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SafetyDancePants

Additional Food Allergy, Or Something Else?

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Hello all!

I just joined this forum a few days ago, but I have been reading it for about 6 months and have turned to it many times when in need. I wanted to thank the people who participate here -- It has made a world of difference to have somewhere to go for answers, or just when you are hurting, and know you aren't the only unlucky person out there.

For starters, I have been 100% gluten-free since September, and was avoiding/tapering off of gluten for about 6 months before that. I am self diagnosed gluten intolerant, by way of elimination diet. My symptoms mainly consisted of terrible stomach aches and nausea, and I started getting them about 10 years ago (when I was 14-15 was the first time I visited a gastro for my stomach pains). I went undiagnosed (and tried everything -- IBS medication, Miralax, therapy {"Do you think it could be stress..." -- gah!}) through a huge number of doctors, until in February of 2011 a naturopath had me try an elimination diet and I found the culprit to be gluten.

So, now I am off of all gluten, though only a few months totally clean. My stomach aches are completely gone and I do see other small improvements in my body, but I will admit I was hoping cutting out gluten would solve all of the maladies I have.

I am still suffering from nausea, and I feel like it has gotten much worse since I went off of gluten. I am also now getting serious dizzy spells, where I feel like the room is spinning and I have to lay down. I have always had anemic symptoms (though I have always tested okay in my blood work) such as poor circulation and fatigue, and I feel that those have gotten significantly worse in the past few months as well.

I have learned so much from reading of other people's experiences in this forum, and I'm hoping that some of you who have been through this can give me some advice on how to proceed. I see another food allergy as a possibility (dairy or soy?), or possibly a thyroid issue? I also still entertain the possibility that it is still gluten, and is just taking a long time to get totally out of my system. I am just beginning a dairy-free trial to test that option, but if that doesn't show significant improvement in the next few days, I feel that I need to schedule an appointment to see someone. The thing that is really crippling me right now is the dizziness -- it makes it almost impossible to focus at work, and even relaxing at home is difficult when I can't watch a screen or focus on type.

I lost a lot of my faith in doctors over the last 10 years because I felt that they dismissed my chronic pain so easily, so I am not dying to go running back to a traditional MD. At the same time, my insurance doesn't cover Naturopathy, so if I go to see one again, I would hope for some results. I think I am still a bit brainwashed into thinking that I need a "real" doctor. I am not even 100% sure what type of doctor to go back to, since I don't feel like my issues are as localized as they were with my stomach aches. Do I start with a GP? No idea.

So, it turns out I wrote a novel, but I guess I am looking for 2 pieces of advice: 1. For those who have had my symptoms, what have you found the causes to be? 2. Have any of you gotten amazing results with a Naturopath? Can I get things like a thyroid panel done by a Naturopath?

I'm happy to give additional information if needed.

Thank you for any help you are willing to give, and thanks for taking the time to read this. Once again, I am so appreciative to all of you -- it has amazed me how isolated this disease can make you feel, but it has also amazed me that strangers on this board will come forward to support each other when needed.

-Erin

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Hi SafetyDance, and welome to the forum!

I'm self diagnosed too, and I found that after going gluten free I had to cut out other foods for awhile. For me, it was dairy, soy and corn. After allowing some time for healing I can enjoy dairy and corn again. I haven't been willing to try soy yet, except trace amounts in my calcium supplement and a small dark chocolate I enjoy.

I bought some Tamari sauce last week, but will probably let it sit in my cupboard for a month or so while I think about it. (I'm chicken.)

I'm quite possibly older than you and had the problem for longer, but it was a 16 months before I felt comfortable adding in dairy, and another few months before I tried corn again.

Others have had issues with nightshade vegetables. It helped me to go to an allergist to get skin prick testing. It was worth it to me, I popped up highly allergic to pecans, clams and turkey, things I'd eaten in moderation without a single side effect my whole life. Best wishes in your food journey!

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Hello all!

