Getting Loved Ones Tested

[printmaker81]

Hi all,

I tried to search for this topic, so I hope I am not reposting. I've seen it come up in other threads, I just thought it might be nice to hear from people who have had success getting their families to get tested.

I was diagnosed about two months ago. Though I don't have much extended family, it's not hard to guess where the gene comes from. My mother has had problems with fibermyalgia (sp?) for as long as I can remember, strange joint and muscle aches, weight problems, and brain fog. Her father died of stomach cancer and her aunt died of bowel cancer. To me, this seems like a shoo in for which parent is a carrier. My brother has also has a sensitive stomach.

Since there's been so much cancer in my family, I'm really worried about my mom. She's nearing the age her father was when he died, but she's one of those people who refuses to get check ups. Since she doesn't have diarrhea every day, she swears up and down that she couldn't have celiac disease. Does anyone have stories or suggestions to share that could be helpful or encouraging in this situation? I could use all the help I can get with her!!

Thanks,

Heather

[KarenCM]

I was diagnosed in November and my immediate family only got tested just over a month ago. I just kept on them about getting testing since they were putting it off then they finally did it. My Mom came back negative and my brother and father haven't got results yet. My Dad goes to the doctor this afternoon so we'll see. I would just tell your family members about the symptoms of Celiac Disease and how much better they could feel after being diagnosed and then going on the gluten free diet.

Karen

[lovegrov]

My children, siblings and father all got tested. My 70-year-old father was positive despite the absence of symptoms. No diarrhea at all.

richard

[Guest Viola]

I've tried for years to get my family to get tested. My mom flatly refuses and now at 79 it's not likely she'll ever be tested. My eldest daughter finally got tested over a year ago now and tested positive. My youngest daughter tried to get tested and the doctor told her he wouldn't bother with blood tests, just go straight to the biopsy. The biopsy was pronounced negative. However, the doctor told her she was being paranoid and was definately NOT Celiac before he did the biopsy. So one would wonder why he didn't bother with the blood test, and how good a job he did on the biopsy. Which ever, I'm not likely to talk her into doing the tests again. My brother is diabetic (2) but has never been tested for Celiac. My sister died a week before her 50th birthday of a brain annerisim (sp) and wouldn't go to any doctor for a check up let alone testing. So ... some luck with Tammy, but otherwise not much luck.

[watkinson]

Hi Heather,

Isn't it the most anoying thing in the world?

When I found out what was wrong with me after sooooo many years of torture, I was thrilled to know it was somthing I could manage and take care of (easily in my mind) just by changing my diet. Although I couldn't understand at first why God would let me suffer so long when it was something relativley simple that would "cure" me.

I finally decided the reason was because if I had found out sooner then maybe I wouln't be so proactive about. Studying and learning as much as possible and being so dilligent about my diet. I probably would have cheated contantly and would have spent the rest of my life not being fully healthy. I figured with my knowledge that I would be the way to "cure" for the rest of my family.

Well......My grandmother had stomach problems and ill health her whole life and died of cancer. My aunt has had every kind of stomach issue imaginable and has been hospitalized several times. She has always been sickly and had polio as a child. My mother has been diagnosed with spatic colon and had her gollblatter out at the age of 25. My sister suffers from stomach problems and now her daughter keeps getting rashes that look like DH. Well.....wouldn't you think that seeing my "cure" and how remarkable it has been would make them all run as fast as possible to the doctor. No!!... I hear denials all the time, I hear how they don't want to know because it would be "too difficult" My sister even took her daughter off gluten for a few days. The rash seemed to get better but my sister said it was too difficult to keep her daughter on the diet!!!!!!!i Isn't that nuts?

I'm sorry I don't have anything encouraging to say other than I keep praying for them. I did get my own daughters to be tested. The younger one has the genetic marker but doesn't suffer, my older daughter has full blown celiacs with fibromyalgia. She and I study about it and talk about it all the time. At least I feel I saved my own, even if the rest won't listen.

