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Katester

By Katester
in Coping with Celiac Disease

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Katester Enthusiast
Katester
Posted

Ever since I've been diagnosed, I've adjusted my eating habits and everything. I'm careful about what I eat and what I can't eat. The thing that gets me is that no one understands. I get stomach aches usually all the time. Everyone thinks that I just can't eat gluten but I should be fine. No one understand that I actually feel pain very often. People think I'm faking to get out of school and stuff like that. My parents try and act like they're there for me but I know they are having a hard time believing me too. I don't have the time I need to heal because of how fast the world is moving. Just frustrated I guess...

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ravenwoodglass Mentor
ravenwoodglass
Posted
Ever since I've been diagnosed, I've adjusted my eating habits and everything. I'm careful about what I eat and what I can't eat. The thing that gets me is that no one understands. I get stomach aches usually all the time. Everyone thinks that I just can't eat gluten but I should be fine. No one understand that I actually feel pain very often. People think I'm faking to get out of school and stuff like that. My parents try and act like they're there for me but I know they are having a hard time believing me too. I don't have the time I need to heal because of how fast the world is moving. Just frustrated I guess...

We understand here.

It can be very tough, how long ago were you diagnosed? Are you the only one in the house that is gluten free right now? I hope the doctor who diagnosed you let everyone know that they need to be tested also. If you haven't been doing the diet for very long it can take some time to heal. It can also take time to ferret out hidden gluten sources like in our shampoos, cosmetics and even stuff like pet food. You have found a good place with a lot of folks who will understand. Make sure you ask any questions you need to. And lastly (((((((((((HUGS))))))))))

Katester Enthusiast
Katester
Posted
  • Author

I was diagnosed about a month ago. I'm sort of having a hard time adjusting. I don't mind the food or anything like that. I like a lot of the gluten-free foods better! It's just hard with school and stuff. I'm the only one in my family right now. I think the rest of my family knows they need to get tested soon too. If there is gluten in the shampoo and conditioner I use, does that still affect me? I don't understand how hairspray and things like that get into my body. I still have a lot of questions about this kind of stuff. The nutritionist wasn't much help. Thank you so much! :D

JNBunnie1 Community Regular
JNBunnie1
Posted
I was diagnosed about a month ago. I'm sort of having a hard time adjusting. I don't mind the food or anything like that. I like a lot of the gluten-free foods better! It's just hard with school and stuff. I'm the only one in my family right now. I think the rest of my family knows they need to get tested soon too. If there is gluten in the shampoo and conditioner I use, does that still affect me? I don't understand how hairspray and things like that get into my body. I still have a lot of questions about this kind of stuff. The nutritionist wasn't much help. Thank you so much! :D

I've heard a lot of stories about how nutritionists aren't much help. I hope we can help.

About your hair stuff. I know my hair gets in my mouth all the time. Even if you always wear your hair up, if you spray hairsoray in the air, you will breathe it in, and it will be in the nasal drip that eventually gets swallowed. I know it doesn't seem like much, but it's still not good for you. It's more dangerous with your shampoo though, because I find it impossible to keep my suds from going down my face, and if you open your mouth just once, you can get glutened. Ask all the questions you want!

L.A. Contributor
L.A.
Posted

My parents finally got it when they asked me how often my tummy hurt and I said it was easier to tell them how often it didn't hurt...

Katester Enthusiast
Katester
Posted
  • Author

Thanks!

You guys are so helpful.

If you have any tips or anything like that let me know!

RiceGuy Collaborator
RiceGuy
Posted

If you haven't already done so, try avoiding dairy and see how you feel. That is a very common problem for many on this board, including myself. There are other common allergens to consider, and I suppose you may get better advice by simply reading through some of the threads to see if you identify with what others are saying. Things like soy, corn, peanuts, tree nuts, and nightshades are among the most problematic.

Hope you feel better soon!

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confusedks Enthusiast
confusedks
Posted

I went through this at school, etc. I'm 17 and when I was in HS it was very hard at first, but I always ate healthfully anyway. I never took sandwhiches, etc. anyway so in that sense it was fine. BUT, it was very hard at parties and social gatherings because I would almost always get sick just to "fit" in. I never purposely ate gluten, but I did eat out at restaurants without talking to the waiter/waitress. I almost always got/get sick when I eat out.

Something that got my friends to come around was when they say me eating things like skittles, etc. because they realized gluten free isn't a death sentence! Slowwwwwly but surely my friends came around. Now they will even ask me where to go out to eat so I can eat (but I have too many intolerances now to really do that anyway...but the thought is what counts!)

One day not too long ago a friend called me and told me she wanted to go gluten free, but needed my help. I helped her, went shopping with her. She didn't stay on the diet, because she said it "didn't fit into her lifesytle." Well, I don't think it fits anyone's, but we do it anyway. She did tell me that she admires me because I am so strict with my diet.

So, eventually your friends will come around. Also, DON'T cheat in front of them, WHATEVER you do! They will then just think you don't take it seriously. :)

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    • catnapt
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      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
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      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
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      results from 13 day gluten challenge - does this mean I can't have celiac?

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      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
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