I'm New And So Frustrated

[Ember]

Hi everyone

I'm new here, but not new to 'possibly' celiac or gluten intolerance.
I live in Canada so it's been a difficult road.
I'm 46 years old now, and oddly, I've read that this is the age when testing is finally underway.
My family physician just on Tuesday refused to test me for celiac because my iron was normal.

Here's a bit of history.
I started having IBS symptoms at 16. Felt like fight or flight, butterflies, diarrhea after eating no matter what it was.
At 23 I was diagnosed with no testing or bloodwork with IBS. Told I was too young to have anything wrong. (not sure if this was the doctors mentality) - by 26 I had tried every elimination diet there was, except wheat and the rest of the gang.
At 28, I started having wicked pain, started in my hands, went into my kneck, knees, lower spine, shoulders - and was diagnosed with fibromyalgia, chronic fatigue and migraines. Lost my job over this.
Roll forward to 31 still with constant pain, fatigue, diarrhea, bloating, gas, depression, anxiety, skin problems, ah but I was pregnant with PCOS. How did that happen?
I had the worst pregnancy, threw up every single meal I ever ate, being extremely careful, nausea 24/7, very low iron, then constipation. - I lost 41lbs. Healthy, little small, baby girl. Had my gallbladder removed 7 months later.
Not related to gluten (or perhaps it is?) had a hysterectomy at 34, followed by major spine surgery.
Still, the diarrhea continued. At 38 I had a second spine surgery, this time, a bigger surgery and I bled out needing a massive blood transfusion. I was sick for about 18 months following this and recovering. (a triple fusion).

I had discussed the possibility of this being celiac with my doctor recently, who is relatively new to our family, having not taken much interest in my history, (except the fact that I had had gallbladder removal, and she blames this for my diarrhea, plus  I am overweight, so she doesn't believe its gluten at all causing my issues) I was very skeptical this was going to work out. She seemed on board, but due to the iron being normal went on about the cost etc. as this is covered by our medical system.
So now, I am stuck seeing a gastro on May 6th. She wants him to go ahead and do the biopsy without doing bloodwork first. (which costs more, I'm dumbfounded)
She was very huffy with me, so I got online and ordered the test from a company online.
Has anyone else done this kit?

I had quit gluten for some time, everything within 4 days got better. I hadn't felt that good in years. I continued but realised to test, I will need gluten for the test, so here I am with horrid pain, gas, diarrhea, migraine and a general feeling of being run down.
Fingers crossed the test will come to at least tell me yes or no.

Thanks everyone for listening. It's nice to get this on paper. 
Ember

ps - I also have lactose intolerance as well.


 

[NoGlutenCooties]

Hi Ember and Welcome!

 

Wow!  You've been through the ringer.  Sure as heck sounds like Celiac to me.  The fact that going gluten free, even for just a few days, made you feel noticeably better is a very telling sign as well.  As for your doctor.... she is... how should I say it....  dead wrong!  And ignorant about Celiac.  First, there is no requirement that you be iron deficient.  Yes, nutrient deficiencies are common with folks with Celiac but it isn't a deal breaker.  I didn't have any deficiencies, or symptoms for that matter, when I was diagnosed - so fooey on that!  Also, age doesn't matter.  Babies can get it as soon as they start getting fed foods that have gluten in them.  Some people don't get it until they're much older.

 

There is a list of about 300 symptoms that are associated with Celiac that you can find here: Open Original Shared Link

If it were me, I'd print the list and highlight all of the ones that have ever pertained to you and give it to your doctor.

 

I'm not familiar with the tests that can be ordered online but I know some folks here have used them - hopefully someone else can speak to that.

 

Regarding the spinal surgeries - have you had your bone density tested?  Low bone density is another side effect of Celiac, due to poor nutrient absorption.

 

Getting the biopsy is not a bad thing - make sure they take at least 5 or 6 biopsies and that they actually test for Celiac in addition to all of the other things they think they want to test for.  Don't assume that just because they do an endoscopy that they're planning on doing a biopsy, or enough biopsies, or that they are planning to test for Celiac.  Press the issue and insist.  (However, keep in mind that a negative biopsy does not mean that you don't have Celiac - it just means they didn't catch it.)

 

Good luck!

[Ember]

Thank you so much - I finally don't feel alone in this anymore.
I had thought about the bone density, and figured I'd see the gastro first. I have osteo arthritis in my spine so I may ask my spine surgeon (who is far away, but worth seeing him) to order bone tests. I also have adhesive arachnoiditis which is in the inflammatory stage, it's caused by spine surgery and other sources, but I also fell at 24 and broke 2 vertebrae as well. I forgot about that in my post. The arachnoiditis pain also got way better with no gluten as well.

