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Do I Need To Be Diagnosed?
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25 posts in this topic

For many many years I've known that most of my issues fall in the celiac symptom category...but I've chosen to ignore that because I didn't want to deal with going gluten free.

 

I've contacted my doctor to see if they'll do a test for me...I don't plan on stopping eating gluten until after the diagnosis comes back.

 

But if they refuse to do the test (it's the VA healthcare system, they might) and I choose to go gluten free, is there any other reason to make sure they diagnose me?  Is there anything that needs to be monitored by a doctor after going gluten free or is that it?

 

Thanks!

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Not all gluten issues show up on tests and there are many pathologies that going gluten free is the best treatment. It is super easy to eat gluten-free if you stick with lean meats and veggies. I just don't understand the "difficulty" that people worry about. It is so easy to read the ingredients and eat less processed foods. I have terrible insurance but all symptoms pointed to it, including the rash so my Doc did not run the test as the change in my diet was free. My insurance would not cover it plus I was maxed out already. I am so much better now and I eat out a lot. Today was the first time in 2 yrs that cross contamination got me. Felling better is so worth it.

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Welcome Cargo!!!

 

I'd take a list of symptoms published by the University of Chicago along with a list of complete celiac antibody tests/nutrient blood tests.  

 

If your receive any push back - perhaps point out that celiac disease is managed by the complete removal of gluten -- when compared with other medical protocols -- it is inexpensive for the VA or any other health system to manage.

 

Push for the diagnosis....if you have had trouble wrapping your brain around living gluten-free in the past -- the diagnose will help if pesky doubt should sneak back in.

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

 

Full Celiac Blood Panel: 

Total Serum IgA
Tissue Transglutaminase IgA and IgG
Endomysial Antibody IgA
Deamidated Gliadin Peptide IgA and IgG

Gliadin IgA and IgG (only optional as the DGP above is the newer and more sensitive Gliadin test)

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:
Bs, D, K, Iron, Ferritin, Copper and Zinc

 

Complete Metabolic Panel (CMP)

Complete Blood Panel (CBC)

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I don't think that "the world" is in agreement on monitoring celiacs when a gluten free diet is adhered to.  Some docs want to monitor antibody levels somewhat regularly, and/or vitamin levels, and/or a few other things.  Some docs will take the knowledge of one autoimmune condition into account when working with other issues that come up.  Some docs don't want to do much of anything.  In my (completely layperson) opinion, a lot of it depends on your general health.  If you're *otherwise* fairly healthy, and if you're *otherwise* totally happy staying gluten free and you feel healthy that way, I simply can't fathom the need for lots of followup testing/monitoring.  If you're not, however, it could make a difference.

 

There's no clear cut answer, but I would suggest that just because a doctor doesn't want to test you for something, that doesn't mean you should keep making yourself sick by eating gluten if you know it bothers you.  Testing be whatever, your health is ultimately in your own hands.

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Dr Peter Green's book says some high percentage of untreated celiacs have bone loss or the beginins of it.  I think it was something like 60% or more.  Anyhow, a bone density test might be a good idea..

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The reason I think testing is important is that Celiac can cause a myriad of health problems from osteoporosis, anemia, joint aches and other food intolerances and are associated with other auto immune disorders including Type 1 diabetis.

 

So if you later develop an auto immune disorder, having a Celiac diagnosis would help your doctor understand you condition better.

 

The only thing I didn't like when I was gluten free is that I couldn't go eat at a Burger place with friends and no longer being invited to diners.

 

As for eating: you can eat potatoes and rice and vegetables and cook your own meats.

There is gluten and wheat added to lots of prepared foods like soups, hot dogs, even corn bread.

You might need to try dairy free to see if that helps with gastrointestinal issues.

Let us know what the VA says.

 

PS:

don't just do the tTG test. Many test negative to it.

Here is the panel my local lab does:

 

Total IgA
Transglutaminase IgA tTG-IgA
Deaminated Gliadin IgA DGP-IgA
Deaminated Gliadin IgG DGP-IgG

 

It might be worth paying for it the one time to figure out once and for all if you have Celiac.

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I'm finally to a point in my life where I have the mental clarity to handle going gluten free.  I suffer from severe depression and anxiety and have just been consistently stable for the last year or so.  I've always suffered from IBS/loose stool, hormonal imbalances, acne, headaches, reflux, low ferritin, low D, and low potassium...not sure if they have ever really tested any other vitamins and minerals.

