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Galixie

Question About Gliadin Iga Result

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I'm a little bit frustrated with not really getting clear answers from my own body.

 

I had to wait a bit longer to go back on gluten than I had planned because I came down with a cold at the beginning of September and I didn't want to miss or mistake any symptoms from that.

 

Despite waiting until I'd gotten over a cold, it still seems like I have some symptoms that could either be from gluten or could easily be attributed to other things. In fact, the only symptom that I'm certain comes from wheat is heartburn, and I only get that in the morning so, if I stick to the gluten free toaster waffles I've been having for breakfast, it's not really an issue.
 
Maybe I'm trying to hard too attribute my symptoms to other things. Here's the timeline:
12th Saturday evening: I went back on gluten (yay, Oreos!)
13th Sunday: Everything was fine.
14th Monday: I had mild nausea which I assumed was from PMS, because that's one of my typical pms symptoms.
15th Tuesday: Still had nausea.
16th Wednesday: The nausea turned into a stomach ache.
17th Thursday: I was totally fine. Mostly.
18th Friday: My primarily wheat breakfast gave me heartburn which eventually turned into a stomach ache.
19th Saturday: I was fine. I mowed the lawn.
20th Sunday: I'm allergic to grass, so I had a stuffy nose from mowing the lawn. I was also really dizzy.
Yesterday and Today: I'm still dizzy.
 
Now the one thing I didn't really pay attention to while I was gluten free was the frequency (or lack thereof) of the dizzy spells that I've had intermittently since my mid-twenties. I've never been able to pinpoint the exact cause of them but they are sometimes severe enough to lead to fainting spells. I just looked back through my records and realized that they don't mention any dizzy spells for 4 months - slightly longer than the entire time I was gluten free. Could gluten be the cause of dizzy spells I've had for more than 10 years?

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Could gluten be the cause of dizzy spells I've had for more than 10 years?

A resounding yes to this!  That was one of the many symptoms I had, prediagnosis.  Horrible dizzy spells that got so bad, I hoped they didn't happen when I was driving.

 

Now the only time I get dizzy is during allergy season, when my ears sometimes have fluid behind the eardrum...which will cause a person to be dizzy.  It is a rare occurance now, compared to when I was eating gluten.

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I went to see my naturopath yesterday about some ongoing gut issues. We are both in agreement that my gut biome is out of whack and that I need to correct it. I think there may be a possibility that I'm also not producing enough stomach acid (which is a pretty common problem with pernicious anemia). I haven't figured out what probiotic to try yet and I've never taken HCL before so I'm not sure where to start with that one either.

I asked her if I should have my stomach acid level tested first but she thought it would probably end up being far easier to just trial HCL and see if it helps.

The part of the discussion that was kind of interesting was that she thinks I might, someday, get gluten back. The current theory is that I just have leaky gut and, if we manage to fix that, I might be able to eat gluten and dairy again. (I kind of doubt it about the dairy because I have such a strong reaction to that one.)

But it would probably be a long way off so, at this point, it's just wishful/hopeful thinking.

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It's about as official as I'm ever likely to get.

A couple of months ago, someone gave me the contact info for a clinic in England that specializes in gluten-related disorders. Even though I considered it a huge long-shot that I would get any response, I decided to take a chance and mail a letter because I was still a little uncertain if I could really have gluten ataxia if I didn't have damage that was apparent on an MRI. (I knew I didn't have damage based on an MRI that was done in 2013 to rule out the possibility of MS as the cause of my dizzy spells.) Remarkably, I did get a response. Apparently my results fit in with about two-thirds of their patients and MRI scans can be normal at early stages of the problem. So I guess that makes it officially NCGS. He went on to point out that, if I continued to eat gluten, I could develop a "significant degree of atrophy of the balance centre and permanent balance problems." And he ended by advising me to "do your absolute best to be very strict with the gluten free diet."

I think that's about as much confirmation as I could ever hope to get. I was impressed that my letter got there at all. It was neat to get a response back.

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I always find myself reading the articles about how to tell if you have a gluten intolerance. I don't know why I read them. This one caught my eye though:

http://health.usnews.com/health-news/blogs/eat-run/articles/2016-03-24/do-you-have-a-gluten-intolerance-or-not-try-the-spelt-litmus-test

It sounds fascinating and I wonder if it works. Unfortunately, it seems to be specifically useful for people who have gut issues (and I'm guessing only gut issues), so I already know it wouldn't be worth my time to try it.

