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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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    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
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