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Hmmm, Could It Be Soy?
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I gave myself a good week off of anything even potentially containing gluten for a week. Then I gave myself a good solid gluten challenge. I ate bread and all the gluten I could find. Not much reaction.

Perhaps I got a little constipated, perhaps I felt a little tired and lethargic, but not a whole lot of reaction....

Try as I might, I couldn't seem to make myself sick.

So yesterday at lunch I ate one of those Asian Chicken Salads from Mickey Ds. Dumped the packet of soy

sauce dressing and almonds on it and chowed down.

Tuesday evening, I started having stomach cramps, cold sweats and feeling like I was going to hurl.

Now I'm starting to suspect my problem is something other than gluten. I'm starting to suspect

Soy...or even Almonds as the potential culprit. I do have a tendency to eat chocolate bars, with Almonds of course, before my long running stints.

There are just so many things it could be, I don't know where to start. What do I do? Keep a food diary and start introducing foods one at a time and see what makes me sick. Do I find an allergist?

Arrgh! Jerry

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It could be soy, or it could be McDs yuckiness in general, or something else entirely. You might try an elimination diet. It's almost impossible to know what's going on if you only cut out gluten for a week. I'd give it 3-4 weeks at least.

Also remember if you're feeling lethargic and constipated...you are reacting to something...or something's not right that can be fixed. You don't need a life threatening reaction to justify eliminating (insert offending food here) from your diet :):)

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Yes, it could be soy - it could be several things. You need to stay ________-free for longer than a week to figure it out or just go get some testing. One way to home test is to eat nothing but rice, lamb, fish, carrots, lettuce, kiwi and sunflower seeds for a month. (Maybe add a few other low allergenic veggies and fruits.) Then add one new food each week to see what happens. Or eliminate one food at a time for 6 weeks and see if anything happens.

It sounds like you don't want to have gluten intolerance really bad.

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Knowing where to start isn't easy. Keeping a food diary is going to be a good idea. I'd also recommend that you see a doctor for testing. Even if its just the Celiac panel, to rule it out.

It sounds like you're thinking you're having delayed reactions? If so, an IgG foods test might be of a lot of help, as delayed reactions are hell to pinpoint.

Your best bet is going to be eating simpler til you figure this out. Processed foods like McD's are going to be out, because they contain a ton of different food ingredients and it is nearly impossible to pinpoint which of those it could be.

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The problem is, I belong to Kaiser Permanente and they are basically crisis management only. If I go in to the office bleeding out of several orifices, they would check it out. If I go in there and say my stomach hurts and I think it might by Gluten or Soy, they're going to give me the usual condescending skeptical crap you always get from HMOs. I freaking hate it. Doctors lament the fact that men never go to the doctor, this is why....they don’t DO anything. I bet it costs 6K a year for my insurance and what the hell do I get for it? Penicillin if I get strep throat, that’s about it....

It's not that I don't want to have gluten intolerance, it's that I seriously doubt my HMOs ability to diagnose it, or much else...

End of rant. Jerry

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When I first got sick I had Group Health, a big HMO like Kaiser. They were happy to send me to a specialist - with a 6 week wait and happy to give me all kinds of drugs. When I asked about changing my diet the doc. told me that diet changes were all "quackery". (This was a rheumatologist, not a GI.) Then they didn't want to help me any more.

I went to a naturopath on my own and paid out of pocket for an ELISA test. I believe that it saved my life.

I realized at that point that my health was in my hands - no one cared about me or my health as much as I did. I've been given no help at all by mainstream doctors and my naturopath has only helped a little. It's been up to me to figure out what I can and can't eat and when to try to introduce new foods.

You might never get a diagnosis, I've never officially been diagnosed with anything. The mainstream doctors told me that the tests I had done were useless and to "eat anything you want and take medications" if I was still having problems. I chose to listen to what my body was telling me and stopped wasting time and money on doctors. My health is not perfect, but good enough to teach PE, coach basketball and do 1-2 small triathlons every summer. If I'd waited for my HMO to help me I'd either be dead or in a wheelchair living on horrible medications.

Eliminating foods from your diet might be a hassle, but it's not expensive and will ultimately tell you better than any test which foods you can and can't handle.

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Soy is also a common allergen and irritant. Perhaps cutting out some of the major allergens like soy, eggs, dairy, nuts, corn, etc. in addition to the foods with gluten and giving your body a rest for a month would be a good idea. Then introduce one of the suspects @ a time so you can really monitor the consequences. I have an HMO as well and I understand your frustration. Try the elimination diet and really watch what happens when a single food is introduced.

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Thanks so much about the food allergy panel advice. I didn't know such a thing existed. I thought

skin pricking was as high tech as it got. I think I want to go with that, because I have several foods

I suspect besides Glugen. Specifically, Almonds and Soy. Jerry

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Thanks so much about the food allergy panel advice. I didn't know such a thing existed. I thought

skin pricking was as high tech as it got. I think I want to go with that, because I have several foods

I suspect besides Glugen. Specifically, Almonds and Soy. Jerry

I'm going to do the A lcat testing. (Take out the space and google it. It changes the words here on this board.) It looks like a really good test.)

They'll test for more things than just gluten, which is nice. Of course, you can always Enterolab. Did Enterolab wtih my son and was very satisfied.

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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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