Family Dr. Thinks My Daughter Does Not Need To Eat Gluten To Show Up On Blood Tests.

[Kurzemiete]

Hello fellow parents. 

I have not been here in a while. 

My daughter has lactose intolerance as well as gluten allergy and / or gluten sensitivity and very possibly celiac disease. 

 

She drinks almond milk.

We try very hard to not eat glutened food because she has the horrific stomach aches , vomiting, diarrhea.

After such episodes she is grey in pallor,  sweaty and exhausted and she almost passes out (must sleep)  for hours. 

She has infrequently the neuropathy in her hands and arms.

Also , she used to hear whispering, or what she claimed to be whispering.

(She is now in her late teens, and is claiming the whispering was in fact , our neighbours talking.

So for me, it is hard to judge what did actually hear [that I am slightly hard of hearing, does not help in this situation] ... incidentally, the whispering occurred only in our home.)

 

Ok so back to the core of my asking for help.

Our family doctor claims that for her to show up celiac positive (and by default wheat allergic),

she dos not need to gluten herself at all.

Ditto for the lactose intolerance test. 

He is saying to do nothing and just show up for the blood draw(s). 

 

From the posts I have read , a person has to be glutening themselves for at least 3 weeks if not 8 or more. 

 

Regarding the lactose intolerance, I am not sure, I need to do more research. 

 

If anyone can shed some light on this, I would be immensely grateful.

 

Thank you, L. 

[StephanieL]

Celiac Disease and an wheat allergy are NOT the same and the testing is not the same.  

Have you visited an allergist?  How soon after gluten consumption do these things happen?  If they are within 2 hours of ingestion then it is more likely it's an allergy and they you should get epi pens and be sure everyone who takes care of her knows how to use them.

It is true that gluten must be consumed to do the Celiac blood work.  The only test that can be done (which is NOT diagnostic, just as supportive info for a dx) is the genetic testing.

[Kurzemiete]

Thank you for your reply, it is much appreciated  .

 

It corroborates some of what I know or suspect.

 

Yes, we have visited an allergist who performed the skin prick, and it was a waste of time,

and I realized how little they know about these issues. 

 

Her reactions happen within minutes to hour(s), and goes for day or days, it seems to vary.

 

Can you refer me to any site that talks about strictly wheat allergies and testing for it?

 

I will look for one myself,  but, we are also in the middle of a packing for a move,

so the testing and timing is less than ideal. 

 

In Canada, there are no genetic tests available ( as far as I know, I had looked into it years ago) . 

I would have to send away for it.  

 

And as you said, it's not admissible as diagnostic evidence. 

[Kurzemiete]

* I mean to say a site that talks about the differences between gluten allergy and celiac disease* 

[StephanieL]

I don't know if there is a specific site to tell you the difference but here is what I know (we have both Celiac disease as well as other food allergies).

 

Celiac is an autoimmune disease. Gluten causes the body to attack itself causing intentional damage which means problems with nutrition and all the other 300 symptoms of Celiac Disease. There is a Celiac panel that includes 4 tests that the person MUST be consuming gluten to have done. IF the blood work is positive then they usually want to do a follow up biopsy for confirmation of the condition (they look for microscopic villi damage). 

 

Wheat allergy is when the body causes a release of histamine and other substances when the food protein ingested is seen as dangerous and the body attacks it.  Symptoms can include vomiting, diarrhea, breathing difficulties, skin issues (hives) and so on.  These reactions happen from immediately up to 2 hours after ingestion. Reactions can be fatal, hence the need for epinephrin. Testing for a wheat allergy can be done via a SPT (which you mentioned having) or blood testing.  Allergy testing is NOTORIOUSLY inaccurate.  There is up to a 50% false POSITIVE rate with these tests which is why it isn't recommended to test unless there has been a reaction (which I very much sounds like you've had!)  

 

Hope that helps a little. Getting ready for bed time here so I'll come back if there is anything more specific I can help with.

 

This may help:

 

Open Original Shared Link

[kareng]

Here is some info from actual medical doctors that your doctor might look at

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

[Kurzemiete]

Thank you so much everyone for your advice and links. 

 

This is frustrating and so much learning to do.

 

I have the books out, BRAIN GRAIN and also WHEAT BELLY TOTAL HEALTH.

 

According to the first book (the second book I haven't gotten far) ,

all grains ad even carbs (obviously sugars, processed food and additives etc) are harmful,

even to non celiac community. 

 

L.

[Kurzemiete]

I don't know if there is a specific site to tell you the difference but here is what I know (we have both Celiac disease as well as other food allergies).

 

Celiac is an autoimmune disease. Gluten causes the body to attack itself causing intentional damage which means problems with nutrition and all the other 300 symptoms of Celiac Disease. There is a Celiac panel that includes 4 tests that the person MUST be consuming gluten to have done. IF the blood work is positive then they usually want to do a follow up biopsy for confirmation of the condition (they look for microscopic villi damage). 

