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Vegan And Possibly Gluten Intolerant? Help?
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Hi. Feeling very sick and in desperate need of help.

About a year ago, my IBS-like symptoms were worse than they'd ever been, and I wasn't sure what I was doing wrong. I was eating copious amounts of gluten and wheat products every day - countless PB&J sandwiches, toast, cereals, pasta, etc. (I was a big wheat bread eater because I was a vegetarian, and PB&J is a convenient non-meat food to take to school for lunch.) The biggest issue for me was frequent gas and bloating. Other than that, I only had occasional diarrhea usually related to panic attacks, but I normally had one or two healthy poops a day.

I thought I'd cut out gluten for awhile just to see if I felt better. I really did initially. I also lost about 10 lbs., probably because I was eating less overall, and compensating for the lack of starches in the bread with healthier options like fruits and veggies. I assume that's why I felt better at first. But then I kept having problems after awhile. It got to the point where I started cutting out food group after food group, growing more and more paranoid that it was this or that. I lost 20 more lbs. unintentionally, then lost more intentionally, because this stuff is a sick cycle, and I'm now underweight and fatigued all the time.

I eventually went to see a gastroenterologist as a last desperate effort to diagnose my problem. He did an endoscopy, took biopsies, took a blood test, and a stool sample. All of them came back negative for Celiac disease or gluten intolerance. I had not been eating gluten or wheat for almost a whole year at this point, though. I've read that this makes a difference. Does not having any gluten in your system guarantee a false negative?

Anyway, after he told me the 'good' news that there was absolutely nothing wrong with me, I felt a bit encouraged. I was at that point (and still am) a vegan, so being a gluten-free vegan left me with not a lot of food options. Funny enough, going vegan was the best thing for me as far as managing my symptoms. All of the symptoms that going gluten free didn't cure were pretty much cured by going vegan.

So, I've been wanting to eat more normally, and since my doc gave me the OK, I've been trying to slowly reintroduce gluten into my diet again. The results:

First time, had half a slice of whole grain bread - felt okay for the first few hours, but later that night it felt like I'd swallowed a potato whole. Bloated, nauseous, and miserable.

Second time, had a tiny handful of bran flakes. Same effects, but less severe.

Third and fourth time - had some small pieces of whole grain crackers, felt no reaction except for a bit of bloating. Very mild.

Fourth, fifth, and sixth times - had half to a full slice of whole wheat bread with fruit and peanut butter and some tea with ginger and peppermint to ease the transition. No stomach cramps this time and slightly less bloating, but I got very constipated. Then I took a laxative and some fiber supplements and even an enema (because I can't stand the feeling of being constipated, even for just a day; I'm such a baby), and I actually had to leave work early because I'm going to the bathroom every few minutes, ughghh. I know. I overdid it.

What's going on? I'm clearly reacting to either the wheat or the gluten or both, but I don't know if it's because I'm legitimately gluten intolerant or sensitive or if it's because it's just a shock to my body after not eating it for so long. (I can eat heaps of non gluten-free oatmeal and have no adverse reaction at all.) I'm going to give my body a little break for a few days, and then maybe try eating a bit of bread again to see if I get used to it.

I'm pretty upset. Going gluten-free was probably the worst decision of my life, because I was processing it without much problem before, and now I react so badly to it. It's really an issue because I can't tell you how much I miss sandwiches, and I can't find gluten-free and vegan-friendly bread anywhere. My doctor really got my hopes up, and now I'm feeling really discouraged. My family seems to think that I should stick with my original plan of gradually reintroducing gluten into my diet to get myself used to it again, which I felt like was possible since my stomach cramps went away eventually.

My questions are: do you think there is any getting used to it? If so, do you have any tips on how to go about doing this? Is it possible my doctor misdiagnosed me? Did I "sensitize" myself to gluten or wheat by eating so damn much of it before?

Not one person in my family has Celiac disease or is gluten sensitive or intolerant, so I don't have the genes for it. I'm just praying I can eat bread again someday. Am I in denial?

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You sure you don't have the genes for it? Just because no one in your family doesn't have it, doesn't mean that you can't.

Sorry dear, but not eating gluten for a year will mess up the tests. You have to be on it for a significant period of time in order for it to come back.

What are you eating? Many gluten-free vegans give up because there is very little for them to eat (mainly i see this when they become intolerent to soy or corn).

Do a gluten challenge (aka reintroduce into diet) get tested after a period of time (6 weeks is about adverage) and then see if its worth it.

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You sure you don't have the genes for it? Just because no one in your family doesn't have it, doesn't mean that you can't.

Sorry dear, but not eating gluten for a year will mess up the tests. You have to be on it for a significant period of time in order for it to come back.

What are you eating? Many gluten-free vegans give up because there is very little for them to eat (mainly i see this when they become intolerent to soy or corn).

Do a gluten challenge (aka reintroduce into diet) get tested after a period of time (6 weeks is about adverage) and then see if its worth it.

Not eating much, honestly. Oatmeal, gluten free cereals, fruit, and vegetables, pretty much. I guess my gastroenterologist is pretty ignorant seeing as I told him how long I haven't been eating gluten and he did the tests anyway. :/

I'll try the challenge. Thanks!

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Is the oatmeal gluten-free? It's not all gluten-free. You may or may not have celiac but as the other poster said, if you weren't eating gluten, then your test won't come back right.

You could also have a food intolerance or allergy. To gluten, wheat or both. My daughter did. You could also have other food intolerances or allergies.

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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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