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

Oh So Over It All


Lincoln

Recommended Posts

Lincoln Rookie

Hey everyone,

I haven't posted here for ages but I need to at least share my feelings with someone who might actually understand where I'm coming from.

I was diagnosed with gluten allergy like a year ago (after nearly dying) and at first it was easy, I thought once I had explained things to people they wouldn't ask me 538 random stupid questions about my intolerance's (which are the last fuc*ing thing in the whole world I would ever want to talk about) and half of them are "can you eat this, can you eat that" and people even ask me if I can eat specific brands of products as if to imply that I know every ingredient in them off the top of my fuc*ing head for hells sake. I no longer go anywhere or do anything involving food and refuse to go camping or on serious offroading trips (my two favourite past times) or anything like that with people for serious fear of cross contamination or just getting sick in the bush.

Last week I told my sister that she can't cut cheese on the same board she has bread on and when I asked her what she thought would happen she just snapped at me and said sarcastically "you'll die"..... Fu*kwit.

Also last night when I was not feeling well and had diarrhea my great Auntie decides to tell me "but you haven't eaten anything bad for you" like she would fuc*ing well know.

The worst part about all this I feel, is that it is not gluten or any other things I'm allergic/intolerant too that causes this, it is the fact that gluten and other things are used unnecessarily in a lot of products and that because of this factories that process no wheat still have cross contamination all over them and then get away with it because their products contain <20ppm gluten which still affects some of us a LOT!

Sorry about the length and rude words but I don't really care right now. Thanks for reading I guess :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I'm with you...I just can't say it as well as you do.

I got CC from soemthing with no gluten in the ingredients but it was made on the same lines as wheat is processed. It sucked. I was so sick.

Thanks for posting. Raw and honest.

Link to comment
Share on other sites
Takala Enthusiast

:lol:

...."fu*kwit"

perfect.

Oh, just scrub the steering wheel and the grab handles, the stick shift and the roll cage down, pack the wet wipes,and get on with it !

Link to comment
Share on other sites
ravenwoodglass Mentor

Sorry you are having such a hard time. I hate to hear you are giving up things you love. Maybe this link will give you a few safe options of complete to go meals you can take camping with you.

Open Original Shared Link

Or make up goodie bags with for sure safe stuff like Snyders pretzels, raisins, fresh fruit, cut up veggies etc for only your consumption. Then smack them if they even come close to your goodies.

It won't stop all the questions but at least while others are eating their jerky and chips you could maybe have something that looks and smells yummy to make them jealous.

Do make sure you haven't got other intolerances throwing a wrench in the works. I thought for a long time I was getting CC'd a lot when it was actually soy (and the lupine flour in so many European items) that I was reacting to. I just couldn't understand why so many gluten-free products were making me sick even when made in dedicated plants. It only took me about 3 years to figure that out. May not be the case for you but just in case I figured I would mention.

Link to comment
Share on other sites
GlutenDude Newbie

Hang in there Lincoln. I think we all go through stretches like the one you're going through. It passes. I've been a celiac for five years and the first three years were hell. But it does get easier and before you know it, it becomes...normal. Yeah, it's a pain in the neck still and yeah I wish I didn't have celiac, but at the end of the day, there are worse things you could have.

Try to keep the focus on the positive and don't let everyone get to you. They don't know what we go through and nobody else can truly understand.

You'll be fine.

Gluten Dude

Link to comment
Share on other sites
Lincoln Rookie

Thank you all for the replies, posting this really did ease my frustration :),

Eatmeat4good, I am guessing you live in America where there is no legal definition of gluten free. I am lucky in Australia in the way that to have those two magic words on the labeling it must contain "less than 20 parts per milliion" gluten (which still affects me a fair bit). America and all other countries needs this and something very much needs to be done.

Thanks for the link Ravenwoodglass, appreciated, but you are 100% correct as at the present time I seem to be developing more allergies/intolerances every month and have trouble knowing which of the foods I'm eating is making me sick, I usually have to test everything individually at least twice to know what's affecting me. This is the reason I am not doing the things I love right now. I pray it will be okay somewhere in the future. The latest intolerance's include fish and once again lactose.

GlutenDude you are so right about the fact people have far worse things than what I am experiencing, thanks for putting that back in perspective for me.

thank you all :)

Link to comment
Share on other sites
auzzi Newbie

Australia's legal definition of gluten free is less than 3ppm gluten not 20ppm. This is the smallest amount that can be detected by current day scientific processes.

The Australian Competition and Consumer Commission (ACCC) says that a product can't be "gluten free" if you can detect gluten in it .. If it is more than 3ppm, then no gluten-free label.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Gemini Experienced

Thank you all for the replies, posting this really did ease my frustration :),

Eatmeat4good, I am guessing you live in America where there is no legal definition of gluten free. I am lucky in Australia in the way that to have those two magic words on the labeling it must contain "less than 20 parts per milliion" gluten (which still affects me a fair bit). America and all other countries needs this and something very much needs to be done.

Thanks for the link Ravenwoodglass, appreciated, but you are 100% correct as at the present time I seem to be developing more allergies/intolerances every month and have trouble knowing which of the foods I'm eating is making me sick, I usually have to test everything individually at least twice to know what's affecting me. This is the reason I am not doing the things I love right now. I pray it will be okay somewhere in the future. The latest intolerance's include fish and once again lactose.

GlutenDude you are so right about the fact people have far worse things than what I am experiencing, thanks for putting that back in perspective for me.

thank you all :)

Just because there is no legal definition of gluten free in the States does not mean that all the gluten free products sold here are not safe to eat.

Most companies who provide these products do a very good job of it, otherwise diagnosed Celiacs in this country would not recover, including very sensitive me. Eating lots of processed foods is not healthy for anyone and just because you react does not mean it was to gluten.

We have many good companies who provide certified gluten free and they test. I would venture to guess that the amounts are where they are in Australia...around 3ppm. I recovered well on the gluten-free diet but my diet is mostly whole foods, with some treats thrown in. Once you get good at label reading, it is much easier to figure all this out. Considering 10 years ago no one heard of Celiac and all you could get for bread was rice crumb

garbage, we have made huge strides and the vast majority of gluten-free products are safe to eat for 99% of Celiacs. Those who react most likely have additional food intolerances or they haven't completely healed yet. After 7 years gluten-free, I can tolerate many more foods I could not at diagnosis. Had nothing to do with gluten!

Link to comment
Share on other sites
Lincoln Rookie

<3ppm!! that is excellent, last time I checked it was 20ppm, also I am aware that the FDA states that they approve the 'gluten free' label provided it is not misleading or false (paraphrasing but pretty close),and that most companies strive to be responsible, but I still believe there should be a legal definition as we have here. Also I know that when my body has been attacked recently (auto immune response or just bad chemical reaction) my body will have trouble tolerating many foods (especially processed foods and complex sugars). I just have mass trouble processing or expressing my thoughts properly at the best of times (made even worse by gluten allergy but that's another issue altogether).

Link to comment
Share on other sites
auzzi Newbie

I thought your inital post was a masterful expression of AU colloquial language, regardless of any "mind fog" ..

Sometimes it can take months for the symptoms to settle down. If you haven't already, eliminate dairy as it can go straigth through because the villi are in no shape to absorb it especially the fat-component ..

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,093
    • Most Online (within 30 mins)
      7,748

    Eva Ann
    Newest Member
    Eva Ann
    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

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...