluten-free recipes like the "old" favorites to make...dd first holidays gluten-free this year.

Link to comment
Share on other sites
wildwood Apprentice
Bertoli alfredo sauce and Prego Traditional style spaghetti sauce...careful of sauces with meat.

My dd was a freshman last year and we went thru this in Feb.

Chocolate

Refried beans and gluten-free tortilla chips

items and a dish to make layered mexican dip, veggies to go on it

Thai microwaved noodles

Popcorn

celery, apples, carrot six, other fruits and veggies

peanut butter, jelly

yogurt

nuts and seeds

homemade cookies

soft kleenex-lotion kind- very comforting during a crying spell or cold

fruit cups

gluten-free rice cakes (some people have trouble with Quaker)

gluten-free toiletries-lotion, shampoo, etc.

snacks to take to dorm/room parties and movie night

When I learned how to cook gluten-free I made entrees almost every day and put them in baggies and a plastic container and labeled them(still do). Then took my dd some when ever I could to put in her fridge and a couple for her freezer. It took a couple of days to thaw the fridge ones out so she could eat for a week.

Find out where the gluten-free restaurants are for her and list whats safe on the menu.

A gluten-free cake for her birthday to share with her new dormies.

Holidays are coming so I am looking for gluten-free recipes like the "old" favorites to make...dd first holidays gluten-free this year.

Those are all good ideas. What are some of the meals that you make that freeze well? She has a very small freezer, but I figure I can bring her a least a few meals to keep in there. Thanks for suggestions.

Link to comment
Share on other sites
wildwood Apprentice
Bertoli alfredo sauce and Prego Traditional style spaghetti sauce...careful of sauces with meat.

My dd was a freshman last year and we went thru this in Feb.

Chocolate

Refried beans and gluten-free tortilla chips

items and a dish to make layered mexican dip, veggies to go on it

Thai microwaved noodles

Popcorn

celery, apples, carrot six, other fruits and veggies

peanut butter, jelly

yogurt

nuts and seeds

homemade cookies

soft kleenex-lotion kind- very comforting during a crying spell or cold

fruit cups

gluten-free rice cakes (some people have trouble with Quaker)

gluten-free toiletries-lotion, shampoo, etc.

snacks to take to dorm/room parties and movie night

When I learned how to cook gluten-free I made entrees almost every day and put them in baggies and a plastic container and labeled them(still do). Then took my dd some when ever I could to put in her fridge and a couple for her freezer. It took a couple of days to thaw the fridge ones out so she could eat for a week.

Find out where the gluten-free restaurants are for her and list whats safe on the menu.

A gluten-free cake for her birthday to share with her new dormies.

Holidays are coming so I am looking for gluten-free recipes like the "old" favorites to make...dd first holidays gluten-free this year.

Those are all good ideas. What are some of the meals that you make that freeze well? She has a very small freezer, but I figure I can bring her a least a few meals to keep in there. Thanks for suggestions.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



wildwood Apprentice
Is it possible to see if she can transfer into or get on a waiting list for one of the dorm suites for this year . . . there always seems to be a student fall out rate in the beginning. I think it would be much easier if she could be in control of her own food. Celiac disease is covered by the ADA. If she has an official diagnosis, I believe they are required to accomodate her . . . that may get you to the top of the list for a suite. I don't know the ins and outs, maybe somebody else can say what she is legally entitled to.

Classico red sauces are OK, too.

I will discuss this with her when I see her in a couple of weeks. If she wants to proceed, we can go to housing services while I am there and see what we need to do. Thank you very much for the good advice.

Link to comment
Share on other sites
purple Community Regular
Those are all good ideas. What are some of the meals that you make that freeze well? She has a very small freezer, but I figure I can bring her a least a few meals to keep in there. Thanks for suggestions.

Spaghetti with veggies mixed in

Lasagna with veggies mixed in

Chili

Rice dishes with different sauces or veggies

Mini potpies with assorted fillings-made in a jumbo muffin pan

Taco meat for chips or hard shells (beef or chicken)

Taquito or Fajita meat for chips or hard corn shells

Beanie wienies

Pizza slices

BBQ chicken meat for chips

Soups like minestrone made with rice instead of pasta

Enchiladas

Beans, corn and rice casserole to just eat or make nachos with

Treats made and frozen ahead of time- don't need to be kept in the fridge when she gets them

Fresh breakfast burritos or frozen "breakfast" in a pot pie

DD didn't like the chicken alfredo with rice noodles frozen-she said they were soggy

I made a mexicali cornbread casserole-soggy too

I drop it in sandwich baggies, then I put 2 entrees into a flat square container then labeled with the item and date. I put mini muffins or cookies in all the little spaces so she gets a surprise sometimes and it fills up the space too. Just wrap them individually in plastic wrap. I could send her about 5 containers at a time, 2 for the freezer and 3 for the fridge. She didn't eat in the lunch room much...all gluten but fruit which was usually offered in the morning.

