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Meggie

Something Found In The Blood Test, Dr's Called Me In...

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Hello Again.

So I had a call from the Dr's office who couldn't discuss things over the phone, but said that the Dr needs to see me to discuss the results of the celiac screen blood test. Normally when i phone up for results (and there's been enough of those lately :rolleyes: ) they just say over the phone 'no action required', so I'm guessing that something came up and I'll need the biopsy.

I understand that just because something comes up in the blood test that it doesn't neccessarily mean it's celiac's. So what exactly does it mean then? I mean, if it's not celiac's then does it indicate anything for sure, like would it therefore indicate a gluten sensitivity in some way, whether it be an intolerance or an allergy? Or does the test not really indicate anything specific at all? Sorry if my question doens't make any sense.

Thanks

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There are many many offices that won't give any info over the phone, good or bad.

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There are many many offices that won't give any info over the phone, good or bad.

Yeah, I'm sure you're right, but mine does. I've been going there for years, and I've had a multitude of recent tests and they definately give them out over the phone. The only ones they don't is if something comes up and it needs further action. I'll ask the Dr for as much info as she can give me, then I'll ask for a print out to see if anyone here knows more.

My appointment is in a few hours, (I'm in Australia) so I'll be back a bit later.

Cheers

Meg

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Ok, so Dr was very honest and said she doesn't know anything about Celiacs.

The blood test was borderline and I've been refered to a gasto. I had been refered anyway due to symptoms. Here are the results, so anyone in the know I'd really appreciate your thoughts since the GP was no help.

Total IgA : 2.2 g/l (0.7 - 4.0) so this was normal

Anti - tissue Transglutaminase IgA (anti-tTg IgA) : 3.6 U/ml (negative <2.0) (borderline 2.0 - 3.9) (positive > 3.9)

It said 'Borderline levels of tTg IgA detected. Significance at this level is uncertain. Consider HLA-DQ typing if clinically indicated. '

So what do you think?

I had been off gluten for just over a week and was only back on it again for four days, do you think that could have effected the result?

So if it's not actually celiac's, do you know what this level actually means, if anything?

Thank you very much in advance.

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Ok, so Dr was very honest and said she doesn't know anything about Celiacs.

The blood test was borderline and I've been refered to a gasto. I had been refered anyway due to symptoms. Here are the results, so anyone in the know I'd really appreciate your thoughts since the GP was no help.

Total IgA : 2.2 g/l (0.7 - 4.0) so this was normal

Anti - tissue Transglutaminase IgA (anti-tTg IgA) : 3.6 U/ml (negative <2.0) (borderline 2.0 - 3.9) (positive > 3.9)

It said 'Borderline levels of tTg IgA detected. Significance at this level is uncertain. Consider HLA-DQ typing if clinically indicated. '

So what do you think?

I had been off gluten for just over a week and was only back on it again for four days, do you think that could have effected the result?

So if it's not actually celiac's, do you know what this level actually means, if anything?

Thank you very much in advance.

Hi Meggie,

I was in a similar predicament to you about 6 weeks ago. I was experiencing stomach cramps, flatulence, tiredness, sluggishness so I went to see my GP. She sent me to get a Celiac Panel blood test. All tests came back negative except for the Anti-tissue Transglutaminase IgA (anti-tTg IgA) which was 66 u/ml so this was a high reading and is one of the most sensitive tests for Celiacs. I then went to a gastroenterologist (a very rude one!) and had an endoscopy (5 samples taken) and all came back negative. I was rather disappointed as all my symptoms pointed towards Celiacs. I have since had another blood test and the Anti-tTg IgA came back as 1.65??? So who knows.

My gastroenterologist has also sent me for a genetic blood test to see if I have the genes associated with Celiacs but these results have not yet come back. I'm playing a waiting game now which is rather frustrating.

I decided that I would go gluten free to see how my body reacts to no gluten and I can say after one day I feel better! I'm just disappointed that I didn't get a definitive medical diagnosis.

Good luck with your diagnosis. Knowing what I know now I would advise you to get the HLA-DQ typing done first before going to get an endoscopy - this is mainly due to costs - I also live in Australia and considering I have private health insurance my out of pocket expenses for this surgery were considerable!!

