Repeat the Elisa? Enterolabs?

[kaygato]

Hi. It's been a while since I posted on here. I kind of went into a wormhole for 3-4 years and tried to forget about my health problems, but it didn't work. 

I have equal parts mental and physical health issues. Chronic fatigue, which to some is arguably mental, and also some mental health problems that haven't been well defined. Right now, I'm so anxious I'm kind of dissociated from my body. That dissociation makes it even harder to quantify my fatigue to people, because I can so easily use anxiety to push through and ignore it if need be.

Honestly, none of my health problems have been well-defined. Anyway, I'm so desperate for some relief that I'm planning on doing a real elimination diet for once in my life. I had the Elisa done almost 5 years ago along with Enterolabs (the panel for soy, dairy, eggs, and gluten). On Enterolabs, I was sensitive to all of them except for soy, and I had two gluten sensitive genes and one celiac gene. The Elisa actually told me I was sensitive to soy, along with a bunch of other foods.

Since this was almost 5 years ago, should I repeat the Elisa to see if it's changed? Also, I saw enterolabs has other tests for nightshades, other grains, etc...is it worth getting those? I'm pretty sure if I was tested currently by the Elisa and enterolabs, there would be little left that I wasn't sensitive too. Which is fine, I eat really healthy and take a multivitamin already...I can handle living on a restricted diet for months as long as there's hope I'll eventually be able to tolerate more.

I have been eating nearly 100% gluten free for a little over two years now, but haven't noticed much of a difference, even though I'd bet my life I'm sensitive to it. I'm not sure, but I think this could be due to the dulling of cognition and disconnect that I feel from my body. The last year I've only gotten glutened a few times, so I think I'd notice more of a difference in the imbetween times...my conclusion is it's a lot more than gluten. I also don't eat a lot of dairy, but rarely go more than a week or so without having something that contains it.

Sorry for the rambling, I really can't help it. So should I just avoid all the foods from the two tests in the past plus nighshades, all grains, and low fructose? Or should I re-test everything? I'm for sure planning on testing oxalates, since I have symptoms that would correlate to oxalates.

Oh, I'm also probably going to start taking LDN for my hashimoto's and graves antibodies. I don't know how this would affect an elimination diet, but I have to do something in the meantime since it will take a while to see results from a diet. I'm also planning on talking this over with a naturopath who favors the GAPs diet, but I thought I'd ask for opinions from here. I'd really rather not do the GAPs diet though, unless enough people tell me/I have enough evidence that it's the only diet that can help heal leaky gut and food sensitivities.

[Jmg]

Hi and welcome back

There are others here with more experience, but I completely understand and identify with the 'wormhole' and disassociation that you cite, I've done and felt similar myself as years have gone by in a foggy daze. I know how difficult it is to think and act clearly when undergoing brain fog and anxiety. 

There's a lot I could write about your post above. However I first took a quick look at your previous posts and am unclear that you've ever had proper celiac tests ran via GP/GI? I'm not talking about Enterolab, but a full celiac panel? Did they check for this when you were diagnosed with hashimotos and graves?

If you haven't had this test, then my advice would be to forget the naturopath, oxalates, fodmaps, allergy tests and the gaps diet for now and to get that testing done via your doctor. This would entail a gluten challenge, unpleasant potentially but worth it if you get an answer. If you have already done all this then please ignore the above but do clarify so that others can help!

All the best,

Matt 

 

[kareng]

Are you seeing some MDs for those  serious medical conditions - like Graves and Hasimotos?  Getting those diseases treated might make a huge difference to your mental and physical well being.  Don't throw more money away on un proven testing.  

[kaygato]

Thanks everyone.

No, I haven't had celiac testing done. I've brought it up to a previous doctor, but they didn't think I could have it because I don't have pain...hwowever, that was the opinion of a psychiatrist. The current doctor is doing an ANA test and something else indicative of autoimmune diseases, so I could probably get her to do a celiac test for me. 

From what I understand though, a GI test is really the only sure-fire way, right? I do have GI symptoms so it shouldn't be hard to convince. I finally also have a therapist who can tell I have physical illness, and he's helping me communicate with the doctors.

