Test Results Are In

[Claire]

  Rusla said:

Well I just got back from the doctor he said they are considering the test non posiitive for celiac but extremely high gluten sensitivity. Now, a couple of years ago my allergist showed that I tested positive on wheats for allergy and gluten sensitivity then. However my doctor told me perhaps I should go gluten free and in 3 months we will test again for celiac and to make sure I eat and give gluten a chance to digest for that test. He believes it is entirely possible that I am celiac.

Rusla

This is my family doctor, not a GI.

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Methinks your family doctor is confused. That's not surprising - most are. If you are positively not celiac now you won't be celiac in 3 months. If you go gluten free only genetic testing or stook sample testing can tell anything for sure. Blood work will be a negative.

Maybe you need to go higher up the medical nerd chain. Claire

[Rachel--24]

  Claire said:

I can tell you from bitter experience that this is true. I suppose, initially some one food or other starts the process. I suspect that for me that food was gluten. Once the leaky gut occurs all kinds of food particles can go into the blood stream - and the immune system mounts yet another response to each one.  Before long you are reacting to everything. I tested reactive to 30 out of 100 foods tested. The more reactive foods going through the leaky guy the more leaky it becomes until it is like an open door ' won't you all come in'!!! 

Fortunately leaky guy can be healed. Celiac - and gluten sensitivity cannot.  Claire

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I guess what I was trying to say is that leaky gut and villi damage seen in biopsy are 2 different things. Lots of things can cause leaky gut...stress, food, antibiotics...etc. However, you cant *see* leaky gut...it doesnt show up in a biopsy. Believe me, I know what leaky gut is because I have it but I also just had a "pefect" biopsy. Villi damage is caused by gluten while any food intolerance can cause leaky gut...its just not identifiable...except in the leaky gut sugar test.

[Claire]

  Rachel--24 said:

I guess what I was trying to say is that leaky gut and villi damage seen in biopsy are 2 different things. Lots of things can cause leaky gut...stress, food, antibiotics...etc. However, you cant *see* leaky gut...it doesnt show up in a biopsy. Believe me, I know what leaky gut is because I have it but I also just had a "pefect" biopsy. Villi damage is caused by gluten while any food intolerance can cause leaky gut...its just not identifiable...except in the leaky gut sugar test.

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Different to the degree that one comes before the other. If villi damage is present, LG will be present. I understand that leaky gut can be seen and is seen when endoscopy is done to 'confirm' celiac. However endoscopy would not be used to determine leaky guy because there is an easy non invasive way to do that. Gluten is suspected as the primary food cause for LG.

I was diagnosed with the LG problem 15 years ago. Claire

[Rusla]

  Claire said:

Methinks your family doctor is confused. That's not surprising - most are.  If you are positively not celiac now you won't be celiac in 3 months. If you go gluten free only genetic testing or stook sample testing can tell anything for sure. Blood work will be a negative.

Maybe you need to go higher up the medical nerd chain.  Claire

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The problem here is I had a GI 5 years ago who only wanted to do bone marrow tests,he refused back then to believe my thyroid and pernicious anemia were a problem when they did show up in tests, he dumped me and made sure no other GI would see me in the city. My doctor tried to find me another GI but none would see me. When the thyroid showed nodules in my ultrasound and

extreme high antibodies no endocrinologists would see me because they wanted my nodules to get bigger instead of trying to shrink them. My family doctor did try to refer to another GI this week and had listed the fact I have lost 11 teeth in less than 5 years, gained 175 lbs, burning stomach the things that breakout on my face, wrists and upper arms, etc.etc. they said to notify them if the test show something different.

I am so angry with doctors, they don't care and then one of them said I would have to wait more than 24 months to get in to see them.Of course they have tried to blame this constantly on my being post menopausal.

I did not have gluten for two days prior to the test and I wonder if that had anything to do with it, I didn't plan it that way and it just happened that way.

My family doctor is frustrated with them and so am I. If anyone has any other suggestions, I would love to hear them but going to GI or even Endocrinologist is out of the question. They want to see me grow three heads then they will maybe see me.

[Guest Kalynn]

  Claire said:

Where was your test done? Most labs test for both celiac disease and gluten sensitivity (this also has a gene makrer). 

Wheat allergy can be s determined by stool sample test - Enterolab. 

Search out Kimball, Enterolab, Prometheus, Immuno labs - all have websites. 

I believe it is Carrifatih on this forum that has a wheat allergy. Maybe she can tell you how and where she was tested.  Claire

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I was tested thru Prometheus. Everything they tested for is on the top post. I started seeing a new gi doc this week and he told me to stop the gluten-free diet, that it isn't necessary since I tested negative for celiac disease. But I told my husband, something I am doing must be right -- I am feeling so much better. Been gluten-free about a month.

[Guest Kalynn]

  nogluten! said:

I can't remember how to read the numbers, but is your IgA low? If you're IgA deficient, you can have Celiac and never test positive for it. 

Open Original Shared Link

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IgG .8 U/ml

IgA .5 U/ml

TTG IgA .8 U/ml

EME IgA Negative

Total SerumIgA 152 mg/dl

I don't remember what the ranges were.

[Claire]

Replying here to a message above from darlindeb:

I know that some people do believe that non-celiac gluten sensitivity can 'turn into' celiac. . I am not one of them. I can't find anything to indicate that in all the tons of stuff I have read on the subject. It seems to me that the gene marker is a definitve. You have it - you can develop celiac. You don't have it - you can't. Likewise for the genetic marker for non-celiac gluten sensitivity. Certain that 'subset' of celiac can get worse - i.e. more overt symptoms but that doesn't make it celiac.

There are many researchers who think this distinction between the two is less than clear and would like to see some new testing parameters and new terms that would be less confusing. Many with celiac have no intestinal damage. There are non-celiacs who do have intestinal damage. There is a higher occurance of neurological diseases in the non-celiac 'corner' - yet there are some celiacs with that too.

It is confusing and misleading but I am unconvinced that one thing turns into another. I sure have been wrong lots of times. This might be one of them. Claire