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

I Need Help!

Westerngirl

Recommended Posts

Westerngirl Newbie
Westerngirl
Posted

I've been gluten-free for about a year and half, after developing a life threatening allergy to gluten. I go into anaphaylaxis when I eat even the smallest bit. I've been able to manage up until now and cope pretty well, but I'm having problems now. I'm in college and am developing unhealthy eating habits, out of convience and lack of time. Does anybody have any tips on how to create meals that don't take much time, don't need to be refrigerated and are actually healthy? I hope these don't sound like weird questions to ask.

Also, I'm unsure about how to tell my friends about this allergy or why I am so insistent at restaurants about the ingredients of foods and about cross contamination. I've only told my closest friends and people who need to know about my allergy in case I get sick, but some of them freak out and then act really weird about it. Any ideas?

I'm so glad that I found this discussion board. Nobody seems to understand how difficult it actually is to live gluten free. They just tell me, it can't be that hard, get over it.

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

Celiac.com Sponsor (A8-M):


eNviroKid88 Newbie
eNviroKid88
Posted

Hi, I've got few suggestions (and nothing is a weird question on this forum). If you're looking for easy to prepare food that can be found in the average grocery store, "Hormel" makes gluten free canned chili, and a microwave chicken and rice dinner. Also, "Delimex" beef taquitos make a good meal. Also, "Ener-G foods (advertised on this site) makes good tapioca flour or brown rice flour based breads for a quick sandwich. Being in college, pizza is a neccesity,so look around healthfood stores for a gluten free pizza or crust.

Hope this helps, and good luck.

pele Rookie
pele
Posted
Does anybody have any tips on how to create meals that don't take much time, don't need to be refrigerated and are actually healthy? I hope these don't sound like weird questions to ask.

It must be rough to be in college with everyone around you eat sub sandwiches, pizza and the like.

How about trying rice cakes and peanut butter? Or trail mix? I'd suggest making your own from a combo of nuts, seeds and dried fruit that you like and you are sure have no been treated with flour. Canned sardines or tuna? Hard boiled eggs and a banana?

Welda Johnson Newbie
Welda Johnson
Posted

Hi,

Boy, I thought it was bad to get asthma and start wheezing whenever I ate gluten--I feel for you, having anaphylaxis as a result of eating gluten! I've dealt with this problem since I was 8 and am now 63 so I hope I can help. I also went to college and faced what you are in terms of eating with other people and feeling strange, but as time has gone by I have let all that go, and just realize that others really don't know that much about Celiac, so I can be their guide. Who knows? Maybe you will help someone else find out they have Celiac too. 1 of every 133 Americans is said to have Celiac, whether they know it or not.

I am intolerant of all grains, all milk and dairy, egg whites, yeast, casein, whey, etc. I now eat vegan, which means I've eliminated everything except fruits and vegetables (I eat corn, soy, beans, etc.), and I feel great, but I've put together a recipe book for my family members. I will share this with you.

1. Pamela's cookies 2. Mi-Del cookies 3. Ener-G yeast-free gluten-free bread 4. Vegan Gourmet soy cheese 5. Corn & rice pastas 6. Red Mill gluten-free mixes (brownies, cakes, etc.) 7. Almond Milk

8. Soy Milk 9. Rice Milk 10. Popcorn 11. rice cakes 12. Vegennaise Mayonnaise 13. Earth Balance Margarine 14. Van's gluten-free Waffles 15. Cream of Rice cereal

16. Doritos Corn Chips (not cheese) 17. Fritos 18. Tortilla Chips 19. Hershey's Unsweetened Chocolate 20. Hershey's Powdered Cocoa 21. Hershey's Chocolate Syrup 22. Dennison's Chili

23. Prego Spaghetti Sauce 24. dried fruits 25. corn tortillas = tacos, enchiladas, quesadillas

26. refried beans 27. Dennison's Chili 28. corn flour, rice flour, etc. 29. Fruits 30. Vegetables

31. Enjoy Life Granola and Cookies

I hope this helps you! Please feel free to email me at welda@att.net if you need some encouragement and help. I thank God for this site and for those who have helped me. Always, Welda

sneezydiva Apprentice
sneezydiva
Posted

I'm sorry. Being in college, it must really be tough. Next time one of your friends says "it can't be that hard" challenge them to do it for just a week. That should shut them up.

Anyway, Do you have a fridge in your room? If you can have a little insulated lunch bag, you can keep some things in your room, and then pack them in the insulated bag. All kinds of fruit. Also, tortilla chips, raw veggies and hummus. Cheese sticks.

RiceGuy Collaborator
RiceGuy
Posted

If you have a microwave, toaster-oven, or buffet burner (like a mini stove that plugs into a regular power outlet), it opens up a lot of possibilities. Can you get a mini fridge, or even a cooler that you can use for short-term storage? There are electric coolers which are small enough to slip under a bed, and though they don't keep food as cold as a regular fridge, many foods would be fine for a day or two.

