6 replies to this topic

[dblreedr]

Sorry, it's a rather long post.

 

I am completely frustrated with the medical system. I've felt generally crappy for years and I pretty much stopped telling the doctor everything bothering me because she always gave me the vibe that she considered me to be a hypocondriac. I've avoided seeing a doctor about actual medical issues because I'm tired of being told nothing is wrong.

 

I've suffered from migraines, mouth ulcers (canker sores), itchy zit-like rash, particularly on my face, instances of severe abdominal pain that eventially resulted in the removal of my apparently healthy appendix (they cleaned out a massive infection in my abdomen) and, nausea, heart-burn, severe joint pain, and petechial hemorrhaging. I had an anencephalic pregnancy, I was diagnosed with fibromyalgia a number of years ago.

 

A little family history: My brother was diagnosed celiac at age 45 and I was advised to get tested. My blood tests all came back negative and we thought that was the end of it. My niece (brother's daughter) was subsequently diagnosed when she was biopsied for a seemingly unrelated reason (she also had negative blood tests). Her doctor advised all family members who's blood came back negative get biopsied.

So, I went to my GP, explained the situation and asked her to arrange a biopsy. She was NOT particularly cooperative on that front, but finally agreed to arrange to get me into see a specialist, but the waitlist is quite long. In the meantime, my partner accepted a job offer in Europe and off we went.

 

In the first 4 months in Europe, I lost about 35lbs (at 5ft 7in, I can't afford to drop from 140lbs to 105lbs) - I stopped weighing myself after that, but I know I've lost more based on the fit of my trousers.

 

My only change in diet was a lot more pasta, bread and baked goodies than I consumed in Canada.  I never did end up seeing a doctor during the 2 years we were in France, but since moving to Holland, I had to see one to get a form filled out for my driving licence. I mentioned the need to get biopsied for celiac at some point soon, and he said I didn't need to get a biopsy, I should just go off gluten for 2 months and then go back on it and see what happens.

 

Anyway, we just went gluten-free this week as per the doc's suggestion (we waited until after the holidays as we went away and didn't want to make life more complicated than necessary), and will stay that way for at least 3 months and then go back on to see what happens.

 

I'm not convinced this is the way to go, but I'm wondering, if going back on gluten ends up showing it to be the issue, should I push for a biopsy for a difinitive diagnosis?

 

I have 4 children (3 adult and one headed that way) and with the difficutlies I've had to get doctors to take this seriously, I am concerned that they wont take the testing of my children seriously without me having a definitive diagnosis.

 

 

[bartfull]

Wow. It is absolutely insane that so many doctors refuse to test for celiac, especially when there is a family history. And it is true that blood tests sometimes result in false negatives. Even the biopsies sometimes do because they often either don't take enough samples, or they miss the spot with damage.

 

If you go off gluten and then reintroduce later you will know whether or not you have either celiac or non-celiac gluten intolerance. If you start getting better off gluten and get sick when you reintroduce it, there is your answer. You will know you need to avoid gluten for life. But you won't know for sure it is actual celiac without the tests.

 

And after you have been off gluten you will need to go back on it for two to three months in order to be tested. And that will be really hard because it will make you even sicker than it does now.

 

You COULD ask for genetic testing for you and your kids. That won't tell you whether or not you have celiac, but it will tell you if you have the liklihood of developing it at aome point. Not everyone with celiac genes develops it, and not everyone who develops it has the genes for it.

 

Confusing, huh? I think if it were ME, I would insist on a full celiac panel (there are several different blood tests) and the endoscopy with at least eight biopsies taken. And get copies of the tests with ranges.

 

But if you decide to try gluten-free first you should go to the Newbie 101 thread in the coping section here. It will help you to go TRULY gluten-free and avoid cross-contamination. Then come back and ask lots of questions. We'll help as much as we can, and judging from the help I got here when I first started, (and still get today), that will be a LOT.

[bartfull]

Here are the blood tests to ask for:

 

• tTG IgA and tTG IgG
• DGP IgA and DGP IgG (this one tends to fall first after being gluten-free a for time)
• EMA IgA (detects more advanced disease)
• total serum IgA (control test)
• AGA IgA and AGA IgG (older and less reliable tests)

[nvsmom]

Ditto everything Bartfull said. I just want to add a couple of things:

 

Keep a symptom/food journal and keep track of how you feel compared to now. Going gluten-free will help if you have celiac disease or non-celiac gluten sensitivity (NCGS) but improvements take time and its not uncommon to backslide sometime in the first few months even if your diet is perfect. For example, I felt much worse at 4 months gluten-free compared to how I felt at 2 months gluten-free due to arthralgias. Also some people experience withdrawal in the first few weeks so don't be surprised if you feel worse before you feel better.