 

Wheat allergy is when the body causes a release of histamine and other substances when the food protein ingested is seen as dangerous and the body attacks it.  Symptoms can include vomiting, diarrhea, breathing difficulties, skin issues (hives) and so on.  These reactions happen from immediately up to 2 hours after ingestion. Reactions can be fatal, hence the need for epinephrin. Testing for a wheat allergy can be done via a SPT (which you mentioned having) or blood testing.  Allergy testing is NOTORIOUSLY inaccurate.  There is up to a 50% false POSITIVE rate with these tests which is why it isn't recommended to test unless there has been a reaction (which I very much sounds like you've had!)  

 

Hope that helps a little. Getting ready for bed time here so I'll come back if there is anything more specific I can help with.

 

This may help:

 

Open Original Shared Link

Can you please tell me which Celiac tests are mandatory, besides the dreaded biopsy? 

 

According to this book the doctor suggest these ones as well :

1-Cyrex array 3

2- Cyrex array 4 (he sites this as optional)

 

I know that the standard blood test run by my GP will be very limiting.

So, I probably need a referral to a hospital in order to get the entire panel done.

Hopefully, the Provincial health insurance will cover them at the hospital. 

 

Thank you

[cyclinglady]

Here is a list of the celiac tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

NVSMOM (you can search some of her threads) is a great source since she lives in Canada. She is a forum moderator and is on often but she is taking time to enjoy summer and her family!

There is a lot of controversy regarding the validity of the Cyrex tests. You can google to find out. Leading celiac experts do not endorse these tests.

Open Original Shared Link

I hope this helps!

[Kurzemiete]

Here is a list of the celiac tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

NVSMOM (you can search some of her threads) is a great source since she lives in Canada. She is a forum moderator and is on often but she is taking time to enjoy summer and her family!

There is a lot of controversy regarding the validity of the Cyrex tests. You can google to find out. Leading celiac experts do not endorse these tests.

Open Original Shared Link

I hope this helps!

I really appreciate that cyclinglady 

(my bike is many times my salvation

 

Thanks very much. 

 

AI stuff is a real ..ummm "      " ...you know?

Not very nice at all. 

 

Happy Summer and, thank you for the tip re NVSMOM  

 

L.

[Kurzemiete]

OK sorry , one more question here:

 

To have a Gluten test done properly, my daughter must be on it at least how many weeks?

 

I am confused because, I get anywhere from 3-12 weeks, depending on what source I go to. 

 

Thank you again. 

[cyclinglady]

You are right. There is no exact consensus on how long a gluten challenge should last.

Open Original Shared Link

Open Original Shared Link

Sorry, but I can not answer your question!

[Kurzemiete]

You are right. There is no exact consensus on how long a gluten challenge should last.

Open Original Shared Link

Open Original Shared Link

Sorry, but I can not answer your question!

Thank you very much for the links, and your help cyclinglady.

It is greatly appreciated. 

 

Now it is to see what happens once the test results  are back.

And, I am so concerned of the reactions to her glutening herself . 

 

I wish you a happy Summer and happy trails    !

 

L.

[Kurzemiete]

Here is a list of the celiac tests:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

NVSMOM (you can search some of her threads) is a great source since she lives in Canada. She is a forum moderator and is on often but she is taking time to enjoy summer and her family!

There is a lot of controversy regarding the validity of the Cyrex tests. You can google to find out. Leading celiac experts do not endorse these tests.

Open Original Shared Link

I hope this helps!

Dear Cyclinglady , I would like to run this by you one more time so I know which tests to request of the Doctor.

 

My daughter is going  in a few days.

 

Do I request all of the tets you mentioned,

or should I leave out the last one?

*-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests*

 

Thank you so much.

[cyclinglady]

The AGA tests are old, but I think some doctors are still using them. Better to get the Aniti- Deamidated Gliadin Peptide (DGP) and both IGA and IGG versions. I know that the the Anti-tissue transglutaminase (TTG) tests (both IGA and IGG versions) are superior in terms of catching celiacs, but I always test negative. Weird, but true. The DPG IGA was the only test that was positive and I had moderate to severe intestinal damage. So, my family gets the entire panel each time.

Good luck!

[Kurzemiete]

The AGA tests are old, but I think some doctors are still using them. Better to get the Aniti- Deamidated Gliadin Peptide (DGP) and both IGA and IGG versions. I know that the the Anti-tissue transglutaminase (TTG) tests (both IGA and IGG versions) are superior in terms of catching celiacs, but I always test negative. Weird, but true. The DPG IGA was the only test that was positive and I had moderate to severe intestinal damage. So, my family gets the entire panel each time.

Good luck!

Thank you very mcuh    !

 

We will request or if we must, insisit, on them all

 

Really appreciate yours and others' imput,

this is overwhelming and yes, scary.

 

Plus we are moving,

so as in life,

timing is hardly the best

[Kurzemiete]

So we have some updates I would like to report and again to ask for your advice, dear forum members:

My daughter is on  the Gluten challenge for approx 7+ weeks and she is very eager to have it done with, and so am I !

When I presented all of the tests that Cyclinglady showed me, the DR at the walk in clinic said they only do

-immunoglblulin GAM (IgA, IgG, IgM)

-CRP

-ESR

He also suggested the following tests:

ALT, Alk phosphate, Vit B12, Ferritin.