Take care

Sue

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Hi Sue

What's the HLA-DQ typing? Is that the genetic test? I don't have any private hospital cover, so my out of pocket expense for the endoscopy and biopsy is going to be enormous.

How annoying. FOR BOTH OF US!!!!!

Ok, thanks for your help.

Let me know how you go with your genetic testing??

Meg

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Hi Sue

What's the HLA-DQ typing? Is that the genetic test? I don't have any private hospital cover, so my out of pocket expense for the endoscopy and biopsy is going to be enormous.

How annoying. FOR BOTH OF US!!!!!

Ok, thanks for your help.

Let me know how you go with your genetic testing??

Meg

Yes the HLA-DQ typing is the genetic test. Supposedly there's two genes that are associated with Celiac's. If you don't have these genes then it's very unlikely that you will get Celiacs (that's what I've been told anyway). I've found the whole diagnosis very frustrating. It's almost like no one knows or there are so many variables as to whether you could have it or not.

And Yes your out of pocket expenses will be enormous - I'm still paying for mine! Between the cost of the GP, gastro Dr, blood tests, anaethestis dr I think I'll be up for at least $1000!! That's including Medicare and Private Health Insurance rebates.

It's already been two weeks now since I had the HLA-DQ typing test and still no results - I have no idea how long it will take...

Anyway might try and ring my Dr again to see if they've come in.....

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Yes the HLA-DQ typing is the genetic test. Supposedly there's two genes that are associated with Celiac's. If you don't have these genes then it's very unlikely that you will get Celiacs (that's what I've been told anyway). I've found the whole diagnosis very frustrating. It's almost like no one knows or there are so many variables as to whether you could have it or not.

And Yes your out of pocket expenses will be enormous - I'm still paying for mine! Between the cost of the GP, gastro Dr, blood tests, anaethestis dr I think I'll be up for at least $1000!! That's including Medicare and Private Health Insurance rebates.

It's already been two weeks now since I had the HLA-DQ typing test and still no results - I have no idea how long it will take...

Anyway might try and ring my Dr again to see if they've come in.....

If you should decide to do the gene typing no matter what the results of the typing please give the diet a good shot. There are more than just the 2 commonly looked for genes that are associated with celiac. The truest test of all IMHO is going to be the diet. You can start as soon as all the celiac related testing involving blood and endo is done.

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Yes, I'll definately go gluten free as soon as I can.

I haven't really shared my history yet. Sorry it became so long, but I wanted to share, hopefully I'm in good company.

After slowly slowly getting more and more sick over the past 8 years, really just thinking I was a weak, crap human being. Thinking I had personal issues, that I couldn't cope with life at all, I really thought I was somehow a weak substandard person with a bad constitution or something. It just crept up on me.

I was ALWAYS low in iron, even when I was on iron tablets, they just didn't seem to sink in somehow. I've always had bad skin, have been very weak, pale and with dark circles around my eyes.

After having three babies within four years, and some additional stress in my life, I developed what I began to think was post natal depression and anxiety. I had constant pains in my belly, and bloating, my food was always coming back up (not vomiting, just reflux) I've had a constant sore throat for 10 months, which sometimes feels ulcerated. Plus I've had about 30 mouth ulcers in the past year. Slowly over the past year Ive felt like I'm just not coping with life at all, constantly breathless and weaker than ever. I get strange heart palpitations, and my mind / head has been so foggy that at times I've wondered if I was awake or asleep, or perhaps I'd even died or something. I have felt like nothing was real or nothing mattered. I was unable to make eye contact wth people anymore due to my eyes going a bit wierd. There were times when I coulnd't actually make out what people were saying to me as I felt so confused and disoriented. I started seeing sheets of light sometimes out the corner of my eye. My speech started sluring a bit, and I noticed my whole left side was much weaker and sluggish compared to my right. Somtimes my belly was in such pain, I'd be doubled over. I went on Nexium which didn't help.