I am kind of wondering about something else though. It turns out that I have gallstones (or, more specifically, one really large gallstone). Would having my gallbladder removed have any effect at all on my gluten sensitivity? I'm guessing it probably wouldn't, but wondered if anyone had any experience either way.

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Do you ever feel like cheating when you're sick because you already feel miserable and it couldn't really make you feel worse? 'Cuz that is how I feel currently. So far I've managed to resist the urge, but the longer I feel unwell the harder it is becoming. Last night I was fantasizing about fried chicken, sourdough bread, and a milkshake.

In the past month I've had a ridiculous number of tests done on me starting with a CT scan to see if I had a blood clot in my lung (thankfully I don't). While I so far have no answer for what is ailing me at the moment, one truly odd thing has occurred: In the past 5 years I've now had 3 different doctors - all independent of each other - come up with the theory that I might have thalassemia. That's a fairly rare disorder and certainly not the first thing that is going to pop into most doctor's heads. At this point I'm so confused I don't know whether I should worry about it or not. (I'm confused because my Hb A and Hb A2 were tested 5 years ago and - like all of my tests, always - came back perfectly normal.)

Not knowing what's wrong is stressing me out. (Not being able to breathe is also stressing me out...) I guess I just feel like whining a bit. Sorry.

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Theory regarding Thalassemia?  Are you sure you have that right?  You can do a genetic test to see if you have it.  

https://ghr.nlm.nih.gov/gene/HBA2

 Thalassemia is not really rare.  Most folks who have it come from the Mediterranean,  Southeastern Asia, China and the Middle East and some parts of Africa.    What is not common are severe forms that require life-long blood transfusions.  In the old days, babies born with the severe form died within hours of being born.  

https://www.nlm.nih.gov/medlineplus/ency/article/000587.htm

I have Thals and I am just fine (rode my bike 40 miles last Sunday).  I let folks know that I have it because doctors knew I had it and overlooked my iron-deficiency anemia that resulted from my inability to absorb iron thanks to celiac disease.  

I think you need to re-read this long thread.  You need to determine whether or not you have celiac disease or not.   Frankly, I think you need to research gluten ataxia more carefully.   The damage per reports appears to be irreversible unlike intestinal healing, but more research is needed.  

http://celiacdisease.about.com/od/GlutenAtaxia/a/What-Is-Gluten-Ataxia.htm

http://jnnp.bmj.com/content/74/9/1221.full

I do not see why you don't eat that fried chicken or have a milkshake.  You just have to cook a gluten free version (I know you hate to cook, so do I, but I do it.)

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15 hours ago, cyclinglady said:

Theory regarding Thalassemia?  Are you sure you have that right?  You can do a genetic test to see if you have it.  

Yeah, I know it sounds kind of crazy. The really crazy part is that they all came to the idea on their own and I really don't fit any of this:

"Risk factors for thalassemia include:

  • Asian, Chinese, Mediterranean, or African American ethnicity
  • Family history of the disorder"

I haven't had any genetic testing done. The reason the most recent doctor thought of it is because I have a large pigment gallstone. Unlike the more common cholesterol gallstones, pigment stones have a lot of bilirubin in them. You end up with too much bilirubin in the gallbladder when your body is excessively destroying red blood cells. I was told that pigment stones are a common occurrence in thalassemia. The other thing that made him think it might be thalassemia is that my blood oxygen level drops into the 80's when I just walk up a flight of stairs, or down a hallway.

I'm fairly certain it's got to be something else. I'm crossing my fingers that it will be something treatable.

As for the food fantasy, I was fantasizing about comfort foods in the way I remember them. Since I also can't have dairy, the buttermilk fried chicken and the rich milkshake are both out of bounds also. I know that gluten ataxia can cause permanent damage (I do usually remind myself of that when faced with temptation). I've just been kind of miserable lately and crave the comfort foods I remember. Unfortunately none of the foods I grew up with are safe for me now. I hate that.