I just joined this forum a few days ago, but I have been reading it for about 6 months and have turned to it many times when in need. I wanted to thank the people who participate here -- It has made a world of difference to have somewhere to go for answers, or just when you are hurting, and know you aren't the only unlucky person out there.

For starters, I have been 100% gluten-free since September, and was avoiding/tapering off of gluten for about 6 months before that. I am self diagnosed gluten intolerant, by way of elimination diet. My symptoms mainly consisted of terrible stomach aches and nausea, and I started getting them about 10 years ago (when I was 14-15 was the first time I visited a gastro for my stomach pains). I went undiagnosed (and tried everything -- IBS medication, Miralax, therapy {"Do you think it could be stress..." -- gah!}) through a huge number of doctors, until in February of 2011 a naturopath had me try an elimination diet and I found the culprit to be gluten.

So, now I am off of all gluten, though only a few months totally clean. My stomach aches are completely gone and I do see other small improvements in my body, but I will admit I was hoping cutting out gluten would solve all of the maladies I have.

I am still suffering from nausea, and I feel like it has gotten much worse since I went off of gluten. I am also now getting serious dizzy spells, where I feel like the room is spinning and I have to lay down. I have always had anemic symptoms (though I have always tested okay in my blood work) such as poor circulation and fatigue, and I feel that those have gotten significantly worse in the past few months as well.

I have learned so much from reading of other people's experiences in this forum, and I'm hoping that some of you who have been through this can give me some advice on how to proceed. I see another food allergy as a possibility (dairy or soy?), or possibly a thyroid issue? I also still entertain the possibility that it is still gluten, and is just taking a long time to get totally out of my system. I am just beginning a dairy-free trial to test that option, but if that doesn't show significant improvement in the next few days, I feel that I need to schedule an appointment to see someone. The thing that is really crippling me right now is the dizziness -- it makes it almost impossible to focus at work, and even relaxing at home is difficult when I can't watch a screen or focus on type.

I lost a lot of my faith in doctors over the last 10 years because I felt that they dismissed my chronic pain so easily, so I am not dying to go running back to a traditional MD. At the same time, my insurance doesn't cover Naturopathy, so if I go to see one again, I would hope for some results. I think I am still a bit brainwashed into thinking that I need a "real" doctor. I am not even 100% sure what type of doctor to go back to, since I don't feel like my issues are as localized as they were with my stomach aches. Do I start with a GP? No idea.

So, it turns out I wrote a novel, but I guess I am looking for 2 pieces of advice: 1. For those who have had my symptoms, what have you found the causes to be? 2. Have any of you gotten amazing results with a Naturopath? Can I get things like a thyroid panel done by a Naturopath?

I'm happy to give additional information if needed.

Thank you for any help you are willing to give, and thanks for taking the time to read this. Once again, I am so appreciative to all of you -- it has amazed me how isolated this disease can make you feel, but it has also amazed me that strangers on this board will come forward to support each other when needed.

-Erin

Yes, a naturopath can order a thyroid panel. Mine did, but I got the blood tests done at my HMO lab. I don't see my HMO PCP for anything but occasional (every 3 years now) pap and pelvic exams. She doesn't even look at the tests which my ND orders. Also another naturopath, who specializes in finding causes for IBS symptoms (like celiac, delayed reaction food allergies, parasites, bacteria and yeast), ordered the blood tests which diagnosed my 6 other delayed reaction food allergies. So, yes, you can get what you need from good holistic naturopaths, especially those working with regular md's in a holistic clinic. My current ND discovered why I kept getting gastrointestinal and respiratory infections despite my abstinence from all my 7 food allergens. She just kept ordering blood tests (and urine tests) until we found and treated all the deficiencies that caused my lowered immunity. I'm really well now and don't catch colds no matter what.

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The symptoms you describe can be caused by many things. Regarding the nausea, it may very well be that you need to avoid soy, dairy, nightshades, and oats for a while and then add them back in after three months. When your immune system is healing and then reacts to gluten contamination, it can then become confused and start identifying other foods as containing gluten. This is called cross-reactivity. However, in many cases, simply removing the foods that your body has targeted is sufficient to get your immune system to calm down and then accept them again in the future.