 

I'm always tired and have very little energy.  I take heavy B vitamins and Iron because without them, I'm almost non-fuctional.  My family diet is heavy on pasta and bread...and we eat out quite often, although we're cutting back...which is one reason I wouldn't consider going gluten free previously. 

 

If my doctors refuse to test me, or if the tests come back negative, I'll still go gluten free and see how things change.  I'd just prefer to have everything documented, of course. 

 

Thank you for all the information! 

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I'm finally to a point in my life where I have the mental clarity to handle going gluten free.  I suffer from severe depression and anxiety and have just been consistently stable for the last year or so.  I've always suffered from IBS/loose stool, hormonal imbalances, acne, headaches, reflux, low ferritin, low D, and low potassium...not sure if they have ever really tested any other vitamins and minerals.

 

I'm always tired and have very little energy.  I take heavy B vitamins and Iron because without them, I'm almost non-fuctional.  My family diet is heavy on pasta and bread...and we eat out quite often, although we're cutting back...which is one reason I wouldn't consider going gluten free previously. 

 

If my doctors refuse to test me, or if the tests come back negative, I'll still go gluten free and see how things change.  I'd just prefer to have everything documented, of course. 

 

Thank you for all the information! 

 

 

Good Plan...and great luck to you!

 

Make sure you read the Newbie 101 Thread -- it contains a wealth of jump-start info.

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Good luck!  :)

 

When you do eventually go gluten-free, remember that the first few weeks can be really tough, especially if you go through a withdrawal.  Just remember it doesn't last.

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This is the response I got from my doctor:  


"Would recommend she cut out gluten for 2 weeks, then re-introduce it and if her 
symptoms return then she should stay on a gluten free diet. My experience is that 
not many people have true celiac's disease but a lot of people are sensitive or 
intolerent of gluten and should be on a gluten free diet."

Should I push to be tested??  What would your response be?  Is 2 weeks long enough for the small intestine to heal and have the effects disappear?  I'm annoyed.  I don't understand why she won't just test me.  It's not like it comes out of her pocket or she'd even have to do anything other than put the blood tests in the system.

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Ugh!!!

 

That response is sooooo frustrating and silly really -- why not run the tests to be sure before gluten is removed before one loses the ability for tests to be accurate?  I would ask why she is not running these simple tests -- I'd push.

 

And no...most do not completely heal or lose all symptoms within the first two weeks gluten-free -- some improve right away, but two weeks is very fast to expect all symptoms to disappear.  The immune system is complex and can take some time before healing happens.

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Your doctor hasn't heard of withdrawal.   :rolleyes:  Often people feel worse for the first few weeks, not always but enough for it to be common. And not all symptoms resolve in the first few weeks. GI issues often heal first.Eventually that is often followed by migraines will improve and hair loss will slow. Neurological problems and pain are some of the last to go.... This is a generalization and not true of all celiacs, but my point is, that two weeks isn't much time to feel better, and it is most likely not even enough time to stop producing auto-antibodies never mind heal! The problem there is that if you do get tested after being gluten-free for any length of time, and you've stopped making auto-antibodies, your celiac tests will eventually be negative.

 

I would try to push for testing now and then try gluten-free after the tests. Your doctor is right that non-celiac gluten intolerance (NCGI) is much more common than celiac disease, but you might as well get tested for the rarer disease since you have symptoms, and you are eating gluten so the test will most likely be accurate.  

 

Good luck!

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Thanks for the info!  I had already sent my doctor another note...telling her that I'd really like to be tested, listing the tests I wanted and all my symptoms...

 

Then I was reading another thread and saw that medications may have gluten.  I'm on A LOT of meds...so it's not as easy as skipping the diagnosis and going on a gluten free diet!  I'd have to check all my medications...a good reason to make sure I get tested! 

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Thanks for the info!  I had already sent my doctor another note...telling her that I'd really like to be tested, listing the tests I wanted and all my symptoms...

 

Then I was reading another thread and saw that medications may have gluten.  I'm on A LOT of meds...so it's not as easy as skipping the diagnosis and going on a gluten free diet!  I'd have to check all my medications...a good reason to make sure I get tested! 

 

yep...be careful with the med one -- all of us...me, son and daughter have been burned by that one more than once when pharmacy switches generics -- thankfully I am off all meds (except for benedryl, inhalers and epi pen as needed), son down to one -- unfortuanately daughter still has a basket full and is quite ill so tough to check every flipping time they are filled -- she is doing a bit better so hopefully she'll get off meds one day too.

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Looks like my doc went on vacation.  I won't hear back until mid to late next week. 