I started taking anti depressants and having counselling at the Dr thought I was a simple post natal depression case and very stressed. I didn't have anything to talk to the counsellor about because aside from how I've felt there really wasn't anything wrong. So I've had ultrasounds on my liver, and belly, uterus, I've had a CT scan for tumours, I've had an Echo on my heart, I've had my teeth checked (for the sore throats) (they found erosion of the enamel) I've had my eyes checked, countless blood tests. Seen a counsellor, thyroid checked, all fine.

Then I met a lady who'd recently been diagnosed with celiac's and she mentioned a few of the symptoms, described the pale brown stool's, and the greasy ones that stick to the bowl, talked about the mouth ulcers and bloating etc. I started to wonder, as I'd had these symptoms, then she mentioned being low in iron. I had not heard of celiac disease before.

Anyway, when I started googling I discovered that it accounted for all my symptoms except the sore throat. However bad reflux causes sore throats, so I'm thinking it could be that...

Anyway, I went to see a naturopath and it's been discovered that I have a pretty bad internal candida infection in my small intestine and possibly through my blood, which may have caused the nerve damage.

My liver function is bad.

Since being treated for my candida infection I'm feeling a lot better, the Naturopath put me on a strict gluten free, yeast free, sugar free, milk free diet in addition to the medication bits she gave me. So I went gluten free for nearly two weeks, but had to start eating it again to rule out celiacs. So I've kept up the rest of the candida diet, except I'm currently eating gluten again, and my throat is killing me again.

I've since looked at my Nana's health, my dad's health and my daughters health and thought, they really could all be celiac's too.... so although I'm dying to go gluten free once and for all, I'm also curious to get a proper diagnosis with the biopsy, not just for my sake, but maybe for my dad and three children's sake too.

The only thing is that there is a big wait for a biopsy, even though I've elected to go privately, so I'd need to keep up the gluten intake for a few months yet.

I'm really confussed as to what to do. I phoned my naturopath who is URGING me to stop the gluten right now, saying that it's doing me such harm especailly due to the candida infection, and now the blood's in and it's saying there are the antibodies there. She said to me tonight that even if I'm not celiac that I obviously have a huge sensitivity and need to be gluten free.

I just don't know what to do, I'm so torn, I really want to just get well NOW, not wait a day longer to go gluten free, I've been sick for so long, I have three little ones who need me to be at my best ASAP too, but I know I'll always wonder about the biopsy.....

What would you all do?

If you've got this far and read this big epic well done and thank you ;)

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I'm in canada and I was told it would be months for the biopsy too but it was only two weeks. Find out when exactly you can get the biopsy. Your in a grey zone with the borderline ttg IMHO.

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Those are really awful symptoms Meggie and I truly sympathize with you - particulary being pregnant 3 times through it all and now having 3 littlies to care for.

I was diagnosed with IBS at 3 years old (hospitalized). They called it nervous stomach then (all stress related - a 3 year old?!), then it was called spastic colon and now IBS. My symptoms have changed a lot over the years with mostly constipation and now really bad diarrhea, nausea, spacey head, gut pain, gas, bloating, more recently I've been getting aching pain in my limbs and migraines. There are other symptoms but some are off and on...

Are you in Canada? I am - I waited I think 9 months for my colonoscopy and was sure I would have an endoscopy but the GI didn't do it. I, for some reason, assumed I would since my doctor referred me and she knew I wanted that done. All very upsetting!

As for the wait - I'm not sure what will happen for me - if you're in Canada too, perhaps with all your symptoms you'll be fast-tracked. Have you thought about taking yourself to Emergency? I know it's awful to suggest that, but if you do, your wait will be next to nil. I found this out when my DD had bad pain and she got in to see a gynaecologist the NEXT DAY whereas on the usual track, we were on a waitlist of 6-7 months! Ridiculous...her surgery was also done within a week of visiting this doctor! If you go in and tell them what you've gone through, cry (because you likely will get emotional anyway), they'll listen to you. The rare times I've needed to take my kids in, they've been amazing. So nice, and thorough.

