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New, Exhausted, Not Yet Diagnosed, Scared

adab8ca

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adab8ca Enthusiast
adab8ca
Posted

My celiac story is not one of years of suffering undiagnosed but I am a potential celiac and am scared that it ISN'T celiac and have no where to turn if it isn't.

In Feb of this year I started getting tingling hands/feet. Our cat had just died (18+ years) so my Dr. thought anxiety/stress. It gets worse, I get crushing insomnia. Actually, when this all started I had terrible diarrhea (sorry if TMI!) but that subsided after a month or two. I also had horrible headaches for about 2 months (Dr. thought tension). She ran a ton of bloodwork that she said was all "great". I had awful nausea and zero appetite for months. I started working out with a trainer and lost 20 pounds since March, but no way due to exercise.

Eventually ended up going for MRI to rule out MS and brain tumour(I am in Canada and actually went to Buffalo and paid 1000.00 to get one immediately, I was so freaked out). At this time, my tongue started burning as well.

In April, Dr. decided to send me to neurologist for EMG/NCV testing (had the appointment at the end of May). It was all negative but he said it is probably small fiber neuropathy. He then ordered a TON of blood work.

When my GP got the results, she was VERY surprised to see that my Gliadin IgA was 23 (normal <11) Gliadin IgG was 38 (normal <11) and my IgA TTG was >200 (normal <9.99).

I also had a positive ENA result (extractable nuclear antibody, I think) but it was not positive for any of the specific ones they test for (Lupus, SJogrens and RA, I believe). I have had spurious joint and bone pain.

Neuro says absolutely NOT Celiac because there are no GI symptoms and it MUST be Sjogrens. I have no dry mouth or eyes and in fact, my Dr. gave me a B12 shot 3 weeks ago and it helped the burning tongue IMMENSELY. I have been taking B12 sublin. but the tongue is coming back, I am thinking that the shots are working better than pills right now. Neuro is sending me for salivary gland testing.

Dr. sent me to a dietician who declared that my iron was too low (even though on the blood work it stated borderline depleted iron stores, my Dr thought that was OK), my B12 is too low (even though >150 is considered normal and I am about 200) and my Vitamin D is too low (70, whereas normal starts at 75).

Long story even longer, I decided to go gluten-free 3 weeks ago and now feel like I have been hit like a truck. I feel HORRIBLE, like I am about to get the worst flu ever. The pain from my feet to my head, especially in my legs, shins and feet (probably the neuropathy in my feet)..

My biopsy is scheduled for August 31st. I have to go back on gluten for at least a month before.

I hope they find something, this is absolutely ruining my life.

I guess I don't have any questions, I am just introducing myself in hopes that I can learn something, this seems like a very compassionate, knowledgeable place and I am very scared and feeling very alone right now.

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Skylark Collaborator
Skylark
Posted

Welcome and I'm sorry you're so sick and scared.

There are some things you need to know that your neuro seems unaware of. There are neurological forms of celiac disease. You can have an autoimmune reaction in your nervous system that causes all sorts of problems and no gut problems at all. The positive AGA and TTG is a very, very strong indicator that you have autoimmune problems from gluten, no matter what the biopsy shows. Your TTG is through the roof and your low iron, D, and B12 are also really common with celiac and gluten sensitivity. Also, I saw a very prominent celiac researcher talk who said that he thinks as many as 50% of the people with Sjogren's are gluten intolerant. They are not mutually exclusive diagnoses.

You need to find out from your neuro if there were small white matter lesions on your MRI, because that's one of the signs of gluten reactions in the nervous system.

These links are pretty technical, but they talk more specifically about gluten sensitivity and neuro symptoms. They might be helpful if your doctor is inclined to do any research or reading.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Sometimes people do have odd reactions when they go off gluten. Once the biopsy is done, if I were you I'd go gluten-free based on the bloodwork. People can have odd reactions to going off gluten if they're celiac, as it's a huge change for the body. It should settle down. After a few months you can go back to your doctor and see if the AGA and TTG antibodies have fallen. That will tell you for sure whether the diet is affecting your body.

gf-soph Apprentice
gf-soph
Posted

The first thing I thought of when I started reading was B12, the tingling/burning is classic. I have had problems with B12 for years now, and I needed injections for a couple of years as my levels could crash hundreds of points in a month. If the tingling gets better after the injections, and you start to feel it coming back, get an injection. My levels got down to about 80, which can cause neurological damage. I know from long experience that below 300 I feel unwell, so trust your body over the test range.

When your B12 is low you can need quite a few injections to get the levels back up, my Dr did them weekly for 3 weeks, then every 2 weeks for a couple of months, then spaced out with monitoring. If that

danaf617 Explorer
danaf617
Posted

Hi! I'm new here so I don't know much but I wanted to offer support. It sounds like you're having a terrible time. :(

I'm the opposite in that all of my symptoms have been in my gut but I can relate because I feel like it's ruined my life for the last several months.

I hope that you get answers soon and can get on the road to feeling better!

adab8ca Enthusiast
adab8ca
Posted
  • Author

Thank you everyone!!!

I was trying to see what else may cause that high ttg and the other conditions i definitely do not have (diabetes, liver disease etc)...i cannot imagine that a false positive would be as high as >200 and the presence of the AGA indicates trouble to me as well.

i am leaning towards the biopsy and hope they find something,and if they do, i will insist that my family get checked, if not, i will probably still go gluten free because the results indicate some problem to me.

Funny that my GP was only concerned about the low vitamin D but the dietician thought that the others (B12 and Iron) were just terrible, even in the low normal ranges. She said I was the worst celiac she had met in a long time (with respect to blood work and symptoms and depression/anxiety). Well, I guess I have to be good at something! :)

Bettie Newbie
Bettie
Posted

Thank you everyone!!!

I was trying to see what else may cause that high ttg and the other conditions i definitely do not have (diabetes, liver disease etc)...i cannot imagine that a false positive would be as high as >200 and the presence of the AGA indicates trouble to me as well.

i am leaning towards the biopsy and hope they find something,and if they do, i will insist that my family get checked, if not, i will probably still go gluten free because the results indicate some problem to me.

Funny that my GP was only concerned about the low vitamin D but the dietician thought that the others (B12 and Iron) were just terrible, even in the low normal ranges. She said I was the worst celiac she had met in a long time (with respect to blood work and symptoms and depression/anxiety). Well, I guess I have to be good at something! :)

I too am new here but I just wanted to say that you are not alone. I have suffered with Panic attacks, anxiety attacks and depression for 10 years. I have a "beer belly" as my family call it. and other symptoms that point to celiac. I am having the blood test done on Monday. I have also ordered a home testing kit too. I live in England and I have to wait 2 weeks for my results back. And if I get one that is negative then I have the other one. I am also hoping that it comes back as celiac, I know it sounds mad but it will mean there is a reason for me feeling depressed all the time. And then there is hope for me getting better. Which I guess you feel a little the same. I wish you luck and I wish you well, fingers crossed :)

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