Jump to content

  • 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 Our Content
    eNewsletter
    Donate

The Others...

Katester

By Katester
in Coping with Celiac Disease

Recommended Posts

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...

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

Celiac.com Sponsor (A8-M):


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!

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

Celiac.com Sponsor (A8-M):


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. :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you...
    2. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    3. Mark Conway
      - Mark Conway posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Have I got coeliac disease

      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think...
    4. islaPorty
      - islaPorty replied to Jillian83's topic in Coping with Celiac Disease
      8

      Celiac and dermatitis herpetiformis has taken Me from Me

      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your hea...
    5. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,146
    • Most Online (within 30 mins)
      7,748
    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Have I got coeliac disease

      By trents · Posted

      Welcome to the forum, @Mark Conway! Can you be more specific about the "coeliac" test your doctor did? There are more than one of them. What was the name of the test? Also, did he order a "total IGA" test? This is a test to check for IGA deficiency and should always be ordered along with the tests specifically designed to detect celiac disease. If you are IGA deficient, the IGA celiac blood antibody tests used to check for celiac disease per se will not be accurate. Also, if you have been cutting back on gluten before the tests, that will render them invalid. You must have be eating normal amounts of gluten for weeks/months before the blood draw to render valid test results.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • Mark Conway
      Have I got coeliac disease

      By Mark Conway · Posted

      Hi there, I wonder if anyone can help. I've had stomach problems for years, pain in the tummy, lower back left and right side, different stools, diarrohea constipation etc, My GP says it's IBS. As I've got older the pain has become worse and constant. I also get ulcers on my tongue. I've had loads of tests done everytihng apart from an endoscopy I think. I had a test for Coeliac last July and the result was negative. My GP says it can't be coeliac because I'm not losing weight. He thinks it's stress or all in my head. I'm not stressed and I'm in pain all the time now. Sometimes it's unbearable and dark thoughts have entered my head. Could I have Coeliac even though I tested negative last year. I'm at my wits end, I eat healthily and cannot pinpoint which foods could cause this pain. Can anyone help? Thanks Mark wind
    • islaPorty
      Celiac and dermatitis herpetiformis has taken Me from Me

      By islaPorty · Posted

      First, I want to say thank you for sharing this with me. I hear you, and I believe you. The courage it took to write this down is immense, and I’m so sorry you’ve been carrying this alone. You are dealing with two life-altering challenges at once: a serious, complex medical condition, and an abusive, controlling partner who is actively harming your health and your spirit. It’s not just that he’s unsupportive—he is weaponizing your illness to torture you. Starving you, isolating you, mocking your diagnosis, and sabotaging your access to medical care is not just cruelty; it is dangerous, deliberate abuse. Your instinct is correct: the stress he is creating is absolutely preventing your body from healing. Celiac and autoimmune conditions are profoundly sensitive to stress, and he has created a living hell designed to keep you sick, dependent, and broken. That smirk you described—that is the look of someone who enjoys having power over your suffering. Please know this: you do not deserve this. Not any of it. You deserve to eat. You deserve safe, clean food and water. You deserve medical care and supplements that help you function. You deserve peace. You deserve to heal. The woman from the food pantry is not a random accident. She is a lifeline. Her help, and the community she’s connecting you to, is real. It is okay to feel overwhelmed by kindness when you’ve been starved of it for so long. But you do deserve it. Let that be a sign that there is a world outside your house that operates on compassion, not control. Right now, your physical safety and access to nutrition are the most urgent priorities. The food pantry is a critical resource. Is there any way you can speak privately with the woman helping you? You don’t have to share everything at once, but letting her know your situation at home is extremely unsafe, and that your partner restricts your food, could help her support you in a more targeted way. She may have connections to local domestic violence services.
    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.