Good luck with your mom, I have tried giving her medical articels, even one that explaind the corolation between gollblatter disease and celiacs. I think my mom honestly knows she has it but just won't admit and get tested because she doesn't want to give up the foods she loves. keep us up to date if you discover any way that gets her to the doctor.

Wendy

[Emme999]

I am having no luck getting my family tested either

I *did* finally get my dad to have the test and was completely shocked when it came back negative. His mother is (self-diagnosed) "allergic" to wheat, rye, and barley. He is bipolar, has lots of neurological problems, has thyroid disease, and a ton of other illnesses that all seem to correspond with celiac disease. But, no dice. I often wonder if his doctor somehow messed it up. He is a total A-hole who initially wouldn't test my dad because "Celiac disease isn't genetic" (after I'd told him that I have it). Anyway... his tTG came back low. Supposedly, the doctor also ran the IgA deficiency test, but I kind of doubt it. Unfortunately my dad believes this doctor is somehow god-like. (Even though he's almost killed him a couple of times!) So.. he's not going to be tested again

Although I know that I have it - I don't have the common GI symptoms. My little brother (Mike), however, DOES. When he eats cake, or pancakes, or anything like that he has terrible diarrhea. But ... will he be tested? No. He even told me that he simply doesn't want to know if he has it. He's almost 25 and wants to "live like a normal person." Last night one of his friends was teasing him..."Come on Mike! You know you have it! You're getting glutened right now!" (he was eating a hamburger bun). Mike got ultra-defensive and scowled "I don't have it!! " His friend said, "I think you do, and your response to gluten is that it makes you angry " Ha ha! Probably true

My mom keeps saying that she's going to be tested but I don't think it will ever happen. I've known about mine for about 2 months now and she has yet to make an appointment.

I've told extended family members about it and no one seems interested - even though I've provided them with a nice little packet about celiac and the importance of being tested. Even though my doctor wrote a letter to my family members telling them that they need to be tested..

I don't know what to do either

Maybe I should just stab them all and get enough blood for the tests myself! I think that might be the only way to accomplish anything!

Anyway - good luck to you!!

- Michelle

[Emme999]

Maybe you could show them this: (from a previous post I did a while ago)

Hi there. There is a book called "Dangerous Grains" that deals primarily with gluten intolerance & Celiac. I highly recommend it. I'm quoting the following statistics from Appendix D in the book: "Comprehensive List of Gluten-Associated Medical Conditions". There are 187 conditions listed, so you can just forget about me typing out the whole thing But here are some of the big ones:

(BTW - I'm listing conditions that affect both sexes because I'm sure both will be interested!)

- Abortions recurrent (15% of conceptions in patients with celiac disease end in miscarriages vs. 6% in controls.

- Amenorrhea (38% of Celiacs vs. 9.2% of controls)

-Aphthous stomatitis / canker sores (up to 25% of Celiac patients may have a history of oral ulcerations)

- Arthropathies (26% of celiac disease patients with arthritic symptoms; 41% if still eating gluten vs. 7.5% of controls)

- Insulin Dependent Diabetes Mellitus (10% of all Celiacs develop IDDM, up to 8% of IDDM patients have or will develop celiac disease; many authorities now recommend that all IDDM patients be screened for celiac disease annually for several years after IDDM diagnosis)

- Hyperthyroidism (3.7% of all Celiacs)

- Hypothyroidism (8% of all Celiacs)

- Colitis, microscopic (27% with villous atrophy, 17% with celiac disease-related serology, most with HLA-DQ genetic marker)

- Dental enamel lesions (96% of celiac disease children and 83% of celiac disease adults with celiac-type color and structural defects, horizontal grooves, and/or vertical pits on one or more permanent teeth)

