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CeliacQuest

Introduction And Symptoms

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Hi,

 

I have been having unusual neurological symptoms called "paresthesias" which has led me to seek medical help. I am feeling water, stinging and burning sensations all over my body that come and go and/or provoked by movement/pressure such as leaning or walking ( I feel water in my feet when walking).

 

My only other health problem are some chronic myofascial pain / trigger points in my upper back / neck muscles and my right hip. I also recently started to develop eczema.

 

I bought a book on Celiac and saw that there can be neurological symptoms. I have been to a neurologist and had a small fiber skin biopsy about two years ago and it was negative for small fiber damage. I have also had EMG's and they are negative. I am now going for an evoked potential test later this month.

 

I had some childhood symptoms which may suggested celiac. I had ideopathic failure to thrive and ideopathic chronic multiple mouth ulcers.

 

I do not have and have not had any gastroenterology symptoms.

 

My neurologist just tested me with a standard celiac panel and it was negative. He tested me for:

1. EMA

2. TTG

3. IgA baseline to check for deficiency so TTG test would be valid.

 

I have considered going to a Celiac disease center for further testing. I live in the northern Virginia / DC area. I saw the university of Maryland disease center and the Columbia disease center are the closest. I think the Columbia and the Chicago may be the best. The Celiac book I have was written by the Columbia school Dr.

 

Any advice will help. Below is the back story of how I developed these symptoms.

 

Thank You

 

Back Story

 

These are the events that led up to my symptoms. Early in 2006 I was heavy in weight lifting and eating about half a loaf of bread a day as suggested by a trainer. I developed a chornic stiff neck at the base of the skull. I remember getting extremely hungry and I was forcing myself to eat double. After I got out of college I was not training anymore but I was strangely hungry all the time no matter how much I ate. Later that year I had some unusual "water running through legs" symptoms" in 2006. This lasted for about a year and went away. I have now learned this was a paresthesia, or neurologic symptom. I believed the symptoms at the time were caused by weight gain and sedentary activity. I gained weight suddenly for the first time in my life during this time.

 

In 2008 I developed severe symptoms of electric shocks in the head, TMJ dysfunction, dizziness, balance problems etc. I eventually found out these symptoms were caused by a muscle problem caused "trigger points". No doctors could figure it out and all tests were negative. I went to hospital once and a nurse there told me I should look into Lyme disease.

 

In 2010 I found a message therapist who was trained and certified in trigger point therapy and after a few treatments she gave me the business card of a doctor and suggested I see him in case I may have an underlying medical perpetuating factors. I saw the doctor and somehow or another he gave me a test for Lyme disease, I may have asked for it. I think I started researching the "weird non-proven" kind and the Dr. gave me a test for that. I got a call and he said it was positive. I was not the official test though.

 

I researched it some and went to lymedisease.org and got a referal to see a doctor who "specialized" in it. I now believe these doctors are totally nonsense. However, at the time I thought if I had an infection then I should get it treated in case that was causing my muscle problem and if worked, great, if not I can always go back to trigger point therapy.

 

A few weeks into the antibiotic treatment which was highly unconventional I developed paresthesias all over my body. They felt like rain drops, snow flakes and then stinging and burning. The doctor said I was infected with Bartonella and Lyme bacteria and that was the antibiotics fighting the infection. Somehow this convinced me he was right because this should not be caused by antibiotics. After researching more and talking to others around the country I realized that this was all nonsense. I realized the tests were not valid and people were not getting better and just being told they had "chronic lyme disease".

 

I took the antibiotics for maybe 5 months. He gave me Bactrim, Refampin, Minocyclin and Azithromycin. It took almost two years for the sensations to go away and they went away slowly and I got very worried. Eventually I forgot about them and was very happy when they were gone. I also experimented with an unusual diet called a "ketogenic diet" and was eating gluten free as far as I know. I was eating mustly fatty meat, leafy vegetables and butter and olive oil and no processed foods. I may have had some hot sauces which should have been free of gluten and I even called afterward. I also ate bacon. I thought it couldn't be celiac because I was gluten free anyway.

 

I then came down with an upper respiratory infection and suddenly all the sensations came back all over. I was heart broken. I stopped the ketogenic diet and gave up gluten free and I waited 6 months and they slowly healed to be mostly in my feat and then I had another upper respiratory infection and they came back all over again and that is where I am now.

