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SusieQ

Im New To This Whole Gluten-Free Thing. Any Advice?

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im 13 and i recently found out that i have celiac disease 2 weeks ago. so i have tried my best to not eat it but i do by acciedent a few times. yesterday i had one bite of gluten and i think im getting a lot more sensitive to it since i haven't had it at all, for a week since i ate the gluten. is this possible? and i get joint pain when i have gluten, but is it possible for my joints to start hurting only an hour after accidentally eating gluten? thats what happened to me yesterday and my joints still hurt today.

:(

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Welcome SusieQ. The same thing happens to me within an hour or 2 after I accidentally consume gluten(achy joints, grumpy mood, brain fog, stomach issues)-Sometimes the side effects can last a few days from my personal experience but they do eventually go away and I get back to normal again. I am glad to see someone learning about gluten intolerance at such a young age. I have had symptoms of gluten intolerance/celiac disease since I was your age-I only wish that I would have known back then about this disease. Consider yourself one of the lucky ones who does not have to live with it for 30 or 40 years before we got diagnosed. Good luck and watch out for those accidental glutenings.

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My son is 10 and also gets joint pain right after he accidentally gets even a tiny amount of gluten. Joint problems were the symptom that let us finally figure out what was wrong.

It takes some time to really understand all the foods that could have gluten in them. It also takes some time to learn how to make sure you don't get gluten on accident from things you touch or that touch other foods with gluten.

At home, if other people are still eating gluten, you can make sure you are safe by making sure any kinds of dips or spreads either come from a squeeze bottle or that you have your own. (People could dip a contaminated knife in and cause you trouble). Also, cooking utensils and pans shouldn't be shared between foods with gluten and foods without.

At school or other places, you can make sure to wash your hands a lot with soap and water (not just sanitizer). Before eating, make sure your food didn't touch anything with gluten. Make sure you don't set your food down on tables or dishes that have had gluten on them.

My son hasn't been glutened in months, since we've really learned how to avoid it. It sounds like you are on the right track! Good luck getting healthy and staying healthy!

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Welcome SusieQ. The same thing happens to me within an hour or 2 after I accidentally consume gluten(achy joints, grumpy mood, brain fog, stomach issues)-Sometimes the side effects can last a few days from my personal experience but they do eventually go away and I get back to normal again. I am glad to see someone learning about gluten intolerance at such a young age. I have had symptoms of gluten intolerance/celiac disease since I was your age-I only wish that I would have known back then about this disease. Consider yourself one of the lucky ones who does not have to live with it for 30 or 40 years before we got diagnosed. Good luck and watch out for those accidental glutenings.

wow. 30-40 years?? the symptoms began 2 years ago for me. i guess i am pretty lucky, but never really realized it. do you know if someone is born with it? or can they develop it? because id be surprised if i were born with it.

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My son is 10 and also gets joint pain right after he accidentally gets even a tiny amount of gluten. Joint problems were the symptom that let us finally figure out what was wrong.

It takes some time to really understand all the foods that could have gluten in them. It also takes some time to learn how to make sure you don't get gluten on accident from things you touch or that touch other foods with gluten.

At home, if other people are still eating gluten, you can make sure you are safe by making sure any kinds of dips or spreads either come from a squeeze bottle or that you have your own. (People could dip a contaminated knife in and cause you trouble). Also, cooking utensils and pans shouldn't be shared between foods with gluten and foods without.

At school or other places, you can make sure to wash your hands a lot with soap and water (not just sanitizer). Before eating, make sure your food didn't touch anything with gluten. Make sure you don't set your food down on tables or dishes that have had gluten on them.

My son hasn't been glutened in months, since we've really learned how to avoid it. It sounds like you are on the right track! Good luck getting healthy and staying healthy!

thanks for the info! it really helped. and do i NEED to be that careful about it? not trying to be rude, im just asking. because im not sure if im that sensitive to it. i haven't had anything that has gluten touch my gluten-free food. how do i know if im that sensitive?