Link to comment
Share on other sites
kbtoyssni Contributor

Chili always freezes well.

This PB cookie recipe travels well and doesn't go stale - they'll last for a several weeks.

PB cookies

1 c. Peanut Butter

1 egg

1 c. sugar ( I substitute 1/4 c. sugar and 3/4 c. splenda since my husband is diabetic and it works great)

1t vanilla

mix, roll into balls and press out on cookie sheet. Bake 10-12 mins at 375. I make 4 batches at once and am set for about 10 days. They're delicious and EASY and portable.

Link to comment
Share on other sites
wildwood Apprentice

Thank you for the good suggestions.

Link to comment
Share on other sites
mandasmom Rookie

One of my daughters favorites is one of those indivdual packages of microwavable brown rice (minute rice or trader joe) covered with a can of sheltons chili--nutricious, easy and calorie reasonable

Peanut butter is a college staple--works great on rice cakes

lots of fruit and nuts

indidual packages of salad dressing, soy sauce and crakers (glutino makes these packages) will help her easily take along what she needs to join her new friends for meals.

I think a much more indepth meeting with the college dining facility is in order--most acadmeic institutions have an ADA officer---that person should accompany her to that meeting and be sure she gets all of the accomdations neccessary! We tried really hard to keep our daughter int he dorm--meal time is a h uge social thing for college freshman and she will likley feel another sense of loss if she has to give that up too!!

Good luck to her and kudos to you for allowing her to spread her wings and find her way!!

Link to comment
Share on other sites
wildwood Apprentice
One of my daughters favorites is one of those indivdual packages of microwavable brown rice (minute rice or trader joe) covered with a can of sheltons chili--nutricious, easy and calorie reasonable

Peanut butter is a college staple--works great on rice cakes

lots of fruit and nuts

indidual packages of salad dressing, soy sauce and crakers (glutino makes these packages) will help her easily take along what she needs to join her new friends for meals.

I think a much more indepth meeting with the college dining facility is in order--most acadmeic institutions have an ADA officer---that person should accompany her to that meeting and be sure she gets all of the accomdations neccessary! We tried really hard to keep our daughter int he dorm--meal time is a h uge social thing for college freshman and she will likley feel another sense of loss if she has to give that up too!!

Good luck to her and kudos to you for allowing her to spread her wings and find her way!!

Thanks for your reply. These are good ideas. She just called me to say she ate some soup and was so sick this afternoon her professor excused her from class. I told her you idea for the individual packets of soy sauce and she liked that idea very much. I will look into some gluten-free canned soups for her also. I feel she is starting to get discouraged. I am glad I am going to see her next weekend. I have been gathering alot of ideas for her and I can try and reinforce to her where gluten may be hiding. I know she will find her way, but I am hoping she does not let it get her down. I try to keep things as upbeat as possible and to let her know she will get the hang of it. She will just be learning alot along the way. I will also be discussing with her your suggestion of a meeting with the dining facility. I really don't think she would be happy leaving the dorm because that is where all the freshman reside. If I were able to get her into a suite she would be with upper classman. She may be okay with that idea. It is another option I will offer her although I suspect for now she will want to stay put because she has made some nice friends where she is. Thanks again for your suggestions :)

Link to comment
Share on other sites
JNBunnie1 Community Regular
Thanks for your reply. These are good ideas. She just called me to say she ate some soup and was so sick this afternoon her professor excused her from class. I told her you idea for the individual packets of soy sauce and she liked that idea very much. I will look into some gluten-free canned soups for her also. I feel she is starting to get discouraged. I am glad I am going to see her next weekend. I have been gathering alot of ideas for her and I can try and reinforce to her where gluten may be hiding. I know she will find her way, but I am hoping she does not let it get her down. I try to keep things as upbeat as possible and to let her know she will get the hang of it. She will just be learning alot along the way. I will also be discussing with her your suggestion of a meeting with the dining facility. I really don't think she would be happy leaving the dorm because that is where all the freshman reside. If I were able to get her into a suite she would be with upper classman. She may be okay with that idea. It is another option I will offer her although I suspect for now she will want to stay put because she has made some nice friends where she is. Thanks again for your suggestions :)

I would add only that maybe you could get her a hot plate so she can boil eggs. If you put a splash of vinegar in with your eggs with the boiling water it makes them easier to peel too.