I'm very foggy and the pain is insane so I can't wait for that kit to come lol - Its 93.5% accurate, so that's a pretty good number I am thinking.

Our doctor has terrible reviews, but before finding her, we had an even worst doctor.
She did send me for a colonoscopy last year which had no results at all.
I was told, eat anything you want and take a pro biotic. I guess the new 'in pil'l to push on everyone due to sheer lack of understanding of diet as I see it

I am going to look at that link right now and print it, I will check all I have for sure and hand it to the gastro. (a partner to the one who did my colonoscopy, unfortunately, the poor guy who did my colonoscopy died a week after I saw him last year)

Thank you so much
Ember

 

[1desperateladysaved]

Hi Ember,

 

Rather than a colonscopy, You need an endoscopy while eating gluten to detect celiac.  On the mail order test is it a card, what is the brand name?  I have heard the name bio-card test.  Some people have mentioned that is one they used.

 

I feel for you being in the fog and new to all of this, but I am excited at the same time because I think you will be helped!  Many of us use pro-biotic, I was recommended to it (because of celiac) by and MD, Osteopathic doctor, and chiropractor.

 

I had 30 years foggy, fatigue and bloating before I got my problem discovered.  I  have a clear mind now.  So, hope to hear a good ending to your story soon!

 

D

[Ember]

Hi - thanks so much for responding

oddly enough, I'd forgotten I did have a gastroscopy (before they did sedation so 20 years ago, was horrid) I had a diagnosis of inflammation of the duodenum, this was in my 20s as well. I know for sure there was no biopsy done, I didn't even know about gluten then.
I am going gluten free again once I do receive the biocard, (yes it's biocard celiac test I purchased from a company in Toronto) I'm waiting patiently for it to arrive. I can't function, I'm falling asleep with the fatigue and pain. It's so hard because I work from home and I can't do anything. I'm watching TV and nodding off.

WOW so you were a real long time not diagnosed as well.
I hope this doesn't happen to anyone in the future, I think now that more is known about gluten, those who suffer won't have to as long.
 

[1desperateladysaved]

I use to fall asleep between words on my children's spelling test!  I do hope you will feel better soon.  I hope you will receive the test soon and can get some good help with this. Some take their positive bio-card to a doctor and get help that way.   I try to find people with similar symptoms and rescue them.  I take that as what your planning with "hoping nobody goes through this in the future."

 

D

[Ember]

Now I know you understand me. I honestly thought I'd never find anyone who understood this fatigue. My husband tries to, others say, I get tired, but I want to clonk them LOL - they don't understand!! This fatigue is absolutely terrible.
This afternoon, my hubby and I went through our entire kitchen getting rid of gluten. Not too much, but so many hidden sources, luckily, I know most of them.
If I took a positive card to my doctor, I wonder what she would say. I argued with her about not doing the bloodwork and told her this is what I would do. That won't mean anything to us she said.
Unyet, the cards are recognized by Health Canada. I've never met such a stubborn woman. She has issues.


I just want to stop the gluten now so I feel better soon again. Wish that mail would come lol It's a bit crazy waiting to be honest.

Yes, I will save anyone from this. No one needs to go so long without answers.

[spirit22]

I use to fall asleep between words on my children's spelling test!  I do hope you will feel better soon.  I hope you will receive the test soon and can get some good help with this. Some take their positive bio-card to a doctor and get help that way.   I try to find people with similar symptoms and rescue them.  I take that as what your planning with "hoping nobody goes through this in the future."

 

D

I am new here & awaiting a colonoscopy/endoscopy May 8th. Was diagnosed 35 years ago with IBS. My TTG IgA was positive but the TTG IgG, Gliadin IgA & Gliadin IgG were negative. I am interested in learning more about the Bio-Card. What can that tell me? How accurate are the results? Thanks for any help you can give.

[GottaSki]

I am new here & awaiting a colonoscopy/endoscopy May 8th. Was diagnosed 35 years ago with IBS. My TTG IgA was positive but the TTG IgG, Gliadin IgA & Gliadin IgG were negative. I am interested in learning more about the Bio-Card. What can that tell me? How accurate are the results? Thanks for any help you can give.

 

The Bio-card is a home version of the tTG-IgA for which you have already been tested.

