18 replies to this topic

[smpalesh]

I have almost all of the symptoms of celiac disease and have been getting progressively sicker to the point that I can barely function in my daily life. I have a doctor's appointment tomorrow with my family doctor and I want to ask him to do the blood tests for celiac disease. I have heard a lot of people saying it can be very hard to get diagnosed - why is this? Do the doctors just refuse to do the tests? I am hoping that won't be a problem for me. Can't you just ask the doctor to do the blood tests for celiacs?

[1desperateladysaved]

Yes, you may just ask. I hope your doctor will help you. Be prepared with a list of symptoms.

You may want to ask about other tests too. On the forum you can find out what tests.

Are you already gluten free, because if you are the blood test will likely be negative whether you have a gluten problem or not. Mine was negative 3 weeks after starting gluten free. We already had a positive genetic test, so the doctor said it was false negative.

I hope you will get to the bottom of any health struggles and recover.

Diana

[smpalesh]

Thanks for answering. No, I am not gluten free so hopefully any tests will be accurate. I have been thinking about this for a couple of years but have been foolishly resisting finding out because I don't want to be gluten free. Now I feel so sick I will do absolutely anything to get better!

Yes, you may just ask. I hope your doctor will help you. Be prepared with a list of symptoms.

You may want to ask about other tests too. On the forum you can find out what tests.

Are you already gluten free, because if you are the blood test will likely be negative whether you have a gluten problem or not. Mine was negative 3 weeks after starting gluten free. We already had a positive genetic test, so the doctor said it was false negative.

I hope you will get to the bottom of any health struggles and recover.

Diana

[GottaSki]

Welcome! Great question.

You most certainly can ask your family doctor to be tested. Problems can arise because many doctors are not trained, do not have up-to-date knowledge nor experience treating Celiac Disease. There are hundreds of symptoms - many of which look like other conditions which leads to incorrect diagnosis. Some doctors will only order one or two screening tests - you need the full panel as it gives the best chance for diagnosis.

Adding to the confusion is not every person with Celiac Disease has positive results on every one of the blood tests - it is possible to be negative in them all and still receive diagnosis by endoscopic biopsy only. This combined with doctors not always having accurate knowledge of Celiac Disease can make it difficult to obtain diagnosis.

Given the amount of symptoms along with worsening severity you should definitely get tested. If all the tests come back negative, it is still a very good idea to remove ALL gluten from your diet for at least three months (six is better) as removing gluten is often the best test for Celiac Disease and Non-Celiac Gluten Intolerance. Caution - do not remove gluten until you are sure you are done with testing. Should you decide on a endoscopy you need to remain on gluten until it has been done.

Full Celiac Blood Panel:

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

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

It is best to go to your appt with a written list of all your symptoms (past and present) - it really does help to have them written down. Do you have any skin problems? Taking pictures can help - I had several skin issues that would disappear before I got to the doctor and pictures really do count more than words.

Being prepared for your appointment is your best chance to limit the possible frustrations associated with Celiac Disease diagnosis.

Good Luck to you

[smpalesh]

I wrote another post on a different board detailing all my symptoms. I've already had vitamin and mineral levels drawn and I am deficent in vitamin K, vitamin D, vitamin B, Iron, not sure what else. I also have the skin issues and I just printed out 2 pictures at Walmart to take bc I don't currently have the rash. Here is one pic of my knee (where I normally get it the worst. I have had it worse than this as well but this is one of the two pictures I have -
I really hope that I can get him to do the testing bc I am just getting sicker and sicker and it is really impacting my life. I am a full time social work student as well as a mother of 3 (ages 6, 10, and 11) and I am barely able to function.

Welcome! Great question.

You most certainly can ask your family doctor to be tested. Problems can arise because many doctors are not trained, do not have up-to-date knowledge nor experience treating Celiac Disease. There are hundreds of symptoms - many of which look like other conditions which leads to incorrect diagnosis. Some doctors will only order one or two screening tests - you need the full panel as it gives the best chance for diagnosis.

Adding to the confusion is not every person with Celiac Disease has positive results on every one of the blood tests - it is possible to be negative in them all and still receive diagnosis by endoscopic biopsy only. This combined with doctors not always having accurate knowledge of Celiac Disease can make it difficult to obtain diagnosis.

Given the amount of symptoms along with worsening severity you should definitely get tested. If all the tests come back negative, it is still a very good idea to remove ALL gluten from your diet for at least three months (six is better) as removing gluten is often the best test for Celiac Disease and Non-Celiac Gluten Intolerance. Caution - do not remove gluten until you are sure you are done with testing. Should you decide on a endoscopy you need to remain on gluten until it has been done.