 

I also developed eczema for the first time in my life about two years ago and it lasted a year and grew big on my arm. I don't know if that is related. The eczema also started to come back somewhere around the upper respiratory infection, but the eczema is very small and not strong this time.

 

I had been thinking the doctor was crazy and somehow the antibiotics did something to my immune system and I wish I never saw the lyme disease doctor.

 

For a while I thought maybe this was Celiac and felt better for a while, but now the test results are negative, so I don't know. The Celiac book says that for some people sensory neuropathy is the only symptom.

Edited by CeliacQuest

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Welcome!

 

Yes, celiac disease has over 300 associated symptoms and not all people have GI symptoms.

 

A couple questions on your testing:

 

When you said you were tested for Agg....did you mean Total Serum IgG level?  Normally a Total Serum

 IgA is run to be sure there is not a deficiency.

 

Do you know if you had both tTG-IgA and tTG-IgG?

 

I would also recommend having both DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)

 

Additionally, if you haven't had any or recent nutrient testing I would add:

CMP (Complete Metabolic Panel)

B12, D and Iron - minimally...some celiac docs request additional nutrients

 

Your primary doctor or any specialist can order these tests.

 

Do not remove gluten until testing is complete.  Once testing is complete then remove ALL sources of gluten for at least three months (six is better) to monitor symptoms.  Complete elimination is the only test for Non-Celiac Gluten Sensitivity.  NCGS shares many of the same symptoms with celiac disease without producing the antibodies measured in the celiac blood work.

 

Good luck to you :)

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Welcome!

 

Yes, celiac disease has over 300 associated symptoms and not all people have GI symptoms.

 

A couple questions on your testing:

 

When you said you were tested for Agg....did you mean Total Serum IgG level?  Normally a Total Serum

 IgA is run to be sure there is not a deficiency.

 

Do you know if you had both tTG-IgA and tTG-IgG?

 

I would also recommend having both DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)

 

Additionally, if you haven't had any or recent nutrient testing I would add:

CMP (Complete Metabolic Panel)

B12, D and Iron - minimally...some celiac docs request additional nutrients

 

Your primary doctor or any specialist can order these tests.

 

Do not remove gluten until testing is complete.  Once testing is complete then remove ALL sources of gluten for at least three months (six is better) to monitor symptoms.  Complete elimination is the only test for Non-Celiac Gluten Sensitivity.  NCGS shares many of the same symptoms with celiac disease without producing the antibodies measured in the celiac blood work.

 

Good luck to you :)

I meant IgA deficiency. I corrected my post. The standard Celiac panel has those three tests.

 

I was not on a gluten free diet at the time, but I don't eat a lot of gluten. My staples consist of unprocessed food mostly brown rice, chicken and vegetables. I do eat out and have ordered several sandwiches, sushi, noodles and other things which may not be gluten free. My own food is generally gluten free though even though I'm not trying to be gluten free anymore since my symptoms came back when I thought I was gluten free.

 

That makes me wonder if I should eat gluten twice a day or something for these tests. Also, on the chance that this is actually caused by a gluten related disease I have heard the neurological symptoms don't always go.

 

I'm pretty sure my TTG was just IgA. That is all I remember seeing on the paper. That is the more specific one to celiac I've read. I have read that AGA can also be positive and TTG negative with Celiac, but that AGA is also not as specific to celiac as TTG.

 

I think they do some kind of staining on the biopsy too, so they confirm somehow different ways on the biopsy with different biopsies. I don't know if anyone has ever had a negative stomach biopsy and somehow diagnosed with gluten disease either by skin biopsy or some other method. I know skin biopsy on dermatisis herpataformis is confirmation, but I don't think I have that. I don't know if that could be positive and stomach biopsy negative, that would be interesting.

 

My eczema rash thing doesn't look like dermatitis herpatiformis I don't think. I don't get blisters, but do get bumps and a flat rash near the elbow. I didn't take a picture last time it got big, but I thought I did.

 

I think DGP and AGA (anti-Gliadin) might be good tests. I still don't know how much gluten I have to eat or for how long. Also, if I wasn't eating that much gluten then I don't understand why I would have these neurological problems and be so hard to detect.

 

I read that myalgia can also be caused by gluten related diseases, but mine didn't go away while off gluten.