You need a big hug! you've put up with way too much. Do you ever feel like you aren't the best you could be as a mom? I do. I feel like my 4 year old is getting the raw end of the deal here. I'm often too sick and exhausted to find the energy to do anything - esp. after a day at work. It consumes me. I worry constantly that she'll remember me this way - this is what I plan on telling my doctor next week - it may get me nowhere, but she'll listen I'm sure. I also feel I don't tell my doctor enough. I don't complain enough iykwim. I hate to sound like a complainer and I'm worried that even after waiting all those months to see a GI, I didn't step up to the plate for myself when I was telling him my symptoms!

Good luck - and keep advocating for yourself - you're worth it...

Tracy

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Tracy

Thank you so much. :wub:

Hello up there in Canada, I'm down here in Australia. ;)

YES YES YES, I very much feel / know that my health has effected my ability to mother my babies the way I really wanted to. Especially since my second, my poor darling, she's only two now, and I feel that she's hardly had a life at all. I just don't have it in me to do all the things I want to with her and for her. I mean my children are all cared for and loved, but they don't get the activity they need, and as a result my two year old is delayed in her speech, as I've not engaged her properly. I really can't express how tired and weak I am all the time. I too worry that my five year old is going to remember her life and me this way. My poor new baby, well, he's 10 months old now, he's no where near had from me what he needs and deserves. I mean there are lots of cuddles, and warmth, that I can do sitting down, but I don't have the energy to talk and sing to them or do things with them the way I should.

And YES, i too, have just recently though that I haven't 'carried on' enough about how I've been to the Dr. I actually did burst into tear the last time I went to see her. I will write a big list down to go through with the specialist Gasto when I see him, in about 6 weeks. Thank you for mentioning it to me, yes, I need to drive this thing more myself, not sit back and hope they look after me. I tend to not want to cause a fuss, or not want people to think I'm neurotic or something, but I look around and see that those who make the most noise do really get the best attention, especially amongst health care workers.

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Yes, Meggie, when it comes to your healthcare you really have to be proactive, and not minimise your symptoms in any way. Doctors are used to having people overdramatize how bad they feel, so those that don't take control and stresss how much they are suffering (doing it in a non-dramatic way of course) tend not to get listened to at all, just as those who are overly dramatic are ignored. Doctors are mostly looking to get you out of their office as quickly as possible, and if you co-operate you are never going to be heard. So you have to be forceful and knowledgeable and tell them what you need (and, if necessary, cry :lol: ) to be taken seriously. The more you know, and can demonstrate what you know, about your condition, the more you are going to be heard. I have found that they even like it if you can suggest a cogent course of action to follow (if you have the right doc, that is). A list is a necessity because it is very easy for them to deflect you away from the real issues and have you leave without getting the answers you need.

Good luck on your next appointment and I hope you get the answers and the help you need. {{{{hugs}}}}

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Tracy

Australia and N.Z. - been to both and gorgeous countries both! Loved Christchurch and stayed on a sheep farm outside Christchurch - beautiful! Spent 8 mos. Australia all over and twice in N.Z. 4 months total there.

I'm glad I posted here - it's solidified my decision to tell my doctor how awful I feel. Right now I just want to take a massive sleeping pill and sleep. I feel so awful and I'm (god forbid) feeling sorry for myself - who has time for THAT?! LOL

What's that saying Meggie - the squeaky wheel gets the grease? Guess that's the way we need to be when we see the doc next time round. Reading the posts I remembered last year when I got an abcess tooth and was in 10 out of 10 pain. I had been given drugs that didn't work and went to see my doctor. She walked in and saw a completely different person than she was used to seeing - I'm usually fairly "up" and cheerful. Well, there I was sitting in the chair head down on the exam table next to me and crying! I could barely talk to her LOL! She was seriously wide-eyed and could tell my pain was through the roof. She had recently experienced an absess tooth and quickly wrote up a prescription for Oxy contin (something like that - triplicate prescription narcotic drug!). Kicker is, it didn't work! Anyway, I was reminded that I indeed had her attention!

I don't go in for dramatics at all. I was truly in excruciating pain at the time. The pain and discomfort I experience now is nagging, ongoing and impairs my ability to live a normal life. I can still do all the necessary things, many moms have to do it all, even sick. It just is not easy.

Again, good luck to you.

Tracy

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Meggie,

Don't you think it's nice to know that it's all not in your head and there are lots of people who feel/felt just like you do!!!!! Welcome to Celiac World.