[NoGlutenCooties]

I've always needed 8 hours of sleep a night and would feel terrible if I got 7 or less.  Then I'd sleep 11 or 12 hours per night over the weekend to "make up" for "only" getting 7 1/2 or 8 hours of sleep each night during the week.  I still feel better when I get over 7 hours a night - but I no longer sleep half the day away on the weekends.  It also used to take me about 2 hours in the morning to start to feel human.  Now I'm pretty much awake and functional as soon as I get out of bed.

[Ember]

Hi - so nice to meet you.
The bio card test is the same as the tests the doctor screens.  
It's 93.5% accurate.

I purchased it at progluten.com

Just went to my front door to see a sticky to pick it up after 5.45pm today
Ah it's here. ahhhh -  I don't know if I'm relieved or scared.

I'll be seeing the gastro on May 6th.  and go from there.

 

[Ember]

I think our sleep is about the same - but I nap in the evening, and sometimes it's 4 hours and I still sleep for 8.  It really sucks.
I've been trying not to 'nap' though and I do something to ignore the fatigue.
It's awesome to hear how your sleep has changed
I am very hopeful mine will change as well once I go gluten free again.

I know the answer lol but even if at the end I'm negative, I know it would be intolerance, so I would need to still stick to gluten free to feel at my best, which is my absolute goal.

[nvsmom]

Hi Ember.

 

I used the Biocard initially too. I just don't like going to the doctor, and I had seen one 30 years ago for my stomach problems - he said I was just one of those people who got a stomach ache after eating.  LOL  Anyway, I felt comfortable starting with the Biocard. I had a very faint positive line, which as Gottaski said, would be a weak positive tTG IgA test.  I took that to my doctor and was retested after eating gluten heavy for a few weeks, and it was very positive. An EMA IgA was also run to confirm it.  Out here in Alberta, doctors only run the tTG IgA, and then he EMA IgA if it was positive. I'm not sure what they do when someone is IgA deficient as shown by a total serum IgA.

 

I think you need another doctor. I am another who is a bit overweight, was always tall, and rarely had D. My blood is always great, nutrient levels are fine, and I am never anemic. On the other hand, my hair was falling out, I was dead tired, bloated, and had migraines more often than I didn't. Pregnancies involved a lot of weight loss for me too.

 

Good luck with the test. Delay doing it if you are gluten free though. Give yourself a few days (or weeks) with heavy gluten consumption so you get an accurate test. After seeing the gastro, you'll need to be eating gluten in the two months prior to their testing, so don't go gluten-free again.  You do not need to eat a tonne of gluten for accurate tests, 1-2 slices of bread per day is plenty.

 

Best wishes.

[spirit22]

I am new here & awaiting a colonoscopy/endoscopy May 8th. Was diagnosed 35 years ago with IBS. My TTG IgA was positive but the TTG IgG, Gliadin IgA & Gliadin IgG were negative. I am interested in learning more about the Bio-Card. What can that tell me? How accurate are the results? Thanks for any help you can give.

Thank you, Gottaski, for the answer to my question. Since only part of that test came in positive, is it possible it was just a false-negative? Should I re-take the test?

[spirit22]

The Bio-card is a home version of the tTG-IgA for which you have already been tested.

Thanks, Lisa!

[Ember]

Ah another Canuck
I SO wish we could switch doctors but there are none, absolutely no one is taking new patients and tons without a doctor. We were recommended her by 3 people, I didn't think to look at her feedback which truly is appauling. I so wish I had. However, she is sending me to specialists and not getting it. I have horrid neuro issues anyway but they changed, tingling, pins and needles, both hands, wicked swelling and pain in both hands and I work with my hands so I need them -  I wear braces when I can handle them. She sent me to the neuro, and for the swelling she sent me to a rheumy. I never went. She's not getting it could all stem from celiac or intolerance. So seeing the gastro is a good step for me I hope.
I was only gluten free for 2 weeks back 2 months ago, I cheated and I was really testing my body here and there so that might be enough ??. Now I feel like I've worked out 24/7 and run a marathon. Once I go gluten free, this will go away, I know it will.
I will do the test tomorrow, I've been eating gluten I think enough I think, my body feels like it anyway

Thanks SO SO much for your knowledge in all of this. I appreciate it to  no end

[nvsmom]

You're right. Those symptoms could all be from celiac disease.  I saw a rheumy about my symptoms in my first year gluten-free because I had a hard time accepting that celiac disease could still be affecting me even after being gluten-free for months... but it was celiac disease. After almost 2 years, my arthralgias are much better.