 

Family members should be tested for celiac disease every couple of years. The disease can show up positive at any time in a person's life - yours could be positive now....

 

Best wishes and welcome to the board.  

[dblreedr]

Thank you everyone. I suspect we are not being quite as good about this as we should. I bought a bunch of Nairn gluten-free oatcakes and related goodies whilst we were in the UK. Hubby and I talked about it, and we plan to go ahead and eat what we have, but once the oaty-yumminess is gone, we will leave oats out of our diet as well. Fortunately, we have a website/database here in Holland that I can search by supermarket/factory, food type and food name to see what's gluten-free. That makes things much easier because my Dutch is terrible and reading ingredient lists in English is hard enough.

 

The one big change I've noticed is how hungry I am. I went from barely finishing my supper to eating a much larger portion than normal and then hungry again an hour later. Also, I'm hungry when I first wake up. Normally, I can't even consider food until I've been up for a few hours. Maybe I can gain back some of that weight I lost.

 

I did bring home 2 gluten-free recipe books from our trip to the UK. Supper isn't a huge issue for me as most of what I cook (except pasta) is quite easily tweaked to avoid gluten. It's the snacks and goodies that have become the biggest hurdle. It looks like the cookbooks may help us with that.

[NoGlutenCooties]

The one big change I've noticed is how hungry I am. I went from barely finishing my supper to eating a much larger portion than normal and then hungry again an hour later. Also, I'm hungry when I first wake up. Normally, I can't even consider food until I've been up for a few hours. Maybe I can gain back some of that weight I lost.

 

I think this is fairly common and could have a few different causes.  Your body is starting to heal and needs more nutrients - plus, you're starting to be able to absorb nutrients out of your food so your body wants more.  Also, if you're not eating as many carbs you may get hungry more often.  One thing I've always needed to do to avoid low blood-sugar and hunger pains is to include a source of protein with every meal and in-between snacks.  I feel best when I eat something every 2 - 3 hours, even it's just some nuts or cottage cheese or yogurt.  Just something with protein.

[dblreedr]

Time for an update.

 

After 11 weeks off gluten, I was no longer freakishly cold and requiring up to 5 layers including a down vest to stay warm. I had no canker sores, and the knee/leg pain I'd experienced since childhood pretty much disappeared. And for the ick-factor - after a life-time of floating stool, it started sinking.

 

During those 11 weeks, I was meticulous about what I ate and came in contact with. So much so, I only ate at home because I am shy and self-conscious about making any kind of fuss.

 

The plan was to stay on Gluten-free for at least 12 weeks. I didn't quite make it because we had to make an unavoidable over-night trip to Germany. So, I prepared myself with celiac restaurant information printed in german to avoid any misunderstanding.

Long story short, I got glutened. My plate showed up with bread on it and the 'roast' chicken had been lightly coated in flour.

 

Hubby removed the bread and wiped the crumbs off my plate. I didn't clue in to the flour on the chicken until I'd had 2 bites. I stopped eating it then. Ironically, the meal arrived with no yogurt dressing for fear it may have been thickened with something containing gluten.

Yes, I should have had them take the plate back and I should have complained, but back to that shy and self-conscious and don't like to make a fuss thing. Also, I have to admit, I didn't seriously think I would have a reaction to such a small amount of gluten.

 

As an aside - the hotel sent me a satisfaction survey and I raised the issue there.

 

I woke in the middle of the night to abdominal pain. Not severe, but very there. I maintained gluten-free for breakfast. Yoghurt and fruit salad. Hubby and I talked it through in the car on the way home, and agreed that I may as well go ahead and start my challenge.

 

So, here I am eating all the things I've missed. Cherry pie, chicken sandwiches, raisin toast topped my list.

 

As for symptoms, I was sceptical about how fast they can come. The pain in my abdomen has not eased since Thursday/Friday when I first got glutened (this is new - I occasionally had severe pain before, but not constant and bearable). Since then, I have a canker sore forming, major gas, my knee/leg pain is back, and so are floating stools.

 

I can see why people abandon their gluten challenge.

 

I'm going to stick with it and arrange to see my GP near the end of April and push for the biopsy. I don't know how long it will take for that to be arranged, but I won't be available for it until at least mid-May (family coming for a visit), so that would be at least 6 weeks back on gluten.

 

In the meantime, I'm making a gluten bucket list and throwing my taste buds a big ol' party.