Could Inheritance From Both Sides Of Family Affect Blood Test?

[Pegleg84]

Hello all,

In the past few years, cases of celiac have been cropping up all through my family, on both my mother and father's sides. First was my aunt, who only found out after being diagnoses with Thyroid cancer (which was likely caused by her having undiagnosed celiac). An aunt and uncle on my father's side also found out they have it. My mother and sister also found out they have it. My mom had a positive blood test and biopsy. My sister's blood test was negative, but her biopsy (done because she was suffering severe stomach ulcers and horrible depression) was positive. I had the blood test done about a year ago and it also came back negative, though I think I have a least some symptoms that could point to celiac.

My mom read somewhere that because the disease is inherited from both sides of our family, certain antibodies, or genes, or something, could have interfered with my sister and my blood tests? Has anyone else had a similar experience?

Also, knowing that it is still possible that I have celiac, should I convince my doctor to get a biopsy done (he's pretty skeptical), go on the diet and see what happens, or wait and see if more symptoms present themselves?

I'll add more details later, but if anyone knows about the genetic thing, that would be great.

Thanks

Peggy

[Tallforagirl]

...My mom read somewhere that because the disease is inherited from both sides of our family, certain antibodies, or genes, or something, could have interfered with my sister and my blood tests? Has anyone else had a similar experience?

Also, knowing that it is still possible that I have celiac, should I convince my doctor to get a biopsy done (he's pretty skeptical), go on the diet and see what happens, or wait and see if more symptoms present themselves?

I'll add more details later, but if anyone knows about the genetic thing, that would be great.

Thanks

Peggy

With the symptoms and all those relatives with celiac disease, I'd be pushing for a biopsy regardless of the blood test result. Did they do the full panel including total IGA? If you're IGA deficient this will affect some of the other tests.

I've never heard of genes affecting blood test results. The blood tests look for antibodies, both to gliadin (the protein found in wheat gluten) and to your own tissues.

It's likely, but not definite that your father has a celiac disease gene (would only be definite if confirmed with a genetic test), so it's also possible that you don't have the gene.

You could get a genetic test, and if negative, it means that you have virtually no chance of ever developing celiac disease.

[ravenwoodglass]

I have never heard of the idea that inheriting the same gene from both sides contributes to a frequency in false negatives. I would be very interested in more info on this, for reasons obvious in my signature. Do you have any links to this? I do know that when we have double copies of the same gene the presentation seems to be more severe.

As to yourself, with the strong incidence of celiac in your family chances are pretty good you have an issue with it also. You do have the option of a biopsy, I would make sure your doctor knows of the person who also had negative bloods but a postive biopsy. Or you could just go gluten free and see if your issues clear up.

[Pegleg84]

thank you so much for the prompt reply.

I don't actually know where my mother got this (obviously misuderstood) information, but I thought I'd at least put it out there. we don't know if my father actually had the disease or gene, as he passed away several years ago, but it does obviously run in his family.

I am still quite young (25) and don't have obvious symptoms, but I do suffer from increasingly frequent bowel pain and discomfort, am developing sensitivities to foods such as raw onions and garlic, suffer from depression and anxiety, often feel weak and thought that I could have a vitamin B12 or Iron deficiency, but all my blood tests show the levels to be normal.

I have only had my blood tested for celiac once, and would like to get it done again to check if it wasn't just a fluke. I am hesitant to get a biopsy done this early in the game, wondering if there would have been enough damage as of yet to show positive results? (am I old enough for that?) I also don't want to go on the diet, and then later go back off for a biopsy, as my mother ended up with dermatitis when she did the gluten challenge for her biopsy. Also, my family doctor doesn't know a lot about Celiac and doesn't think that other conditions could be related.

anyway, thank you for clearing that up. I have many more questions to ask but will put them under other subject headings.

thank you

Peggy

[ravenwoodglass]

I am still quite young (25) and don't have obvious symptoms, but I do suffer from increasingly frequent bowel pain and discomfort, am developing sensitivities to foods such as raw onions and garlic, suffer from depression and anxiety, often feel weak and thought that I could have a vitamin B12 or Iron deficiency, but all my blood tests show the levels to be normal.

Peggy

From this you are actually quite symtomatic. You may not have daily D, yet, but your system definately seems to be being impacted. As to the B12 levels, those can look normal for a long time after you stop being able to actually use the vitamin in your system. Sometimes it is helpful to look at the test ranges over time. Many times we will see the number go down but it will still be in the 'okay' ranges. I had a doctor tell me mine was fine when I had dropped down to 210 from a 550 a year before. 210 is barely into the range and I was definately having issues but since it was still in the range he thought nothing of it. My neuro saw that and immediately had me take sublingual B12, which helped a lot even before diagnosis. You mention sensitivities to onions and garlic, for me I thought I had issues with tomatoes. Of course since whenever I had tomatoes it was with gluten, in the form of pasta, or croutons on a salad, or the bread in the sandwich I never thought it might be what I was eating them with. Depression and anxiety are really common with celiac when it is impacting the brain. It can be years before the real nasty gut stuff sets in but by then our lives can be severely impacted by those neuro effects. With your family history I really hope that after you are done with all the testing you choose to do that you give the diet a good strict try.

[gfb1]

Hello all,

In the past few years, cases of celiac have been cropping up all through my family, on both my mother and father's sides. First was my aunt, who only found out after being diagnoses with Thyroid cancer (which was likely caused by her having undiagnosed celiac). An aunt and uncle on my father's side also found out they have it. My mother and sister also found out they have it. My mom had a positive blood test and biopsy. My sister's blood test was negative, but her biopsy (done because she was suffering severe stomach ulcers and horrible depression) was positive. I had the blood test done about a year ago and it also came back negative, though I think I have a least some symptoms that could point to celiac.

