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

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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.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.)

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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.

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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.

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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.

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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.

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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!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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