In my weaker moments (and especially at times when I'm dizzy) this point that is made in the 'what is gluten ataxia' article springs to mind and makes me start doubting everything:

"Gluten ataxia symptoms are indistinguishable from symptoms of other forms of ataxia."

The doubts that circle my brain sound like this:

'What if the lack of dizzy spells while I was off of gluten was just a coincidence? What if I'm forgoing foods I love based off of a mistake? I did test positive for antibodies once, but that could also have just been a fluke and I'll never know because I can't ever get that test redone.'

There is really no conclusive way for me to resolve my doubts. Even if I decided to reintroduce gluten to see if it made me dizzy again, I would first have to resolve whatever is making me ill/dizzy currently. So I remind myself that it is better to be safe by staying away from gluten than to be sorry. It's just a frustrating mental exercise in restraint.

Have you ever used a pulse oximeter when you're cycling? Do you know if it shows a drop below 94%?

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Thals patients are at risk for the pigment stones, but only Thals Majors.  I am certain you do not have Thals major because you would not be able  to live out blood transfusions.  This would have been diagnosed when you were a baby.  You can also develop them due to malabsorption or aging.  Malabsorption....celiac....see this connection?  Do not discount the elevated celiac antibodies you mentioned.  Chances are you have celiac disease.  

Even if you have Thals Minor, you would most likely be symptom free.  You would only be slightly anemic and that means having a slightly (below range) hemoglobin.  You said you hemoglobin level on your CBC result is normal.  

Researchers think that Thals developed in humans to protect them from Maleria.  I have not tested that theory.  My kid has Thals minor but is not anemic.  No symptoms.  She must only worry that her future husband does not have the Thals gene because she could have a Thals Major baby.  No biggie.  Genetic counseling is common.  She is already damaged genetically....celiac disease!

 

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Yeah, my hemoglobin always seems to be around 13, so it's totally fine. Thanks for all the info! :) 

I'm still stumped on my oxygen problem. If my heart and lungs are both fine, then it has to be a blood disorder of some kind. The weird part is that there really doesn't appear to be any anemia going on, so it doesn't make any sense whatsoever. Hopefully my doctor will figure out whatever it really is (and fix it!). Keep your fingers crossed for me.

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CYCLING LADY:  Ha, I always enjoy reading your responses, so much good info!  I also have thalassemia (beta type, Portuguese heritage). Perhaps you could start a separate thread on just that topic ... it has complicated my diagnosis and ongoing working on vitamin deficiencies and such.  Thanks for all your input!

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I know I'm adding to a long and old thread, but as I'm really just describing my own idiocy, I figure I don't need to create a separate thread for it. lol

In the realm of 'don't try this at home':

To sum up my previous experience, I've figured out that I have gluten ataxia and it is the only symptom that I was able to clearly point to after reintroducing gluten after a few months off of it. I have some weird intermittent hypoxia issue that no one can figure out (and which is, presumably, not related). I was in a car accident last November that gave me a concussion that I am still trying to recover from. And, last but not least, I'm currently iron deficient on top of everything else.

So, since I now have three additional possible sources of dizzy spells (and after six months of waiting in vain for the concussion to heal) I finally got so fed up that I decided to go back on gluten. I figured all it does is make me dizzy, and I'm dizzy anyway, I might as well enjoy bread.

I am soooo itchy! Pretty much all over, all of the time. The only known allergen I have is grass (which does give me small hives if I inhale too many particles), but I have not had exposure to grass lately, so the itchiness must be something else. It can't be DH if there's no rash, can it? The areas that it has been bothering me most have been on my back, around my collarbones and neck, and on my forearms. I have no idea what else I could be reacting to. :(

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On 12 December 2015 at 5:03 AM, Galixie said:

e went on to point out that, if I continued to eat gluten, I could develop a "significant degree of atrophy of the balance centre and permanent balance problems." And he ended by advising me to "do your absolute best to be very strict with the gluten free diet."

You really need to stop eating gluten. 

I don't think there's anything else to be said. You need to change your mindset, act as if you'd received a positive celiac test and live accordingly. 

