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Symptoms, Symptoms, Symptoms! Help!
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Hey everyone!

Sorry I'm new to everything here so I'm looking for some advice for you more seasoned pros.

About 10 months ago I went to the Dominican on a service trip and ended up getting a severe stomach flu or cholera. Since then, I haven't felt normal. Symptoms started with stomach churning and bloating all the time, most often at night or after I ate. It kind of feels like when you drink a lot of water and you can feel it sloshing around-- but it happens to me all the time. It also is SUPER loud. I also was experiencing constipation. So I went to gastroenterology and they did a whole bunch of blood tests (including celiac) and all came back negative and normal. Then I got an endoscopy-- also normal. They told me I had post-infectious IBS, and that I just had to wait it out.

So after months of waiting and still feeling sick I went back to the doctor. We did more tests (thyroid, food allergy) and all came back normal. My constipation had gotten worse at this point and I was still experience the churning/bloating all the time. Again they told me to wait.

After 10 months I decided to get a second opinion. The doctor mentioned gluten sensitivity but said the topic was very controversial and there was no way to test for it. He also explained that my chronic headaches (since I was 14) and skin eczema (specifically on my scalp) could also be symptoms of gluten sensitivity. Unfortunately he said he didn't know enough about the subject to tell me any more.

So after doing my own research I decided to try going gluten free on my own. The first two days I felt pretty good, the churning eased off a bit and my bathroom experiences weren't so bad. Day four however hit me hard. The churning was so bad it made me nauseous and I was so tired I couldn't do anything all day. Day 5 started with significant stomach churning/bloating, more constipation, and a migraine.

I'm starting to question my self diagnosis. Am I way off track here? Is it possible I'm not gluten sensitive at all? The day I started to feel sick I had a starbucks raspberry latte and some movie theater popcorn (as well as some stuff I cooked myself). Is it possible that one of those things had gluten in it and it's affecting me this severely?

Sorry for the long post, I'm just frustrated and looking for some answers. I'm new to this and I'm worried I'm doing it all wrong or I'm wrong in my diagnosis in the first place.

Any similar experiences or help would be very VERY much appreciated.

Sheri

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Im betting you got glutened. I have been glutened more times than I can count at Starbucks so I quit going. I thought I read on another post that movie theater popcorn wasnt safe but Im not sure. It also tales time to jave symptoms resolve.

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Your best bet in going gluten free is to eat only food you have prepared yourself. Eat whole foods, meats, fish, vegetables, fruits, nuts, seeds, rice, maybe some gluten free pasta with home-made sauce so you know what's in it. The chances of cross-contamination before you are thoroughly familiar with the diet are very high. So at least one month of not going out to eat, taking snacks with you to the movies (you don't have to advertise it!) and not eating at friends' houses unless it is something you have brought with you.

Yes, after you go gluten free it takes smaller and smaller amounts of gluten to upset you. Unfortunate but true; your body is so glad to be rid of it that it fights back if it detects it again.

Non-celiac gluten intolerance is actually more prevalent than celiac disease and the medical community is just coming to grips with this. Keep eating gluten free and learning where gluten hides. Here's to feeling better in no time. :)

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You do sound like you got glutened. I have had daily headaches like you, as well as the migraines. I had DH on my feet but the gastro didn't get to see them because I went gluten-free before going to him. I had eczema a bit on my head and my elbows were in horrible shape...sharp, rough skin. I was opposite in that I had D all the time, not C. But the rest sounds almost like my story.

Anyway, 2 days into gluten-free and I felt great. I wasn't healed, but I had just not felt that well in a long time so to me it was euphoric. After 4 days my skin cleared and my elbows were soft. Who has ever gone from nasty, rough skin, including rough heels and callouses, to soft skin in 4 days without heavy topical and other treatment? I sure did. All I did was I went gluten-free and started supplementing. That's it. And I got glutened at 5 weeks and it was horrible, just like yours.

If you're just intolerant, that's a bit of a blessing. You're suffering symptoms without having the severity of damage to the intestine. Sounds like it feels the same, but I imagine your blood work should look a lot better than if you had celiac. So if you can stay gluten-free that's the only real test for it. If you feel better gluten-free, the answer is easy. And it seems like it already had until something happened. I wouldn't trust things without either a certification from the establishment that it's gluten-free (and that can still be questionable due to CC) or a label you can clearly identify all ingredients as safe (as well as any mfg process that food went through). It'll get easier as you learn all the "gotcha" things that can trip you up. I'm still tripping regularly :)

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Just a thought -- have you been tested for amebiasis? I traveled a lot to Mexico in the past and found it very difficult to get properly tested and treated in the US for tropical parasites. Not unlike Celiac, doctors here have very little experience with it.

Once when I had a very bad case of amebic dysentery, the first round of Flagyl did nothing and it took almost a year of treatment to get rid of it.

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Thanks for all the help! I will continue to be gluten free and hopefully it'll get easier. I feel a little better today so maybe im starting to get over the starbucks mishap. I haven't been tested for amebiasis I don't think. I have an appointment with a gastroenterologist coming up so I will mention it to him. I took anti-parasitics after I got back from the Dominican though. Would they be strong enough to kill amebiasis?

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    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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