Contemplating Just Getting The Genetic Test For Now

[PattyBoots]

Hi, y'all, I'm new here (d'oh)

I'm a self-employed, self-pay insurance person (with $5K per person deductible, YIKES) and was thinking a little winnowing, so to speak, would be in order before I went for the rest of the tests. Here's why I think I might have celiac:

1. My paternal grandfather was "came through Ellis Island" Irish at the turn of the century.

2. My maternal grandfather was first-generation Irish (though there's not much records behind that due to being late-1800s coal field trash in West Virginia).

3. My mother was taken from Northern Virginia to Philadelphia in 1966 on a mattress in the back of my grandparents' station wagon because no ambulance company would take her because they were sure she would die on the way. She was diagnosed then with Ulcerative Colitis and had her entire colon removed, was fitted with a colostomy bag, and then in the 80s had a Koch pouch formed. She died in 2007 of, basically, a heart attack from the malnutrition she'd suffered over those 40+ years of inability to eat and being 5'5" and anywhere from 60 to 95 pounds. She also, between her marriage at 19 in February 1960 to my birth in October 1964 had 3 live births (myself included - d'oh) and 5 miscarriages.

4. I had to beg to be diagnosed with Hypothyroidism - around here all they want to do is check for diabetes (my fasting sugar has never been above 80), high cholesterol (mine is 196, but with the good cholesterol nearly as high as it can be and my bad as low as it can be and my triglycerides at 40). Eventually I went to a local health fair, paid $35.00 for a blood test and voila! I was diagnosed with thyroid and the endo couldn't figure out how come it took so long to get diagnosed because I was so sick.

5. I've had rashes off and on for years - I went to several dermatologists, one of which looked at my rash and said, "Oooh...nasty rash. Bet it itches." I told him yeah, it itches. BAD. What is it? He just shrugged his shoulders and said he had no idea, but here was some ointment so try that. I went to another who diagnosed eczema and more ointment. At least that ointment relieved the symptoms somewhat.

6. We've always been "gluten-light" in that our preferred starch is potatoes. Without beer, I pretty much ate a 90% gluten-free diet naturally. It's probably been 4 years since I've eaten a doughnut, and I've been known to bake a pan of brownies, forget about them, and then throw them away all fuzzy without a bite having been touched.

7. For months now, I've been having what would charitably be called "unspecific bowel problems" in that I've had a lot of "D", and a lot of bloating and gas. The worst was the other night when I decided to have pasta with our stirfry instead of rice - the next day I laid in bed and cried and was in the bathroom on the order of seven times. Then I got to thinking about before, when one night at some friends' house I ate a bunch of cake because that was the only thing edible (she's a HORRIBLE cook, LOL) and the next morning I had the runs something fierce.

I've been diligently gluten-free for over a week now, and do feel better; though I wonder if it's a psychological thing.

Oh, and I HATE (and no, it's not too strong of a word) corn tortillas. They're slimy and flimsy and just ICK! I really hope this isn't my problem.

But, back on point - I thought I'd get the genetic test done so I could go to a doctor and say HERE. They hate well-educated, well-informed people anyway.

Sorry for the long post, but it sure does feel good to get that off my chest

I guess my question is - is it a valid point for me to do the genetic test? Am I at risk? I believe I am. But if the markers come back negative, then I'd also have somewhere to go with my "gut" problems.

[GFinDC]

Well, the genetic tests are ok to do, but they won;' tell you if you have celiac disease. just that you could develop it at some point.

Open Original Shared Link

There is a test called BioCard test available in Canada for $50 bucks that might work. If you could get hold of it that is.

There is also a saliva test that may be available soon.

https://www.celiac.com/articles/21677/1/Sim...ease/Page1.html

Then there is the gluten-free diet, which is the cheapest and works really well if you have obvious symptoms.

There are also blood tests for antibodies, and an endoscopy could be done.

https://www.celiac.com/categories/Celiac-Di...252dFree-Diet)/

I think the saddest thing about celiac disease is no more green beer on St. Paddy's Day, don't you? Oops, my Irish ancestry is showing a little..

Welcome to the forum!

[PattyBoots]

Well, the genetic tests are ok to do, but they won;' tell you if you have celiac disease. just that you could develop it at some point.

Open Original Shared Link

There is a test called BioCard test available in Canada for $50 bucks that might work. If you could get hold of it that is.

There is also a saliva test that may be available soon.

https://www.celiac.com/articles/21677/1/Sim...ease/Page1.html

Then there is the gluten-free diet, which is the cheapest and works really well if you have obvious symptoms.

There are also blood tests for antibodies, and an endoscopy could be done.

https://www.celiac.com/categories/Celiac-Di...252dFree-Diet)/

I think the saddest thing about celiac disease is no more green beer on St. Paddy's Day, don't you? Oops, my Irish ancestry is showing a little..

Welcome to the forum!

My whole point is that I'd like to know, as you say, if I could "develop it at some point," as I am loathe to run to a doctor and ask to be further tested for it if I don't have a genetic disposition for it. Particularly since I don't have a lot of faith in doctors due to their constant misdiagnoses of family members, from telling my mother she had "post-menopausal vapors" when she actually had bone cancer, to screwing up my father's cancerous kidney removal, to misdiagnosing my aunt's lung cancer. Oh, and all of this by Washington, DC/Northern Virginia physicians, as I'm sure you will appreciate.

The green beer never appealed to me - it always looked gross. But I have already found that Redbridge ain't bad. Just a little heavy and sweet for my taste. It reminds me a lot of my husband's homebrew.

[Jestgar]

There is/are no known 'Celiac' genes, just genes that are associated with it. Evening knowing you have one of the markers doesn't mean you'll eve get the disease. It's like having a mailbox, there may, or may not. be mail in it. And a lot of people have them.

[happygirl]

The only way to truly know if you have Celiac is to go back on gluten, and then have the blood tests/biopsy.

The genetic test can tell you if you have one/both of the associated genes. But about 1/3 of the American population has one/both of the genes, so just having the gene doesn't equal Celiac.

A positive gene test and improvement on the diet can be a useful tool.

However, many people find they do better on the gluten free diet, regardless of testing.

[eringopaint]

I tested positive for the 'celiac gene' but since my diet was so low in gluten when I finally saw the specialist (waited 3 months for an appt) that my blood test was negative. The endoscopy was negative too (I had to wait an additional 2 months for that).

According to my Dr I don't officially have celiac disease.

What I do know is that gluten makes me very very ill.

My mother and grandmother both died of stomach cancer --- I am betting they had celiac too.

I choose to live gluten free, regardless of what a test or Doctor says, since I feel a thousand times better with no gluten in my body after years and years of being ill. Thyroid disease, migraines, bone pain, rosacea, psoriasis, loss of tooth enamel, yrs of exhaustion, daily D, nerve pain, tingling & numb hands, mood swings, vitamin D deficiency, etc etc. all of which have drastically improved in one year of eating totally gluten free.

I think the ultimate test is how you feel when you eat gluten - and how you feel when you don't!

I say this all the time - to me gluten = poison.

Good luck,

erin