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You do need to be that careful about it. The reason is that celiac disease is different than an allergy. With an allergy you can tell right away if you are having a reaction. If you are "not that sensitive" you just don't get a reaction. If your reaction is not very severe, it's not doing damage to your body. Your body is attacking the thing you are allergic to, not you.

Forgive me if you know this already, but celiac disease is called an autoimmune disorder. Your immune system is what attacks invaders and "auto" means self. So with celiac disease, gluten tricks your body into attacking itself!

With celiac disease, even a tiny bit of gluten can make your body react and start attacking itself inside. Even if you don't notice the reaction, damage can be happening. Some people notice small amounts of gluten, others don't. But all celiac people have autoimmune reactions to gluten.

Really avoiding all gluten is tough, but you can do it!

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You do need to be that careful about it. The reason is that celiac disease is different than an allergy. With an allergy you can tell right away if you are having a reaction. If you are "not that sensitive" you just don't get a reaction. If your reaction is not very severe, it's not doing damage to your body. Your body is attacking the thing you are allergic to, not you.

Forgive me if you know this already, but celiac disease is called an autoimmune disorder. Your immune system is what attacks invaders and "auto" means self. So with celiac disease, gluten tricks your body into attacking itself!

With celiac disease, even a tiny bit of gluten can make your body react and start attacking itself inside. Even if you don't notice the reaction, damage can be happening. Some people notice small amounts of gluten, others don't. But all celiac people have autoimmune reactions to gluten.

Really avoiding all gluten is tough, but you can do it!

thanks for your support! do you know if any pizza places sell gluten free pizza?

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Z-Pizza has gluten-free pizza. I am sure there are other chains that have it but I don't remember them at the moment.

You can also buy pre-made frozen gluten-free pizza crusts by Kinickinick to make your own pizza. Many gluten-free breads are kept in the freezer section because they usually don't have any preservatives and would go bad too fast on an unrefrigerated store shelf.

Many stores mark their gluten-free food items with a special tag, often it's a green tag with gluten free written on it. Some stores keep all their gluten-free products in one section but others spread them all through the store.

If you do a Google search on the store name and gluten free you can usually find some info on what they carry.

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Unos has gluten-free pizza. My daughter is 15 and we just discovered her celiac. You can do it!!!

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Hi SusieQ,

I am 46 yrs old and I have had these symptoms since I was 7 or 8 years old. Didn't find out about the gluten until I was 44. That's like 35 years I was sick all the time. I haven't tried any gluten free pizza so I can't help you there. But you are a very lucky young lady to have found this so early. You won't spend years of feeling sick and helpless like a lot of us.

Good luck,

Txplowgirl

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    • I just saw the ear doctor though and he didn't say anything  
    • I was diagnosed with Celiac in July of 2016. 

      I had an endoscopy in April of this year, the damage seemed to be very minimal (On a scale from 0 to 5, five being the worst and 0 being healthy, I was a 1.) and the doctor told me I'm healing.... If I'm still healing...why do I still hurt SO BAD? It doesn't matter what I eat, rice, rice pasta, fruits, vegetables, I'm always in major pain and I'm always EXTREMELY BLOATED, and I spend all day burping and in burning, uncomfortable pain.

      If I'm healing, why am I still sick? My gut hurts SO BAD and my life is a literal LIVING HELL, i can't even drink water without severe bloating and pain. I've been severely constipated for months now and the laxatives don't really seem to be working. The doctor wants my intestines to heal before he does anything else... so he's going to to do another endoscopy in a year.... I really don't want to wait around an entire YEAR before they do anything else, my gut hurts so bad I haven't even been able to look for a job, every day is a battle to live.