[snip]

just for fun; your pedigree is located Open Original Shared Link -- minus the 'aunt' whose relationship is not defined... you are the 'P' (00106), your dad is the '?' (00102). 'plus' signs indicate a postive test of some kind...

part of the problem with diagnosis of celiac disease is an extremely variable age of expression. at least in part, this has to do with familial dietary habits (i.e., how often do you eat bread/pasta...). though, genetics clearly plays a role.

btw -- genes ALWAYS influence blood test results. just maybe not in the way we think/expect. also, a 'negative genetic test' does NOT mean you have no chance of developing celiac disease. 1st, there is no true genetic test for celiac disease. 2nd, if you do not carry one or all of the celiac-associated MHC haplotypes, you may still have a wheat/gluten allergy and/or intolerance. be careful out there.

my sense of the universe is that you should NOT get a biopsy until your tissue transglutaminase and/or endomysial antibodies are positive -- as these test results are indicative of intestinal damage. not sure what you mean when you say your sisters blood test was 'negative' and biopsy 'positive'. what blood test; what biopsy?

also, since celiac disease is a disease of malabsorption -- it would not be unusual to have other deficiencies (esp., iron or other +2 metals).

[Pegleg84]

That is really interesting, especially that your B12 (and i'm guessing iron as well) levels could look normal on blood tests but not be absorbed by your body properly anyway. I did have low iron once several years ago, must have been about 17 or 18, and have been taking supplements regularly or occasionally since. I can tell when I don't have enough iron in my system cause I get shaky, or at least thats the first thing I take when I do get shaky.

I will get blood work done again as soon as I can, just to double check. I have been eating gluten quite regularly all my life. Bread, pasta, etc etc.

My sister's case was a pretty horrible one. She was suffering from extreme anxiety and depression, along with stomach ulcers that made her incapable to keeping food down. she lost a ton of weight. she already had countless food allergies. we suspected she could have celiac so were surprised when the blood test (the IgA, etc, i'm assuming, though I don't know the exact details) came back negative, but we already knew that a negative blood test did not necessarily rule out the disease. They did a biopsy mostly to check on the state of her stomach lining due to the ulcers, and it also showed damage to the vili. she's been on the gluten free diet for several months now and is feeling much better.

I should also mention that I've been mostly vegetarian for the past 2 years, which could be affecting the amount of certain nutrients I'm getting. I try to get enough protein in my diet, and still eat fish, but obviously that is not causing the stomach problems.

the acidity thing might be causing problems too, like tomatos in spaghetti sauce, etc.

i've also been having problems with hemoroids, which i don't know if it has any connection, and totally have that "sitting on a horse" feeling in my butt and legs, though I figured that was from being to lazy.

again, thanks for all the help. I guess I'll still be sitting on the fence for a while though.

[Pegleg84]

just for fun; your pedigree is located Open Original Shared Link -- minus the 'aunt' whose relationship is not defined... you are the 'P' (00106), your dad is the '?' (00102). 'plus' signs indicate a postive test of some kind...

Here are my known family members with celiac:

Mom - (50's) found out over a year ago, but has obviously been suffering latent symptoms for years. has a benign growth on her petuitary gland that's linked to her thyroid count.

Sister - (22) found out a year ago, after sudden trauma onset

Mom's sister - (50's) found out a few years ago, after developing and sucessively fighting Thyroid cancer, likely caused by years of untreated celiac damage (at least one of her daughters also has celiac)

Father's brother - (50's) found out a few years ago

Father's sister - (late 40's) found out a couple years ago, dermatitis problem as well

for statistics sake, there were 7 children on my mom's side, 6 on my father's.

It's quite possible that my mom's father has it as well, but refuses to get tested.

we think that my father's father may have had it (passed away).

so, with my aunt, we know first hand the consequences of untreated celiac disease, and are making sure any other cases are caught early.

[nora-n]

In case of celiac on the family, the strongest risk for being celiac is having a family member with celiac, then second is having a celiac gene.

HLA DQ Genes only account for about 40% of the risk.

(the celiac gene tests only check for HLA DQ2 and HLA DQ8 but 6 % have half genes and 0,4 % have other genes)

The celiac blood tests are designed to only turn positive when there has been a lot of damage to your intestines.

this has to do with the social security laws in europe, because we here in many places i Europe get a lot of money from the social security if diagnosed celiac. They apply the same strict rules to the rest of the world.

In early celiac, the tests will probably be still negative.

[Pegleg84]

The celiac blood tests are designed to only turn positive when there has been a lot of damage to your intestines.

this has to do with the social security laws in europe, because we here in many places i Europe get a lot of money from the social security if diagnosed celiac. They apply the same strict rules to the rest of the world.

In early celiac, the tests will probably be still negative.

This is interesting, since my mom has been saying that your blood test readings usually don't change, but if it does actually show whether gluten is causing damage to your system, then obviously it could change. In that case, I will get it re-tested as frequently as possible to keep checking.

In Canada, a positive biopsy is the only way you can be a "certified" celiac and get insurance coverage (aka, claim the cost of gluten-free food on your taxes)

I may not be in the deep water yet, but something is definitely happening. I totally can't eat much garlic anymore. ahhh! this makes me sad, cause I love it. But lately even small amounts make my stomach go crazy:cramps, gas, etc. This could totally be another warning sign as my mom has been sensitive to garlic for years, and it was making my sister sick before she went gluten free.

anyway, thanks for the info. signs seem to say, keep on the gluten and keep getting my blood tested.