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Oh YES ahorsesoul, I am so relieved lately. Whether it's celiac's, a gluten allergy, wheat allergy, or a gluten sensitivity, or even just the candida infection systemically, I feel like I'm at least on the right track now after all this time. I've been below par for most of my life.

As soon as celiac is ruled in or out, I'll be going gluten free anyway, and when I've been candida free, and gluten free for a while, I'm thinking I might have some general allergy testing, just to make sure. I feel like there's light at the end of the tunnel, or health at the end of the tunnel at least.

Yes, i certainly did think it was 'just me' and so did my mum and husband!!!!

Thanks for the welcome :)

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After having three babies within four years, and some additional stress in my life, I developed what I began to think was post natal depression and anxiety. I had constant pains in my belly, and bloating, my food was always coming back up (not vomiting, just reflux) I've had a constant sore throat for 10 months, which sometimes feels ulcerated. Plus I've had about 30 mouth ulcers in the past year. Slowly over the past year Ive felt like I'm just not coping with life at all, constantly breathless and weaker than ever. I get strange heart palpitations, and my mind / head has been so foggy that at times I've wondered if I was awake or asleep, or perhaps I'd even died or something. I have felt like nothing was real or nothing mattered. I was unable to make eye contact wth people anymore due to my eyes going a bit wierd. There were times when I coulnd't actually make out what people were saying to me as I felt so confused and disoriented. I started seeing sheets of light sometimes out the corner of my eye. My speech started sluring a bit, and I noticed my whole left side was much weaker and sluggish compared to my right. Somtimes my belly was in such pain, I'd be doubled over. I went on Nexium which didn't help.

Hi Meggie,

Welcome to the board!

I'm so sorry about the circumstances that bring you here though....your story had several similarities to mine so I just had to respond. You aren't alone; so many of us are or have been in the same boat!

For example, I had 4 children in 5 and 1/2 years, so I know where you're coming from! :)

In my twenties and thirties I started to have many of the symptoms that you've described, especially the acid reflux and canker sores in the mouth. I had already been diagnosed with IBS in my teens because of my gastric woes. I had abdominal pain so bad I'd literally be on the floor writhing in agony for 6 - 8 hours at a time. I didn't connect the dots to celiac disease at that time, though.

I only started developing the neurological symptoms later in life (late 40s early 50s): blurry vision, headaches, brain fog, difficulty speaking...sometimes my mouth felt so clumsy that I would even bite my tongue accidentally when I tried to speak!! Brain fog and difficulty speaking are nothing less than death to my career, since I'm now both a scientist and a mathematics professor! :(

I started taking anti depressants and having counselling at the Dr thought I was a simple post natal depression case and very stressed. I didn't have anything to talk to the counsellor about because aside from how I've felt there really wasn't anything wrong. So I've had ultrasounds on my liver, and belly, uterus, I've had a CT scan for tumours, I've had an Echo on my heart, I've had my teeth checked (for the sore throats) (they found erosion of the enamel) I've had my eyes checked, countless blood tests. Seen a counsellor, thyroid checked, all fine.

If your thyroid is unaffected you're SO lucky!! I have Hashimoto's thyroiditis, another autoimmune disease frequently associated with celiac, and my thyroid has pretty much been totally destroyed.

My liver function is bad.

Celiac disease frequently affects the liver; see the following article for more info:

http://www.celiac.com/articles/21501/1/Cel...ders/Page1.html

I actually have autoimmune hepatitis, but more about that later....

So I went gluten free for nearly two weeks, but had to start eating it again to rule out celiacs. So I've kept up the rest of the candida diet, except I'm currently eating gluten again, and my throat is killing me again.

That's how I started too....I went gluten free for about a week and a half, and started to feel SO much better, but had to go back on gluten for testing.

I've since looked at my Nana's health, my dad's health and my daughters health and thought, they really could all be celiac's too.... so although I'm dying to go gluten free once and for all, I'm also curious to get a proper diagnosis with the biopsy, not just for my sake, but maybe for my dad and three children's sake too. The only thing is that there is a big wait for a biopsy, even though I've elected to go privately, so I'd need to keep up the gluten intake for a few months yet.

