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

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

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

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

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

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

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

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

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

lovegrov Collaborator

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

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

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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.