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1 hour ago, Galixie said:

I know I'm adding to a long and old thread, but as I'm really just describing my own idiocy, I figure I don't need to create a separate thread for it. lol

In the realm of 'don't try this at home':

To sum up my previous experience, I've figured out that I have gluten ataxia and it is the only symptom that I was able to clearly point to after reintroducing gluten after a few months off of it. I have some weird intermittent hypoxia issue that no one can figure out (and which is, presumably, not related). I was in a car accident last November that gave me a concussion that I am still trying to recover from. And, last but not least, I'm currently iron deficient on top of everything else.

So, since I now have three additional possible sources of dizzy spells (and after six months of waiting in vain for the concussion to heal) I finally got so fed up that I decided to go back on gluten. I figured all it does is make me dizzy, and I'm dizzy anyway, I might as well enjoy bread.

I am soooo itchy! Pretty much all over, all of the time. The only known allergen I have is grass (which does give me small hives if I inhale too many particles), but I have not had exposure to grass lately, so the itchiness must be something else. It can't be DH if there's no rash, can it? The areas that it has been bothering me most have been on my back, around my collarbones and neck, and on my forearms. I have no idea what else I could be reacting to. :(

You are reacting to gluten.

stop eating gluten, period. You could and possibly might feel even worse, besides itching and dizziness, on a glutinous diet. You are damaging your body.

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I do plan to go gluten free again. I've just been so fed up with my body's various problems that I needed a break from at least one of them, ya know?

It looks like iron deficiency can also cause this type of itching, so it might be related to that. All of the problems I'm currently dealing with (dizziness, hypoxia, iron deficiency) were all happening while I was still gluten free. (The dizziness stopped after going off of gluten in 2015 and came back last November due to the concussion.) Only the itching is new since going back on gluten about a month ago. Considering that I had an iron saturation percent of 12% back in April and it still hasn't been treated yet, I can only imagine how much worse it has become. I bet that is the source rather than DH. I wish I knew for sure...

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I may be wrong but sounds like you are searching for some way that you do not have celiac's and can maybe once in awhile or some day in the future, eat it again some day. Maybe the rash isn't so bad, or it goes away after awhile, or the dizzy isn't so bad, i'll just be careful.  Well please do not underestimate that these are really the minor side effects from Celiac's compared to your future if you do not do what you need to do. The ones that kicked me sleepless nights when I was first diagnosed, were the things down the line that I could get if I do not take care of it ... DEMENTIA, ALZHEIMER'S, COLON CANCER, FIBROMYALGIA, and other very very serious diseases that are awful ways to have to die.  You are getting big ole red flag warnings that gluten is not good for you, your body is crying out to not do it.  So pay attention to your body so you won't be crying later when you have some awful awful deadly disease.

Sorry to be so stern, but my doctor was to me, and it woke me up about it.  Take care!

Edited by Beverage

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Why is it 2 months into your iron level diagnosis and you haven't gotten anything taken care of with it yet? Or do you mean you've been supplementing and they haven't retested you yet? You really need to take care of yourself!

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1 hour ago, Victoria1234 said:

Why is it 2 months into your iron level diagnosis and you haven't gotten anything taken care of with it yet? Or do you mean you've been supplementing and they haven't retested you yet? You really need to take care of yourself!

Sadly there are a bunch of reasons why it hasn't been treated yet.

1. The doctor who I asked to check my iron levels isn't my regular GP, so when everything came back "in the normal range" she didn't think anything needed to be done.

2. It took a month for me to get a copy of the actual results because record requests are, apparently, that slow.

3. The normal range for iron saturation percent has, inexplicably, been lowered from the previous range of 15-50% down to 10-45%, meaning my 12% result was suddenly not considered low.

4. After I finally got my results, saw that my ferritin level was only 27 and my serum iron was only 38 (both just barely in range) I contacted my regular GP who agreed that I should be treated with an iron infusion. But since she doesn't offer those in her office she would need to find a place to refer me.

5. Then my health insurance carrier changed in the middle of all of this and that added the extra wrinkle of the referral needing to be covered by the new health plan, which I wasn't going to be getting a new card for until mid-June.

The upshot is that I have an appointment on Monday to see a hematologist that I saw once before about something completely different who may or may not decide that my iron level needs treating. Either way, I suspect I'll still have a wait even after that appointment before I get actual treatment for the deficiency. In the meantime I'll be trying not to scratch myself bloody in the 90 degree heat. Fun times.