Autoimmune diseases run rampant in my family; two of my aunts died of complications of lupus, my father had rheumatoid arthritis, my daughter Robin has Hashimoto's thyroiditis, my daughter Cheryl has lupus and Addison's disease, my granddaughter Carly has celiac, my granddaughter Emma has asthma (and possible celiac disease), while I have seven autoimmune diseases: Hashimoto's, celiac disease, asthma, psoriasis, autoimmune hepatitis, Sjogren's Syndrome, and rheumatoid arthritis. I also have fibromyalgia. The combo of RA and fibro have put me in a wheelchair (temporarily, I hope).

I tell you this NOT to make you feel sorry for me but to emphasize why it is so important that you have a diagnosis if at all possible. Your whole family's health may eventually benefit from what you discover....because the latest research indicates that celiac disease may be the mother of other autoimmune disorders; it "opens the door" so to speak for other diseases to develop. Please read the following article about this; it's a real eye-opener!

http://www.umm.edu/news/releases/zonulin.htm

Most of my family is now gluten free....and feeling better! :)

I'm really confused as to what to do. I phoned my naturopath who is URGING me to stop the gluten right now, saying that it's doing me such harm especailly due to the candida infection, and now the blood's in and it's saying there are the antibodies there. She said to me tonight that even if I'm not celiac that I obviously have a huge sensitivity and need to be gluten free.

I just don't know what to do, I'm so torn, I really want to just get well NOW, not wait a day longer to go gluten free, I've been sick for so long, I have three little ones who need me to be at my best ASAP too, but I know I'll always wonder about the biopsy.....

What would you all do?

As I said earlier, I was one of those who decided to eat gluten for a few extra months, just to be able to get the testing done. By that time, I was also diagnosed with autoimmune hepatitis (which means my body is trying to kill my liver by forming antibodies against it). I was put on high doses of prednisone and Imuran to save my liver (and my life). The downside to those meds (at least, for my situation) is that prednisone and Imuran will suppress ALL antibody activity in all autoimmune diseases. Plus, prednisone has been known to allow villi to regenerate in those with celiac disease, even while eating gluten!

So, no big surprise, blood work and biopsy were negative for celiac disease. However, my doctor is smart and up on the latest research, so he still diagnosed me with celiac disease based on dietary response, DNA (I'm HLA DQ8), and a family history of celiac disease and many other autoimmune diseases.

OK....the bottom line is that you have to make your own decision here.

And please remember that the most important test anyone can take is trying the gluten free diet to see how you respond to it. Your body can tell you if you have a gluten problem or not; of course, you've already done this, and you felt better, right?

So no matter WHAT the tests say, please, please go gluten free again as soon as you are able! There are many false negatives in both bloodwork and biopsies...trust your own body above medical tests.

Good luck!! Please keep us posted!

JoAnn

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Meggie,

I got tears in my eyes reading your story. :( It is painfully similar to my own. I really feel for you.

There are numerous doctors who would say a borderline positive blood test given your symptoms and given your positive response to the diet IS a diagnosis. For what it's worth, I agree with your nutritionist. Even if you do the biopsy and it comes back negative, you are at the very minimum highly gluten intolerant and need to be gluten free. If you keep on eating gluten you will only do more damage. And, if you are at risk genetically for Celiac, then you will likely eventually get a positive biopsy when enough damage is done.

I won't bore you with the all the details of my story. I'll just tell you that at it's worst I developed gastroparesis. My stomach was completely paralyzed. If I at more that a 1/4 cup of food I would A. Throw up. B. Be in dire pain. I lost 20+ pounds in a very short time and I'm already thin. I ended up with complete adrenal exhaustion and just collapsed every afternoon for a 3 hour nap. Unavoidable. We had to hire a nanny to care for my 3 little ones. And, that's only the tippy top of the iceberg. I can totally relate to your feelings of guilt surrounding the kids. There are entire years of my children's lives that I frankly don't remember. And, I'll never get that back. Sniff. Sniff. Tears.