 

I think if I want more tests I need to find somebody who really knows what they are doing rather than just asking my neurologist to run more tests based on what I read. Somebody needs to interpret it all too. I saw that there is a celiac doctor referal site with listings of gastroenterologists in one's area. But, I was considering a celiac disease center like Columbia or maybe Maryland which is closer.

 

I've heard that people get paresthesias, but that seems to be numbness in the hands and feet or something like that. For me I get the other kind of abnormal sensations, cold water and burning stinging, but all over. It doesn't stay in any one spot.

 

Thank You

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I meant IgA deficiency. I corrected my post. The standard Celiac panel has those three tests.

 

I was not on a gluten free diet at the time, but I don't eat a lot of gluten. My staples consist of unprocessed food mostly brown rice, chicken and vegetables. I do eat out and have ordered several sandwiches, sushi, noodles and other things which may not be gluten free. My own food is generally gluten free though even though I'm not trying to be gluten free anymore since my symptoms came back when I thought I was gluten free.

 

That makes me wonder if I should eat gluten twice a day or something for these tests. Also, on the chance that this is actually caused by a gluten related disease I have heard the neurological symptoms don't always go.

 

I'm pretty sure my TTG was just IgA. That is all I remember seeing on the paper. That is the more specific one to celiac I've read. I have read that AGA can also be positive and TTG negative with Celiac, but that AGA is also not as specific to celiac as TTG.

 

I think they do some kind of staining on the biopsy too, so they confirm somehow different ways on the biopsy with different biopsies. I don't know if anyone has ever had a negative stomach biopsy and somehow diagnosed with gluten disease either by skin biopsy or some other method. I know skin biopsy on dermatisis herpataformis is confirmation, but I don't think I have that. I don't know if that could be positive and stomach biopsy negative, that would be interesting.

 

My eczema rash thing doesn't look like dermatitis herpatiformis I don't think. I don't get blisters, but do get bumps and a flat rash near the elbow. I didn't take a picture last time it got big, but I thought I did.

 

I think DGP and AGA (anti-Gliadin) might be good tests. I still don't know how much gluten I have to eat or for how long. Also, if I wasn't eating that much gluten then I don't understand why I would have these neurological problems and be so hard to detect.

 

I read that myalgia can also be caused by gluten related diseases, but mine didn't go away while off gluten.

 

I think if I want more tests I need to find somebody who really knows what they are doing rather than just asking my neurologist to run more tests based on what I read. Somebody needs to interpret it all too. I saw that there is a celiac doctor referal site with listings of gastroenterologists in one's area. But, I was considering a celiac disease center like Columbia or maybe Maryland which is closer.

 

I've heard that people get paresthesias, but that seems to be numbness in the hands and feet or something like that. For me I get the other kind of abnormal sensations, cold water and burning stinging, but all over. It doesn't stay in any one spot.

 

Thank You

 

If you wish to pursue more testing...ingest gluten at least once per day for twelve weeks - a slice of glutenous bread is sufficient.

 

It is hard to know if your "gluten light" diet impacted your results without a gluten challenge.  

 

If your symptoms worsen on a challenge....that is also a piece of the diagnostic puzzle.

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If you wish to pursue more testing...ingest gluten at least once per day for twelve weeks - a slice of glutenous bread is sufficient.

 

It is hard to know if your "gluten light" diet impacted your results without a gluten challenge.  

 

If your symptoms worsen on a challenge....that is also a piece of the diagnostic puzzle.

Ok, I guess I'll start buying bread and eating it every day. I may need to do that before I go to one of those centers if I do go. They might tell me how to prepare before bothering with a visit.

 

The weird thing is that if there is any chance my neurological symptoms are caused by gluten then you would think my body would be reacting strong enough to make the tests positive too.

 

I don't seem to get the symptoms until an upper respiratory infection though, but they take a long time to heal. I may just have some really weird condition they can't even test for or have a specific name for. The doctors at johns hopkins told me that they thought it was immune mediated the first time after about 10 months of the symptoms not going away after taking all those antitbiotics.

 

Thank You

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Ok, I guess I'll start buying bread and eating it every day. I may need to do that before I go to one of those centers if I do go. They might tell me how to prepare before bothering with a visit.

 

The weird thing is that if there is any chance my neurological symptoms are caused by gluten then you would think my body would be reacting strong enough to make the tests positive too.