 

I never did see a gastro. The wait to see one for celiac disease is about a year out here.  LOL  

 

I was only gluten free for 2 weeks back 2 months ago, I cheated and I was really testing my body here and there so that might be enough ??. Now I feel like I've worked out 24/7 and run a marathon. Once I go gluten free, this will go away, I know it will.
I will do the test tomorrow, I've been eating gluten I think enough I think, my body feels like it anyway

 

It sounds like you've had plenty of gluten if you were only gluten-free for 2 weeks a couple of months ago.  Going "gluten-lite" is sometimes enough to cause a false negative in some people so just be aware of that.

 

Another thing to be aware of is that it can be hard to get enough blood for the biocard test.  Warm your hand up with warm water or a heating bag first, and then maybe swing your hand around a bit before testing so you have plenty of blood pooling in your fingers. I had a tough time getting enough blood, and others I've "talked" to have as well so that all could help.

 

Let us know how the test goes.  

[Ember]

Hi Nicole

I just did the test and it's negative.
I've not eaten enough gluten maybe, or I really don't have celiac and am gluten intolerant.
Now I don't know what to do, all my swelling has blown back up, I feel so sick.

Anyone with any suggestions, because I feel so stuck now.

[nvsmom]

The tTG IgA misses 5-25% of all celiacs when it is a lab run test. If positive, it is a 95% certainty that it was caused by celiac disease (the specificity) - the problem is that the sensitivity is 75-95%. You could still easily have celiac disease. Easily.

 

My Biocard test had such a faint line that I checked it and dismissed it. Then I came back and rechecked it after 10-15 minutes, which exceeded the normal time limit. My positive line was soooo faint that I seriously doubted it. I googled it a bunch before making a doctor's appointment. I had a lab drawn tTG IgA about 10 days later and I exceeded the normal limit by at least 10 times - that's where they stopped counting.

 

I would still get the doctor to test you. Don't even mention the Biocard test to him. Get the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA and even the older AGA IgA and AGA IgG if possible.  The more tests the better as you'll be less likely to get a false negative.  There are others who only had a positive biopsy so pursuing that, even if all blood tests are negative, might be an idea. Keep eating gluten until all testing is done - if you can stand it.

 

If everything comes back negative, then that leaves the possibility of very early, too early to detect, celiac disease or non-celiac gluten sensitivity (NCGS). NCGS has the same symptoms of celiac disease but does not have the villi atrophy. Bloating, headaches, D, ataxia, arthralgias and nutrient deficiencies can all be found in those with NCGS. It's just as nasty as celiac disease.  I personally think it is just another type of gluten sensitivity like celiac disease is. Some of us get D, some get headaches, some have it affect fertility, some get villi blunting.... but that is just my own theory. 

 

Those with NCGS need to be 100% gluten-free, just like a celiac, or the symptoms will come rushing back.  

 

Some doctors think the AGA tests will show NCGS but they aren't the most reliable tests out there. A positive response to the gluten-free diet is the main diagnostic tool. 

 

Hang in there. Very few of us have a black and white diagnosis. Doubt is all over. This pre-diagnosis board is supper busy for a reason - those celiac disease tests are not fool proof.... even if doctors imply that they are.

[Ember]

Wow, you really know your stuff - I am going back gluten free tomorrow,  I can't stand the pain. I can't even make it up my stairs, I wish there was a way to show you my swelling. My ankles started swelling back in 09, my instep actually so even in Summer I've had to wear boots, my ankles feel like they are going to snap. Really nasty feeling. When I was gluten-free this all went away. I can't wait.
i'll talk all of this over with the gastro and if he really wants to do the biopsy, then he can schedule it so I eat gluten 6 weeks and I can get the blood work done the same time. I think that's a better idea.

Whichever I have, I for sure know it is the gluten. I'm also sugar and dairy free as well. (very low sugar, no artificial sugars. )

I did notice the board is busy. It certainly isn't rare like doctors think, and the same goes for my spine disease.
We're told it's rare as well, but it's not.

Thanks for all your knowledge and support, so appreciate it.

[1desperateladysaved]

Keep notes about changes when going gluten free. It could help you to realize progress and support your decision to go gluten free.  I hope you will be coming out of the fog soon.

 

D

[Ember]

I am definitely doing that. I did it last time and I was puzzled with what I wrote lol brain fog does weird things.
So much pain today, I hope in a few days to say, the pain is way down again

Thanks SO much for your support

[GottaSki]

I am definitely doing that. I did it last time and I was puzzled with what I wrote lol brain fog does weird things.

So much pain today, I hope in a few days to say, the pain is way down again

Thanks SO much for your support

 

The food/symptom log is vital for those of us with brain frogs

 

Hang in there