6 years ago I did have the Celiac panel. It came back negative. I was told I don't have Celiac. The same doctor did an endoscopy to look for an ulcer and evidence of H. Pylori. They took 2 tissue samples from my upper small intestine. All negative for what they were looking for. Fast forward 5 years (and horribly sicker) and I requested a copy of my biopsy. Turns out they noted unusual findings on that old biopsy with only 2 tissue samples. Those unusual findings turned out to be Stage 1 Celiac. Another gastro confirmed it for me. I repeated my testing (blood, stool, genetic) and turns out I did have Celiac. So much time wasted. It's been a year since I went gluten-free, and while I'm still healing & still have a few issues, I feel AWESOME!

You have to decide for yourself if you want to wait for the biopsy. If you don't do it now, you will never do it. On the other hand, I think you already know that regardless of its results, you need to be gluten free. I wish you the best of luck in your healing. It does get better. Really. You WILL feel pain free. You WILL be able to think more clearly and remember more. You WILL gain strength again. You may even get off your depression and anxiety meds. I did. And, you WILL be the mommy you always knew you could be too! My kids (now 11, 9, & 6) don't remember too much of mommy's struggles. My 9 and 6 year-old don't even remember their old nanny. And, my 11 year old barely remembers. So, don't beat yourself up too much. Children are resilient and as long as their loved (and I know yours are too) they won't remember missing out on the park or playdates. They will be fine. Just great in fact!

All the best,

Jillian

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Jillian :wub: and thank you :)

you know the counsellor ask me a couple of weeks ago what I want to see myself doing / being a year from now. (she was expecting some sort of great goal like studying, or a new job or something I think) and all I honestly want is to have it within me to be that mother I want to be for those sweet things which need and deserve it. As you say, you can't get that time back, it's gone. they are so little for such a short time. The other thing I said was to feel my best and to at least feel normal.

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Ok, so Dr was very honest and said she doesn't know anything about Celiacs.

The blood test was borderline and I've been refered to a gasto. I had been refered anyway due to symptoms. Here are the results, so anyone in the know I'd really appreciate your thoughts since the GP was no help.

Total IgA : 2.2 g/l (0.7 - 4.0) so this was normal

Anti - tissue Transglutaminase IgA (anti-tTg IgA) : 3.6 U/ml (negative <2.0) (borderline 2.0 - 3.9) (positive > 3.9)

It said 'Borderline levels of tTg IgA detected. Significance at this level is uncertain. Consider HLA-DQ typing if clinically indicated. '

So what do you think?

I had been off gluten for just over a week and was only back on it again for four days, do you think that could have effected the result?

So if it's not actually celiac's, do you know what this level actually means, if anything?

Thank you very much in advance.

Hi Meggie,

The anti-gliadin IgA blood test is notoriously inconclusive. My Dr. said she has never seen a positive, even from some people who were later confirmed and diagnosed via biopsy. My Dad's blood work was completely negative the first time, and very similar to yours the second time, and my blood work was completely negative. However we have both been diagnosed with celiac disease. His GI based it off his response to a dietary change and borderline blood work, my Dr accepted my Enterolab results (which has a much higher sensitivity) and health response to a gluten free diet.

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The anti-gliadin IgA blood test is notoriously inconclusive. My Dr. said she has never seen a positive, even from some people who were later confirmed and diagnosed via biopsy.

that's really interesting isn't it...

I went this morning to have blood taken for the gene typing. I was chatting to the nurses who took the blood and they were saying they knew of a Doctor who was 78 years old who finally worked out it was celiac A DOCTOR. Apparently he was sick his whole life....

Yeah, it's an amazing disease really. And to think that here in Australia wheat is part of the 'Healthy Diet Pyramid' which is the basis for all healthy eating. It's taught in schools etc. It's such a staple food, apart from all the hidden gluten.

Hopefully I'll get my blood results back soon, and if I don't have the genes then I'm going to go gluten free immediately anyway, as there is an obvious sensitivity at the very least, plus I'm going to take my children off it for a while and see how they respond. If I have the genes then I'll go for the biopsy, I guess.

Hopefully it wont take too long for the blood tests to come back. I thought genetic testing may take longer than normal blood work. Anyone know if that's the case?

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