As for getting friends to understand, that can be tough, as you already know. Since most people seem to get the idea of someone being allergic to cats, pollen, peanuts, etc, perhaps it might help to use those as examples.

LuvMoosic4life Collaborator
LuvMoosic4life
Posted

I definitly feel for you. I'm also in college and people REALLY REALLY dont understand. They understand the "intolerance" part to a certain degree, but they dont understand the foods I can eat. they are just like "oh that sux, hey, wanna go out for some beers and pizza tonight?" I even had a friend tell me this once after I told him I cant drink beer anymore: "it doesnt matter, its the same as a diabetic drinking pop all night" :huh::o I've come to realize through this who my real friends are. If they tell me to just "suck it up" they obviously dont care about my health, or really dont realize what I go through when I consume gluten. People have beenbacking away from me since I discovered gluten was making me sick. They were happy I finally found out the cause to my sickness, but now that they are sick of me bringing the topic up and think I complain all the time, I dont, its just that I have to keep re-teeling them what makes me sick. they dont get it...

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

Celiac.com Sponsor (A8-M):


gfpaperdoll Rookie
gfpaperdoll
Posted

"Hormel" makes gluten free canned chili, and a microwave chicken and rice dinner. Also, "Delimex" beef taquitos make a good meal.

The only Hormel Chili that is gluten-free is the one WITH BEANS

I am not sure about the Delimex beef taquitos - I thought only the chicken ones were gluten-free - be sure to read the label...

cpicini Rookie
cpicini
Posted

I can only imagine how tough it must being dealing with Celiac and in college. The first thing I'd say is stop worrying about what other people think. Worry about yourself first. Anyone that has an issue with your condition isn't worth your friendship.

In addition to all the great ideas on the other posts I would suggest Ensure. It's gluten free and fills you up. It's not that cheap depending where you shop. I find that the supermaket is cheaper then a drug store. The milk chocolate taste good and they fill you up. I'm a big guy (6'4" and 300lb) and one ensure gets me by a couple of hours. Just be careful, they are high in calories even thought they are only 8oz.

good luck, and don't let this ruin your college experience.

mammajamma Rookie
mammajamma
Posted

I was going to suggest Ensure as well. I don't know what they sell where you live but all Boar's Head deli meats etc. are gluten free... each day I pack a few slices of turkey or ham and a couple of slices of cheese (I ask them to slice it thick so it's easier to roll up) and I have it with some fruit and rice crackers for lunch at work.

JNBunnie1 Community Regular
JNBunnie1
Posted

I have some advice. Any gluten-free replacement product you buy, make sure you keep the receipt and only buy one at a time, because some of it is outrageously awful. Most of us think the Ener-g rice and tapioca breads are only good for building material. Ok, they make a decent turkey stuffing, but that's it. You definitely can't eat it straight. So, never trust that anything gluten-free you buy will be good and go stocking up, always try one first.

mammajamma Rookie
mammajamma
Posted

I agree that the bread is kind of nasty if you eat it cold... but it's OK if you toast it and eat it while it's still warm... not great for sandwiches though!

Westerngirl Newbie
Westerngirl
Posted
  • Author
I have some advice. Any gluten-free replacement product you buy, make sure you keep the receipt and only buy one at a time, because some of it is outrageously awful. Most of us think the Ener-g rice and tapioca breads are only good for building material. Ok, they make a decent turkey stuffing, but that's it. You definitely can't eat it straight. So, never trust that anything gluten-free you buy will be good and go stocking up, always try one first.

I don't stock up on products unless I've bought them before and are actually edible. I agree that the Ener-g tapioca break is pretty gross. I only bought it once because I was out of bread and it was on sale. I only ate it because it seemed like a waste to throw away an entire loaf of bread. I've only been able to find one brand of bread that you can actually eat straight, but it's from a local company. This company has a gluten-free raisin bread and it is pretty good.

cpicini Rookie
cpicini
Posted

Since the topic of bread came up I have a recomendation. If you live in the North East there is company called Against the Grain Gourmet (www.againstthegraingourmet.com). Their products can be found in Whole Foods in about 14 NE States. I have to say this has been a god send. The original rolls are the only product I've had and that's becasue there's no reason to try anything else. They are expensive at 4 rolls for about $8 but it's so worth it to be able to have a sandwich or burger. They don't ship but I would suggest that you check out the website as they seem to be trying to gain national distribution. Note that I have no interest in this company at all, I just really love the product and you will probably agree. I've gotten my local health food store to carry this bread as the nearest Whole Foods is about 35 miles away from where I live. With the price of gas and gluten-free rolls I'm gonna be poor.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,875
    • Most Online (within 30 mins)
      7,748
    Jen J.
    Newest Member
    Jen J.
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.