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

I Have Gone gluten-free W/my 15 Yr Old And I Feel Terrible!

maitrimama

Recommended Posts

maitrimama Apprentice
maitrimama
Posted

As a show of support I have gone gluten free with my 15 year old daughter. It has been one week and I feel terrible, queasy, shakey, tired, grouchy etc. and she is the one with celiac. Honestly if my daughter said she felt this bad I would have thought she was exaggerating so I am glad I am doing this. I know she isn't feeling great and I am worried she won't stick it out, she gone all day at school and I have no idea if she is strictly sticking to gluten free. Yes I was a bit of a wild child but I don't know what I would have done. Does this feeling terrible last long? Does anyone have any advice for dealing with and helping a teen?

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

Celiac.com Sponsor (A8-M):


mommyto2kids Collaborator
mommyto2kids
Posted

All I know is I hate being sick. I wouldn't wish it on anyone. I'm sure your daughter doesn't want you sick. If gluten free makes you sick, don't do it. There are other ways to help your daughter. You tried and it didn't work. We do a gluten free dinner. That is what has worked for us. Maybe try that. As you said, she's gone all day. So what's the point other than that.

Ollie's Mom Apprentice
Ollie's Mom
Posted

I would give it more time. From what I understand, many people go through a "withdrawal" like phase when they cut out gluten. That's what it sounds like may be happening to you right now.

I would not give up on it yet. It has only been a week. I would say give it at least a month.

maitrimama Apprentice
maitrimama
Posted
  • Author

Thank you very much for the support, it actually made me cry. As a mom I want to protect her but also know life's difficulties are what shape us into caring compassionate people. I still wish it could be me and not her. She's my trooper, first born,wasn't breathing at birth, iugr baby, heart defects,dislocated her elbow when she was 5 and popped it back in...hasn't she had enough? You'd never know if you met her (though she is small for our family 5'3" & 94lbs). My heart sank when we got the diagnosis celiac AND IBF. We'll get through it no matter how unfair it seems.

Jestgar Rising Star
Jestgar
Posted

If being gluten-free makes you feel ill, then it's a sign that you have problems with gluten. I agree with giving it more time. You may find that once you're through the early stages you feel better than you have in many years. :)

Good for you for doing this with your daughter, and congrats for discovering your own issues.

I would also ask if you've switched to whole foods, or went straight for the gluten-free substitutes. Many people find that eating natural, fresh cooked meats, veggies and fruits make them heal more quickly.

Skylark Collaborator
Skylark
Posted

It's a little surprising what going off gluten can do when you're sensitive to it. You'd think it would be like deciding you're not going to eat strawberries or nuts but if you're sensitive it's totally different. For some people there is a mild opiate-like effect from gluten and when you remove it from your diet you go through a withdrawal. It's typically a few weeks. Hang in there, because it definitely gets better and keep encouraging your daughter too.

Also as Jestgar points out, if going off gluten is messing with you this badly you are almost certainly gluten sensitive. You may be pleasantly surprised how well you feel gluten-free once this uncomfortable phase is over.

Don't feel sorry for your daughter. It's a godsend you caught her celiac this young and she hasn't had to live with it for 30-odd years! Celiac is a pain in the butt, but it's not the end of the world. It's totally treatable with diet, which is a lot more than you can say for many other health problems. Most of us don't think of ourselves as having a "disease" becasue once you've been gluten free for a while, you recover.

weluvgators Explorer
weluvgators
Posted

Have you been tested yet for celiac? You may want to get yourself and any other family members tested now. I went gluten free for my DD, and I never would have guessed that I would be unable to do a gluten challenge for myself later (my reactions are too severe now after being strictly gluten free for my DD). And we had some withdrawal issues initially with going gluten free, but they passed.

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

Celiac.com Sponsor (A8-M):


mommyto2kids Collaborator
mommyto2kids
Posted

I did not know that. Thanks for teaching me. :)

lovegrov Collaborator
lovegrov
Posted

I agree that all first-degree family members should be tested, but I don't agree that feeling bad is necessarily a sign that you have a problem with gluten.

richard

Skylark Collaborator
Skylark
Posted

I agree that all first-degree family members should be tested, but I don't agree that feeling bad is necessarily a sign that you have a problem with gluten.

People who have no problems with gluten go on and off it at will, with no issues at all. It's no more of an issue than deciding not to eat strawberries for a couple weeks. You probably go on and off various foods like seasonal produce all the time without thinking anything of it. For people who tolerate gluten, it is digested with no particular inflammatory, immune, or biochemical reactions just like any other food.

If you get a response off gluten, positive or negative, and it's not a sensitivity to something else you've suddenly started eating more of like xanthan gum, your body is seeing gluten as something other than simply food. The reaction needs to be examined with celiac testing and a couple months trial of a gluten-free diet to see what's really going on.

tarnalberry Community Regular
tarnalberry
Posted

I highly doubt this is a celiac thing. It sounds like hypoglycemia, honestly. What exactly have you changed in your diet? (Clearly "cut out gluten", but what does that look like, in real-food terms, for you?) If you're eating more refined carbs (say, processed gluten free cookies, etc.) and less protein/fat, this could be part of the issue. If you're also simply eating a lot less, that could cause these symptoms as well. (Alternatively, if you are introducing processed, gluten free things into your diet that previously were not there, there may be something in those that you are sensitive to.)

maitrimama Apprentice
maitrimama
Posted
  • Author

It does feel like hypoglycemia that won't let up. Usually a piece of fruit and some cheese helps but not this time. I am usually a pretty healthy eater and suppose I am eating less but that is probably a good thing. Another thing is that is does feel like withdrawal, I am an alcoholic/addict in recovery for quite some time but I do remember this feeling. I am going to stick to it and talk to my doctor on Monday because I just happen to have a blood pressure check.

mommyto2kids Collaborator
mommyto2kids
Posted

Just trying to understand. Does Skylark think that xanthumgum could be an allergen to Celiacs? I wonder that with baking flour, gluten free for myself.

kareng Grand Master
kareng
Posted

Xantham gum seems to bother some people. It is in alot of products in small amounts. It is in gluten-free baked good so suddenly eating them means you are suddenly eating alot more X gum than before.

dilettantesteph Collaborator
dilettantesteph
Posted

You might want to consider what you are eating. Are you eating a lot of gluten free juck foods? It might just be the increase in junk foods. How about having omelets, stir fries with rice, fruit and yogurt, meat and veggies. If you are eating a healthy diet you should feel well.

Skylark Collaborator
Skylark
Posted

Xantham gum seems to bother some people. It is in alot of products in small amounts. It is in gluten-free baked good so suddenly eating them means you are suddenly eating alot more X gum than before.

Exactly. Thanks, Karen!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748
    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.