      Any suggestions on how to help this? I'm so sick and tired of living in severe pain.
    • Brandi1969, Carbs/Sugars as they break down ferment turning into gases causing your bloating quoting Ennistx verbatim and I agree! You can try going low CARB aka Keto or try taking some BetaineHCL to stoke up your digestive fires. I will provide some links that list simple home tests and one that provides doctor supervised testing. Bloating is common with Low Stomach acid. See this ChateLaine article. https://www.chatelaine.com/health/diet/bloated-low-stomach-acid-may-be-the-cause/ The easiest way to do this at home though least scientific way is the Baking Soda test to see if you burp from it. See this article that list 5 ways to test your stomach acid levels including medical tests to confirm what the baking soda tests indicates. https://drjockers.com/5-ways-test-stomach-acid-levels/ If you fail the baking soda test the easiest self testing is to try taking some BetaineHCL to see if it helps your bloating.  I suggest 3 or 4 BetaineHCL capsules with a glass or two of water (or tea/juice if you prefer) after you have begun eating.  It should not be soda because soda's will burp on their own from carbonation. 3 or 4 at  meal is not as high you think it might be. .. it tends to be in the goldilocks zone of not being too little . ..but not too much either. See this article about the simple test of using BetaineHCL for low stomach acid. http://hansacenter.com/simple-at-home-test-for-low-stomach-acid/ quoting read the whole article and these other links when you get a chance. . .but I am highlighting the high points. quoting below from the hansacenter "To perform this (baking soda) test: mix one quarter teaspoon of baking soda in eight ounces of cold water, first thing in the morning, before eating or drinking anything except water. Drink the baking soda solution. Time how long it takes to belch. Time up to five minutes. If you have not belched within five minutes stop timing anyway. If your stomach is producing adequate amounts of hydrochloric acid you should probably belch within two to three minutes. Early and repeated belching may be due to excessive stomach acid. Belching results from the acid and baking soda reacting to form carbon dioxide gas. The Heidelberg or Gastrocap tests can be employed for confirmation of the results of this test. I also look for signs and symptoms of low stomach acid. There are many laboratory test indicators of this condition. Some of these include deficiencies of amino acids, minerals, B vitamins, (My words Vitamin D, Magnesium, Iron, B-12 etc.) and, on digestive analysis, elevated levels of putrefactive short chain fatty acids in the stool. I like to have patients (clinician at hanasacenter) do a therapeutic trial with supplemental betaine HCL. (hydrochloric acid) If you take Betaine HCL after a meal and feel nothing, your stomach is probably not producing enough hydrochloric acid. A normal response to taking betaine HCL is a feeling of warmth in the stomach. For an individual whose hydrochloric acid levels are lacking, I have them gradually work up to supplementing as many as 5 Betaine HCL capsules after meals. Although this may sound like a lot, in response to a very big meal, a healthy stomach produces the equivalent of at least 14 betaine HCL capsules. For optimal results, the protein digesting enzyme, pepsin, should be part of the betaine HCL formulation." I hope this is helpful but It is  not medical advice. I used to take BetaineHCL capsules to improve my digestion because my stomach acid was not strong to digest carbs fast enough to keeep them from fermenting into gases causing severe bloating. If this works right you can taper off the BetaineHCL capsules after a few months. Here are two reference works on this topic.  Low stomach acid is known as Hypochloridia and NO stomach acid is known as Achloridia. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/ notice their figure one about how fast the patient felt better after beginning to take BeatineHCL capsules. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/figure/f1-49-53/?report=objectonly Also see this research theorizing why we develop low stomach acid in first place leading to severe bloating if left untreated. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml good luck on your continued journey. ***** Again this is not medical advice but I hope it is helpful. I only know it helped me. As always “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2:7 this included. Posterboy by the grace of God,  
    • Has he had his vitamin and mineral levels checked?  We can be low vitamin D, B's, iron etc.  All those vitamin deficiencies add up to problems with the body healing and maintaining itself.  
    • Ok, I’ll try a probiotic. I already avoid dairy and soy. Hopefully it will help. Thanks!
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