The Dr. Prescribed for her Naproxen (which she did not fill out).

He said the rest of the test are to be performed at hospitals.

Unfortunately, it seems this is not as straightforward as i had thought. The DR who refers you to the lab at said hospital, must have working privilege at that hospital. I have called and left messages explaining we need a pt DR for this very reason and we have a steady GP (who does not have privileges at the hospitals), and could they please make an exception etc, etc. Now I wait for a call back.

Ok so , next is to tell you that one homeopathic clinic, it sent me a list of tests they can do :

Celiac disease Panel (Panel 60): Deaminated Gliadins IgG & IgA, Anti-Tissue transglutaminase IgA, Total IgA.

The tests at the lab are for money but i am ok to pay, i just want her to be done with  the suffering and find out the results already.

But again, the complications re the naturopathic clinic: must have a thorough consult with a DR there, and if they recommend it, then we can get the tests...Sorry, this is just NOT ACCEPTABLE TO ME.

Can someone please have a look at the two panels of tests

and offer an opinion if this is sufficient or if I should still insist on the entire panel as suggested.

(In the astounding, and really EYE opening and sobering  book 'Grain Brain', by Dr. David Perlmutter, he states that (and this is news to me re the 12 sub units)

'A person may be sensitive to either of these proteins [found in gluten: glutenin or gliadin; italics mine] or to one of the twelve different smaller units that make up a gliadin. Any of these could cause a sensitivity reaction leading to inflammation.'

Thank you so much,

L.

[cyclinglady]

Ugh!  You really need some advice from an Canadian resident!  NVSMOM is terrific and she should be on soon.

Sorry my response (format and typing)  is messed up, but the new forum has had its update launch issues and I do not have time to figure it out! 

How much is the consult?  Because those are the needed tests.  I have not clue as to what the other walk-in clinic was willing to order.  Looks like allergy testing and if your daughter has some deficiencies (iron stores = ferritin) then maybe they'll recommend celiac testing.

The voices?  Does your daughter have schizophrenia?  Dr. Alessio Fasano of Director of the Center for Celiac Research at Massachusetts General Hospital Harvard Medical School has talked about clinical cases of those children with schizophrenia or autism may benefit from a gluten free diet.  Again, we are talking clinical.  Science to support is not here yet.

The Grain Brain?  Nice theories, but this doctor has very little peer research.  Plus, he sells not just books, but supplements on his website, etc.  Is he a quack?  Some say yes and others say he is ahead of his time.  But personally, I think there is no one way of eating that is right for everyone across the board!  Dr. Fasano sells books too.  But he does have tons of peer reviewed published research.   He is respected by other celiac disease researchers around the world.  Best to find published studies for your research.  I would personally never mention this book when I went in asking for testing either. 

I hope you figure it out! 

 

 

[Kurzemiete]

Thank you and likewise pardon my bold and not bold because as you said, they have modified this format.

I appreciate your feedback.

 

I just off the phone with our family DR (GP) and he maintains that the former test, it is sufficient.. and when I did ask if he knows of a private clinic that does the 'comprehensive gluten panel' testing he basically parroted back the words, re any walk in lab is adequate. So much for that...

The three hospitals all have same policy: must be patient in order to have use of their labs (grrrrr!)

One hospital is having some special admittance policy of new patients (wish some special criteria? not sure what that is even..)

and  I left them a comprehensive, polite message and I pray they will take on my daughter;

as we just need a DR to facilitate the Gluten testing.

 

I am facing a quandary, I am not sure how to resolve.

 

I left a message at a prestigious (think $$$) clinic; well, they take insurance ( I have none, as I am on disability benefits).

Most things (including visits) are not covered by our provincial health card there.

So, I want to see

1- How much is the preliminary (unnecessary) consult and

2- what kind of and how much do the Gluten panel tests cost there.

 

My daughter is FED UP with feeling terrible and as she puts it ' dumb' (she is in school) , etc. So really she just wants in OVER WITH (so do I, poor kid).

At worst she will have an incomplete Gluten blood panel done:

and that really greatly irks me, because we are a first world country and why should it be a problem, if i pay for these test to have the done? 

We need all the possible comprehensive answers we can get, she deserves that and so do I.

 

My daughter never heard voices, however, she in the past heard what she described as whispers, which have abated since we try had to be as gluten-free as possible. And only in our former apartment (odd); maybe it was neighbors? Not really sure.

But of course neurological issues are so prevalent with gluten consumption it is scary.

 

I hope so too, that the Canadian lady you mention, NVSMOM, could pitch in here.

 

Thank you,

L.

[Kurzemiete]

Ok I have an update from one of the lab technicians, in response to my letter to him.

 

' I have added the abbreviation to our test menu to make it more clear to you. (I didn’t recognize AGA IGA and AGA IgG)

We offer EMA separately it cost $71.26

 

 

Celiac disease Panel (Panel 60):

1.        Deaminated Gliadins IgG & IgA (DGP IgA)

2.        Anti-Tissue transglutaminase IgA(tTG)

3.        Total IgA (control test) we don’t offer total IgG as part of this panel '

 

'