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22 minutes ago, Galixie said:

Sadly there are a bunch of reasons why it hasn't been treated yet.

1. The doctor who I asked to check my iron levels isn't my regular GP, so when everything came back "in the normal range" she didn't think anything needed to be done.

2. It took a month for me to get a copy of the actual results because record requests are, apparently, that slow.

3. The normal range for iron saturation percent has, inexplicably, been lowered from the previous range of 15-50% down to 10-45%, meaning my 12% result was suddenly not considered low.

4. After I finally got my results, saw that my ferritin level was only 27 and my serum iron was only 38 (both just barely in range) I contacted my regular GP who agreed that I should be treated with an iron infusion. But since she doesn't offer those in her office she would need to find a place to refer me.

5. Then my health insurance carrier changed in the middle of all of this and that added the extra wrinkle of the referral needing to be covered by the new health plan, which I wasn't going to be getting a new card for until mid-June.

The upshot is that I have an appointment on Monday to see a hematologist that I saw once before about something completely different who may or may not decide that my iron level needs treating. Either way, I suspect I'll still have a wait even after that appointment before I get actual treatment for the deficiency. In the meantime I'll be trying not to scratch myself bloody in the 90 degree heat. Fun times.

Yeesh... so sorry you are going thru all of this.

As per the duh, If I recall the off brand of neosporin helped me a little bit with my dh, at least the worry I would get an infection. Make sure you aren't even eating a molecule of gluten! 

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The hematologist doesn't think my iron is a problem and I totally forgot to bring up the itching (mostly because I was so floored that he didn't think iron was a problem that I was speechless).

He does think I have low blood volume. Getting that confirmed is not going to happen, so he's treating me for that based on symptoms (mainly hypotension and anemia symptoms). 

I still have the itching and I'm even more confused now than before because, last night, I found one hive-like spot on the back of my shoulder. That's all. Just one.

I don't imagine that iron deficiency itching causes any hives and one single hive doesn't really seem to match DH either. I'm so puzzled I don't know what to make of it.

Now that the low blood volume is being treated, most of the other possible causes for my dizzy spells should be addressed and it's now time for me to go back to a gluten free diet. If the itching is DH, how long does it normally take, after going gluten free, to stop itching?

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On 6/22/2017 at 4:21 PM, Galixie said:

I do plan to go gluten free again. I've just been so fed up with my body's various problems that I needed a break from at least one of them, ya know?

It looks like iron deficiency can also cause this type of itching, so it might be related to that. All of the problems I'm currently dealing with (dizziness, hypoxia, iron deficiency) were all happening while I was still gluten free. (The dizziness stopped after going off of gluten in 2015 and came back last November due to the concussion.) Only the itching is new since going back on gluten about a month ago. Considering that I had an iron saturation percent of 12% back in April and it still hasn't been treated yet, I can only imagine how much worse it has become. I bet that is the source rather than DH. I wish I knew for sure...

You yourself said the dizziness came back with gluten.

you said you looked back to your journal and didn't see dizziness for 4 months.

please reread this thread, it might be enlightening...

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21 hours ago, Galixie said:

The hematologist doesn't think my iron is a problem and I totally forgot to bring up the itching (mostly because I was so floored that he didn't think iron was a problem that I was speechless).

He does think I have low blood volume. Getting that confirmed is not going to happen, so he's treating me for that based on symptoms (mainly hypotension and anemia symptoms). 

I still have the itching and I'm even more confused now than before because, last night, I found one hive-like spot on the back of my shoulder. That's all. Just one.

I don't imagine that iron deficiency itching causes any hives and one single hive doesn't really seem to match DH either. I'm so puzzled I don't know what to make of it.

Now that the low blood volume is being treated, most of the other possible causes for my dizzy spells should be addressed and it's now time for me to go back to a gluten free diet. If the itching is DH, how long does it normally take, after going gluten free, to stop itching?

One hive?  My guess would be a bug bite.  The itching without a rash can be related to celiac disease.  I just had anemia when I was diagnosed.  Turns out I had other symptoms that I chocked up to getting old.  One was itching on my arms near my elbows.  Took about a year for that to resolve on the gluten free diet.  It re-appeared after a good glutening.  So did my little eczema patch.  Now, long gone.  

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