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Angryy 20 Year Old

WSLIZ

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WSLIZ Newbie
WSLIZ
Posted

Im only 20 years old and 4 days ago I was diagnosed with celiac.....my doctor left me with NO information other than a thin packet that wasnt really helpful. I am so confused about what i can and connot eat.....i feel like i cant go out with my friends to eat or out to a bar cuz im confused about what i will be able to drink. Im very angry and wonder if there is any way my doctors diagnoses is wrong.....I had blood work done that tested positve...and they are going with that? Is that really that accurate?? Anyones input would probly help right now.....Thanks!

~Liz~

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darlindeb25 Collaborator
darlindeb25
Posted

yes, the blood test are that accurate and it will be hard for a while, but you will get used to being a gluten detective and yes, you will have screw ups, we all do--read everything you can in celiac.com--there are food list in here that you can find--they have name brand items we can have that are gluten-free--another good site is clanthompson.com --they have food list too--there are many good sites in the post in here for you to visit--do check them out--you are only 20--i wish i had been diagnosed then, it would have saved me so many painful years--my life is so much better now that i am gluten-free and sweetie--i havent been diagnosed by a doctor and i still know celiacs or gluten intolerance is my problem--keep your chin up and feel free to email me at my aol addy with questions--i will answer you with what i know or i will find out what you need--my sister is a licensed dietician who has celiacs--we help each other---deb :D

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Most doctors arn't too helpful and you have to do the research yourself. . .sadly it will take a long time to get the whole glutenfree thing down but it's all worth it and you'll get the hang of it.

There is a teenaers section on here too where a lot of 17-23 yr olds post and stuff.

You'll find that there are drinks for you to drink and you can go out to bars!

Kristina

Mballerina Explorer
Mballerina
Posted

If you have all the symptoms then you can go with the test being positive. If you have none of them then you should insist on a biopsy. I am 20 and found out about it two months ago. I have done 4 or 5 months of reading medical journals and still it is so frustrating for me on a personal basis. If you want to talk I would be really happy to be frustrated with some one else. Better to figure it out with someone else than just yourself. It's good for those moments of desperation.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello liz,

it's normal to be confused at the beginning. But it's all getting better after a while. On celiac.com are a lot of food lists, you can print out. And also a lot of good recipes, you can make. Don't desparate. When you go out into a restaurant, you can't have beer as a celiac, but you can have a lot of other stuff. As a celiac you can drink most of the wines (if not all), because they are from grapes. And there is another list out there, from which i printed out two pages with alcoholic beverages. I can't find the list anymore, but i still have the pages i printed out. It's a really long list, but if you want i take the time and email it to you. So you can have other alcoholic stuff as well. If you want to drink non-alcoholic stuff, you can drink some drinks from coca-cola (i believe i also saw it on this list here on celiac.com) and from pepsi i think it's all drinks you can have. Just check back with the list and when you're in a club you can ask 'hey, are your drinks from pepsi?'. They should know. OK, if you have any other question, remember, you can always find support from all of these nice people here. This is a very helpful message board i experienced.

Good luck on your celiac journey, Stef

tarnalberry Community Regular
tarnalberry
Posted

Give yourself a good three months to start feeling comfortable with this.

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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

      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! 
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      Anti-endomysial Antibody (EMA) Testing

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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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