However, the dizziness is of concern to me. With such a symptom, I suspect a nutritional deficiency might be at the bottom of all of your lingering symptoms. You say that your doctor has checked for anemia, but has he/she checked for B-12 anemia? I looked up the nutritional causes of dizziness and came up with a number of B vitamins: B1, B2, B6, and B12. In addition, dizziness can be caused by iron deficiency, manganese deficiency (very common), and sodium deficiency (pretty rare). It certainly wouldn't hurt to add a good Vitamin B complex vitamin, sublingual B-12 supplement, and chelated manganese to see if you start feeling better. Also, low B-1 can cause nausea. A number of us here on the Forum prefer Coenzyme B-Complex Caps by Country Life (I take three capsules a day because I don't absorb B vitamins very well). For the B-12, any gluten-free sublingual tablet will do--take 2,000 mcg twice a day.

If you're interested in matching up your symptoms with nutritional deficiencies, here's a great site:

http://www.behealthyatwork.com/pdf/Deficiency-Toxicity.pdf

You might just recognize yourself in there somewhere.

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After my posting, I read the following on another thread:

It's been a while since I've posted, but thought I would add my experience as well. I was dizzy for about a year. It started when I rolled over in bed onto my right side. This was called BPPV. Everything was spinning and was horrible. After that episode I had both vertigo and dizziness for about a year. I went to numerous doctors including eye doctor, family doctor, ENT and a neurologist.

Finally someone told me about a condition called vertical heterophoria. This is a condition where one eye sees higher than the other. A year later I went to an optometrist doctor, Dr. Debby, in Michigan who specializes in this (I live in Arizona and was desperate to get my life back). I still didn't know if I had this or not but when I went on their website, Vision Specialists of Birmingham.com, I had most of the symptoms. It was an easy fix. I had to wear glasses with a prism in them. I couldn't believe I suffered with the dizziness for a year and it could be fixed with glasses!

It turns out the best doctors to diagnose this are optometrists, not opthamologists. Also, it's best to go to one that specializes in vision therapy.

Just for history purposes, this dizziness happened before I was dx'd with celiac and was gone before I was gluten free. I was dx'd with celiac about 6 months after I started wearing the glasses.

Perhaps this might be considered, too (??).

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Thank you everyone with your input and suggestions!

After my posting, I read the following on another thread:

It's been a while since I've posted, but thought I would add my experience as well. I was dizzy for about a year. It started when I rolled over in bed onto my right side. This was called BPPV. Everything was spinning and was horrible. After that episode I had both vertigo and dizziness for about a year. I went to numerous doctors including eye doctor, family doctor, ENT and a neurologist.

Finally someone told me about a condition called vertical heterophoria. This is a condition where one eye sees higher than the other. A year later I went to an optometrist doctor, Dr. Debby, in Michigan who specializes in this (I live in Arizona and was desperate to get my life back). I still didn't know if I had this or not but when I went on their website, Vision Specialists of Birmingham.com, I had most of the symptoms. It was an easy fix. I had to wear glasses with a prism in them. I couldn't believe I suffered with the dizziness for a year and it could be fixed with glasses!

It turns out the best doctors to diagnose this are optometrists, not opthamologists. Also, it's best to go to one that specializes in vision therapy.

Just for history purposes, this dizziness happened before I was dx'd with celiac and was gone before I was gluten free. I was dx'd with celiac about 6 months after I started wearing the glasses.

Perhaps this might be considered, too (??).

Rosetapper,

That is a really interesting option. A lot of the disorientation I feel with the dizziness is visual -- when I close my eyes I don't feel any of it. I will certainly keep this up there as a viable option! I've been needing to get my eyes checked on anyways, might as well bring it up and see what they say. Thank you for the input and research as well. I hate taking vitamins (though I do currently take a big multivitamin... most days) so I kind of take every excuse to avoid them, but certainly if it means my recovery, I can make it happen. I had heard that B vitamins can make a huge difference, I think it might be time to try it out!

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