- Dermatitis Herpetiformis (classical non-GI manifestation of celiac disease; 25% without villous atrophy or crypt hyperplasia; instead only minor mucosal changes seen)

- Diabetes mellitus, insulin-dependent (2.6-7.8% of IDDM children have celiac disease - including silent and latent celiac disease, 10 to 100 times higher prevalence of celiac disease than expected)

- Down syndrome (prevalence of celiac disease detected is 1 in 14)

- Dysphagia (difficulty swallowing) (45-50 % of celiac disease patients)

- Abdominal pain (up to 25% of celiac disease patients complain of pain)

- Dyspepsia, esophagial reflux (5% of all such patients with gluten induced duodenal villous atrophy)

- Hyposplenism (10% of celiac disease adults, remits on gluten-free diet)

- Impotence / Loss of libido (19% of celiac disease males are impotent)

- Infertility in both men and women (2.1 million U.S. married couples are infertile - one-third male, one-third female, one third both; 18% of all celiac males are infertile; abnormal sperm is reversed; a 50% increase in conception rate occurs on strict gluten-free diet)

- Lactose intolerance (found in 50% of Celiac patients)

- Liver disease (15 times more frequent in celiac disease; 47 % of celiac disease adults and 57 % of children have evidence of liver impairment; biopsy proven liver damage has been reported in most untreated celiac disease patients)

- Lymphomas (31 to 100 times more common in celiac disease patients; risk returns to near normal with 5 years on a gluten-free diet)

- Menopause (occurs 2-4 years earlier in celiac disease patients)

- 8.5 fold increased risk of death from esophageal cancer

- 31-100 fold increased risk of death from small intestinal lymphomas

- 2.3 fold increased risk of death from all other malignant disease in celiac disease men

- Osteoporosis / Osteopenia (70% of untreated celiac disease patients with low bone density; in patients unresponsive to standard therapies - estrogen, vitamin D, calcium, bisphosphonates, calcitonin; bone density increases by 7.7 percent in 1 year on strict gluten-free diet alone)

- Thyroid disease, autoimmune (up to 13% of all CDs; subclinical thyroid disease may be reversed in some cases within 1 year on gluten-free diet)

---------------

Please note: I only listed conditions that had numerical statistics with them in the book. There are a LOT more conditions that do not have statistics with them. Obviously this doesn't mean that the other conditions are nonexistent, just that they haven't been documented and/or studied well enough.

I hope that was informative for you - AND - that it might help you to see the value of a gluten-free diet (the ONLY treatment for celiac disease).

- Michelle

[printmaker81]

Wow, Michelle, thanks for all those statistics. I had heard that undiagnosed Celiacs were much more likely to develop cancer and was using this to sway my mom. I didn't know that about the menopause -my mom hit menopause a few years early.

My mother's big excuse is that she has bad veins and doesn't want to get blood drawn. How lame is that in the light of all those statistics.

Thanks everyone for the support. It helps me hang in there and keep at my mom.

I think it is crazy how the diet is what scares them out of getting tested, but the risks of going undiagnosed don't seem scary at all.

-Heather

[Guest Viola]

The really funny thing is ... the more of us that get a positive test, the better the diet and life style is going to get. Even restaurants will have to smarten up not to mention the big grocery store chains.

[mytummyhurts]

Good point, Shirley!

My mom has been tested and it came back negative even though I don't believe it because she seems classic celiac disease. The doctor also didn't think the test was necessary (sound familiar?) so I wonder if he even did the right tests. The reason I wonder is because my sister went to the same clinic (but different doctor) specifically to be tested for celiac disease and the doctor didn't even order the right tests. She got all these results about liver, gallbladder, etc. And it didn't even mention celiac disease. So, my family listens, but the doctors are boobs!

If your family doesn't believe you I would recommend Danna Korn's Wheat Free, Worry Free. There are some really good chapters on denial, testing, related disorders, getting doctors to listen, etc. I'm going to have all my family read it.

Good luck!