Link to comment
Share on other sites
wildwood Apprentice
I would add only that maybe you could get her a hot plate so she can boil eggs. If you put a splash of vinegar in with your eggs with the boiling water it makes them easier to peel too.

She is not allowed to have a hot plate in the freshman dorms, but I will remember this for next year. Thanks

Link to comment
Share on other sites
WW340 Rookie

I use the Classico sauces. I use the same sauce for pizzas also. It is easy to make your own pizza with sauce, meat and cheese.

I also suggest you check into food tek gluten free products. These are microwave items that cook in just a minute or two and you only have to add water.

I love the chocolate cake. I use the pizza crust for hot dogs and pizza. I use the bread all the time. The items do not come out pretty, but they fill the gap for me. The hamburger buns are good, too. As with most gluten free breads, it is better toasted, but quite palitable without toasting. I think it is better than any of the store bought gluten free breads.

The first package comes with measuring cup and forms. You then just order the refills which are less expensive. There are multiple servings in each package.

You can order direct or from Amazon.

Open Original Shared Link

At least with these I can make a quick sandwich, hot dog, or hamburger. Like a lot of gluten free things, the longer you have been without, the better they taste.

Link to comment
Share on other sites
yeasty Newbie

Although this is a UK article, there are some excellent ideas in how to live safely gluten free in a shared dorm at university:

Open Original Shared Link

Link to comment
Share on other sites
celiac mom Newbie

My son is also a freshman in college, but has been diagnosed with celiac for 4 years. He loves the tacquitos by Delimex- chicken- they are gluten free. We bought him a refrigerator with a bigger freezer knowing that he would need meals in case the dining hall was a bust. He also eats alot of nachos with corn tortilla chips and cheese. Amy's makes a very good rice pasta mac and cheese and also rice crust pizza, but she will need a bigger freezer for that. Good luck- it is tough in the beginning but does get easier.

Link to comment
Share on other sites
wildwood Apprentice

Thanks for all of your suggestions and resource recommendations. My daughter tried Amy's gluten-free mac & cheese this weekend and did enjoy it. I made some chili and cornbread for her freezer. She actually liked the gluten-free cornbread better than the way I used to make it. My mother purchased her a microwave popcorn popper and she is absolutely thrilled! She is doing much better with her new diet. I am proud of her. I will be experimenting with some of the other suggestions some of you have given and next time I go to to see her, I will stock her freezer (her very small freezer :)) with some more homecooked food. There is a Wegman's in the city where she goes to school so I advised her to go there when she has room in her freezer again because they have a small, but decent selection of gluten-free frozen entrees as well as some other gluten-free products. I am also sending her packages of different products to try so we can figure out which ones she likes and what works the best for her. This forum has been an invaluable source of information and advice. Thanks to all of you for your help.

Link to comment
Share on other sites
CeliacMom2008 Enthusiast

I'm sending you and your daughter hugs. My son is 9 and I've already worried enough about college for a lifetime! My hubby reminds me that by the time our son is in college there will have been a great deal of changes (hopefully improvements) and my worrying is very premature. I'm still in the hovering stage where I think my mother and I are the only ones capable of feeding him! ;) I have visions of me making trips to college with food and gluten-free beer! I can hear it now "Who's gonna make the next beer run?' "Oh Mom's got this one!" :lol:

Good luck to you and your daughter! Freshman year is challenging enough without having to worry about what your next meal might be. More hugs...

Link to comment
Share on other sites
Erin Elaine Newbie

I don't know if anyone mentioned this, but Amy's pasta sauces are (I think) all gluten free. Check the label though. Did you buy her the Gluten Free shopping guide? Open Original Shared Link. That's how I learned what to eat when I got diagnosed.

I can only imagine how bad the cross contamination might be in a dorm kitchen. For example, are they cooking the gluten free pasta in the same water as the regular pasta? My suggestion is to set up a meeting with the university and the chef at her dorm kitchen to talk about cross contamination.