And I will keep the thyroid in mind. I'm honestly kind of scared to have them look at it more closely, just in case the situation's really bad and they say I should remove it or something. That's last resort for me, I'd like to try and treat it with lifestyle and laser tissue regeneration first, and periodically test the antibody levels to see if I can get them to decrease. My doctor doesn't see my thyroid antibodies as an issue since my tsh and ft3 and ft4 levels are normal.

Thank you both. My mom's been telling me to ask for celiac testing the last couple months, but I've been discouraged since that last psychiatrist I saw told me I would have an "unusual presentation". Sorry for taking so long to post back. Life's been busy. I really appreciate the advice!

[kareng]

If you are eating gluten-free for 2 years, you cannot get Celiac testing done.  So, I am thinking, that your problems are not Celiac but something else.  

So...you just self diagnosed Hashis and Graves?  i can't tell from your posts.  I am sorry, but that isn't how it works. Those are serious illness and you can't treat them yourself.  Please see an actual MD or maybe 2.  

[kaygato]

I have been eating gluten free, but I keep getting glutened by accident. I'm trying to be more careful these last couple months. I also don't have a gluten free kitchen, I live with my folks who are not into gluten free.

I was tested for hashimoto's and grave's 5 years ago, and I do have the antibodies for both. They are significantly above the reference range, but not the astronomical levels that I've heard other's have. It's been a long time, so I should have them retested soon I think.

[kaygato]

  On 8/7/2016 at 1:22 PM, kareng said:

If you are eating gluten-free for 2 years, you cannot get Celiac testing done.  So, I am thinking, that your problems are not Celiac but something else.  

So...you just self diagnosed Hashis and Graves?  i can't tell from your posts.  I am sorry, but that isn't how it works. Those are serious illness and you can't treat them yourself.  Please see an actual MD or maybe 2.  

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I'll for sure get more thyroid testing

@Jmg Any other comments? 

Thanks everyone

[Jmg]

Hello again and thanks for clarifying where you're at with testing.  As Karen says above you need to get definitive answers. You've said as much yourself:

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Honestly, none of my health problems have been well-defined

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It strikes me that your where I was a few years ago. You know something's amiss, but you can't pin it down. Getting a positive diagnosis could be very helpful for you. As it stands, you could be excluding the wrong foods, maybe it's not gluten but fodmaps, or candida, or dairy or all of the above or none! 

Also, if you do have an intolerance, you need to know that exclusion means just that. It's not a case of reducing the amount, you have to avoid it completely. Certain celiac antibodies can take 6 months to clear after an exposure, so if you're being glutened several times a year, you don't have sufficient info to determine whether or not your gluten intolerant, for example:

 

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I have been eating nearly 100% gluten free for a little over two years now, but haven't noticed much of a difference, even though I'd bet my life I'm sensitive to it. I'm not sure, but I think this could be due to the dulling of cognition and disconnect that I feel from my body. The last year I've only gotten glutened a few times, so I think I'd notice more of a difference in the imbetween times...my conclusion is it's a lot more than gluten. I also don't eat a lot of dairy, but rarely go more than a week or so without having something that contains it.

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Likewise with dairy, if you have it every week you can't determine whether it's an issue or not. 

It can be difficult when you go to a doctor to ensure you tell them everything important and get answers. My advice would be to write down in bullet points, what you're experiencing as well as any questions you have about past tests etc. If you tell the doctors that you've been suffering for a long time, are prepared to follow instructions in regard to a gluten challenge, then I'm sure they'll arrange a blood test for you. The GI exam would follow after that if you're positive.

If you can't face the thought of the challenge, or can't find a supportive GP then you also have the option of living life as if the test was positive. That's where I'm at despite a negative biopsy. It can be done even in shared kitchen, but its not always easy. 

If you did this you could try keeping a food diary to see if you can tie symptoms to food more clearly.  Starting off with a very restricted diet and adding foods one by one whilst noting symptoms. I now have a better handle on how dairy affects me because of doing this and it really helps me to stay off gluten even without a celiac diagnosis, because I have the evidence of the diary on how much my mood and other symptoms improved over time on the diet. 

Sorry I've rambled a bit! In short, if you can be systematic, write things down, try to exclude factors one by one rather than tackling all at once, you may get more clarity.

I wish you the best of luck, hope better times are on the way