If You Have Negative Blood Tests, But Respond To Being gluten-free...

[MitziG]

My kids and I were all dx with Celiac after biopsies in April. None of us presented with "classic" symptoms at the time, though I had a childhood that fit the bill plainly. I was reading the biopsy reports today and something caught my attention:

MY report (the GI dx me before the biopsy was rcv'd, based solely on the appearance of my guts. He said it was obvious I had this for a long time, and that damage was severe. But note what the report says>>>

"Prominent villous defect, elongated crypts, surface epithelium contains MODERATE numbers of lymphocytes,, lamina propria contains numerous heteramorphous chronic inflammatory cells, mostly plasma cells and eosinophils"

My blood work was BARELY positive...TTG of 6, with >4 being positive

Now...my DAUGHTER'S bloodwork was more certain- ttg of 26, same values

HER endoscopy looked normal, but the biopsy revealed:

"slight increase in inflammatory cells, slightly elongated crypts, severe villous defect with severe increase in number of intrepithelial lymphocytes"

So...I know the theory has been passed around the board here that silent celiacs may have been fighting gluten so long that the immune system can no longer muster a response. Wondering if part of that "suppressed response" would be indicated by less lymphocyte activity? and thus a lower Ttg? I am not well-versed in the science aspect of all this, or the terminology...but it just seemed interesting to me that my serious visual damage showed only moderate lymphocytes, and a weak positive blood test, while my daughter's less severe damage indicated an immune system hard at work and a much higher TTg?

Just a theory that could maybe explain the negative serology of so many people on here who very clearly have a problem with gluten. Maybe their bodies are just too sick to even MAKE antibodies?

What do you think?

[Kathy59]

Most of it is too in depth for me to explain, all I know is my blood work was negative for Celiac; I had an endecsopy (sp) prior to blood work and nothing was found (but not sure even looking for) at time was sent due to B12 deficiency, but they were not looking for Celiac....treated for active mono, EBV, Chronic Fatigue Syndrome, some improvement, but still had chronic Poops...LOL! Gene test for Celiac and there it was full blown. I would just say if gluten-free lifestyle works then do it. I once had a dr tell me...test results are only has good as the test ordered!

[beebs]

That is a very interesting theory - I am no help because I haven't had the biopsy - but I have had completely negative bloods, but my reactions are so severe that they are considered life threatening. I have always wondered how that is possible - how can I test negative when if I eat gluten I get intussusception and am rushed to emergency. It just doesn't make any sense to me.

[SarahJimMarcy]

My blood test was negative. I went gluten free with my daughter and within two days felt better. Months later, the doctor, in all his wisdom, thought I should go back on gluten for two months so they could do an endoscopy. I wouldn't do it. They did the genetic test which came back positive. The genetic test is just a blood draw and it was covered by insurance. Could consider going that route.

[pricklypear1971]

I had stomach issues when I was a kid. Ulcers at 9, stomach aches at 18 (and more ulcers). Weird stomach cramping/D in my mid 20's. Abdominal pain in late 20's (suspected endometriosis).

After my son was born - nada, except I'd get stomach "bugs" easily and mysteriously eat something "bad" once in a while. But, my thyroid tanked. Got thyroid meds.

Thyroid meds worked for the most part for about 5 years. Then I broke out in that dang rash.

I think the escalating symptoms (and lack of stomach issues - or D turning to chronic C) was my body giving up on one method of attack (GI) and turning to something else (skin, neuro).

So, yes, I think Celiac evolves and changes over time.

[MitziG]

  On 1/18/2012 at 2:13 PM, SarahJimMarcy said:

My blood test was negative. I went gluten free with my daughter and within two days felt better. Months later, the doctor, in all his wisdom, thought I should go back on gluten for two months so they could do an endoscopy. I wouldn't do it. They did the genetic test which came back positive. The genetic test is just a blood draw and it was covered by insurance. Could consider going that route.

Good for you! I wouldn't do it either! You shouldn't have to have a test verify that something makes you sick! I wish more doctors would just dx based on symptoms when blood tests and/or biopsies don't always show the true picture. Though in my case, I am grateful for the tests, because I had no idea gluten was a problem for any of us. I had some stomach issues from time to time, but like the above poster, always chalked it up to "eating something that didnt agree with me." My reaction was definitely never something that I would have connected to gluten. Now, after having been off gluten almost 10 months, I have a very obvious reaction to it, very quickly, so I guess that means my immune system is recovering anyway!

[UKGail]

I know of one celiac specialist who also thinks that long-standing celiac disease may result in sero-negativity.

You might also find the following link about sero-negative celiac disease useful. It is not completely disheartening. There are some doctors who are thinking about this issue.

Open Original Shared Link

Prickly - my journey is pretty similar to yours except I don't get DH, but had other things too. I agree with your feelings about the development of Celiac, that it gets worse, and presents in new ways if ignored for too long.

[pricklypear1971]

  On 1/20/2012 at 6:21 PM, UKGail said:

I know of one celiac specialist who also thinks that long-standing celiac disease may result in sero-negativity.

You might also find the following link about sero-negative celiac disease useful. It is not completely disheartening. There are some doctors who are thinking about this issue.

Open Original Shared Link

Prickly - my journey is pretty similar to yours except I don't get DH, but had other things too. I agree with your feelings about the development of Celiac, that it gets worse, and presents in new ways if ignored for too long.

Great link.

I've said it before and I'll scream it from the rooftops...the problems are the tests.

I have an easier time accepting this since I have thyroid disease, which is notorious for bad tests.

[BrittLoves2Run]

  On 1/18/2012 at 6:36 AM, Kathy59 said:

Most of it is too in depth for me to explain, all I know is my blood work was negative for Celiac; I had an endecsopy (sp) prior to blood work and nothing was found (but not sure even looking for) at time was sent due to B12 deficiency, but they were not looking for Celiac....treated for active mono, EBV, Chronic Fatigue Syndrome, some improvement, but still had chronic Poops...LOL! Gene test for Celiac and there it was full blown. I would just say if gluten-free lifestyle works then do it. I once had a dr tell me...test results are only has good as the test ordered!

I'm jumping in late.. but what does the Gene test...for lack of better words "show" or "prove" that are different from the Celiac panel? I'm a newbie and I really don't know!

[Metoo]

  On 1/20/2012 at 6:36 PM, BrittLoves2Run said:

I'm jumping in late.. but what does the Gene test...for lack of better words "show" or "prove" that are different from the Celiac panel? I'm a newbie and I really don't know!

A gene test would show that you carried genetic markers that show that are at an increased risk for having celiac. Unfortunately it does not prove whether you do or don't have celiac.

[stanleymonkey]

my daughter was positive genes, negative blood, and WAS doing great diet wise, so was given a tentative diagnosis of celiac and or nerve damage to her bowel.

I have negative blood, vintage been wait g gluten lite as I don't eat gluten around my daughter bandage noticed I feel enter so has my husband