I really feel for her. I didn't know I had celiac when I was in college and I'm sure that must be hard. But the alternative is that she found out now. I have major bone loss due to malabsorbtion and I'm only 28 so hopefully she can avoid those problems.

Good luck!

Link to comment
Share on other sites
wildwood Apprentice
I don't know if anyone mentioned this, but Amy's pasta sauces are (I think) all gluten free. Check the label though. Did you buy her the Gluten Free shopping guide? <a href="Open Original Shared Link Advertisement/Gluten-Free-Grocery-Shopping-Guide-2008-2009/dp/0979409411" target="external ugc nofollow">Open Original Shared Link Advertisement/Gluten-Free-Grocery-...9/dp/0979409411</a>. That's how I learned what to eat when I got diagnosed.

I can only imagine how bad the cross contamination might be in a dorm kitchen. For example, are they cooking the gluten free pasta in the same water as the regular pasta? My suggestion is to set up a meeting with the university and the chef at her dorm kitchen to talk about cross contamination.

I really feel for her. I didn't know I had celiac when I was in college and I'm sure that must be hard. But the alternative is that she found out now. I have major bone loss due to malabsorbtion and I'm only 28 so hopefully she can avoid those problems.

Good luck!

Thanks Erin Elaine (my daughter's middle name is Elaine also :) ) I have not purchased a gluten free shopping guide for her yet. She is not in a position to shop too much. I will keep that in mind when she does start to do her own shopping. She has been very good about asking how her food is prepared so I think she has the cross contamination issue down to a minimum although I don't think in a cafeteria setting it will ever be 100% safe.

I do feel grateful that she found out she has celiac disease early on and she is determined to be and remain gluten free. She has not had any bone loss that I know of. I had her vitamin and mineral levels checked and she seems to be okay in all areas. She does have DH and has experienced neuropathy. Both are subsiding now that she has eliminated gluten from her diet. From what I understand it will probably take a very long time for the DH to resolve.

Thanks for your response and I wish you the best.......

Link to comment
Share on other sites
wildwood Apprentice
I'm sending you and your daughter hugs. My son is 9 and I've already worried enough about college for a lifetime! My hubby reminds me that by the time our son is in college there will have been a great deal of changes (hopefully improvements) and my worrying is very premature. I'm still in the hovering stage where I think my mother and I are the only ones capable of feeding him! ;) I have visions of me making trips to college with food and gluten-free beer! I can hear it now "Who's gonna make the next beer run?' "Oh Mom's got this one!" :lol:

Good luck to you and your daughter! Freshman year is challenging enough without having to worry about what your next meal might be. More hugs...

Thank you for your kindness. I wish you and your family the best also. As a mom, I don't think you ever outgrow the hovering stage :lol:

She is doing very well and seems to have things as under control as she can. She has taken this all in stride and seems to be doing very well. She amazes me every day!!!

Link to comment
Share on other sites
Erin Elaine Newbie

I never developed DH. I did have some neuopathy in my fingers, but it went away. I would still think about getting a bone density test for your daughter. My vitamin levels and all other tests are normal and I only found out about the bone loss by accident. The annoying thing was, after I was diagnosed I saw my childhood doctor for the first time in years and he pulled out an X ray from when I got into a car accident at 19. He said: you know, this shows your bones were underdeveloped even back then. I thought, wow that would have been great to know 8 years ago!

Your daughter is lucky to have a mom to help her. Those of us who find out when we are older end up on our own!

Best wishes to you both.

Link to comment
Share on other sites
  • 1 month later...
photobabe42 Newbie

I used to boil eggs in a hot pot and those were allowed. The school where I went had an office of Institutional Equity. They helped me get a PRIMO single room close to the bathroom when I was diagnosed with Crohn's Disease. I had a friend who was Celiac and he got a key to the kitchen in our dorm and we cooked all the time. We also had some pre-med friends who loved to ask us questions. Really, all our friends were very supportive. You can send her care packages also from the Gluten Free Mall here (ok shameless plug...). I also had some one-on-one meetings with one of the food service directors, in exchange for drumming up support for dining hall focus groups :) My school had plenty of vegetarians and vegans and the food service is a lot better than it used to be as far as offerings for folks with allergies or certain dietary needs. Best of luck to your daughter. Being sick in college is no fun, I hope she can surround herself with intelligent and open-minded people!

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...