 

I don't seem to get the symptoms until an upper respiratory infection though, but they take a long time to heal. I may just have some really weird condition they can't even test for or have a specific name for. The doctors at johns hopkins told me that they thought it was immune mediated the first time after about 10 months of the symptoms not going away after taking all those antitbiotics.

 

Thank You

 

You are welcome -- if you are going to schedule a visit to a Celiac Center, I would give them a call to ask what they would like you to do if you are planning to travel to their facility -- it can be extremely beneficial and time saving to have all the necessary blood work ordered by your primary before the visit -- especially if you need to travel to get there.

 

I can't answer all your questions...but certainly can tell you it is wise to rule out gluten and/or celiac as causing or contributing to your concerns.

 

Hang in there :)

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Honestly, in reading your post, before you mentioned Lyme, I thought...Lyme.  The initial tests for Lyme were positive you state, but then you went to a doctor who treated you and then you believed that doctor to be a not treating you correctly, or the tests to be nonsense--is that right?

 

My husband has a long history of neurological Lyme and is currently doing well.  You may wish to revisit all of that paperwork.

 

As to having celiac, I am no expert and cannot speak to that. Its possible, but do make your current doctor(s) aware of the Lyme history, whether it was a real case of it or not, it is important to note.

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Honestly, in reading your post, before you mentioned Lyme, I thought...Lyme.  The initial tests for Lyme were positive you state, but then you went to a doctor who treated you and then you believed that doctor to be a not treating you correctly, or the tests to be nonsense--is that right?

 

My husband has a long history of neurological Lyme and is currently doing well.  You may wish to revisit all of that paperwork.

 

As to having celiac, I am no expert and cannot speak to that. Its possible, but do make your current doctor(s) aware of the Lyme history, whether it was a real case of it or not, it is important to note.

No, you don't understand the test and doctor that said I had Lyme disease was fake. There are fake lyme disease tests from non-standard labs. The real lyme disease test I had was negative.

 

These out of network "lyme disease doctors" from lymedisease.org are diagnosing and using these fake tests. They are then telling people they have chronic lyme disease when they don't get better.

 

Also, just because this is something we can't explain doesn't mean it is Lyme disease. None of my symptoms were really specific to lyme disease. I didn't have bells palsy and didn't have any swollen knees either. There is a huge movement of people calling all sorts of things lyme disease. The one who gave me antibiotics likely did something to my immune system, so antibiotics are not harmless. I didn't get a simple doxycycline either, or short course of azithromycin for upper respiratory infection.

 

If some new research comes out with a new test like the nano trap antigen test and it shows that I and others do have lyme disease it will change everything and turn the world on its head. If that happens and that test is approved as as valid I'm sure the government will get involved and major institutions to create a new cure for lyme disease. However, that hasn't happened. That test is supposed to come out early this year. I have no idea if it will be considered valid. It was created in partnership with GMU. It works well for early detection. It could also prove people don't have infection who have been told they have "chronic lyme disease" I would imagine because it uses the lyme antigens and does not rely on antibody response. Any active infection should produce antigens as I understand.

 

If some new proof comes out and says I have lyme disease and there is a cure I would be a fool not to take it, but that has not happened.

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the neuro sx are not always related to the gut sx.   it can be a direct attack on the brain but gliadin (I think)  check out research by Dr Hadjivousilou (spelling)  on NIH.

Dr. Marios Hadjivassiliou says to test for gliadinj igA and igG while on a gluten diet. I'll start consuming gluten every day now and tell my neurologist about those tests. I don't know if I need to wait 12 weeks. I don't know what to do after those tests though. He says there is a Gluten Neuropathy as well as Gluten Ataxia in his papers.

 

The confusing this is that these tests are highly specific to gluten problems, but if I understand they appear to be more sensitive to detecting problems or have some correlation or causation. I think there is even something written about gliadin interacting with anti-ganglioside antibodies which are nerve cells. So, a good test may be to eat a lot of gluten and then test gliadin igA and igG and also all of the anti-ganglioside antibodies as well.

 

The papers are confusing because there appears to be suggestions of some relation, but gliadin is also said to be a somewhat normal antibody to food and does not mean it is causing disease. That is why gliadin is not normally used for celiac disease. However I have heard it can be used to increase the number of people who should go for biopsy and then there are more confirmed cases at that point.

 

I don't know however what happens if one is suspected of having Gluten Neuropathy and a negative biopsy is found after positive gliadin igA and igG what that would confirm as far as really having Gluten Neuropathy.

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