Full Celiac Blood Panel:

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

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

It is best to go to your appt with a written list of all your symptoms (past and present) - it really does help to have them written down. Do you have any skin problems? Taking pictures can help - I had several skin issues that would disappear before I got to the doctor and pictures really do count more than words.

Being prepared for your appointment is your best chance to limit the possible frustrations associated with Celiac Disease diagnosis.

Good Luck to you

[Newbee]

Yep, just ask. That's how I got diagnosed. I'm quite sure no one would have suggested the test EVER if I hadn't asked for it. Both me and my brother were diagnosed quite easily, although I understand that is not the case for everyone. Good luck!

[Finally@45]

I have 2 close relatives who, after my diagnosis, wanted to get tested and their doctors refused. Though in my opinion they have Celiac symptoms, especially long histories of complaining about upset stomachs, constipation, thyroid problems, etc., their doctors felt they don't have the symptoms. It boils down to the health plan actually.

In each of their cases I think they may have had symptoms and didn't voice concerns about them in a manner that would sound an alarm, the symptoms seem minor, and/or they don't "look" sick. Some doctors think a person with Celiac will look emaciated because that's what they're taught. As I've said in other posts, in our society a thin female may not be seen as "sick" even though she may talk about a whole range of symptoms that adds up to illness. People are often blinded by a thin body image, and frankly, there are a LOT of people tempted to undermine the impact of food sensitivities.

These family members are seeking low-cost testing through local universities with nutrition and/or Celiac research centers. So far it looks like it'll work.

[smpalesh]

I am in Ontario, Canada and I am pretty sure we have to pay out of pocket for the test. I'll do it if that is the case because I want to know if I actually do have celiac disease. My appt is this afternoon and I really hope he listens to my concerns.

I have 2 close relatives who, after my diagnosis, wanted to get tested and their doctors refused. Though in my opinion they have Celiac symptoms, especially long histories of complaining about upset stomachs, constipation, thyroid problems, etc., their doctors felt they don't have the symptoms. It boils down to the health plan actually.

In each of their cases I think they may have had symptoms and didn't voice concerns about them in a manner that would sound an alarm, the symptoms seem minor, and/or they don't "look" sick. Some doctors think a person with Celiac will look emaciated because that's what they're taught. As I've said in other posts, in our society a thin female may not be seen as "sick" even though she may talk about a whole range of symptoms that adds up to illness. People are often blinded by a thin body image, and frankly, there are a LOT of people tempted to undermine the impact of food sensitivities.

These family members are seeking low-cost testing through local universities with nutrition and/or Celiac research centers. So far it looks like it'll work.

[GottaSki]

I don't think you'll have a problem - you have a good understanding of Celiac Disease symptoms - that is a great start.

Good Luck!

[smpalesh]

He only ordered one test - the tTG - is that normal? At least he ordered it. I have to do fasting glucose too so I am going for the test in the morning. Anyone know how long it normally takes to come back?

I don't think you'll have a problem - you have a good understanding of Celiac Disease symptoms - that is a great start.

Good Luck!

[frieze]

He only ordered one test - the tTG - is that normal? At least he ordered it. I have to do fasting glucose too so I am going for the test in the morning. Anyone know how long it normally takes to come back?

NO that is not enough! unless you are very lucky. you want the whole shebang. good luck

[smpalesh]

He won't order any other tests. I had to convince him to order the one test. He was completely dismissive of me and told it was migraines (which I've never had) causing my symptoms and prescribed a migraine med (which didn't help at all). I feel so defeated right now. I am just so sick.

NO that is not enough! unless you are very lucky. you want the whole shebang. good luck

[GottaSki]

It is very common for doctors to order just the tTG IgA. Some understand the need for the panel, some will order if asked and some will flat out refuse.

Since it is already ordered, get it drawn. If the result is positive on the tTG you will likely be referred to gastroenterology for more testing.

If it is negative, I'd ask for the full panel. If this is an issue of the insurance not covering the full panel in Canada as Peter mentioned in your other post - you could pay for the tests yourself. In the US we have private labs that will run a full panel for about $200 - not sure what the costs would be in Canada.

Another route is to completely remove gluten for at least three months to monitor symptoms. Reminder - you should NOT remove gluten until you are sure you will not be having more testing to obtain a diagnosis of Celiac Disease.

[Newbee]

My doc also ordered ttg IGA for me. Luckily it uncovered the problem. Your doctor sounds awful. At the very least they should be willing to test you for things you ask for.

[frieze]

it would seem you should have been informed that any further testing would have been at your expense and allowed to make that choice.