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Navigating The Holidays

Cessairskye

By Cessairskye
in Coping with Celiac Disease

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Cessairskye Newbie
Cessairskye
Posted

I am a recently diagnosed celiac and learning the in's and out's of this disease is a bit of an adventure.

For the past few weeks most everyone I have been socializing with are my fellow students (I am a clinical nutrition major) and they are very supportive and understanding of the major diet changes I am making in my life. Unfortunately a bad side effect of the holidays is I am going to parties and socializing with people I don't spend ton's of time with and for some reason the words "celiac disease" is not getting through to many of their brains. I went to a Chanukkah dinner tonight armed with a gluten free noodle kugel and the hostesses assurance that the latkes were wf/gluten-free (she even called the lady that was cooking the latkes beforehand to double check that there was no wheat in them), well apparently the cook didn't think that thickening the latkes with flour is bad because she did. After dinner when I started to get the beginnings of gastric distress I asked if there was flour in anything we ate, the comment was made that yes there was a few tablespoons in the latkes "but it's not like your allergic" :o soooooo to ensure the safety of my body do I tell people I'm SEVERELY allergic to wheat (not a total lie I do actually have a mild IgE immune response to wheat) so that they get the point that I can't have a "few tablespoons" in my meal?? I don't want to have to sit in the corner and hide from all the food at holiday parties and I don't want to not go. Any suggestions? Say I'm allergic? Fill up beforehand on a safe meal so I can say I just ate? HELP :huh:

Skye

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daphniela Explorer
daphniela
Posted

I would bring a dish to share in addition to eating beforehand. Latkes are easy to make gluten free. Just switch out the wheat flour for rice flour in any recipe. You could bring Israeli salad if your going to any more Hanukkah dinners.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

People do not understand celiac disease. Since it's a diet that is the treatment, most think you can 'cheat' a little. Tell people you are highly allergic to gluten might sink in a little more but do not trust someone else's cooking.

Friend of mine made Chicken Soup with rice. She made it because she knew I couldn't have gluten. She said she was really really careful and read all ingredients. I've learned not to trust anyone so I asked her what all she put in it. Of course the chicken bouillon was not gluten free but she'd never thought to check the ingredients listed on a spice type of thing.

I suggest you

1. Always eat before going

2. Bring something to share so you have something to eat

3. Ask for recipes from others so they know you appreciated the work they put into their food

4. Don't make food the main reason for the occasion

Shess0816 Apprentice
Shess0816
Posted

For the holiday parties I have been to this year, I just bring something with me to share with the group. I make sure it is something that is somewhat substantial so that I can eat enough of it to keep myself from being starving if there is nothing else I can eat. A lot of the time there has been fresh fruit and veggies there too that someone else brought, so I eat those as well. Honestly, I have started carrying a gluten free sandwich with me everywhere we go now when it is a group get together that involves eating. That way if there is nothing I can eat, I still have my sandwich!

And remember, as stated by other posters, people do not understand celiac disease. I cannot tell you the number of times someone has told me that I can have WHITE bread because it is not WHEAT bread... They do not understand the real issue or the ingredients in food. If in doubt, err on the safe side, becuase it is YOUR health and the days of being sick is not worth sparing the hosts feelings!

I also like to use the get togethers as a chance to educate people about Celiac. When people ask me why I'm not trying the little finger sandwiches or the pumpkin pie, I explain to them that they contain gluten and that I am allergic to gluten. That is generally followed up by a "What is gluten?" question... so then I get to explain to an uninformed member of the public what Celiac disease is and tell them about all the foods that contain gluten. I just hope that they learn a little bit and next time something about it comes up, they will have a little more information.

cmom Contributor
cmom
Posted

A friend of mine at work last week was excited about making a gluten-free carrot cake for me to share (she has made gluten-free dishes so I can partake before). She was telling me what she put in it (she likes to be sure). When she was listing the ingredients, one of them was barley. I had to tell her I couldn't eat it. She was so glad I did..she had totally forgotten that barley wasn't gluten-free. She said I'm so glad I didn't give you any! Now that's a caring person!

YoloGx Rookie
YoloGx
Posted

I totally agree with the above posters. For the last one, remember that the gluten-free goodies need to be made with gluten-free bakeware etc. with gluten-free spoons and mixers etc. as well as made with and handled by clean gluten-free hands and potlholders and not put right by glutenous items.

Honestly its just best to bake/make etc. your own--whether you share or not is your own business. If you do, make sure you get yours before it becomes cross contaminated from other people's forks and grubby glutenous hands.

Eating something before you go is very wise so you won't be tempted by "fate".

Bea

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    • 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

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      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! 
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