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Decided, just for the hell of it, to add on the thyroid tests to my request.  My symptoms all fall under Hashimoto symptoms as well, and thyroid issues run in my family.  I just want to feel better!  Being this tired and having all these issues can't be just...nothing.  I mean, I keep telling myself that maybe if I just lose weight, everything will be good again...but how can I work out when I'm so freaking exhausted? 

 

My doc will probably give me a lecture....ugh...stupid VA.  If I didn't have to get my care there, things would be so much easier.  My ability to advocate for myself is so limited. 

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Ummm.....the difficulty you are facing is well know by many of us...HMO, PPO, VA, NHS, hmmm can't remember if Canada has abbreviations....the key is to understand the issues you want tested -- which it sounds like you do.  

 

Hang in there :) ...keep pushing :ph34r:  ...you will find answers  :blink: ...and I am sorry it is frustrating :unsure:  -- I completely understand the frustration  :huh:

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Doc ordered my celiac blood tests today!  I think I'm going to do a massive gluten challenge for two weeks before I get the tests done.  I found this article that said two weeks is enough. 

 

http://www.celiaccentral.org/research-news/researchers-now-say-gluten-challenge-can-be-modified-8149/

 

 

Instead of eating bread, I plan on buying a bag of gluten for baking and just mixing it will water and chugging it.  I figure two or three tablespoons a day will do it, if I am celiac!

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Good luck!  Enjoy an Oreo or beer for me.  :D

 

You might want to gluten yourself in the evenings so your days aren't negatively affected by feelings of poor health.

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Are you crazy??  Enjoy the forbidden foods while you can!

Speaking bags of gluten, the week before my dx I had scoured the store for one because I wanted to try making some vegan dishes with it. What a waste of my money!

 

Also, my personal experience is that I hardly felt better being gluten-free after 2 weeks. It's reaching a year now and I still suffer. If I did not get tested for celiac disease, and it didn't turn up positive, I would likely have ditched my diet ages ago. But I also wasn't as aware as you are of celiac disease, or of non-celiac gluten intolerance.

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Doc ordered my celiac blood tests today!  I think I'm going to do a massive gluten challenge for two weeks before I get the tests done.  I found this article that said two weeks is enough. 

 

http://www.celiaccentral.org/research-news/researchers-now-say-gluten-challenge-can-be-modified-8149/

 

 

Instead of eating bread, I plan on buying a bag of gluten for baking and just mixing it will water and chugging it.  I figure two or three tablespoons a day will do it, if I am celiac!

 

Hi Cargo,

 

Two weeks may be enough for 75 percent of celiacs, but if you aren't part of that 75 percent, not so helpful.  Just remember if you get a negative result if t could just mean you are part of the other 25 percent who need longer gluten challenges.  I agree it's pretty good chance of a positive, but not so reliable as a negative.  Just something to be aware of.

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I haven't gone gluten free at all yet, but I realized that I've only  been eating a fairly small amount of bread recently and don't want to take any chances on a negative blood test. lol  I'm sure there's gluten in other things I've been eating, but I'm paranoid that it's not enough for the tests.  I know it's not logical. lol  I just want to over do it so I can be sure.

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My doctor, who is a specialist in Celiacs Disease, said to eat at least two peices of bread every day for six weeks before being tested. You might want to watch chugging a whole bunch of gluten- if you are gluten sensitive or have Celiacs it might make you feel really horrible. And I agree with everyone else who says a two week challenge is basically worthless- I was put on a very strict elimination diet and didn't get to add gluten in for at least three months to make sure it was completely out of my system. When i went off of gluten I had a massive headache for five days. Since I went on the elimination diet for digestive issues, it took me a while to realize that my headaches had stopped when I went off of gluten. On this particular diet, when you add in a new food you eat it for three days, then do something else the next three days- they call it a Rotation Diet. It took me a while to realize that during my three days on gluten, I would get really irritable, yell at the kids, fight with my husband, and then get a headache.

Sometimes the symptoms are kind of subtle and you have to pay attention to get the cause and effect.

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I got my blood test done Monday...I didn't stuff myself with gluten before hand.  I wasn't eating a ton of it, but I certainly hadn't intentionally removed it from my diet so I'm sure if there's something to show, it'll show.

 

I also requested to be tested for Hashimotos so we'll see how that goes.

 

I have no idea how long it will take to get the results.  I'm nervous!

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No need to stuff yourself with gluten....glad you got them done.  Most blood tests take less than 72 hours....yet results can take a week or so to hit your file.  Make sure you request written or electronic copies from your primary.

 

Hang in there :)

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