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Does anyone ever experience getting glutened and not knowing where it came from?!? I wish we had a self blood tester so we could see if our numbers are up after we feel glutened so that we can narrow down what the culprit was! Anyway, I have had a headache for days and I dont know if I was glutened or Im just sick! Thats another thing I get frustrated about. Everytime I feel off I blame it on gluten but Im not even sure if thats what it is. If I had an allergy or intolerance to something else, like corn, soy, dairy, casein...whatever it may be...what it do damage like celiac, or would it just be something that happens and its my decision whether I want to deal with the side affects? Thanks for the help.

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Does anyone ever experience getting glutened and not knowing where it came from?!? I wish we had a self blood tester so we could see if our numbers are up after we feel glutened so that we can narrow down what the culprit was! Anyway, I have had a headache for days and I dont know if I was glutened or Im just sick! Thats another thing I get frustrated about. Everytime I feel off I blame it on gluten but Im not even sure if thats what it is. If I had an allergy or intolerance to something else, like corn, soy, dairy, casein...whatever it may be...what it do damage like celiac, or would it just be something that happens and its my decision whether I want to deal with the side affects? Thanks for the help.

I used to think I was getting glutened a lot of the time (when I really wasn't) when I first started out. Turned out I was just bloated because I wasn't properly digesting/absorbing fats. I have found that if you're pretty sure it's not gluten, it's always something else.

How long have you been gluten free? If it hasn't been that long then it's probably safe to say the gluten is messing you up. It really does effect virtually every other organ. I would definitely cut out dairy for a while, especially any lactose and casein. These can cause symptoms very similar to that of ingesting gluten. Casein has a very similar protein structure as to that of gluten and temporary lactose intolerance with Celiac is very common.

If you did have another food allergy, it is very unlikely that it too would damage your small intestine like Celiac does. If anything it would probably cause inflammation and/or irritation somewhere else in the body.

You could try keeping a food diary and try to notice when you feel like crap. I did that for a while and found out I have to take it easy on fats and no whole grains or cruciferous vegetables.

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I used to think I was getting glutened a lot of the time (when I really wasn't) when I first started out. Turned out I was just bloated because I wasn't properly digesting/absorbing fats. I have found that if you're pretty sure it's not gluten, it's always something else.

How long have you been gluten free? If it hasn't been that long then it's probably safe to say the gluten is messing you up. It really does effect virtually every other organ. I would definitely cut out dairy for a while, especially any lactose and casein. These can cause symptoms very similar to that of ingesting gluten. Casein has a very similar protein structure as to that of gluten and temporary lactose intolerance with Celiac is very common.

If you did have another food allergy, it is very unlikely that it too would damage your small intestine like Celiac does. If anything it would probably cause inflammation and/or irritation somewhere else in the body.

You could try keeping a food diary and try to notice when you feel like crap. I did that for a while and found out I have to take it easy on fats and no whole grains or cruciferous vegetables.

Thanks, Ive been gluten free since February...So Im not sure if thats long or not. I know my numbers for my ttg are really low (4)...so my doctor said Im def. staying away from gluten. As for the dairy, it doesnt seem to bother me(at least I dont think!) haha maybe I dont want it to. I love milk, yogurt, cheese! so who knows. I did do the food diary for a while and then stopped, maybe ill try it again!

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Thanks, Ive been gluten free since February...So Im not sure if thats long or not. I know my numbers for my ttg are really low (4)...so my doctor said Im def. staying away from gluten. As for the dairy, it doesnt seem to bother me(at least I dont think!) haha maybe I dont want it to. I love milk, yogurt, cheese! so who knows. I did do the food diary for a while and then stopped, maybe ill try it again!

Ive been gluten-free since feb as well, and i decided to try no dairy even though i really really did not want to! but its been 6 months and im starting to add it slowly back into my diet and honestly it helped a lot! i did not think that i t was the problem in the beginning but it really was! i started getting lactose free ice cream and almond milk and it helped i would still eat a piece of cheese here and there and i could tell! but really after a couple months you can slowly work it back in once the damage in your intestines start to heal up! hope this helps!

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Food diary is the way to go. It will show patterns that you might not think of when looking back over a few days or weeks. Just make sure to record everything including things put on your lips (chap stick), toothpaste change and gum or small breath mints.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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